My only brother was diagnosed 4 years ago with MSA following a lifetime of drink and drugs. He had just spent an entire year in hospital in the Philippines. He currently still lives there with a man friday looking after him, bringing him meals etc. My brother also has a son who is living with him. i cannot have a proper conversation with my brother. He does not ask how my family is. His capacity to fully understand things seems to be diminishing. We are now afraid he may be deported and if he is he will have to made a ward of court as he has no means of supporting himself. There was a trust fund set up but those funds are quickly running out.
When he was given the diagnosis, he was given 5 years. He still smokes 40 a day and drinks. Can anyone advise if the inability to converse is a real MSA issue or maybe its due to brain damage caused by his lifestyle. I wonder also if 5 years could turn into 10 ?
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scarke
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It all depends on what you mean exactly by inability or difficulty to converse. I'll tell you about my MSA and communication and you can see what looks the same or different with your brother. My MSA diagnosis was May this year, in March 2021 they thought I had Parkinson's but prior to all this there was a noticable speech problem of a quiet voice.
As the disease progressed speech got worse due to excess saliva so I often have to stop mid sentence to swallow. MSA then affected swallowing so speech is interupted by coughing. then there is slurring so sometimes it sounds as if I am drunk.
MSA can also cause difficulties with word finding, I know what I want to say but cannot retrieve the right word from my brain. All of these problems result in hesitant,interrupted and slow speech which is easily mistaken for a diminished mental capacity.
Coping with all this and trying to maintain a 2 way conversation on the telephone is very tiring, maximum for me is about 40 minutes. If the person I am speaking to has a poor understanding of MSA and starts treating me as if I have diminished mental capacity I will be rather less interested and will be cutting things short.
Then there is the symptom of emotional lability where MSA makes me laugh or cry at inappropriate times. Highly confusing to the other party.
For your brother I would say the only way you are going to get an answer as to whether mental capacity is affected is to have proper psyc' tests done. It'd probably be unlikely any tests can apportion blame between the 3 factors of drink/drugs/MSA.
Fundamentally however I have to question what you are trying to achieve. Your brother chose his lifestyle before he knew he had MSA, then he gets a terminal diagnosis and is given 5 years and he decides to carry on as before. A not unreasonable decision I suggest. I very much doubt you will find anyone who is told they have a random incurable fatal disease suddenly decide to give up smoking/drinking/drugs/choccy biscuits or whatever in the hope they can live heathily and add an extra year/month/week to their journey.
We know you love your brother, we also know you don't love his lifestyle choices. In the ordinary course of events I would say tough,he's an adult, suck it up but in the circumstances of MSA I think i'll raise that to the power of 5 or maybe 10. So my advice would be don't badger him about drinking, smoking, etc. Be nice, ask if there is anything you can do for him, anything you can send him,etc.
Maybe, maybe soon he will show more concern and ask about you but you don't *really* need that because you are in the lucky cohort who are going to get their 3 score plus 10,20 or 30 and very likely a nice comfortable fur lined journey for you too.
Anyway, and finally, I speculate that I have probably wasted far too much time on the details in your post when in fact the whole raison d'etre of it has nothing to do with drink drugs man friday,mental awareness or trust funds but is simply due to one feeling in your heart about something you have realised. If I am right I invite you to TURN ON CAPS AND LET IT OUT.
We, that's those of us here in the lucky AND unlucky groups, will try to help.
Thank you so much for your long reply. As you said , its difficult to know whether it is MSA or drink/drugs. MSA seems to be quite rare in Ireland and finding out information about it is difficult. There seems to be such a wide variation in each person too. The one constant worry for us is that the trust fund he lives off is running low and if and when there is no more money we honestly do not know what will happen. He cannot access health care in Ireland were he to come back to Ireland. I guess we have to wait and see. Thank you.
My husband lost the ability to speak, at first stammering and slurring, rushing out his words in a strained whisper. His mind was perfectly able to converse except his body couldn't because he had also lost the ability to write, type, even use his eye gaze machine.
Loss of speech is very much a real MSA issue and of all the horrendous things this disease can bring, for me it was the worst. So sorry to hear your brother has reached this stage. So difficult for you all, as well as him.
He is able to talk over the phone ok but the conversation is always about him, he seems very uninterested in anything else...but because we cannot visit him we actually do not know what the situation is like...we have videos and to be honest he looks very lost and a shell of what he once was.....
MSA is very rare disease everywhere and nothing can be done to cure it. all that can be done is symptomatic relief of whatever form it takes and sadly that does not always work. Nothing, neither stopping recreational drugs nor starting them, stopping smoking or starting will make any difference now or in the past so there is no reason for you to feel any "if only I had done things differently "'. from a practical point of view the trustees of the trust fund need to be aware of the situation but MSA on its own is so unpredictable that it is difficult to make plans. There is a form of dementia associated with MSA, this may account for his lack of interest or he may just be too wrapped up with his own problems to care about anyone else. from your description of him I would guess that the 5 years may no be far of the mark. but that is a wild guess on my part.
how worrying for you especially as he is so far away. The only thing I can think of is to speak to the Trust nurses they are wonderwoman so I think. Sryy Can't help v tired now God bless
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