Multisystem Atrophy

[livingwith]

My father was diagnosed with MSA in the summer of 2007. In the beginning, no one could really tell us what this disease is all about. He had Parkinson’s-like symptoms (we now know it to be ataxia or severe imbalance) and he was prescribed levodopa.
His symptoms are cerebellar ataxia, slurred speech, and occasional incontinence. His outlook is not promising but he keeps plugging along. He does some physical therapy and yoga with a teacher three times a week which I believe is quite he...Read the full article

[janishane]

I too have a Dad with MSA. It has been many years of doctors telling us that it's Lupus, then it's Parkinsons, then its Polymialga Rhuematica, and on and on. Finally 3 doctors talked to each other and just last week we found out it was MSA.
My Mum is more than devastated when she found out that it will only get worse. We are in the dark as to how fast it progresses. He uses a walker now, we've had the bathroom fitted for the raiser seat, handles, etc. Periodically he will just collapse. He can feel it coming but when it happens, my Mum is only 5'6" and he's 6' 3" and over 200 pounds. She can't get him up because there is no leverage in his legs. She had to leave him on the floor for 3 hours one day because she didn't want to bother any of us to come over and help.
He had the tremors in his one hand that he's had for many years.
I would love to chat with you and help me with anything that will be coming that we can be ready for. He does have to self cathater at night and hates it.
Any words of wisdom that you will share??

[dhp]

To Janishane:

I am sorry to hear about your father. From the symptoms you described, it seems that your father may have low blood pressure (or ortho static hypotension). When he gets up or turns suddenly, he gets dizzy and falls down. Although not curable, you may be able to manage it better. Speak to your doctor (I am not one, by the way), and ask about diet and medications. Hypotension can be treated by drinking plenty of fluids, increasing salt intake, limiting caffeine intake, and by wearing elastic stockings. It also may be helpful to sleep with the head raised to reduce headaches and dizziness in the morning. Some medications may also be helpful in elevating blood pressure and preventing the dramatic decrease that occurs when standing.

Unfortunately, from what my father's doctor told me, the outlook is bleak. My father loved to draw in his younger days and I sent him a bunch of art supplies. He now draws and paints to keep his mind occupied. The yoga and physical therapy (three times a week) have also been helpful in maintaining his overall health. He loves having people over. Unfortunately, my sister and I live quite far away and don't get to spend as much time as we would like. Recently, my father had a little fall at home. Luckily, it wasn't serious but my sister just sent over a walker. I am hoping that he uses it.

About six months ago, he saw an ad on the internet about a homeopathic cure for MSA and asked me to get it for him. I knew when I ordered it that it was a scam (from Germany) but I ordered it anyway. Don't fall for these gimmicks. They go by various fake names (and they change the names often hoping that people do not catch up to it) such as Alpharax, prakotin, atrotab, porphotin, etc.

Good luck!

[janishane]

Thanks for all the info. My Dad has a walker as well. We had the HomeCare people over to look at all his equipment and found that at 6' 3" the walker that he got from someone else was way to small. He now has a very nice, large one but does have a tendency to leave it a little too far from him when he needs it. In time he will learn that it's a life line for him.
He did have another fall the other day and my husband had to run over and help pull him up off the ground. Luckily we are only 5 minutes away.
My Dad was quite the cartoonist in his younger days but with the shaky hands it's not going to be anything he does now. However, I'm sure Sunday crib games would be something he would look forward to. Both my boys (17 & 19) play crib and spending some time with Papa would make my Dad very happy and would give them something else to do on Sundays.
I plan to go over today and see how things are. My mum gives me an update on the state of things from Dr appt and other fun stuff. I was able to get them the info they needed in order to get registered for an Access program so that they can use the taxi system at the cost of a bus pass. Driving isn't a good thing for him anymore and my mum doesn't drive.
Thanks again.... if you have any other info to pass on, please feel free
Cheers!

[mary malone]

Wish I could give you some positive advice.I really feel for your Mum as my husband too has MSA. Tell her to take all the help she can or she will "burn out" which isn't good for her or your Dad. My husband has come home to day after a week in Respite Care, part of me felt guilty but I so needed the break physically and mentally. It is really important that she gets some rest. I know what you mean about the prognosis, not knowing if there are years ahead and trying to cope while watching a loved one slowly deteriorate. My husband now sleeps downstairs he is so shaky I couldn't sleep in case he got up and fell down the stairs, which he has already done 2 years ago and fractured his spine. The worse thing I think for him and me is the deterioration in his speech.
Your Mum is very lucky to have you to suypport her
Mary

[Mark McCarthy]

I feel like I am joining a new club. After 2+ years of thinking my Dad had Parkinsons, and then after extensive doctor consultations, rehab and visits to emergency departments (due mainly to falls) we met a team of specialists here in Australia that confirmed his illness as MSA. Until today, I didn't realise there were sites like this. The worst thing was hearing that on average a person has 6-8 years with MSA and not knowing whether my dad's problems began 3,4 or more years ago?? But we have had a lot of good support from our local hospital and GP. We are fortunate that my Dad responds to parkinsons medication for brief periods of time and lives with us - but it is extremely draining, especially when you realise that the amount of care and attention simply increases exponentially. So, this may prove to be a very helpful forum.