my father was diagnosed last year. I believe he has had it for a few years atleast. Currently, he is unhappy! And refuses all and any therapies and all but his diabetes medication.
He trips and falls, always cold, feels dizzy all day and night, raspy voice, urinates every 15 minutes, chokes on food, constipated, burps all day, slurs and shakes. My dad sleeps in a chair in the living room almost upright. He is 2000 miles away and I need to get some form of help for him. He doesnt want to move away. Some days we have great conversations and others I have no idea what he is talking about. He repeats him self alot! I dont kknow where to start. Is there stages so I have an idea on where we are at?
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Mamatomany
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Is it possible for you to get permission to talk to his neurologist? We are also in the US and our Movement Disorder center has many support services such as social and occupational therapist who understand MSA and can help. Of course, if your Dad will not cooperate there is little you can do other than to check in with him often and visit when you can.
Your description of his symptoms is very similar to my own husband. He was diagnosed a little over a year ago - symptoms have been slowly progressing for several years. Currently, he can not live alone because of cognitive problems but I can leave him home alone for a few hours at a time. My husband suffers from severe anxiety - are you noticing that with your Dad?
Thank you for replying! I havent noticed anxiety but he also keeps wverythinf to himself. I wish I could get a social worker or someone to direct me of what to do next. Im so lost.
Denial is very hard to overcome in any illness and all you can do is support and inform them of what you see. You may have to shock them to get the reaction you need.
I have noticed that illness and trauma allow progression of the condition and having diabetes will also compound issues.
Sometimes a third party who is not a relative may get your dad to open up an listen.
Good luck
Paul
Im not sure there are exact stages but I used to find the document useful in this link - the one called Pathway:
I'm so sorry your Dad is going through this. Talking to the MSA and parkinson teams are you first point. You, your family and Dad has been hit by the brick of diagnosis. It isn't a stretch to think dispair and depression may have kicked in. Life shortening is all you hear and you think what's the point. Talking is key, the bladder issues can be helped. My husband is on medication that treats over active bladder. That has helped. He will need some medication for nerve pain as time goes on. My husband is often saying his feet hurt. But I would encourage him to see the parkinson team. It's a good start. For you the MSA Trust will give you a wealth of information regarding all the issues you, your family and importantly your Dad will need. Kind Regards Sharon xx
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