Thank you John for this website

[Pamela Wells – Michigan, USA]

I just recently contacted John regarding my mother’s diagnosis of MSA. I found this website to be the most informative for me and my family so we could prepare in advance to what is to come. My mother is only 62 years old and was initially diagnosed with Parkinson’s Disease a couple of years ago but just recently re-diagnosed with MSA. Having been through my father in law’s illness with Parkinson’s I knew my mother’s illness had to be something different.

My mother is at the stage now where she cannot walk on her own and we are now looking at wheelchairs. Her speech is becoming more difficult to understand and her activity is now limited to just getting out of bed to use the rest room or sit in a chair in the living room. To watch her decline so rapidly is almost unbearable and we all feel helpless. My mother is fully aware of what is to come and depression has fully set in. We are trying our best to give her the best quality of life we can but struggle between wanting her to live and be with us for many more years but then pray it goes quickly so the suffering ends. We are in shock how quickly she is deteriorating.

Thank you John for this website. It has been helpful to be able to compare your story with ours and gives us some insight on how to handle the changes as they come. I know how difficult it must have been to share your story such as you did but it has benefited my family tremendously and for that I am thankful. God Bless

[Surfcoastwombat]

I’m sorry to read of your struggle but at least your mother has had 62 years of life to enjoy and I know that those of you who have cared for her will be the richer for having done so – in time.

Regards
JC

[Pamela Wells]

Can you tell me John the duration of life for Patricia after diagnosis? As quickly as my mom is declining we want to be as prepared as possible.

You’re right, she has had 62 wonderful years.

[Surfcoastwombat]

Once Patricia was “correctly” diagnosed, her Neurologist said that the normal prognosis was a duration of between 7 and 12 years. The problem was – working out when it started. We settled on a date when we thought we first noticed that something was wrong and Patricia went for about 13 years after that date.

However – if she had not chosen to have a PEG, she would not have survived anywhere near as long as she did. When the staff at Bethlehem Hospital recommended that Patricia stay there permanently rather than go home after a respite care visit, it is my belief that they believed she only had 3 months to live at best. But a combination of a strong heart, an even stronger will and the PEG saw her survive for 15 months before she passed away.

It is very difficult to estimate – the best person to give you any idea is your mother’s Neurologist.

Regards
JC

[Pamela Wells]

Once again, thank you

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