The ultimate care giver.: I got an email... - PSP Association

PSP Association

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The ultimate care giver.


I got an email yesterday from a friend of mine who I met through work about 20 years ago. We periodically email each other. She inquired how Larry and I were doing. I filled her in on Larry’s PSP. What it is, his life expectancy and that I have been his care giver for a little more than three years now.

I knew she would understand the care giver part. Her middle child was born with a genetic disease called Familial Dysautonomia. She and her husband both had the gene for this. It is a recessive gene. Each parent has to have it for the child to be born with the disease.

When her daughter was born they were told her life expectancy was 6 years. Whenever she writes I am hesitant to ask how her daughter is doing. I fear the she died answer. Asked yesterday. Her daughter is till doing OK. She turned 31! My friend has been her chief care giver for the last 31 years.

Told her she was the ultimate care giver. She has kept her daughter alive through her own initiative for 31 years.

7 Replies

A true heroin!

Such a dedicated mum xxxx

Wow!! What a success! .. Does she have any tips for staying healthy and sane during such a long commitment to caregiving??

Anne G

Kevin_1 in reply to raincitygirl

Hi Anne

Hobbies really help... I find making Gin in the shed very relaxing.

Couldn't resist - Sorry.


enjoysalud in reply to Kevin_1

Thank you for the laugh. It helps.

raincitygirl in reply to Kevin_1

...but then I'd need a greenhouse for the lime much work! Better, you just save some for me ;-)


Sometimes Jeff166, with the passing of time, more medical information is discovered and more hope. My son has only been gone a little over a year, and yet in that time the trials for BIOGEN and ABB-Vie are being offered. More current "helps" to symptoms are being shared.

Time helps.

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