I often get asked what is this disease that Jill has. I know when I answer MSA or Multiple Systems Atrophy they will immediately think MS or Parkinson’s Disease. I usually try to explain but I’m sure they don’t understand. I sit here on the computer day after day looking for an answer that will make some sense to us.
MSA is a lousy illness. It is a progressive degenerative neurological disorder that affects multiple areas of the brain. The areas affected are the basal ganglia, cerebellum and brain stem and they are responsible for movement, balance and body functions such as bladder control. It is rare and very difficult to diagnose. It is thought to affect 4 in every 100,000 people and has a prognosis of between 7 and 12 years. It is not known what causes the illness and there is no cure at this point in time.
It is obvious to us that we need to get more information out there about this and similar Rare diseases that because of the small number of sufferers little is known and due to the lack of funds little research is being carried out. Over the past few years’ awareness has improved with the advent of Facebook and similar social media. Groups on Yahoo such as MSA have given access for us to talk to fellow sufferers about how we have copped, treatment of the symptoms, things we have tried, changes we have made to our homes to make life easier and just someone to talk with who understands what you are going through. We have lost friends to this disease over the past few years and this makes you more vulnerable to your emotions.
We have been lucky to have such great support from our children, extended family and close friends. We have lost contact with others because we no longer go out very often. As the disease has progressed our contacts are more with physiotherapists, speech therapists, occupational therapists, doctors, neurologists, district nurses, podiatrists and health carers. We have tried to maintain some activities that will keep our spirits up. Visits of the grand children, family and friends are always a great motivator. The use of our wheel chair accessible 4wd vehicle and our caravan give us the chance to get away from the house – not just the visits to the doctor. Other activities involve physical exercises each day but again as the MSA progresses we have had to cut back what Jill can do. Jill used to love reading and often had several books going at one time, one in the car, one in the bedroom and another in the lounge. Now we use an audio book on the iPad. She was a great cook now that is my duty with Jill’s advise telling me what I am doing right or wrong. I am often told that I talk too much – especially about Jill & MSA and off course about our grand sons Riley & Lucas.
This is our chance to make every one know and understand how this disease has affected our lives and that of our families. Facebook groups such as Miracles for MSA and web sites such as http://www.msaawareness.org will help us get the message out.
Has this affected Jill’s mind at all?
Thank you for sharing your stories via this great website.
We have just found out that a good friend of ours has just been diagnosed with MSA.
After reading all about it on your website and how it affects people, I really feel I need to try to help our friend. I will certainly let him know of your website and see what support is out there to help with his daily life.
This dear friend was an athlete for many years, and to see the deterioration physically, breaks my heart. I will certainly be talking to friends and finding out what we can do to help others.
Dear Mac and Jill,
I am Jenny and really would like to thank you so much for sharing your story. Now we know that we are not alone – the only family with the problem like yours. We come from Vietnam – Asia but have lived since over 20years in Europe – Poland. My mother in law has suffered MSA-C same as Jill since many years – but we discovered it in 2006. Reading your story I just can’t believe how much similar you and we are. Of course like Mac my dad in law has to bare all duties – care, cooking , feeding etc. My parrents in law similar to you have a great support in family – 2 own children and 4 grands children – 2 from my side and 2 from their daughter. Luckily they live together in same house on groundfloor with us – so they can see their grands everyday. My husband’s sister also lives not far from us so they drop with visits quite often.
Unfortunately the disease is totally seriously at this stage – since 2 months permanently on the laying position – so I ordered special mattres for not creating bedsores. The speech is one big noise – no chance to understand any word. Thanks to your advise we have just ordered the electronic voice’s stimulator and expect to get it tomorrow. I hope it will help in somehow. Sometimes my dad in law just lost his patient cause cant understand what my mother in law wants to say.
Thanks to your tips I am arranging the sleep test – to check whether need to buy the masque for sleeping.
The big things makes us really worried is too big difference in blood pressure. We just cant bare with it. The blood pressure really down – even 54/86 when my mother in law is sitting ( laying is Ok) . She can only have a sit for less then 15minutes. It will be quite big problem to drive to see a doctor. Perhaps can you share any tips that can help us go throught with it. I read about drinking before standing but she cant swallow anything when lay on the bed. How to do?
ANd the last issue that just now we found out about Beike – and I really regret that so late. Why didnt we find about it earlier – cause we just got the acceptance from Beike – but now it might be too late to make such a long trip.
Waiting any news from you. We are sending a warm greating and supporting from far Europe.
Jenny.