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@cheyne such a beautiful written response. My neurologist says I have Huntingtons disease and normally you have 5 to 10 yrs. I asked is that form onset of symptoms or diagnosis. He didn’t laugh 🤷🏼‍♂️ I managed funeral home and crematories for over 30+ yrs then was a donation coordinator for a tissue bank. I know what’s coming for our shell… I have been an embalmer for over 40 yrs. When you’re gone you’re gone. I understand the progression of my disease and hate but know it is what it is and it’s no one’s fault and like you said we all die from something at least I know mine and it’s not going to be a surprise… I’m actually really ok with that❤️I have a lot more pain then I’d like and that’s my journey… I hope your journey takes you to a beautiful place 😘

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@mister1
Hi,
I wish I could die at times but this stupid brain I have won't let me give in, so I take the alternate approach and fight for every minute I can get. I have stopped breathing 3 times in the last 4 days and each time the brain realises it is killing itself while trying to protect the brain and kicks the respiratory system back into life. How many more times can I escape my fate, I don't know.
I just received word this morning I'm to be assessed for the long-awaited J tube insertion. It won't cure the myelin problem, but it will give me more time by working around the digestive problems that are causing the major issues and give me the vital nutrients I'm not getting presently.
Fingers crossed.
Cheers