How Fast Does This Horrible disease progress?

My husband was diagnosed with Shy Drager Syndrome just over a year ago since then they've given it the name
MSA.  He seems to be deteriorating way faster than I thought would ever happen.  As a wife and caregiver it's so
hard to watch him like this.  At one point the specialists was
going to try him on an anti-progression drug but has since
decided not to.  Does anyone have any info on this type of drug.

Hi,  I bet your husband has had this disease for a long time but no doctor could diagnose it correctly.  We found that there is no meds that help, except for the blood pressure issues.  My husband has a lot of pain in his neck that he says is a 10 pain.  He is on the pain patches now which help a bit.  He is in a wheelchair with assistance and I now have Hospice coming in starting this week to help.

I am sorry, it is so hard to watch and not beable to do anything.

My wife was diagnosed with Parkinson’s (actually they thought it was Lewy Bodies Dementia since her dad had it at the time) in Oct of ’08. When the meds started to lose their effectiveness we found another doctor that diagnosed her with MSA. She is now 52. From what I have read and observed, I think this is the correct diagnosis.

She has been spiraling downward fairly steadily over the last two years and I’m wondering (hoping) if she’ll hit a plateau -- for a while at least.

Chavela:  Thank you for your concern.  I am sorry for your loss.  It looks like we have been going down the same road.  You are ahead of me, I am not sure how long.  I can only imagine what you are going through.  The reason they may take him off of hospice is because of insurance or an overworked nurse, his  case manager, or both.  It's ok though, Alfred doesn't like being on hospice and I have mixed emotions about it.  We will take whatever happens in stride, as we have for the last 9 years, and even before. 

Jane

Hi

I was diagnosed with msa over 2yrs ago. last Nov. I applied for disability but have been denied twice before I got an attorney. My Dr. filled out a questionnaire of my condition and it was good that it was bad. I'm currently involved with the clinical trial being conducted. My court date for disability isn't till next summer. Any advise to speed things up? I'm running out of options. I know this is not an answer of the question of the forum but it seemed like this one had the most responses.

Thank You Craig

Craig:  Have you also applied for SSI?  I can't remember everything but as I recall, once you get approved as disabled you cannot receive benefits until a certain time period, I think it's 6 months.  From the time you apply until you've been disabled for that period of time you can recieve SSI and then you also get back pay.  It's not as much as disabilaty but every little bit helps.

Jane

 My mother suffers from MSA, she was diagnosed about 7 years ago, she is 81 years old now. Beside all the common synthoms of MSA she is having this weird episodes that are becoming more frequent and lasting longer(about an hour or more now and almost every day), she starts feeling very nervous and dizzy, then her eyes roll back and her mouth starts moving in a circular motion, she is some how awre since she answers when you ask her but with a nod or a small word, this is scaring us and the doctors don't seem to have an answer, we thought it was a seizure but doctors say it isn't.

 Any help from any one?

Al,

It sound's like your mother is having a problem with the drop in blood pressure when she is doing this. Do you have a blood pressure machine at her home to check to see what the pressure is when this is happening ? If not I would suggest that you get one to see if that is the reason for this. If it is the drop in blood pressure (orthostatic hypotension (OH ) then they can give meds to help keep the blood pressure from falling. Eating smaller meals 5-6 times a day and support hose may help.  I believe that there are other suggestions for the orthostatic hypotension in the MSA FAQ here on the site that will help with the OH.

Vera J

It's good that your doctors have worked with you to have a  
quality of life.  This is what is important. My husband was on Mirapex along with some other parkinson medications. Do you also have some heart problems , as many of the drugs you are on are mainly for heart issues? The one problem my husband had with his heart was he had edema and it was surrounding the heart , which was causing it to work harder. The heart was still strong when we found this out , but would of gotten weaker if we hadn't of found this out.  He also used his CPAP during the day and not just during the night.

take care

Vera J

Dear

Dear Craig, 

i got an attorney right away.  I had no problem at all.   got disabily right away.   They tol me if you h ave a head injury, or a desease which has to be documented bby a doc. you will get dis. no matter what.I took yherapy for about four weeks and I thank I got worse.   cant hardly walk at all now and fallling about  twice a day.  i am by mysef, .  My son got me a life recue bracelet and that works wonderful.  All  I do is push a button and they send an ambulane to pick me up.  What kind of clincal trial are you in?  Let me know.   It doesnt matter how much you cry, you still have to deal  with this dam desease.  I go to the doc in Houston on the 15 of nov.  until then Karen in Texas. 

December 18, 2011

I was diagnosed with ShyDrager or MSA a few months ago and would like to know what to expect in the way of symtoms.  I currently have Orthostatic Hypotension which I learned of about 2 years ago after fainting numerous times.  The fainting goes back to my early teens (I'm now in my late 70's); then it occurred occasionally but lately its happened much more frequently.  I've also noticed a lack of interest in the things I  used to enjoy: spending time with family and friends, crafting, etc. 

Currently I'm taking Mestonin, Floudrocordone(?), Carbondopa-levadopa, Metropolol, Folbee and Nuvigil.  The doctors try to keep my BP regulated with meds to raise and lower it which seems to be working most of the time.

Chavlla and Maggie,

My name is David and my wife Nina has MSA. It is 4am and I'm listening to my wife dream. They are vivid, and at times very disturbing to her. She screams out often, and I have often had to wake her up to calm her down.

She was diagnosed with MSA in Sept of 2011, but has been experiencing problems for 3 to 5 years. It started with falling, and what we simply called clumsiness; we would laugh and go on, but now looking back realize that something much worse was going on.

I want to thank both of you for sharing your story. The things you have shared have helped me to understand where Nina and I are in life. We have enjoyed 38 years of a wonderful marriage, and 2 kids with 3 grandchildren. We have enjoyed our journey together. My hope is that Nina won't suffer too much or too long. Because of our strong faith in God and belief in the Bible, we know that this life is just temporary anyway, and is just the dress rehersal for eternity. 

In the meantime we plan on spending as much time as possible together, and do what we can to enjoy what life we have.

This MSA is definetly not something that we ever thought of when the Doctors first started looking for this "needle in the haystack". We had to go to Cleveland Clinic in Ohio to get the diagnosis nailed down.

Ladies thanks again for your openness. We are in our late 50's and realize more and more that we only have a short time together. You have helped me determine to simply continue walking, although a little slower, through life together.

David in Indianapolis

Good Morning David,  I just read your message.  My heart goes out to you.  As you've read my husband was diagnosed about 3 years ago about 1 year after we got married.  I have to say through all that I've read I was definately not prepared for this.  My husband fell and broke his hip in Sept. 2011 and has really declined since then.  The hip has not started to mend and he's still in a wheelchair.  They are talking total hip replacement.  Hopefully this will happen soon.  I am his total caregiver and being a woman and small it has been challenging at times.  But I'm very determined to keep Larry at home as long as possible. His worse problem which seems so strange is his restless legs syndrome.  Unless you've experienced it we couldn't even believe how horrible this is.  He says his legs feel like they're crawling and painful and he becomes very aggiatated.  I feel so helpless.  I search the internet and they said there's a medication called "Requip" so we're trying to get a perscription for this.  I was wondering if your wife has experienced restless legs.

Maggie in B.C. Canada

David, I just re-read your message.  Talking about dreams.  My husband has horrible nightmares screaming and acting out and almost vibrating out of bed.  He's had these nightmares for over 5 years and once they put him on all this medication the nightmares got way worse.  Now the Doctor is slowly taking Larry off the medications because they have not helped at all and the nightmares are less frequent.  That's one thing that really puzzled me and upset me.  They put Larry on medication for Parkinson's after diagnosing him with MSA.  The way they further determine this is MSA is that Parkinson's medications don't respond to MSA.  But yet the Doctor kept upping the dosage and Larry was getting sicker and sicker.  Now the Doctor says there is no sense taking the medication because your illness doesn't respond to these Medications.  I absolutely couldn't believe this was happening and was there encouraging the Dr. to take Larry off this if it's not helping.  So the nightmares have gotten better since the medication has been reduced.

The last time we went to the Doctor and I mentioned that Larry was getting so much worse the Doctor said "yes he's about right on schedule" something to that effect.  I was so upset!!! It was at that time I realized our Doctor has given up on Larry and that there is no help for him.  It was hard to take.  At first I was mad at the Doctor"like how dare you give up on my wonderful husband" then once I thought about it I thought reality bites.  The Doctor knows!  So the Doctor has given Larry 2 years. 

So now I'm crying so I will sign off for now.

Maggie 

My wife was diagnosed with Parkinson’s in fall of ’08. At first the meds helped, but eventually started to lose their effectiveness. We eventually found another doctor who diagnosed her with MSA. We still don’t know for sure, but it does seem like the correct diagnosis.  BTW – apparently there is a test, which is available in Europe that can determine whether one has MSA or Parkinson’s. We recently found out about this at a group meeting,  but I can’t recall the name of the test.

Regarding the dreams  --- they are not necessarily nightmares. It is probably a sleep disorder called REM Behavioral Sleep Disorder. My wife has had that for about 10 years and I’ve since learned it is a flag for different versions of parkinsonism.

Karren:  I saw on internet 2-17yrs with an avg. of 9yrs.  My husband has had it 9 yrs.  The hospice nurses say he will probably not live more than 6 mo.  His spirit is good but on top of weakness and swallowing problems he is now fighting infected pressure sores, which they say will probably not heal and will cause his death, infecting the body. 

A word to the wise:  If they're not eating much, very thin, and not very mobil , moving them is very important.  A pressurized matress is great but I haven't found anything good enough to sit on in a chair.

Jane

Hi Lois,

I said a prayer for you after reading your story. My mom was diagnosed with MSA a couple months ago. I am glad to hear you have a strong faith in our Lord. I will continue praying that you find someone strong to help you through this.

God Bless You...

Hi Jane,   I am 45 yrs old and my nuero sent a letter to my doctor  saying he thinks i mightv  have MSA,  I was first told 2yrs ago that i had parkinsons,  but when i asked my Nuero he said i have ATypical Parkinsonism.  I have  bad balance,neck and shoulder pains, facial grimacing,  problems swallowing,  i  just wish he would tell me what form of #pqarkinsons i have

Steve Booth

Hi Everyone,

First a note about the cushions. We've purchased six inch thick foam pads for use with my chair, foam cell pads and memory foam pads for my walker. They all have worked pretty well and are a lot less expensive than the pads they sell for wheel chairs and use with chairs at home. You can get the six inch foam at places that manufacture foam for the upholstery trade. They can cut the foam to fit.

Second, I've steered away from the ongoing discussion here. My initial symptoms set in six years ago. I was diagnosed by a neurologist at the U of Colorado in 2008 and had the diagnosis confirmed this past December via a "new" test that has been in use in Europe for ten years, but only approved for use here last February. It is a combination of a radioactive isotope that bonds with dopamine in the body and a special scanner the reads the way the brain is picking up dopamine. 

The test results were consistent with Parkinsons, Lewey Body Dementia, Progressive Superanuclear Palsey and MSA. My symptoms are fully consistent with MSA.  The progress of my particular case has been erratic. Initially, I was swamped with literally dozens of symptoms that had me running from doctor to doctor. It wasn't until my cardiologist did a tilt table test that anyone began to think that my problems could be caused by a disorder affecting the autonomic nervous system.  Then the evidence started to pile up quite quickly and I was diagnosed with MSA.

 After the diagnosis, my symptoms developed rather slowly, with small changes happening over periods of weeks or months. Last summer, the rate of change started to speed up. I developed sleep problems, swallowing problems and increasing movement problems. I can still walk with a walker, but simple things like reaching for things, picking things up and cutting food with a fork have become more and more complicated. Physical and occupational therapy to try to keep me somewhat flexible has been helpful, but as soon as I have a break from it, the rigidity, stiffness and weakness quickly take over. It does seem that the pace of change is increasing and we have been making preparations for the inevitable.

 One thing that I have tried to do despite deadly weariness, is to remain connected to as many people as I possibly can. My wife and I have five grown children and we talk freely with them about what is happening. They have been incredibly supportive. We also are surrounded by a network of deeply committed friends who are already paying attention to things like giving my wife a break from the day to day routine of caring for me (which, even though I am still relatively independent becomes more complicated from day to day.)

Central to "holding together" as things decline is the faith life my wife and I share and that we share with many of our friends and all of our family. I nearly died of a rare auto-immune disease 15 years ago. That experience helped us to realize that there is very little that we have control of, but that relationships and trust in God can carry us through a lot of trouble. We also try to laugh at a lot of the changes we see happening - as they say, you either laugh or cry, and laughing is a lot less draining. Every bit of energy counts these days.

Its mothers day and I am thinking of my Mom.   It's 9 years now she is gone.   Not sure of the timeline - She was sick for a while - going from doctor to doctor.  Getting treated for PD.

Mom had to go to a nursing home at the end.  We were there 24/7 for her.    I had the Tues, Thur from 4pm til  9pm and all day Saturday.   When my sister left I was there, when I left my other sister was there..  my dad was there 24/7.  Mom was at the nursing home for 3 months.  After 1 month her food had to be pureed.  Ice cream scoops (3 of them) was her dinner.  Chicken, vegetable and a starch.  One of us was always there to feed her dinner.   Towards the 3rd month the nursing home called a meeting and told us she had to go back to Stony Brook and get a feeding tube.  (she could not swallow even the pureed food - and it was only 3 months she was there).  My Mom - the bravest person I know, refused, refused, refused the feeding tube.  Mom was miserable, bed ridden, had trouble speaking --the whole nine yards.  But she had her MIND.  She made the decision.  She was adament.  So sad.  So she left the nursing home & went back to Stony Brook - she set up hospice and we stayed with her for 5 days, laughed, cryed, talked about everything and anything... until she died.  She starved herself - she was done.  Had it been up to us -- she would have lived but in misery.  We thank God for that everyday.  I love you MOM.  You are the bravest, most caring person I will ever know...   Yes I am still smoking but plan on quitting after Memorial Day.  Its a promise.

My Mom had MSA.  It was years before she was diagnosed correctly.  She was on PD medication - doctor after doctor after doctor til they got it right.  

She tried her hardest to continue to do everything we were used to.  Tough Irish - had the walker at the stove (she couldnt do anything) but made sure me and my 2 sisters made the gravy correctly)  

When she got bad towards the end and was having a lot of trouble getting around - we got her a "picker" (like the one they pick up garbage with on the parkway ) and a BIG BAG OF HERSHEY KISSES (her favorite).  The bag sat on the dining room table and she would pluck them out whenever she wanted one!

At Moms wake - hershey kisses on her belly as she laid in peace finally.  We know she was smiling 

Hello everyone, My dad got diagnosed in 2008 and his symptoms started in 2007, his symptoms progressed slowly untill 2010 form then it started worsening at a rapid rate. He was just 46 when his symptoms started, and i was in mt college. Last year he had a terrible chest infection due to aspiration, and was hospitalized for a month and underwent tracheotomy and now i cant hear his voice which i desperately want to hear. From last year he has lost a lot of weight and now weights hardly 40 kgs with his left arm stiff and painfull. He can hardly raise his other hand now with whole body weakness. Although his congnitive function are normal..he is still very strong and positive. He is also on a feeding tube and all silicon urinary catheter. At the moment its too hard to watch him in this condition, more so because he has always been a gentleman in his life and is quiet famous for that. I am broken now..as it getting even harder for me to watch his condition . 

My mother-in-law who I adore is 78 and was diagnosed with MSA late last year.  She is fighting it with all her might.  She does exercises daily and is trying to live as normal a life as possible.  Her biggest problem is the sudden drops in blood pressure.  It's actually my father-in-law I am seriously worried about.  He appears to be in denial.  For example, he has forbidden her from ordering steak at a restaurant since she cannot cut it up herself anymore.  He also did not take her to the MSA conference that was held a few weeks ago in Newark, which is close to where they live, and she had expressed interest in going. Although he is seeing a therapist, we all are worried about him.  They have been married more than 50 years and she is also worried about him while also having to deal with her illness.  She cannot be open and honest with her husband about what she is feeling.  I have offered to do their grocery shopping and prepare their meals but they insist on doing these things themselves.  In my opinion they are wasting precious time on mundane tasks that exhaust her.  His car is very low to the ground and I believe is no longer the right car for her; their apartment is filled with furniture that would not accommodate a walker or wheelchair.  Changes need to be made but my father-in-law whom I also love very much does not welcome change.  Now my husband, brother and sister-in-law and I need to help them both and we don't know where to start.  How do you start the process of adapting to this disease?  What changes do we need to make right away and what can wait?    

DaughterNYC

I am so sorry your mom has MSA.  I think the key is making each day the best for her and her husband.  As the disease progresses, you will make the necessary changes for wheelchairs and care.  But try to keep the spirits up with this difficult situation .  With my mom, I built her a wheelchair friendly house but she wasn't ready to leave her circle of friends.  When I finally took over her care, we converted a garage into a lovely ocean view apartment where she passed away.  May God strengthen you

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. 

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/

Try Katadolon - detail in the first post.

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.

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.    

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................

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.

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.

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

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. 

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. 
 

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

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.  

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.

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.

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

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). 

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

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

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

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.

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

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)

(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