Do you have any helpful ideas

[Ashlene]

Hi, my dad was diagnosed with MSA approx. 5-6 years ago. He currently just progressed to not being able to walk at all, and has recently found it even too hard to stand with assistance. We have recently been given carers that come for the lunch time session as my mum is still having to work, and he has doctors at Bethlehem hospital as well. However I feel you received more help through Bethlehem than we have. Each time we go in there they see him for about 5 mins and write down his progressions and say its just the next stage. And as you know it takes a whole lot more effort to get him in there than they are spending on him. Do you have any helpful ideas on how you approached them. I know nothing can really be done, it’s just hard to take that as an answer. The main reason for my comment is that in the last 4 days he has deteriorated severely. He is very sleepy and when we stood him up he blacked out and took a bit to catch his attention. Is this part of the disease or could it be something else eg:dehydration or blood clots. Obviously we are very worried and no one seems to understand.
Thanks,
Ash

[Vera James]

Ashlene, The drop in Blood Pressure is a symptom of MSA it’s called orthostatic hypotension. It can drop when they stand up or when they get up out of bed. Drinking water will help bring the blood pressure up, but there are also medication that can help. Those you would have to ask his doctor about. Things that may help with the drop is to eat smaller meals 5 or 6 times a day instead of the 3 larger meals. The blood goes to the stomach to help digest the food and the larger the meal, the more blood goes to help digest and away from the head were you want it to be. There is a site that is about this problem that you can view at http://www.signsofnoh.com/

Fatigue is also another problem that seems to happen. This is because most patients won’t go into the REM sleep and they acted out their dreams. This can make them very fatigue so many will sleep for long periods during the day.

Many patients don’t have the normal body temp that you or I would have. It can run a few degrees lower. If this should be the same with your father, then if it happen to go to the degree that is normal for you, then it could be a low grade temp and showing that there is an infections of some kind. Infections could be a UTI (Bladder) or pneumonia. These can cause some symptoms to because worst until they are treated.
I found with my husband sometimes you have to be a little pushies (but in a nice way )with the doctors to get them to do things .
There is a site written by doctors on MSA that list different medications to treat different symptoms. It is written by doctors in the USA, but you may still want to read it and learn more on this disorder. I believe the more we know as carepartner , the better we are armed when we go to the doctor. The site is http://emedicine.medscape.com/article/1154583-overview . It is 35 pages or so , but worth reading.

[Ashlene]

Thanks so much for your help Vera. Unfortunately my dad passed away from this horrible disease yesterday, but he fought long and hard enough and was a man of pride and it was killing him to go out this way. Thanks to all who made this site as it took a lot for me to finally comment but I have viewed this site many times for answers.

[Surfcoastwombat]

Very sorry to hear your news, Ashlene. At least a good man is no longer suffering and is at peace. Good luck for the future. John

[Vera James]

Ashlene, I’m sorry to hear that we have another MSA Angel. My heart goes out to you and your family at the loss of your father. Our prayers are with you.

[Trish Fleig]

Ashlene,
I’m sorry to hear about your dad. The good thing is he is no longer suffering. My mother suffers from this aweful disease as well. She is in the late stages and I pray every day that god give’s her a period where she can talk to whom ever she wants effortlessly (she can’t speak at all anymore) and her suffering will ease.

We did finally figure out a way for her to communicate and has seemed more relaxed in the past week or so. The family knows she will receive her wings before to long.

I hope you and your family are doing well.

[Author]

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