Newbie grateful for tips

[mazsimumus]

My mom was diagnosed with MSA-C few months ago, after 4 years of going from doc to doc. We live in Hungary and there is no information about the desease. The only clinic that works with MSA patients is not up-to-date, they would not prescribe her any meds at all, got zero information.

Her most severe symptoms are related to motor function. Any good sites to improve her home to fit her needs? (rails are up, doorsteps are modified). What did you do that helped with your safety?

Also her GI pain is terrible. Chronic constipation, lack of apetite and fluid intake... She cries in the bathroom, maybe has one bowel movement every two weeks with laxatives. I am at loss how to menage it.

Thanks in advance!

[Yanno]

Hello. As we always say you are very welcome albeit it's a shame you need to be here.

The first place I would always go to for advice is the MSA Trust web site. For example they have a very good factsheet about bowel management which may be found here. msatrust.org.uk/wp-content/....

You will also find a number of factsheets about equipment here msatrust.org.uk/support-for...

I so hope this helps, and never worry about coming back and asking as many questions as you want; there a many people here who have been through exactly the same issues that you have.

Take care, Ian

[Ruffner in reply to Yanno]

My husband has MSA-P. One of his most troubling symptoms is constipation. He takes stool softeners and stimulant laxatives every night and if he doesn't have a bowel movement he uses a mini-enema every three days. This usually works for him. His mornings are usually devoted to bowel management so we try not to schedule appointments during that time. I know it is difficult to watch your Mom suffer - I hope she can get some relief soon. Take care, Ruffner

[Gammertosix]

Hello friend.

My husband was also diagnosed with Parkinson's disease 7 years ago but it was just not clear yet that it was actually Multiple System Atrophy. We are nearly 4 years into his actual diagnosis. His Dr told us that he had studied and heard about this but had never had a patient with it. So we are both on a learning curve! I actually try to educate everyone if they ask, because no one has heard of it. ( We had not either) This disease is so much about handling all the body systems that change and managing life in that area.

You are so good to be thinking about safety already. We put up extra railings in the bathroom, and grips in the shower. Even handles at the top of stairways to help get up that last step. I took up all our little rugs around the bathroom and kitchen areas to prevent tripping. My husband did not hesitate to use a cane, then walker, and now wheelchair, so that was really helpful in preventing falls. At this time he can't stand anymore so he does not get to use the shower standing up.

He has certainly struggled with constipation, and one thing that we have found is helpful and simple is: Prune Juice. (Dried plums- made into juice) It is very easy on the digestion as far as cramping and all. I give him 120 ml followed by at least 100 ml of warm water. When he gets " tighter" and can't have a bm, I would give him this two times a day. He also takes a medication that we can buy over the counter, but his Dr recommended it. It helps keep the stool moist as it travels along through his intestines. It is a powder and mixed in water. I use those small enemas too, and I have to do this for him.

There are so many ways you will find to help your mom compensate. I made larger cover-ups for meal time, and colorful smaller ones that he wears all the time now for drooling. Things are different when we play a card game, as he cannot pick up the individual card any longer. We have a card stand and I put a pencil in his hand and he points to the card, I pull it out and play for him. He beats me on a regular basis! And that smile is precious.

Praying you find this helpful, and your mom gets relief and regular soon. Have a good day.

gammer2six

[Paul_and_Sue_Wood]

HiSorry to hear that the knowledge in Hungary is minimal but it is the same here in reality. We live in large town next to a big city and our GP only 2 sufferers. Use the data sheets off the msatrust web site to educate those around you. Get support from all you can as this condition get worse with less and less activity and movement.

For bowel issues which a lot of sufferers have use a combination of laxative and softeners daily. plenty of liquid helps also.

Any more questions please ask away on here.

Paul

[AMBD]

My husband had MSA type C. There were no medications for this type. I understand some Parkinson's drugs are helpful for type P.Keep strong, be brave, look after yourself too and love to you both. Alex