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.

But we don't know what is in store. Get her to take an anti-inflammatory, an antioxidant, and a mitochondrial booster. Cut the stress with meditation and exercise and life modification. Then just enjoy yourselves.

-Rick

from someone that's seen naturalpaths, did chelation therapy, i.v. glutathione and took a multitude of supplements, i'm after my diag. 10 years ago dependent on conventional meds to function at 50-60% as well as i did 10 years ago. the alt. med. /treatment downside is you can spend $100's/month for possibly no relief, always being told to "just give it a little more time". my point is people with any chronic neurological disease will try anything and if "anything" really worked we'd know about it with the internet. and nothing has popped up on the radar yet.

so if she accepts her diag, try to have her get in a support group and consider a clinical trial, some which may slow down/stop progression. imho, if she loves you she'll consider it and if you love her you'll insist cuz advanced pd is like being very very old.

Rick: for the three things above, could you give me a brand name to buy and a possible dosage? tia!

i woke up at 4 this morning sobbing and rolled out of bed so as not to wake my girlfriend. it's not rick's posts here that did it to me; instead, it's some of the others by other people in other threads, such despair and agony and the wishing to die. it breaks my heart and scares the crap out of me, thinking of my gf in that situation and of me being in that situation, too.

i once stayed in a very bad marriage for 19 years because we had a child born with a birth defect who needed us.

at least in my current relationship i'm as happy as i can be. i hope it lasts through the trials to come. i pray.

i guess the main reason for the big morning sob is that by posting here i've exposed myself to certain realities that i'd been ignoring ever since the diagnosis. maybe i'd be better off sticking my head back in the sand. at least i'd be happier for a little while. i don't know.

well, that's all i can muster for now. jesus.

Linter,

I have a two year old son. I sometimes fear for him in that he may have to make some rather upsetting decisions in my future. I sometimes feel guilty for bringing him into this mess. In fact, my PD worsened as a result of my pregnancy, but I wouldn't have it any other way. Can't imagine my life without him. He is not going to have a "normal" childhood by any means because of this, but then again what is normal?

One never knows what will happen, so while I may find my self in that dark place described by Ol'cs, I don't linger. There is too much life to live still. It's normal to have those little reality flashes, just as it to go through periods of denial. Having a disorder like this sucks because there are no magic pills telling you how to live with it. Our loved ones hurt too; they, like you do, want to help or take it away, but our doctors treat our physical symptoms. No one can take away our anger, sadness,pain, or grief, but you have each other, and that it in of itself a gift. Focus on each other, pay heed to the financial stuff...I would in fact try to obtain more insurance, disability, and or long term care coverage some how, and do this before there is a more definitive diagnosis is on file. With everything else that PD may bring, just roll with the punches, and take it day by day, and laugh at it. Don't give it any more power than that; it feeds off stress, don't let your relationship be defined by it.

Soccertease,

I have to disagree that 'alternatives' don't work. They are expensive and not covered by health insurance. Therefore people cannot afford to stick with them. So they are not realistically assessed. People 'dabble' in them and seldom make use of physical therapies every day or several times a week, whereas they are prepared to take pills several times a day. There are few clinical trials of 'alternatives'. No-one really knows what a dedicated intensive rehab programme might achieve for a PWP because there's no funding for it.

If you look at Moondaughter's recent post about a lady who says she has recovered from PD using Chi Kung, she said she was spending 3 hours a day doing it. That takes a lot of will power and belief in investing effort. And time that a lot of people might not have if they have obligations of work and childcare. That's why alternatives 'appear' not to work.

Linter, advice for your partner - I have benefited from massage therapy [you need lots of it and it's very expensive], a lot of yoga and now learning tai chi, accupuncture, Dopavite nutritional supplement [google it], swimming pool rehab exercises, cycling in the summer, and eating a good diet. I have had major problems with the PD drugs and quit them 1.5 yrs ago.

The alleviation of stress is hugely important, as is social support, love and friendship, interesting things to do by way of occupation, even if unpaid.

Any time spent lurking here will reveal that PD meds are very problematic. It is well worth it, if you are in the early stages where you can still basically take care of yourself, to really throw yourself into retraining your brain as much as possible, into balanced living, better movement and positive thinking. Really give the time to it as a matter of priority, and ditch any excess baggage in your life. You're fighting for your life.

I'm bumping the video that Moondaughter posted of a woman who has recovered from PD:

http://www.youtube.com/watch?v=wAY6XmMxr48

also bumping up the discussion of John Coleman who has recovered from PD:

http://neurotalk.psychcentral.com/sh...eman+interview