My God Rick - what a frightening thing for you to say - by which I mean the statement "If you have any doubts, you had better go, because she isn't going to die from PD. It is much worse than that."


I've had the pleasure of contact with you before, where you've really helped me with my husband's diagnosis, but the "it is much worse than dying" comment has made me plummet yet again to the depths of despair.

...I just don't know. My intent was to shock him enough to make him step back and look at things now, while she had time to build a life with or without him, rather than folding up at a later stage when a threshold had been crossed. My sincere apologies for upsetting you. -Rick

Thanks for your reply Rick.

Your post shocked me, because I always read your words and I've mostly felt better after reading them. This one just knocked me for six, I'm afraid.

Please don't feel you have to hold back in future though, just on my account.

Best wishes,

Viv

....and that is the all-important reason for hope. It is easy to forget that our PD generation is like no other. Twenty years ago there was no internet and the brain was considered unable to repair itself. You died alone and in the dark with no hope. Giving up was the only option.

Consider how that has changed. Instead of waiting for the release of Death, all alone and little knowing what is happening to me, I can get up each morning and fight. I know a hell of a lot about PD. I have access to the greatest library in the world. The best researchers on the planet sometimes even answer my email. And a curtain is being pulled aside. There is the smell of revolution in the air and, if no one else will lead it, then I will. After all, I'm a damn Parkie! It is what we do!
"Never give up! Never surrender!"

That's more like it Rick!!

Viv

Dad has been dx'd since about 1997 or so , his seems to be on a slow progression so far.
But he also has fairly severe DDD (degenerative disk disease)
so he's on pain meds for that and the TENS on most of time.

Would your GF consider some slightly alternative treatments??
like maybe
some expert chiropractic ?
acupuncture? / acupressure ?
Reiki


I'm sure there's more but these came to mind first.

love her...

sounds to me like there's not much you can do but letting her work through things her way. let her see this other doctor and maybe he'll say she should see a neurologist. i first saw an orthopedic surgeon, thinking i had something wrong with a rotater cuff and he told me to go see a neuro. i did and pd diagnosis took 10min, not a lot of discussion occurred. he gave me a starter kit for requip but i waited 5 years before taking meds.

there's no proven treatment for significantly delaying the progression of the disease that she could take now but the sooner she determines she has or doesn't have pd the better, so she could possibly take advantage of a clinical trial.

Ooof.
Anyway, the problem with cutting and running is, I'm not going to do it. Maybe that's foolish of me. Maybe I'll live to regret it. Maybe she will too. Maybe I have noooo idea what I'm getting into and I should probably go visit someone with fullblown PD to see how bad it can be and will be. But I'm not going to. I'd rather live in some denial myself. Also, I don't know how else to behave. Also, I love her.

Soccertese: that's exactly what I wanted to know, that she isn't doing herself harm by doing nothing. Right now, she would have an extremely hard time wrapping herself around the idea of clinical trials; that'd mean full acceptance, and that's still a ways off.

Jo*Mar: Absolutely she's into alternative therapies. She has a strong dislike for the medical establishment so anything outside the norm has great appeal. Do you have any suggestions of how to start investigating those things, to see what might be best for her?

Laura: glad to hear that there's at least some hope, hopeless though it all may seem.

Rick: Thanks for your honesty, I guess, though you words have scared me and brought tears to my eyes thinking about one (the only?) possible future for my girl and me. I find it extremely painful, which I guess anyone would.

As to her business: she's the only one in it and has no one to sell it to or take it over. Her accounts have dwindled over the past year, due to the economy and to her increased fatigue. The work can be brutal, esp when the temps hit the 90s, and I don't see how long she can continue to do it. But she's a total trooper and won't give up without a fight -- which in part also accounts for her denial.

We got her diagnosis from everyone from her GP on up to our state's best-known PD specialist. At one point, she was convinced it was lyme disease and went to see this fellow who believes lyme is basically the cause of everything damn thing wrong w/ us -- and he told her it was PD, not lyme. Crap. So now there's this hand doctor. We'll see what that brings.

"Assume that there will be a bankruptcy in there so she should start thinking in terms of asset protection. If she has anything of value, she needs to see a good attorney on this." -- She lives with me but has a house of her own that she rents out; that's her biggest asset; and her equity in it is less than $100k. Why will there probably be a bankruptcy? Still think we need to see a lawyer? (BTW, she won't go see a lawyer; I'll have to do it myself ...)

Now I'm going so sign off so I don't get more upset thinking about what's (possibly?) in store.

Rick is being brutally honest. We all decline at different rates and in different ways, but quite frankly, if we make it to the end stages..it isn't pretty. However, don't despair. I am summing up some promising novel treatments out there. Note that the vaccine is the first ever treatment to target the cause of degeneration...that is real progress. I would like to see us channel our sadness, despair, and anger toward the fda in cutting through the bureaucratic crap to shorten the time between laboratory, trial, and clinic to patient.

-There is a vaccine in development that may halt disease and slow it down in in more advanced PWP. IMHO, this is the closest we have to a cure. Affiris in Austria started Phase 1 trial earlier this year. U of Nebraska hope to purse vaccine treatment.

-Ceregene trials starting up again. This is for delivery of neurotrophic growth factor that had as setback due to placebo effect. They have corrected for this and how have received over $2 mill to begin phase 2 trials. Neuturin has potential to restore condition of degenerating neurons, to slow progression, alleviate symptoms, and act as neuroprotective.

Nerologix just released results of their phase 2 trial on restoring GABA levels proving that gene therapy works for neurological disorders. The restored GABA controls symptoms.

We do have some promising things happening....

Laura