NeuroTalk Support Groups - I am missing you all

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Correction: Where Will You Be December 7, 2008

Fiona-
I forgot to add that I also take a sinemet, stalevo, and requip. I guess I figured that goes without saying, then I realized that it should be specified.
Cyndy

Quote:

Originally Posted by Fiona (Post 383537)

Hi everyone - sorry to be so out of touch. I have had to go underground a little. After I got back from the Werth clinic in June with the permanent ear implants, I got pverwhelmed by chronic gastric distress. I also finally titrated off the Neupro patch without replacing it with Requip or anything. At the same time, the Mucuna stopped working for me; and I was struck with extreme, crushing depression daily. I was so weak and debilitated that I fled.

Now I am down here on top of a mountain in South America for a bit. Internet access very tenuous - much easier for me to read than send. But I really miss you all - Charley, thanks for inquiring and I know I have many beloved friends here that I am dying to catch up with.

The good news is I am much better. Super-scary gastric issues that had flattened me completely are gone (gum mastic - yay!). Extreme constipation (and we're talking a month - nada)improved to better than it ever has been thru six colonic irrigation sessions and a probiotic colonic implant, and a firm change in diet: no processed food. At all. Eggs from the chickens in the garden, milk right from the cow, and if you want meat for dinner, you get a live chicken from a farmer and wring its neck. Changes your whole perspective.

Contrasted with that is the innovative and direct treatment I am also getting here - very subtle homeopathy, oxygen therapy, and the possibility of treatments...well, let me say not available in the USA yet.

So I feel considerably better altho still working on the depression. I think it's part of the price of going off Mirapex - but interestingly similar to..'The depression I had when I first noticed symptoms. So I feel I am dealing with heart of my particular issue - probably a life-long imbalance of serotonin is my guess.

Hard to tell about the ear implants because there have been so many other issues, but my sense is that they are a good thing and are and will play an increasingly positive role. But I have lost a necessary 15 pounds and am doing at least an hour of karate training a day. Plus my walking is MUCH improved I- virtually no shuffling episodes.

The doctor I am working with is great and extremely knowledgeable. Once I check out this treatment a little more, I will give folks.some specifics because I think this could be very helpful work for some. But knowing where to go, how to do it, etc. I know is a big challenge, and my goal is to be able to help others with it, if at all possible.

So dealing with core stuff down here, but missing you all and looking forward to being in touch.

Best,
Fiona.

Thanks to you all for writing

It´s really great to hear from you all. Sorry that it is so difficult for me to get internet access right now because I would like to write each one of you individually. As sooon as I can, I will. Keith, I think they drink their beer both ways here. Tena, thanks for the beautiful suggestions, as always....Steve, Carey, Paula, Rick, Evon, Max - your words and thoughts mean a lot. Cyndy, you too - not sure yet what´s happening in December for me, but if I can participate at the JCC, I will....

Will write again soon.

Fiona_
Great! We'll be in touch as the program gets more defined.
Cyndy

Fiona, welcome back! (I also have been underground), and Olanow update...

Hi, Fiona! I wonder how you are doing very often, and when Cyndy said yesterday that you'd popped up from underground to say hi to Neurotalk folks, I was so happy to read your post, (which I just did.)

I envy you your fresh and healthy food, just off the land, and your closeness to nature. I'm sorry things have been so very difficult for so long, but am relieved to hear that you're doing things you need to do to feel better, and that you seem to be emerging from the proverbial woods.
Better there than here-the tension here in the US around the financial crisis and the mob-like ugliness being stirred up by the Republican right-wing loonies all make my symptoms worse. On the bright side, the shift towards Obama is consistent and steady, and I am feeling hopeful that we are heading towards saner times.
I need to order that mastic gum. Everything I've tried to beat h-pylori, including following advice of neurotalk friends, hasn't quite done the trick.
Sigh. There are many long stretches each day when I'm doing great, though, and am thoroughly enjoying my clinical trial twice-weekly exercise class at LIU, with Cyndy and others from PD dance class. We do aerobics and weight machines and I feel very strong when I'm doing all of this. Azilect is apparently helping me with better "on" periods, too. I started it about 6 weeks ago.
Still awaiting news on clinical trial phase 3 recruitment sign-up for California gene therapy. That one, when it starts up, will be seeking about 300 people, and not only from US, accordingn to our doctor. But..Guess what researcher is part of GAD gene therapy Clinical trial Phase 2, the gene therapy out of NY that Dirocco was not as enthusiastic about? Warren Olanow...So, later for signing on to that one!
Conversely, I still have very, very bad debilitated "off" periods each day, and fear going out alone and unaccompanied for this reason. Life at home is tough with my super-challenging almost-sixteen year old kid, who is the life and death of me, almost literally.
Have to go. Glad you can join Cyndy and me for Dec.7th workshop! Stay well, Brave Fierce One, and beloved friend.I send big hugs. love, Leonore

Fiona,

Many of us seem to be in the same boat. i take sinemet every 2 hours and by a miracle from above the same 2 amantadine that i've always taken keeps me from being dyskinetic. i'm crazy every day by dinnertime, but sitting still after 14 25/100s.

I just talked to Carolyn, who is in the Ceregene trial. See the third PDF webcast when it comes online around the 20th . It's on surgical procedures and I was thinking DBS and didn't watch it. But duh, gene therapy is surgical and Kordower, as related to me by someone who was there, gave a great presentation via the web. He stated very clearly and i have heard him say this directly that he would have used amgen's GDNF instead but we all know that story. Things i didn't realize:

Neurturin is only going to do what DBS would. improve your motor symptoms.

Carolyn is off alll meds .

I"m going to try like h---to get into phase III ceregene.

Hang in there all of you and keep posting. we all need each other. i'm moving back to florida nov 8 and have decided to keep my little house. NO grandson or daughter living there - they are nearby - and it's an open invitation - the more the merrier---let's get together.

paula