Multiple System Atrophy Discussion Forum

Preliminary diagnosis of MSA

Sat, 18 May 2013 09:23:00 GMT

Hello folks,

So a bit of a complicated story here. My Mom, who is currently 63, had a arachnoid cyst removed from the brain back in 2009, which was noticed on an MRI after complaints mostly related to slurred speech, dizziness and imbalance. Following the surgery, her symptoms remained mostly the same and she became quite reliant on a motorized scooter, especially after a pretty nasty fall. Her neurologist maintained that at least her symptoms had not worsened and that after a year or two of no improvements, it was unlikely that she would see any. We saw him off and on since then. I would say that basically she had plateaued, but within the last year my Mom began complaining that her voice was quite soft, her throat felt smaller and there was also some urinary retention issues. About 2 months ago, simply out of the blue, quite vigorous tremors started up on her left arm and left leg together. There are no tremors on the right side. It was really quite scary and so I arranged for my mother to see another neurologist since the once that treated her for the arachnoid brain cyst in 2009 was out of the country. He asked for a new MRI and when he compared it with former scans, he indicated that there was some shrinkage of the cerebellum and gave a diagnosis of MSA in light of the symptoms. He also prescribed Apo-Levocarb for the tremors (which are currently helping which I understand is kind of rare). I did my research on MSA and the diagnosis seemed to fit. He also requested that we immediately seek to remove a breast lump which he considered could be para-neoplastic syndrome. We are in the process of arranging for this to be done.

When my Mom's primary neurologist became available, we went to see him. He, however, did not seem to think the diagnosis quite fit and even pointed out certain scans of the MRI which showed that the cerebellum looked perfectly healthy. After conferring with each other, the first neurologist is back-tracking on the initial MSA diagnosis and is asking us to concentrate for now on the removal of the lump. He was also of the view that for MSA patients, tremors did not usually affect only one side.

Can anyone shed some light on experience with tremors? Please also feel free to comment on any aspect of my Mom's experience. I will respond as best and as accurately as I can.

Also breathing problems are becoming a bit of an issue. Advice?

How Fast Does This Horrible disease progress?

Wed, 15 May 2013 01:43:00 GMT

Hi everyone, I am so sorry for all of you whom lost a loved one due to this disease. I've worked in the medical field for 36 years and I am 55 years age and was diagnosed with this disease 1 month ago and can no longer work. I had 17 surgeries and the last one was a back surgery. In any event , once this surgery was completed this past December, all of the symtoms I was having for about 20 years started very quickly and now I am om permanent disability. I need oxygen everywhere I go, my memory is becoming very difficult. I've been helping patients my in tire career and now I am on the other side trying to fing the right Physicians, which I did. Dr. Jarredeh at Stanford where I worked found this. Supurb Physician and very thorough. I'm single and my sister law helps me with all my needs. Can anyone give me some solid advise of what to expect and is this something I should tell my children? Chris

How Fast Does This Horrible disease progress?

Wed, 15 May 2013 01:31:00 GMT

Chris

How Fast Does This Horrible disease progress?

Sat, 27 Apr 2013 20:07:00 GMT

(continued)

Didn't mean to rattle on so. I'm sorry.

Just need to let you know that calling hospice on board has meant a great relief to me. Help day and night. Tom's suprapubic catheter often clogs and we would have to wait for home health the next day, or if it was a weekend, not until Monday, meanwhile Tom's britches constantly wet. We change him often, of course, but can't keep him dry but for pads packed around his 'usual pee route'.

Having constant supervision by trained and wonderful nursing staff is a huge relief. And bathing/shaving help. And someone to help watch medicine stuff.

Am just throwing out thoughts here. Tom has likely had MSA for six or more years, but we've only given it the name MSA for the past nearly two years.

Love to all. Karen

How Fast Does This Horrible disease progress?

Sat, 27 Apr 2013 20:02:00 GMT

Hello. I see new soul just diagnosed with MSA. We MSA bloggers wrap our arms around you, and somewhat understand the dread of what you face.

I must also add here that Tom's Navy neurologist has agreed that it is time for hospice intervention. We interviewed a couple hospice agencies, listened to recommendations of former users of a particular one, and I relied on my 'gut' to help me decide. I called on board Vitas Innovative Hospice Care. It took me a long time to decide it was time, and I still question it somewhat. But, having made the move to hospice for Tom, I am more relieved today than I can tell you. We have a wonderful support system with family, friends, neighbors, two churches, my work pals, but at the end of the day, I am the one home with Tom.

I have not told Tom that his new nurses are hospice because he tends to hyperfocus on a thought until it's ridiculous, and I don't want him waking and going to sleep at night with the six-month hospice notion on his mind. As it is, he has little understanding that he suffers from something that may take his life in the near future. One of the symptoms of MSA is "lack of appropriate concern", for example, about the future progression of the disease. This is vivid in Tom's situation. I don't want him to fret all day that this disease might take his life. Another symptom, "reduced insight": sometimes I'll say to Tom, "Honey, don't you get bored lying in bed all day and knowing it will be the same tomorrow?" And he looks at me with odd expression and says, "No! Why?" I must say, that this is probably a good thing, that his mind is changed enough to not realize his predicament. (continued)

How Fast Does This Horrible disease progress?

Sat, 27 Apr 2013 18:53:00 GMT

I was just diagnosed yesterday...I have had signs for a while...My wife and I will deal with this

How Fast Does This Horrible disease progress?

Mon, 22 Apr 2013 00:40:00 GMT

Emma,

I don't have MSA but my husband does. I can't really imagine how it feels. My husband has all the tubes, trach, peg tube, super pubic, and ostomy. Most of these were put in place after he had surgery to straighten his neck. His chin was sitting on his sternum. His lungs just didn't make it back from such a long surgery.

I just wanted to suggest to you that a peg tube for feeding doesn't seem so bad. At some point you won't be able to take enough nutrition to keep yourself healthy. If you get a peg tube, you can still eat the things you like for flavor but taken in, say, 50% of your calorie needs through the tube.

Most of the research I have seen says life expectancy is 5-10 years after onset of symptoms. Of course it can hard to establish "first noticed symptoms" because its easy to miss them.

From my husband's and mine journey, I wish we had recorded his voice, I wish he had learned to use a speaking program like "Grid Player" earlier, I wish he had learned to use an eye controlled mouse sooner. These things will help you later on to stay communicative with your loved ones.

Joan Smith

How Fast Does This Horrible disease progress?

Sun, 21 Apr 2013 23:17:00 GMT

Emma leitch I have been diagnosed with MSA for a year and a half. I ache in my legs arms and back. I get confused and forgetful. Swallowing is a real problem everything I eat is liquidised. My bladder as a mind of its own. I feel like I'm on a steep hill speeding down with no brakes. I have refused invasive treatment, so no tubes etc. I sleep sitting up as I feel as though I'm choking lying down.

How long can this horrible illness keep me on this earth?

I was looking forward to a long retirment golfing, swimming, holidays. I am 61years old, never smoked or drank excessively and was very fit. Obviously I drew the short straw.

How Fast Does This Horrible disease progress?

Wed, 17 Apr 2013 20:08:00 GMT

Daphne McLeod

remember all those sorrowful days, when all is failing, and you still at your worst being courage with Joshua 1:9~~ have I not commanded thee? be strong and of good courage, be not afraid neither be of dismay;
for the LORD thy God is with you wherever you go. I know that we're not in this alone, we always have unseen hand. that is what this forum is for information and encouragement. I know that you are loved by everyone, and your father above. Bevie, dont let this,
blow out your candle! be strong in your faith, and testify to all you can. we all have a purpose to feel, and it starts by praising Him, in good times and bad.

How Fast Does This Horrible disease progress?

Wed, 17 Apr 2013 18:53:00 GMT

Daphne McLeod
Bevie, Don't give up! I don't even know any of you but I do know, my heart. God doesn't want any of us to give up. we all have to suffer some in this life. it was never promised to be easy, but that He would guide us and help us and hold our hand. I don't know your heart Bevie, but God does. he doesn't want you to give up and neither do I. that is what this forum is about, care and compassion for others. and I care about you. I care about Maggie I care about Joan, I care about the daughter in law in New York, my heart goes out to all of you. don't think your voice isn't being heard. you are being heard and you have many prayers going up for you. got to the very end that's what I'm going to do. I have too much here to hold on to. a marriage of 20 years, two beautiful brilliant young women, one will graduate this year and the other next year from high school. I couldn't be more proud of my daughters they are both on our students, and I help me out tremendously. and you have something to hold onto as well. have faith have courage. remember God is always listen to you. so are all of us. if you ever need to talk, I will give you my cell number and you can call me anytime. but don't give up. we all have a journey to take, it's the measure of our compassion that gets us there.
Love you ALL
Daphne:-)

How Fast Does This Horrible disease progress?

Wed, 17 Apr 2013 18:07:00 GMT

Daphne McLeod

It has been awhile, since I last posted. I am 40 years old, I was diagnosed with MSA, January of this past year. I know everyone symptoms are different. but has anyone had eye pressure behind your eyes, for severe ear pain. along with your back hurting and your shoulders. I have a number of symptoms, pots being one of them, my blood pressure is rarely over 70 over 50. I am on medication for that now. I'm having stomach issues now severely, I'm only digest in 40 percent of what I eat. just went to gastrologist yesterday, and is testing me for overgrown intestines? I've never heard of that. I would love to hear from somebody who has the same symptoms as I. my family is really wonderful and helping me,. but mentally is very challenging. I have been going to physicians now for nearly three years. if any of you have the same symptoms that I do I would love to talk with you. they have also put me on a ASV machine,due to Central apnea. I really would like to talk with someone, who has had the same symptoms, hope to hear from you soon.
THANKS
Daphne

Living with MSA since 1996

Tue, 16 Apr 2013 12:45:00 GMT

Yes, living with MSA is possible, though it ain't easy!

Living with MSA since 1996

Tue, 16 Apr 2013 11:39:00 GMT

Yes, I can connect with your journey. There have been times in these 19 years of crazy and painful symptoms when I find it too much to handle....and then I go inside and quiet the fears and pain. Music is my soother and I pick up my viola and forget for a time that I even have a problem. I was inspired recently by a man in my former support group (no, he didn't die. I moved) who, despite being in a wheelchair most of his hours, won the International Ballroom Dance Contest last year in two divisions. So, when my legs don't want to move, I do tai chi or break into the Cajun two step. When my vision would no longer allow me to read the music while playing my viola, my ears took over and now I play what I hear. When I play with others or with a cd, my fingers seem to move to their rhythm even when otherwise they refuse or are slow to move. Don't give in; just find another path. Before your last two fingers go, look into a voice activated computer for the handicapped. .....and keep writing!

Live Now

Living with MSA since 1996

Tue, 16 Apr 2013 11:16:00 GMT

I am living proof that one can indeed survive for a considerable time with MSA, though it often gives people just seven or eight years. After 17 years I have reached the stage wherein energy is an intractable problem, and the falls, autonomic dysfunctions, dizziness, and all the rest have been manifest for a very long time.

I also note the frequent depressions many people go through who have MSA, and I am certainly familiar with that situation. It becomes a battle between the desire to live and seeking to be free from the torment MSA causes--thus the considerable suicide rate. Forgive me if I am being insensitive or simplistic here, but the issue of going on is weighing heavily on my mind.

Is it better to end this torment or to soldier on, knowing that things are bound to get even worse? Many of you reading these words know exactly how I feel, though this is an issue that few people discuss. To my way of thinking, there is no single or simple answer. If a person's life has become intolerable, than he or she has good reasons to seek a humane escape--which is often easier said than done. In any event, that is an intensely personal decision, and one that I have contemplated many times.

Yet here I am, some 17 years after being diagnosed. So many falls, choking, the shakes, and that terrible fatigue that makes finding any joy such a task. Yeah, I know all too well what many of you feel like every day. Then came the diabetes, heart attack, and a host of other ills that only adds to what is already a difficult existence. So how does one respond?

Well, I decided to write, despite the torture this damn keyboard causes! I've completed five books since being diagnosed, and am working on my sixth. In short, I give myself goals, something that goes beyond my immediate situation. It isn't easy because there are many days I simply can't get anything done. But the work is there, waiting for a good day when I can get back to it. And there are terrible nights, like the one I just endured. So here I am writing this note. It is all I can do to help some of you who are in my situation.

In short, try to find a purpose, a reason to go on. It doesn't have to be a grand goal. It might be something as humble as organizing photos or calling a friend--assuming the voice is still working. And when and if that time comes wherein it is impossible to do much of anything, seek passive joys--such as listening to music. In the end, we can make this a battle of living with MSA and not being killed by it. That is what has keeps me going, though I have no illusions about what my future holds.

There will come a time when my words dry up, and these two remaining fingers I can type with fail. I will listen then, for awhile, to the calling of the Morning Doves who live nearby--or perhaps classic rock. And only when and if life loses all meaning will I leave this table we all share. If I do so by own devices, so be it. But let it be said that I lived until I died, and did not die while I still lived. That, my friends, is a choice we all have, and it is the only thing that keep me going.

Worried I might have MSA - Please help!

Mon, 15 Apr 2013 20:58:00 GMT

Elq thanks for the advice. I checked out the website. I am trying to figure out how I could possibly be considered for the program? Mcyork thank you for the details. That is weird about the yeast. I got it on both feet a few summers in a row. My tinea versicolor on my chest and back was even too. The weird thing was this summer I got it just on the outside of my right forearm. I am still convinced I have lyme (whatever helps me sleep at night?) I say that though because I live in Northern woodsy massachusetts infested with tics. I got bit twice a few years ago but have had two negative lymes. Also, I sincerly cannot rule out MS yet, do not care what the neuro says. I read about people that it took a few years of clean MRIs to find lesions. Any signs that I can look for that will def point me to MSA or away from it? I really appreciate your input. It is so hard for me to be taken seriously by any docs due to my age. Have you ever spoken to anybody in their 20s with MSA? It seems like it would be horrible for a person so young, but of course I know it is horrible at any age. Please let me know. If anybody is willing to personally e-mail me so I can share my full story I would greatly appreciate it.Agikas18@gmail.com. Let me know guys! Thanks.

Anna gikas

Worried I might have MSA - Please help!

Mon, 15 Apr 2013 20:28:00 GMT

My story is pretty typical of the people I have met who have MSA or Parkinson's Plus or Parkinson Syndrome......amazing the variety of terms neurologists use! Most of those people, like myself, had symptoms dating back 8 years or more and were not diagnosed with any of the terms above until they either developed tremors visible to a doctor OR had such extreme symptoms that it left little doubt. Remember, there is no conclusive test for MSA, not while you are living at any rate. So, my neurologists call it Parkinson Syndrome.
My vision problems are many: convergence problems, double vision, slow horizontal saccades, vertical gaze downward problem and dry eyes. No matter how many Parkinson Plus or MSA people you put in a line up, the odds are you won't find two who have identical symptoms. I don't know how neurologists ever figure out what to call us. Two years ago, my neurologist wrote on my chart "suspect MSA" but never has said that to me. Instead, he deals with my symptoms and tries to keep me moving and happy which, if you think of it, is the best he can do. So, when I got over the initial OMGs, I started focusing on living now and making my life the best it can be. Recently a wheelchair has been added to my support so I have been working on building upper body strength. Watch out....... Here I come!

As for yeast infection? My first symptoms included yeast infection on my left foot....my affected side. Coincidence? Who knows?

Live Now

Worried I might have MSA - Please help!

Mon, 15 Apr 2013 17:32:00 GMT

Check the East West center in MN

Worried I might have MSA - Please help!

Sat, 13 Apr 2013 14:10:00 GMT

Mcyork do you have msa? I thought progression was only a few years but you had symptoms for 19?? Also thank you for the advice. I do acupuncture and I love it! What eye symptoms do you have btw? I also have thoughts that I have something fungal at play. Sorry for the tmi but the last few years I have had a lot of fungal/yeast infections. I get it on my feet my back my arms. Tinea versicolor it is called. Have you heard of fungal infections causing neuro problems? My homeopath thinks I need to cleanse my system asap. Let me know your thoughts. Thanks.

Anna gikas

Worried I might have MSA - Please help!

Sat, 13 Apr 2013 13:16:00 GMT

Hang in there! Get ready for that neurology appointment by keeping a daily journal or chart of your symptoms. That was the only way I got a neurologist's attention. After 19 years of worrisome symptoms, I am finally getting help and managing well. One of the most helpful things I am doing I learned from the Parkinson Foundation.....Tai Chi and qigong. When I calm my cortisol (fight or flight hormone), my symptoms lessen. Add to that meditation, movement (walking or dancing or simply swaying) to music, playing my fiddle, crafts, and exercise ....all work to keep me moving and smooth out my nervous system. Don't give in to it. I send you good wishes.

Live Now

Worried I might have MSA - Please help!

Sat, 13 Apr 2013 11:14:00 GMT

Hello thanks for your response. I am really scared because my left eye has started to completely blur. Also this is so hard to explain but my right pinky seems limp like it is almost in the way. No doctor believes me because on the outside I look healthy. I am supposed to see msa specialist Anna Hohler at Boston Medical center. I am from Massachusetts. I read great things about her but it is a long wait until June. Even if it is not MSA it is neuro which scares me anyway. Thanks again for responding.

Anna gikas

Worried I might have MSA - Please help!

Fri, 12 Apr 2013 21:36:00 GMT

Anna & Neil: If you tell us about your location, we may have suggestions for good Dr's nearby. (I hope you don't have this horrible & cruel disease,)

Worried I might have MSA - Please help!

Thu, 11 Apr 2013 17:22:00 GMT

Neil, you ever get any answers? I am only 25 female but similar boat. I have been trying to get an answer for 12 months. I have some of your symptoms plus intense tingling on left hand and foot. I have breathing issues as well, I get air hunger. Let me know thanks

Anna gikas

How Fast Does This Horrible disease progress?

Wed, 10 Apr 2013 03:45:00 GMT

Hi Karen, My husband's first symptoms were severe stiffness and then severe muscle wasting in his left side then he became incontinent. And you'd think that would be bad enough but it seems like every week there's something new. He sleeps or rests most of the time now and seems to be in a lot of pain.

I'm just hoping we have some time left before Hospice. At first I couldn't even think about using hospice but after talking to some people and their experiences with hospice I have definately changed my mind. It's very family friendly environment and it gives the caregivers the relief and support they need when the time is near. So we're going to try to stay home as long as we can but will probably use Hospice in the end.

Maggie

How Fast Does This Horrible disease progress?

Wed, 10 Apr 2013 02:13:00 GMT

Hi, Maggie.

Tom was diagnosed first with Meniere's disease, then Parkinson's disease, then possible Normal Pressure Hydrocephalus, then finally to MSA about a year and a half ago. We look back now, though, and realize his symptoms began appearing eight or nine years ago, subtle things, like his conversation getting weird. He'd get on a topic and stomp it to death. Our two children were in college and hated to answer the phone in case he answered, sadly. Other things that we didn't realize may be related to what was coming neurologically. Balance problems began about four years ago, falling. January 2012 he fell in the bathroom and knocked himself unconscious. Hospitalization revealed orthostatic hypotension and he was put on the Fluro___cortisone (which I can't spell without the bottle). He'd had a number of falls and was using a walker for a few months until he got to the point in June 2012 that he couldn't maneuver the walker. He was self-catheterizing, which meant I was getting up three to four times EVERY night and about to loose any sense I might have had. I was teaching school at the time. I let that go last summer so I could better focus on Tom's situation. He doesn't fall now cause he can't walk or stand. He's in bed all the time.

Tell me about your husband's first symptoms. I'll bet they sound similar, huh.

Love,

Karen

How Fast Does This Horrible disease progress?

Tue, 09 Apr 2013 20:35:00 GMT

Hi Karen, Thanks for the reply. My husband being deemed Palliative only means that they believe he has less than 6 months to live. It also means that Northern Health provides a lot more care covered under the Medical Plan. I am still able to have my husband home with me and we can have as little or as much help as we need. I prefer to do most of the care myself but I'm still working 2 days a week so they come in on the mornings I work for 2 hours. That has just started this week. We have the option of asking for more hours but this is good for now. How long ago was your husband diagnosed with MSA.

Maggie

How Fast Does This Horrible disease progress?

Tue, 09 Apr 2013 20:09:00 GMT

Oh, hi there, Maggie. I'm Karen. I put "ks" without knowing what I was doing, but those are my initials. Karen is my name and I'm so glad to share with you (and the others). I've never blogged before so I'm going at this with little skill.

Anyway, I'm glad to see your note. Tom is also 64. He is in bed full time now. We can't get him out of bed unless someone lifts him because he can't get his feet to the floor with his rigidity. He has lost motor function and so much muscle that I cry when I see his little frog legs trying to reach the floor. But they are bent and he can't. Our daughter is (oddly enough) an Occupational Therapist and moved back to San Diego last summer to help us. She can work to straighten his legs a little, but he cannot stand on them.

We just shaved him and gave him a (bad) haircut, but at least he doesn't look like a mountain man. I hate all this grooming stuff but he certainly can't do it. We have a caregiver here six hours five days a week and she's wonderful.

So, your husband is 'assigned' palliative care now? Does mean hospice? I'm in conversations now with two hospice organizations but am not fully internally convinced that Tom is ready. Depends, I suppose, on the relative term "ready". He can't do most things for himself. Doesn't sit or stand, is in a hospital bed beside the bed we have shared for 40 years net month. He has lost muscle mass and body fat and looks like he's about 16 years old. Skin lovely, few wrinkles, but his eyes are sad and gaunt.

How I appreciate your reply. What do I do now? Hospice vs. ? I have wonderful support in our family, neighborhood, and two churches. Tom is Catholic; I'm a United Methodist. Some days I can't stop crying. Other days I'm tuned in and smart about all of this. Please tell me about your palliative situation, would you please. And blessings to your and your husband (and to all who read these sorrowful thoughts).

How Fast Does This Horrible disease progress?

Tue, 09 Apr 2013 17:17:00 GMT

Good Morning KS, It sounds like your husband Tom is at the same stage as my husband Larry. My husband has now been deemed Palliative and is almost bedridden. I'm hoping to keep my husband at home as long as possible. I'm just wondering how old is your husband and how long since his diagnosis. Larry was diagnosed in Sept. 2009 but we know he had MSA at least a year and a half before that. Larry was probably 58 when symptoms started to appear and he is now 64.

Maggie

How Fast Does This Horrible disease progress?

Tue, 09 Apr 2013 05:55:00 GMT

Who has hospice experience? At what point in this horrible MSA has anybody called in hospice? What are the criteria for hospice intervention where MSA is concerned? I'm frantic wondering if I'm waiting too long, but his doctors say that my husband is not hospice ready "and that things are going to get a lot worse." Worse: He can't stand, sit up, walk, or do anything for himself. If he's hungry it doesn't occur to him to ask for food (we stay on top of this). If he's cold, he doesn't think to put the blanket back over him (and it's beside him). He's lost 35 pounds since September 2012. He has some changes in cognitive functioning, and is in bed full time now. I just don't know when to call hospice? Thanks.

How Fast Does This Horrible disease progress?

Tue, 09 Apr 2013 05:45:00 GMT

Hello, Sadie. My husband, Tom, has MSA. He's in bed full time now, cannot stand or walk, or sit up on his own. He has lost 35 or more pounds. Hideous MSA! I see you have called in hospice. At what point in the disease did you do this? I just don't know if Tom is hospice ready or not, he still has fair cognitive abilities and I can't bear to use the word "hospice" in his hearing range. Thanks for your thoughts.

How Fast Does This Horrible disease progress?

Tue, 09 Apr 2013 05:43:00 GMT

A Miracle Drug?

Thu, 04 Apr 2013 15:39:00 GMT

if you are able to suply any information please contact me on facebook, my email is mohammedi1963@hotmail.co.uk

A Miracle Drug?

Thu, 04 Apr 2013 15:35:00 GMT

this is a very intresting drug could anybody be kind enough to let me know if at all it works, i have noticed people have been using this drug for some years could those people tell me if i should try this drug and if you can tell me how long before i see some changes

Genetics -- SCNA gene mutation

Sun, 31 Mar 2013 03:27:00 GMT

Meant SNCA mutation.

thanks.

Genetics -- SCNA gene mutation

Sat, 30 Mar 2013 18:16:00 GMT

Hello everyone,

My father was recently diagnosed with MSA (originally thought to be PD). These past 5 years I have watched as he has gone from a man that walked five miles a day, to being unable to get out of bed. He was tested an does carry the SCNA gene mutation.

I have recently remarried and am looking to start a new family with my husband but am concerned that, in some point in the future, I may be unable to care for a family. I have balance/vertigo issues and have so for years. Has anyone found that this runs in families? Am I at greater risk if my father has the gene mutation?

Thank you to all.

A Miracle Drug?

Sun, 24 Mar 2013 20:45:00 GMT

Wondering if the originator of this post about Flupirtine would contact me by email. Pam.Bower@msaawareness.org

http://www.MSAawareness.org

How Fast Does This Horrible disease progress?

Sat, 23 Mar 2013 23:58:00 GMT

Hope it works for him. There is also a version called "Grid Player 2" which you need to purchase and has to be used on windows product. You can get an "Eye Gaze" mouse which the person uses his eyes to move the mouse. We got this for my husband through the VA, as he is 100% disabled. It isn't working for him now because his double-vision has gotten so bad. Its tough for him, his hands are both contracted, he has double vision and cant talk. It must be so frustrating for him to just give yes and no answers without being able to express his own opinion. Thankfully we have been married 23 years and I know him pretty well.

If you husband can still talk, but its soft, try a throat microphone. They can be attached to walkie talkie. We tried regular clip on microphones and headsets, but they didn't work nearly as well as the throat mic. This is what the secret service guys use to communicate because you hardly need to speak above a whisper. But he still needs to have the ability to form the words. It takes the sound straight from the vocal cords, so not a lot of effort is needed and you don't get the breathiness.

Feel free to ask me anything. I've tried a lot of things over the years with my husband.
Joan Smith

How Fast Does This Horrible disease progress?

Sat, 23 Mar 2013 18:16:00 GMT

Thank you, Jo, for your post. My husband, the one with MSA, just downloaded that app on his iPad. He's been spending weeks trying to figure how to program such an app. We're getting to the point where communication is frustrating for everyone involved

How Fast Does This Horrible disease progress?

Mon, 18 Mar 2013 12:30:00 GMT

Thank you everyone for your replies. Excellent ideas. Donna I do feel for you. We had our daughters at home to help us. If you can't take care of him and need to put him in a home don't feel guilty. If you stay with him most of the time you can make sure he gets the care he needs. If he is on hospice you can put him in for 5 days and see if you both can take it. Hospice also provides a social worker that can provide you with info for taking care of him at home. I'm sorry, I know you don't want to think about it but they also help prepare both of you for death. It's something we all deal with differently but this is a disease with no cure and a slow deteriation. It can be dealt with, with honor, love and dignity to all involved.

Jane

What, exactly, is an "Inspiratory Sigh"?

Sat, 09 Mar 2013 21:59:00 GMT

Dear Karen, I am sorry that you are having such a hard time with this illness. I just wanted to reach out to you and let you know that I care and that I hope that you reach out to others if you need help in solving these life problems. It is very hard and it stinks that you have to have an illness; I wish that life were perfect but boy don't we know that it isn't. I hope so much that whatever you can do today, you do it to the very best that you can and be compassionate with yourself. If your family member's drinking is affecting your care or your safety, reach out to someone and ask for help. I hope that your doctor is compassionate and offers you wisdom. Let us know what happens. Make sure you go prepared with what you need to ask and tell him or her.

Cynthia Carlson

What, exactly, is an "Inspiratory Sigh"?

Sat, 09 Mar 2013 21:53:00 GMT

Dear Bevie: Celia Bush is right, you are still alive and those parts of you that are brimming with life deserve an outlet and support. Reach out. My ex-husband has the neurological illness; there isn't a diagnosis yet but it is a parkinson's plus disease (at least that's what the hospital report said.) The doctor he has currently we plan to replace because we both feel that he is writing my ex-off, either that or he just has terrible patient-relations skills. Larry (my ex) and I have two children, aged 16 and 19. Larry finds his illness "unacceptable." He has always been so proud of his physical capabilities. The degenerative illness that he has is a real call for self acceptance which for Larry is incredible challenging: he must be perfect and not to be perfect is a terrible shame for him. When I wrote to you I was feeling pretty down myself because his symptoms were very strong and I was worried what was going on. Thank god that Larry is so strong from his lifelong career working outside. I hope to point out to Larry his strengths when all he feels are those symptoms overpowering him. I will introduce him to this site. Oh, families don't feel comfortable talking about death so it may be a subject like sex to find ways to speak of your concerns. It sounds like your symptoms are getting you down and that may be the real conversation to have. Larry told me today that I look at him like he is dying. I responded back that I didn't think that he was dying but I was concerned about how he was feeling (I can't look at him and just know how his symptoms are making him feel.) What symptoms do you feel that get you down so much? Cindy

Cynthia Carlson

What, exactly, is an "Inspiratory Sigh"?

Sat, 09 Mar 2013 06:00:00 GMT

Hi. I am replying to the woman who is so alone.

You can call "The Agency on The Aging" or call "211" who can help you with many resourses. Also, the second Home Health Agency "Heritage" worked wonders with me physically and mentally.

My husband and I have been together since we were 7. The hardest thing is accepting that while he loves me stupendously, he resents my being ill and feels that "This isn't the life I planned". It took alot for him to be honest. So I called the Agency on the Aging. A nurse asked "What are YOU going to do?". You'll laugh when you here what I did!!! You aren't dead yet!! Don't let ANYONE make you wish you were! I would like to keep in contact. Take care. Cecilia

Cecilia Bush

How Fast Does This Horrible disease progress?

Thu, 07 Mar 2013 17:32:00 GMT

Donna

continued...

There is also a device called "Take-along-Lift". This allows you to move him from bed, chair, toilet, etc from seated position. It has a manual crank which lifts him up and down. It doesn't take alot of strength to turn the crank. You can put a person in a car with this and take the lift with you in the trunk. So if you don't have a handicap van, but you do have a manual wheelchair you take with you, you can travel.

One more thing. My husband ended up with a bend sore on his sacrum because of poor care in rehab and then poor application of a wound vac. I am maintaining it now. If you can afford it, there are low air loss, rotating mattresses. I have one for my husband. It not only keeps his skin dry and cool and night, it turns him. I set it to do a 3/4 turn every 10 minutes. He doesn't have any other pressure sores and the only he has it doing well.

We are blessed that we could get this items to help. I wish everyone could have access to equipment that makes our homes the best rehab, long-term care facility our husbands can be in. Don't count on nursing home staff to rotate him, to get him his meds on time every time and get him up out of bed. Humans need to be out of bed, for organs and mental status.

My heart goes out to you. This is not easy... even though its a labor of pure love.

How Fast Does This Horrible disease progress?

Thu, 07 Mar 2013 17:19:00 GMT

Donna

My husband has the grip problem too. We have an inside joke between us that on his tomb stone it will read "He finally let go." Hope this offend anyone. Its just our sense of humor maybe. Anyway, his left hand contracted first. I keep a rolled up wash cloth in it to prevent a wound in the palm of his hand. We spoke with a hand surgeon, who basically said he could cut the tendons to loosen grip, but this would not return function to the hand. We opted not to go through surgery. Doc agreed with pallative treatment with washcloth. Until about 4 months ago, Mark could use his right hand. This was great because his Ipad was his constant companion and source of entertainment and communicaiton. However, his double-vision has increased and his right hand is now starting to contract. This disease is so devastating. My husband is basically like an ALS patient at this point.

I think I can speak to your stress because I am also a 24/7 caregiver. I am 5'6" and my husband is 6'4". I swear by my Sit to Stand lift. I picked one up used on EBay. I help my husband sit up on the edge of the bed, put a sling under his armpits and straps around his chest. I attached loops to the lift. There is a tray that holds his feet. My lift is not real fancy, but does have a battery. So use the remote to lift him. You can move him to any item which has about a 4" clearance underneath. I raised his recliner for this purpose. Before I had this lift, I had double carpal tunnel syndrome and was losing use of both hands. I am fine now. This type of lift is also good for your husband because it allows him to stand up, helping his organs and bones.
Joan Smith

How Fast Does This Horrible disease progress?

Thu, 07 Mar 2013 15:43:00 GMT

I found what I thought to be an excellent article and here is the link: http://rnjournal.com/journal-of-nursing/the-challenge-of-msa

Reading your description about your aunt was like revisiting what I saw with mom. She has severe neck pain, sudden drops in blood pressure, gait issues, etc.

At first she was very secretive about both her symptoms and going to the doctor until she could no longer hide it. I don't exactly know what meds she is on but her neurologist recently upped her frequency - not dosage - to five times a day from three. That has helped tremendously. Her voice is stronger, she is having fewer episodes with her blood pressure and she sometimes manages to walk to the kitchen without her cane or walker.

She will turn 79 this summer and she is fighting this disease every single day. I've discussed clinical trials with her but she doesn't want to go that route unless everything else stops working.

She has had to learn to accept that she has to change her routine and expectations and let people help her. She has pushed herself to the brink of exhaustion on her exercise bike, which she uses to try to keep her leg muscles toned, and has stopped exercising like she's training for the Tour de France.

If she feels an episode coming on she lays down flat wherever she is and it usually subsides in about 15 minutes but it tires her. As long as everyone in the family understands that and is not embarrassed by it your aunt may find strength in knowing that her family has not abandoned her. One day at a time at this point.

Daughter-in-law of mom with MSA

How Fast Does This Horrible disease progress?

Thu, 07 Mar 2013 15:29:00 GMT

You are very kind, Juan. Thank you for sharing.

Daughter-in-law of mom with MSA

How Fast Does This Horrible disease progress?

Thu, 07 Mar 2013 13:21:00 GMT

My first post to blog. My husband has MSA. He is 63. Because of his disease he has a trach, a peg tube, a superpubic catheter and an ostomy bag.

I believe he is nearing the end of his journey. I have been his primary caregiver since Nov 2009.

My tips for a caregiver and patient as a follows:

Most Important- stay in hospital as least as possible

Second - find a away to get a Sit-to-Stand lift. We purchase one used through Ebay 2 years ago. It is my most valued piece of equipment. I am 5'6" and my husband is 6'4". He cannot help me anymore transferring him, but with the lift I get him up every day and put him in his power chair.

Third - If your loved one has lots of meds, find a system to prepare each days dosages once a month. I use pill pouches. My husband takes meds (44 pills consisting of vitamins and meds) every four hours. Once a month I prepackage each dose and put each days alotment in a screws/nails cabinet you can buy at a hardware store. This will save time plus, you won't have to worry if you missed a dose, just see if the packet is still on the counter or in the chest.

Fourth - If your loved one ends up on a ventilator, but is still walking, talking, etc get them home from hospital sooner than later. Each day they are in the hospital they loose so much ability to move and function

Fifth - For patient - keep moving, keep excersing, keep stretching as long as you can. If you don't use it, you will loose it.

Sixth - For soft voice - look into Throat microphone. If the person can still speak, you can attach it to a personal amplification system (under $100). The person doesn't have to hold mic and if does a much better job because it picks up voice from voicebox.

Seventh - For patient - if you are computer savy and can get a tablet, there is a free app called Grid Player which you can use to talk to people.

My heart goes out to all of us, patients and caregivers. Remember the loved ones are still there. We spend a bunch on movies last year. This is one thing my husband can do just like everyone else, sit in a chair, be quiet and watch a movie. For a few hours he feels like himself again

Joan Smith

A Miracle Drug?

Wed, 06 Mar 2013 15:10:00 GMT

Well - after trying katadolon for about a year @ the recommended dose, the milestones of the disease (Difficulty swallowing) lack of head support, after 3 years from diagnosis seem to be approaching at the normal rate observed with disease unfortunately. Given that, I cannot say its not worth trying for your loved one, as the person affected said it did improve their overall condition and how they felt.

What, exactly, is an "Inspiratory Sigh"?

Tue, 05 Mar 2013 18:22:00 GMT

thank you. i will. i just wanted someone to give me thweir opinion becausse my family doesn't believe that i'm going to die. that's why i need to get everything in order /(so to speak)

What, exactly, is an "Inspiratory Sigh"?

Tue, 05 Mar 2013 01:05:00 GMT

Dear Bevie: I just want to be present for you and to hear you. I do care. You were able to do something important: you were able to communicate how you were feeling. Thank you for reaching out. Keep reaching out to others. You are important to me.

Cynthia Carlson

A Miracle Drug?

Sat, 02 Mar 2013 20:08:00 GMT

hello my name is Mohammed i have been reading up alot of these comments i am sad to hear that the drug is not working for some people i was rather hoping it did because i have also been diagnosed with msa disease and i was counting on this to work for everyone.

my best to everyone

m.iqbal

A Miracle Drug?

Sat, 02 Mar 2013 20:01:00 GMT

m.iqbal

Exercise

Sat, 02 Mar 2013 00:26:00 GMT

Exercise: what works for you?

I am thinking of getting a rowingmachine—opinions?

Tips on Coping

Wed, 27 Feb 2013 19:24:00 GMT

This is a reply to John, but essentially it is to everyone. Several things: I noticed many typing errors..I have that problem also, but I have invested in some assistive technology, namely a keyboarrd guard and an ergonomic mouse from Fentak Industries in Cottonwood, AZ.

I too read the Bible and pray. Presently I am in Job's corner. I do not blame or question God, but do pray just as Job did that I be released from this painful existence. Will he answer? I hope so, but I am always strong in my belief, reliance & and faith in God.

Pat

MSA trigger(s)

Tue, 26 Feb 2013 03:08:00 GMT

Stress also crossed my mind. When I reckon this all started, I was under severe stress at work.

MSA trigger(s)

Tue, 26 Feb 2013 01:24:00 GMT

For me I have a good idea what brought on my MSA. As a high school student and during college I worked at a farm supply company and was regularly exposed to very toxic chemicals such as: 245-t (agent orange), 24D, chlordane, atrozine. Warbex,Methoxychlor, and probably dozens of others I don't remember.As a young man I didn't care but I believe that exposure is directly responsible for my condition.

Richard Howington

MSA trigger(s)

Tue, 26 Feb 2013 01:22:00 GMT

My guess is that my adrenal glands got into a cortisol overload....meaning that I did not find ways of getting out of the "fight or flight" mode. There is some scientific studies that do support that theory, that stress depletes our ability to rejuvenate brain cells. The fact that just about everyone I know who has a brain disorder (MS, Parkinson's and Parkinson Plus, Essential Tremor specifically)either had a traumatic incident(s) from which they did not recover or simply were people who thrived on stress. I would like to know how many people that fits. Meanwhile, I am consciously eliminating stress in my life and feel better today than a year ago. I exercise, play the fiddle, and create with clay, all things pretty new to me. My attitude has changed from fear to acceptance, from dread to joy, from living life as a handicapped person to actually rejecting any negative thoughts. If our cells reproduce all throughout our body and healing takes place without our thought, then who is to say that our neurotransmitters can't work effectively again.

Live Now

Tips on Coping

Tue, 26 Feb 2013 00:05:00 GMT

I did not know that Flupirtine was available li the US. See theMiracle Drug post...

MSA trigger(s)

Mon, 25 Feb 2013 23:50:00 GMT

Maybe this (MSA-C) is genuinely sporadic, but I cannot help wondering if there's something I did, together with something I had (genetic or otherwise), that caused this.

I know what the consensus in the medical profession is. At the same time, they don't ask questions/gather the data that would allow them to find a common trigger—ie, falsify the consensus.

There are a number of things that I have in my mind as candidates. Say, a malaria prophylactic I took about before I had the 1st symtoms (3.5 years before diagnosis). Or my daily sports drink?

I know this is a shot in the dark—but do you feel the same?

Help with finding in home PT service in MD/DC area

Mon, 25 Feb 2013 23:46:00 GMT

I am now going to the National Rehab Hosp in DC. Very good. I asked for a neurology-certified PT as my previous PT suggested. Before, I had my PT at GWU outpatient ctr at K street NW.

How Fast Does This Horrible disease progress?

Sun, 24 Feb 2013 23:58:00 GMT

Jane thank you for replying about your husband. I just literally had to pick my husband up off the floor and lift him back into his bed. We were trying to go to the bathroom when he froze up again and then sank to the floor. I am the only one here taking care of him and I am so afraid that I'm going to have to put him in a nursing home. I just can't continue lifting and tugging on him before one of us gets hurt. I am so undecided as to what I should do, I know he will hate it there and I would too - I just don't know anymore

Donna Dugan

How Fast Does This Horrible disease progress?

Sun, 24 Feb 2013 22:26:00 GMT

Donna: my husband did clench as you mentioned We had to unpry his hands, we eventually just had to transfer him without his help Eventually after that because he was sitting all the time he developed pressure sores After that he couldn't support himself long enough to get off the sores so he had to stay in the bed where he could be turned I'm sorry this is a terrible disease and basically what has to be determined is what the caregivers are able to do For my husband he wanted to be at home and it meant setting the alarm every 2hrs to turn him but he was as comfortable as he could be and that gives me comfort
Jane

Possible diagnosis of shy drager

Wed, 20 Feb 2013 02:34:00 GMT

Pam,

First, I just want to tell you how sorry I am that you're even having to think about this. I will never forget the terror I felt as I read the details of the diagnosis I had just been given. Know that you're not alone, and there is wonderful support available for you as you walk through this process. I am 41 y/o and was diagnosed three years ago--your age now. As I read your post, I felt like it could have been my post three years ago when I was diagnosed with "probable shy dragger" or MSA. I, too, have three minor children who are still at home, so I can relate to your situation and concerns. Both the good and the bad thing about this disease is that its course is somewhat unpredictable and variable person-to-person.. For myself, I had significant, fast progression early on, but have been pretty stable during the past year...for which I am very grateful. I'm sure you'll educate yourself, but know that not all information online is helpful or 100% accurate. I would encourage you to find a compassionate physician who is knowledgeable (or willing to be come well-educated) about MSA. Then partner with them to sort this whole thing out. Meanwhile, you'll find tremendous support at online support groups through associated Yahoo groups and this forum. You're in my thoughts and prayers tonight,

Sherri

How Fast Does This Horrible disease progress?

Sun, 17 Feb 2013 04:39:00 GMT

Donna, it sure sounds like he is weakening. In my community the VA does not provide home health; and the hospitals do. I hope he is strong enough to move himself on the day of the appt; and I hope the doc is helpful this time. Would he have access to in home care?

My husband has had his condition for 12 years; and now he is 52. He gets around in a manual wheelchair by walking with his feet while he is seated. He transfers by himself from his w/c to & from the couch and from the w/c to and from the bed. We have many grab bars in the bathroom; and with them he negotiates the toilet transfer and the shower with the shower bench. A paid companion comes over parts of the day when I am at work and he drives him a few places and talks to him. My husband likes supervision in the shower because of the ataxia, getting the water the right temp, etc. Our home accommodates him using the w/c with ramps and no stairs.

You have a difficult situation right now. I hope youget some help.

Take care.

How Fast Does This Horrible disease progress?

Sat, 16 Feb 2013 23:29:00 GMT

Donna Dugan

How Fast Does This Horrible disease progress?

Sat, 16 Feb 2013 21:37:00 GMT

How Fast Does This Horrible disease progress?

Sat, 16 Feb 2013 20:30:00 GMT

Anna - he is a VA patient and we have been going to the VA for his appts but I'm not sure how much longer we will be able to do that as this weekend we had problems just trying to walk and he couldn't help me hold him up or stay sitting up. I am going to talk with his Dr on Tues and see if he thinks his medication may need to be changed or what? It's been rough up to now but he's always been able to help me get himself up and walk.

Donna Dugan

Support group for patients/caregivers in the Baltimore Washington area

Sat, 16 Feb 2013 18:01:00 GMT

I am interested in finding others in the Baltimore-Washington area who have been caring for (or diagnosed with) MSA. My husband was diagnosed in 2006. We live in the eastern panhandle of West Virginia, and his primary neurologist is located in Washington at Georgetown University Medical Center. We are about an hour and a half from Baltimore and D.C.

Currently I work full-time in a very demanding job. My husband is home alone most days with a Medic Alert system, but recently has had several falls. I would love to connect with other families in the area who have experience with this condition and its very specific challenges. It's very lonely some days.

I've seen several posts about Gluten Ataxia, and I can testify that my husband's stability improved greatly after beginning a gluten-free diet. He moved from a walker back to a cane for almost two years though he is back on a walker now. We expected him to be wheelchair bound by this point, so I would recommend giving up gluten to anyone with MSA.

How Fast Does This Horrible disease progress?

Sat, 16 Feb 2013 17:09:00 GMT

Are you still able to bring
him places? Can he attend outpatient physical therapy to practice transfers and walking?

If he is home bound perhaps Home Health physical therapy. The hospital in town is likely to provide home health PT. They can provide transfer training and balance training in the home.

How Fast Does This Horrible disease progress?

Sat, 16 Feb 2013 09:03:00 GMT

My husband has so many of the same problems as the MSA diagnosis but he started with diabetes and neuropathy. Then he began having TIA strokes, regular strokes and silent strokes. He has been diagnosed with vascular dementia and parkinson. He also has problems swallowing and chokes a lot. He has no short term memory but still has most of his long term memory. He was able to walk with the walker but his walking has become harder for him and he freezes so often that we are getting an electric wheel chair soon.. I haven't seen anyone mention hands freezing around objects. His hands get so tight around his walker handles that I can't pry them off. He goes away somewhere in his head and just locks down - and then can't hold himself up and starts sinking to the floor. I am only 5' and he is 5'10 although he's down to about 122 - I can't manage to hold him, the walker and loosen his hands and get him safely down. Has anyone else had this problem. I am having such difficulty with me being his only care taker 24/7 that I may have to find a nursing home so they can safely help him. He's fallen and broken his hip once and I never want that to happen again. How do you know when Hospice can help - and what do they do for them? There are times when we are managing ok even though it's a constant struggle with balance and everything anymore and then it will just get worse. I don't know what to do anymore

Donna Dugan

Glutin Ataxia

Fri, 15 Feb 2013 22:04:00 GMT

Richard Howington

I too was diagnosed with Gluten Intolerance after my MSA-C diagnosis. It helped me a great deal with my stability to go on a gluten free diet.

My neurologist. is Dr. Frenando Pagan at Georgetown University Hospital in Washington D.C.

Glutin Ataxia

Fri, 15 Feb 2013 16:36:00 GMT

UGH! Sorry, I misspelled Gluten in the subject line.

Pamela Womack

Glutin Ataxia

Fri, 15 Feb 2013 16:34:00 GMT

Hello all, I was a member of this group from 2000 to 2004 during my mother's battle with MSA/Shy Drager.

Within the past two years, four of mom's direct descendants have been diagnosed with Celiac Disease and a couple more are probably affected but have not undergone testing to verify it. In restrospect we area convinced that mom was also affected (based on some symptoms she exhibited and on our father's complete lack of symptoms). So we think that we are all the victem of faulty DNA from mom's side of the family tree.

I just discovered an article on Gluten Ataxia that was published in 2012 regarding a link between Celiac Disease and cerebellar atrophy. Since our mother is no longer with us, we have no way to determine whether her cerebellar atrophy was a reaction to Celiac Disease. However, the possibility is compelling enough that most of us in the family have immediately converted to 100% gluten free households to protect ourselves and our children. Transitioning to a GF diet is a pain at first, just as for a person who is diabetic or imposes dietary restrictions for any other reason. After a couple of months, it becomes second nature.

There is no treatment for CD... no meds, nothing. It is not curable. However, it can be completely controlled simply by eliminating gluten from your diet.

Perhaps there are some in this group whose MSA is the result of Glutin Ataxia. I suggest that you read up on Celiac Disease symptoms. Here is a good place to start:http://www.mayoclinic.com/health/celiac-disease/DS00319. Note that a large number of people with Celiac Disease have NO SYMPTOMS at all. The initial test is to do blood work which if positive is a strong indicator of CD but if negative is inconclusive. The real test is a biopsy of the small intestine which is invasive and possibly expensive depending on your insurance status.

Here is a link to the article on Gluten Ataxia: http://celiacdisease.about.com/od/GlutenAtaxia/a/What-Is-Gluten-Ataxia.htm

Pamela Womack

A Miracle Drug?

Fri, 15 Feb 2013 15:04:00 GMT

MSA is a sporadic disorder and hasn't been seen to run in a family.

How Fast Does This Horrible disease progress?

Fri, 15 Feb 2013 12:14:00 GMT

Jane Hello everyone Please excuse my lack of periods and commas its my computer My husband died last July I guess he starved to death He lived quite awhile on ensure only then his swallowing didn't allow that He was pretty much a skeleton I know he suffered but he didn't complain and he slept a lot He died comfortably in his bed in his sleep I'm sorry the constipation recipes I have are in storage in another state I will post when I get probably in the summer From memory one recipe is equal parts prune juice oat bran(if I couldn't find I would use wheat bran) and apple sauce I can't remember all but the other recipe also used senna tea and figs and prunes I believe cooked down and blended On the first recipe sometimes I'd use the cinnomon applesauce I'd mix up 1 or 1/2 cup each and give 1tblsp at night I started out with the 2nd recipe(sorry I don't have complete recipe right now) along with the other 2 meds I mentioned earlier I would also like to say that Hospice helped me very much when I needed it They bathed him in bed when he couldn't get to the shower nurses came and checked him (which gave peace of mind) and Dr'd his sores and provided prescriptions when needed What I did not like was someone coming so often and not knowing what time and sometimes even what day They say to get on as early as possible As long as they are deteriating they willo keep them on You need to talk to the Dr about it cause he's the one that has to prescribe it Alfreds' Dr said he couldn't say when he would die but his signing him up told me it could be in 6 mo's which I already knew because of his symptons My motto is: Do all you possible can to make them comfortable and you can live with their memory and have peace of mind that you did all you could but take care of yourself get what rest you can so you can give your best

A Miracle Drug?

Thu, 14 Feb 2013 08:28:00 GMT

My dad suffer from this, there could be anyone in the family tree will have the same in the future.

________________
cruel intentions necklace

How Fast Does This Horrible disease progress?

Tue, 12 Feb 2013 17:53:00 GMT

Read "Miracle drug?" post (Nov 12,2012, the sixth from the top) if you wish.

P. S. Google something like "availability of Katadolon abroad", etc. Most folks here are physically disabled but apparently are good enough to surf online. Even if one gets Katadolon (K), keep in mind that the results are different in different people; listen to your body: if K. helps, you'll feel it within weeks. If you feel that you do not agree with K. - stop. It won't kill you, you might feel that it is not for you, or you'll feel NOTHING.

How Fast Does This Horrible disease progress?

Tue, 12 Feb 2013 01:15:00 GMT

My aunt was diagnosed w/ msa in the fall of 2011. She had been on the hunt for wht ailed her since the start of 2009. I have watched her condition deteriorate significantly during this time. She is 76 this year. Her doctors have really shared any prognosis indicating that everyone is differrent and they have know way of knowing what system may fail next. This is not easily argued because they are the experts however, I'm wondering what info any of you here may be able to share about what stage my aunt may be in as it will help her fam make informed and appropriate decisions. I am uncertain aboutbthe onset of which symptoms in whichnto figure out where she is exactly. Based on info I've read I venture to say that her first symptoms started in 2007 w/ the REM sleep issues, night terrors, acting out and apnea. In 2008 she began w/urinary incontenance. In 2009 - orthostatic hypotension and gait issues and significant neck pain, dizziness and no more driving. 2010 it was increased urinary issues and falling. 2011 frozen moments while walking, slurring speech and tremors and low speech volume. 2012 all the aforementioned increased. Plus bowel issues both constipation and explosive diarrhea (sp) plus glazed over looks, numerous utis, needing caths twice daily,virtually immobile, hands not working well, Increased pain to touch and deep intramuscular. She can barely feed self in 2013. Are we looking for hospice you think? Sorry bout typos iPads aren't the easiest for typing.

How Fast Does This Horrible disease progress?

Tue, 12 Feb 2013 00:50:00 GMT

Hi Jane. I wanted to know if you could share your special recipe for helping relieve constipation. Having an awful time assisting my aunt who has msa. Many thanks.

Bowel and Bladder...Cognition too

Mon, 11 Feb 2013 16:02:00 GMT

My husband was diagnosed in 2011. Prior to that he had been having terrible urinary retention problems (and irregular bowel problems). He would have to go every hour and still that would not help. We found out that his bladder was almost always full. For two years neither one of us slept through the night. We found a wonderful doctor at USC. He performed a suprapubic cystostomy. He sugically put an indwelling cathether into his bladder. During the day he plugs it off or uses a bag strapped to his leg if we won't be around a bathroom that will accommodate him. At night he hooks up to a bag that hooks on the side of the bed. It is super easy to use, we change it once a month and can sleep all night. It has been one of the best things we have done - it frees him up. We also use a fiber called Health Force Nutritionals - Earth. Start with just a teaspoon. And 1 or 2 Aloe (450 mg) at night for bowel regularity. He gets a liquid EPA/DHA oil plus straight organic coconut oil. You can adjust these amounts to fit what is changing - it may take a bit of practice. Hope this helps.

How Fast Does This Horrible disease progress?

Sun, 10 Feb 2013 16:57:00 GMT

I was told there is no cure, soo i don't take anything anymore. i really don't care cause i know how i'm going to die. i'm ready to die if that's what iot'll come to. really, i'm not afraid, i just don't want to end up like a vegetable. so therefore i do nothing. Bevie

How Fast Does This Horrible disease progress?

Sun, 10 Feb 2013 15:29:00 GMT

I came accross this forum by accident. I was just curious about the new and exciting research done to help diagnose and cure this dreadful disease. I lost my dad to MSA 13 years ago. It almost crumbled my family. He was 55 years old when he died. He used the same medicine that is used today and he went through the same course of treatments that are still prescribed today. I am so disappointed. I think that this is not only a difficult disease to research, but because it is so rare, it doesn't get the funding necessary to do advanced research. I have read through quite a few posts from 2 1/2 years ago and I could identify with every single one of them. My dad lived 2 years after his diagnosis. He dies from a sneeze. Yep, a sneeze. His heart just couldn't keep going anymore. We were grateful that he died like this. He was a good, proud man and this disease had taken his dignity away. I will include everyone in my prayers who have been affected by MSA. It is dreadful for all involved. More money needs to go to finding a cure and doing research. God Bless you all.

New MSA Diagnosis

Wed, 06 Feb 2013 03:36:00 GMT

Hi. My name is Bill Franz, and I was diagnosed with MSA in 2012. I have suffered for many years with various symptoms, all of which were originally dismissed as being imagined or dramatized, both by my doctors and by my family members. After numerous expensive tests, my doctors were still at a loss as to what was going on with my body. I felt like a fool; maybe I was just "crazy" after all! It sure seemed that way, anyhow.

I was diagnosed with Parkinson's about 2 1/2 years ago, but I had several other non-Parkinsonian symptoms that were quite puzzling. A diagnosis of Parkinson's Disease did not really fit me well. Finally, my primary care physician was perceptive enough to notice certain symptoms (such as my droopy left eyelid), and did further research on MSA. She then contacted my neurologist, who confirmed the MSA diagnosis, based on my history of symptoms.

It was a great relief to finally have a reasonable explanation for my many troubling symptoms. Now, I can finally get down to the business of dealing with my life-ending disease. I was discouraged, of course, when my neurologist hesitated to give me anything to relieve my constant muscle pain, because of my urine-retention issues (I have had to use a catheter for the past several years). He was afraid that muscle relaxers and pain relievers would cause my bladder to let the urine back up into my kidneys, leading to kidney failure. It is a legitimate concern. However, the pain I face every day is often excruciating, and I would rather risk kidney problems at times, just to be able have a way to endure the pain in my body. My primary care physician did prescribe some potent muscle relaxer/pain relievers, but the side effects (being "knocked-out" for hours on end, followed by a period of being "loopy") are worse than the pain I'm trying to treat. I choose to tough it out without medication for now, but I fear that I'm rapidly reaching the end of my endurance.

I am anxious to know what to expect next. Currently, I walk with a cane to help prevent falls (though not always successfully), and my muscles are getting substantially stiffer. Simple movements require so much effort and result in so much pain that I am exhausted most of the time. I don't sleep well at night, and don't rest well any time, because of the constant muscle pain.

I am not afraid of dying; death is the eventuality of all humans, anyway. I am quite apprehensive, however, about what will happen to me between now and the moment I draw my last breath. How quickly will the time arrive when I can no longer breathe on my own, or feed myself orally?

My heart goes out to each and every one of you who is also suffering from this terrible disease. I sincerely appreciate your candid comments that you have posted here. It is reassuring to know that I do not suffer alone, although I would not wish this disease on anyone.

Ann Gerard of Westminster, MA Diagnosed with MSA

Tue, 05 Feb 2013 20:01:00 GMT

My lovely wife, Ann Gerard, has been diagnosed with MSA.

Jen Shenk, of the Westminster Community Vine wrote the following article about Ann and her struggle with MSA:

Ann Gerard, a resident of Westminster, is afflicted with Multiple System Atrophy (MSA). She was diagnosed at the UMass Medical Center Neurology Clinic in 2003, but had exhibited symptoms for at least one year earlier. MSA combines many symptoms of Parkinson's Disease and ALS.

Ann was fortunate in that the first neurologist she saw at UMass was well versed with MSA and had written a chapter in a neurological textbook on the subject. She is also a professor at the UMass Medical School. Others have not been so fortunate in receiving an accurate diagnosis. Many have been misdiagnosed and received incorrect treatment and others have seen multiple doctors in multiple locations over the course of years before they received a correct diagnosis. Unfortunately the most accurate diagnosis is with a brain autopsy. Otherwise it is diagnosed through symptoms. Multiple System Atrophy, or MSA, affects multiple systems of the body. It’s a disease that’s hard to diagnose. And it wreaks havoc on not only the patient but all of those who love the patient as well.

According to the National Institutes of Health, “Multiple system atrophy (MSA) is a progressive neurodegenerative disorder characterized by symptoms of autonomic nervous system failure such as fainting spells and bladder control problems, combined with motor control symptoms such as tremor, rigidity, and loss of muscle coordination. MSA affects both men and women primarily in their 50s. The disease tends to advance rapidly over the course of nine to 10 years, with progressive loss of motor skills, eventual confinement to bed, and death. There is no remission from the disease. There is currently no cure. Multiple System Atrophy encompasses disorders previously known as Shy-Drager Syndrome, striatonigral degeneration and sporadic olivopontocerebellar atrophy.

Roger-and-Ann-GerardRoger Gerard is the care giver for his wife. Roger and Ann belong to a support group at Heywood Hospital in Gardner. The group was originally called a Parkinson's support group but has since been changed to the Parkinson's and Other Movement Disorders Support Group. In addition to Ann there is one gentleman who also has MSA. The discussions in the group center on medications, changes in patient conditions, recommendations on hospitals, neurologists and the treatment each is receiving. Meetings are held on the last Wednesday of each month in the Heywood Hospital Dining Room Conference Room B at 2pm.The meetings are facilitated by a sixteen year Parkinson's pateint and a Licensed Social Worker. For more information email Carl Billington or call him at 978 632 9682 or call Marybeth Kumph, LSW at 978 630 6436.

Roger and Ann subscribe to Neurology Now magazine and Roger searches for information on the internet, poring over research from a neurological website that offers some hope, however remote. Ann is participating in a research trial at the Clinical Research Unit at the UMass Medical School for a new medication to treat orthostatic hypotension (OH), one of the symptoms of Multiple System Atrophy (MSA). She has seen some good neurologists there but so far they can only monitor and manage her symptoms. Roger keeps searching and hoping for a research breakthrough, including following the work of a medical center in Austria that is doing some research into medications that cross the blood/brain barrier and slow or stop the progression of the disease.

Ann is currently supporting the research of Dr. Charles Ide at Western Michigan University where Ann received her B.S. In Occupational Therapy and her M.A. in Special Education.

*“Currently, the Environmental Institute at Western Michigan University is looking for clues with two projects that study MSA gene activity. The first project studies how gene activity is coordinated in good health versus in the disease state. Dr. Charles F. Ide, director of the Institute and the Great Lakes Environmental and Molecular Sciences Center, currently is collaborating with Dr. Anna Langerveld of Genemakers, LLC, and the Columbia University Medical Center Brain Bank, as well as Vanderbilt University Medical Center. The MSA research project is one of the first to use new genomic and protein-based methods to determine the molecular basis of the disease. Ide and his colleagues use post-mortem brain tissue to characterize gene expression in MSA patients and healthy individuals. When a gene expresses itself in a cell, it produces specific proteins to help the cell function. In contrast, when a gene is silent, it is inactive and does not produce proteins. By studying this phenomenon, Ide is able to characterize how gene expression is out of balance. In MSA, some genes make proteins that are harmful in the disease.”

There is no Michael J. Fox. Nor a Muhammad Ali or a Lou Gehrig. But more than 1,000 fans—known on Facebook as Miracles For MSA—have proclaimed March as Multiple System Atrophy Awareness Month.

Passionate patients, caregivers, researchers, friends, and family members want everyone to know about this rare, incurable brain disease that combines many symptoms of Parkinson’s Disease and ALS, with cerebellar ataxia and autonomic failure.

Miracles For MSA, a Facebook page connecting those affected by MSA worldwide, stemmed from a similarly named charity event last March in Nashville, Tennessee. It brought together Pittsburgh Steelers Cornerback Fernando Bryant, a promising genomic research initiative, a Michigan life science startup, and Vanderbilt University Medical Center, to raise money for life-saving MSA research.

The idea for MSA Awareness was sparked by Bryant’s former basketball coach, Bob Summers, on the Miracles for MSA Facebook page. Summers’ wife suffers from MSA.

“MSA is so rare that many cases are wrongly diagnosed as Parkinson’s or some other similar disease,” said Pam Bower, an active member of the Facebook page, who’s mother-in-law was afflicted with MSA.

“My hope with the MSA Awareness month is that the worldwide MSA community will feel more united and will be inspired to do more to raise the profile of this disease and to raise funds.”

Currently, The Shy-Drager Syndrome (SDS/MSA) Support Group, a growing legal entity devoted to fostering an ongoing relationship between patients, caregivers, their family members, and medical professionals, is one of the most sought-after resources for those dealing with the disease. By declaring March Multiple System Atrophy Awareness month, organizers hope to take awareness and fundraising one step further, bringing this and other groups to the forefront of awareness collectively.

The group has a website that is open to all MSA organizations worldwide, a resource for all MSA connections.

For more details about Multiple System Atrophy please see the National Institutes of Health MSA factsheet.

“Miracles for MSA” is a worldwide group of individuals dedicated to spreading awareness about this disease and inspiring hope for a treatment through fundraising, education and research efforts. The group encourages all worldwide organizations with an interest in MSA to join in its efforts to spread the word about MSA and to inspire the miracle of research that will one day lead to a cure.

www.google.com/profiles/jahoward32

Ann Gerard - Google Profile

www.google.com

Ann Gerard - Retired College Professor - Westminster, MA - Ann was born in Illinois and moved to St. Louis as an infant until she was of high school age when her family moved to Iowa. She was educated at Western Michigan University and began work as an

How Fast Does This Horrible disease progress?

Sun, 27 Jan 2013 19:32:00 GMT

hi karen,

i just saw your reply. i've been on, but noonmje repplies, so i getr off. right now all i take is the detrol to try and control my bladder. i stopped everything else bbecaause i feel whats the use. you know?

i haven't even been to the doctor. i really don't care .....................my life is very boring but i would like to do something, but i don't know what. i'm open to suggestions. bye for now....bevie................

How Fast Does This Horrible disease progress?

Sat, 26 Jan 2013 23:03:00 GMT

Denise Theckston

I am 49 yrs old and was first diagnosed back in 2002 with Neurocardiogenic Syncope after a battery of misdiagnosis. I was experiencing unrelenting fatigue and pre-syncope episodes daily. Finally, a TTT was performed after many holter monitors were placed me and echo's done, etc. I fainted after 11 mins and went into complete aystole. I have extremely low BP --have been on Florinef for yrs. Traveled to Vandy Univ to get second opinion in 2004 and they confirmed diagnosis. I have had to have a pacemaker put in due to Sick Sinus Syndrome--2 yrs ago-- also as my heart was going into complete cardiac block up to 6 times a dayand my HR was only running most of the day at around 22 bpm instead of 60-80 bpm. After pacemaker had to have a cardiac ablation done as HR was then going at 140 bpm as per the recording on the pacemaker. The exhaustion is still my biggest problem along with the pre-syncope. The urinary frequency has taken a hold of me now also and I go every 10 mins on somedays. Have already had the UDI studies and 2 cystoscopies performed.

Many more symptoms such as lightheadedness, 7 bouts of vertigo over the past 10 yrs, depression, anxiety, neck pain, etc. However, I have not started with the "parkinsonian type" symptoms except for every now and then a tremor in my hand.

I know way too much about this autonomic dysfunction and dysautonomias as I had to fight to get someone to believe how tired I was--until they did the tilt exam and monitored my BP and saw that with the meds it only goes to 90/60 on a good day---no one was taking it seriously due to my age at onset--38.

However, my dear Mom passed 11 yrs ago at the age of 69. She was first diagnosed with PD approximately 10 yrs before. Took her to every specialist there was in the state of FL as the PD meds were not working. The top neuro at U of FL even said it was PD since she had all the symptoms. Now, after looking back on how my Mom suffered I know for a fact it was MSA. She had every symptom and it started with the tremors, balance loss, freezing step, etc. Clincher being that the meds did not work also.

My sister was dx with NCS 5 yrs ago after she began having pre-syncope episodes also.

I am so sorry to read all of your stories especially knowing what we went through with our Mom. It kills me to this day to remember how she suffered for those 10 yrs. She KNEW something was wrong and we could not get a dx for her...although there is no cure. She had as I mentioned every symptom including the small handwriting, the pill motion, the hoarseness of voice, depression, choking when eating, drooling from not being able to swallow well, etc. We were able to keep her at home and my Dad took care of her with my brother living with them and my sister and I going over each day as much as we could.

I am wondering if any of you have had the type of MSA where the Orthostatic symptoms began first as my sister and I have with our conditions----most of you seem to have the Parkinsonian symptoms come on first.

I cannot tell you how many different Doctors I was to including up to Mayo Clinic in Jacksonville, FL to get a firm diagnosis. So many doctors have never even heard of this disorder. My neurologist told me 2 yrs ago he did not think mine was MSA and could be Pure Autonomic Failure. However, I had to fight to get them to believe there was something going on with my heart and do a TTT and then a cardiac monitor yrs later to see the amount of time I KNEW I was nearly blacking out---I seem to have to fight for a diagnosis. I was a teacher. I have one son who is now 25 and is the light of my life. I am single and I worry non-stop about what tomorrow will bring. I do have a very strong faith and I know you cannot "worry and worship" at the same time but after watching my Mom it is very hard to do. I feel so alone.

I will probably think of a million things I want to add to this after I submit it so pls bare with me. When I look back on how I was a few yrs ago compared to now--I cannot believe how it has progressed. My days, if good, consist of about 6 good hours til about 3 then I crash and have to lie down for a few hrs ---if I am lucky and fall asleep then I get a bit of energy for a few hrs in the eve. If I don't fall asleep then I can hardly get up after 5. Some days I am not even lucky enough to get the good hrs in the morning.

God Bless you all---I know what I have learned from this illness---and that is how fragile and short life can be and how each moment is a gift. I enjoy the simple things and appreciate just being able to go for a walk. I look fwd to hearing from you and I thank you for sharing your stories.

How Fast Does This Horrible disease progress?

Wed, 23 Jan 2013 22:33:00 GMT

Daphne, my husband was diagnose at the age of 56, but he had many symptoms showing when he was 55. Most are between 50-70, but there are a few that are younger then that age range and some that are older. It isn't a fair as you said for anyone, but seems even more so when younger and still may have children at home.

My husband also would have days that he couldn't do as much and other's that were better. On those days he would over do and pay for it by not being able to do much once again. Later he learned not to over due , but not to give up either.

Even with this diagnose he found blessing each day.

SUPPORT GROUP IN GEORGIA?

Wed, 23 Jan 2013 04:41:00 GMT

There is a support group in Atlanta for FTD, frontaltemporal dementia, which is similar to MSA. They meet the 2nd Tuesday of each month 6:30-8:00pm, Clifton Rd in Atlanta. You can contact victoriatinsley@gmail.com for more information.

How Fast Does This Horrible disease progress?

Tue, 22 Jan 2013 23:40:00 GMT

There are days i can't walk, or have tremors - then in a few days i am much better for awhile. I know it isn't fair to anyone but i have never heard of anyone my age being diagnosed with MSA
Daphne McLeod

How Fast Does This Horrible disease progress?

Tue, 22 Jan 2013 17:21:00 GMT

There really isn't stages in MSA. Each patient is different and progress in different ways. Usually in most cases a patient will be using a wheel chair within 5 years.

How Fast Does This Horrible disease progress?

Tue, 22 Jan 2013 16:23:00 GMT

Try Katadolon - detail in the first post.

How Fast Does This Horrible disease progress?

Tue, 22 Jan 2013 04:11:00 GMT

Daphne McLeod

Hi, I am Daphne, I am 40 years old and have just been diagnosed with MSA after 3 years of many symptoms. I would like to have support from someone who has this awful disease and where I am in it. Just 3 short years ago I was water skiing, riding bikes, hiking and enjoying the outdoors and rarely now am I even able to go any where. I have a Beautiful family 2 wonderful daughters 17 & 18 this Feb. and the greatest husband any woman could ever ask for. He is 44 soon to be 45 in Feb. too. I want to believe it is the wrong diagnosis, but my body is saying differently. Please help and tell me where I am in the stage of this horrible disease/

Mother In Law Bedridden - Where from Here?

Tue, 15 Jan 2013 17:17:00 GMT

I know the how it is to feel you are alone in this as someone watching a love on living with MSA. I took care of my husband 24/7 for 5 years. Sometimes when you can't find a support group in the area for MSA , it just helps to speak with someone who understands. I found my support by calling other's I found over the years who were also caregivers to a love one. Many I never saw their face in person , but the bond was still there and many became my life line. I help with this site now since I lost my husband 10 years ago and my main support is with the toll free number 1-866-737-5999. I don't have all the answers , but can let you know how we coped with our feeling and some small things that may help in someway. I can just listen if you want to vent when having a bad day. So please call anytime.

Vera

1-866-737-5999

Who is taking care of the Caregiver?

Tue, 15 Jan 2013 14:31:00 GMT

My wife was diagnosed with MSA-C two years ago at the Mayo Clinic. She could walk on her own at the clinic, however she used a walker for those long distances between all the Dr.’s Offices. In the past two years she’s become totally disabled. I have to transition her from the bed to her chair, to the shower, the toilet, etc.

About a year and a half ago, one of my neighbors who worked in the medical profession told me I should apply for SSI disability. I applied right away. We made an appointment, went to our local S.S. office and they filled out the papers for us. I have since learned that the Fed. Gov’t. has a streamlined review process for people with diseases like A.L.S. , P.S.P. M.S.A. Within two months, she qualified for Social Security disability payments. She was also able to qualify for Medicare six months after that at the age of 58. Both of these benefits have helped us tremendously.

In October, she had a recurrence of kidney stones. She spent almost a week in the hospital. The hospital team and our doctor prescribed home-healthcare for her. She now receives two visits each week from a physical therapist, two visits a week from a occupational therapist, one visit each week from a speech therapist, a home-healthcare nurse, and a palliative-care nurse practitioner. Since we still have personal insurance and she is now covered by Medicare, we only had to pay about $200 last year for all of these things, including her hospitalization. What Medicare didn’t pay for, our BC/BS plan did.

The visits from the therapists and nurses have been a godsend to both of us. The therapy is beneficial in delaying and helping us with her symptoms, and providing advice Almost as important, my wife now has other people to socialize with during the week, and I can get out of the house and run around to do errands while they are here.

I highly recommend that you investigate S.S. disability, and then, after you qualify for it, Medicare. I also recommend that you do not try to fill out the paperwork by yourself. I took my wife with me to the S.S. office so that they could witness the level of her disability. I thought about hiring one of those lawyers who advertise to help fill out all the paperwork, but I just went to the S.S. office here in town. It cost us nothing and the paperwork was completed accurately by the S.S. office in about an hour.

After you qualify for Medicare, find one of the businesses in town that specializes in handicap products for people with disabilities. They know which products are available for disabled people and are paid for by Medicare. My wife now has a hospital bed, an electric wheel chair, a CPAP machine and an oxygen concentrator, all paid for (rented) by Medicare. They even contacted our doctor and got the scripts to make these things available to us at no charge. Their advice has also been very valuable, too.

Finally, I recommend that you find a good lawyer in your town who specializes in elder issues. We rewrote our wills, completed a durable power of attorney for medical issues, completed a right to die statement and several other papers that will help out later. There are several "tricks of the trade" that can help with expenses and decisions on down the line.

Who is taking care of the Caregiver?

Sat, 12 Jan 2013 07:57:00 GMT

My mother was exposed to pesticides for many years. She was a flagger for aerial crop dusters in Arizona during the 70's and early 80's. After doing some research I found links to some studies showing higher probabilities of the connection. I am planning on taking it to our neurologist this month.

Tandy

HELP to cope

Sat, 12 Jan 2013 07:10:00 GMT

just wondering if you got connected with some people and how you are coping?

Mother In Law Bedridden - Where from Here?

Sat, 12 Jan 2013 05:57:00 GMT

I am very sorry to hear of the struggles you are having. It is the most devistating thing to have to watch anyone let alone a loved one go through. If you ever want to talk and share stories or just need some support call on us anytime. I know I am still searching for some support hear in Arizona. I look and look trying to find someone that has some connection to this disorder, you just feel so alone and helpless.

tandy422@gmail.com

Tandy

How Fast Does This Horrible disease progress?

Fri, 11 Jan 2013 02:00:00 GMT

Jock , so much love comes out in your message here. I know it's not easy to see those we love living with this disorder day to day, but what you have done and are doing will be a blessing to him and you will forever be happy that you are there for him.

I lost my husband 10 years ago to MSA and I am at peace that I was able to be there and care for him during those times. He also would cry and at times it was over things that you really wouldn't it would, but it is apart of MSA.

Thank you for being a good son.

How Fast Does This Horrible disease progress?

Thu, 10 Jan 2013 21:59:00 GMT

Dad's been re-dxd with MSA when he'd originally dxd with Atypical Parkinsonism. He's been losing small motor capabilities for about 5years, rapidly diminishing in the last 3years and in the last 9months, he's lost ground drastically...from walking on his own to a walker to a wheel chair. It's very difficult to watch your father become less and less of the man he's always been. He's been my dad and my daughters father figure since my divorce, for 10years...my daughters are just devastated with the impending loss. There's nothing we can do but spend time with him as often as we can. They come home when classes and jobs allow; we still wheel him up to the table and he plays 500, bless his heart he makes so few mistakes! We laugh and make memories and take pictures and enjoy our time with him. And he cries...and then we cry. It's part of it.

Sometimes I don't know which is better, a fast tragic death or the time to watch them melt away...neither one is good or what we get to choose. I just don't want him to suffer or have pain. He deserves neither of those...but then, he doesn't deserve this final indignity either. Dammit!

And so, we move on day by day. I try to help two very independent parents who insist on being so as long as they can...and i'm going to give them that, for as long as I can. I'm only 10 minutes away. At the house every day...doing what I can, what they want me to do.

My heart goes out to those who are enduring this health issue. As rare as it's supposed to be, there are certainly a lot of people on this site!

I steer clear of Agri Chemicals, ALL OF THEM! I am of the belief they are one of the main reasons we are suffering from so many different neurological disorders in this part of the country.

Believe in some form of higher power.

Love your MSA patient for as long as you can. We are.

What, exactly, is an "Inspiratory Sigh"?

Thu, 03 Jan 2013 22:11:00 GMT

this is karen from texas. i cant find a caegiver anywhere, they wokk a dar then quit. why do they quit,y husband compains if they text. everybody ttext i guess its the new way to communcate he also drins alot. im just like a vegetsble. Ijust sit cause i nannot talk, to where i make any sense.i go to tho dr. on the 23 hope he can give mee something. also, has anyony had phantom sesations. thats whst my daaughter calls thhem.

hi my father has just been diagnosed with MSA, well 2 hrs ago, the specialist are passin some litrture on to us but were still not clear on what this diease does an whats the life expectancy, are there any drugs to control it progressing any further???

Thu, 03 Jan 2013 19:58:00 GMT

no known cure or treatment