[FredS]

My 59-year-old wife has just been diagnosed with PD and we're in the process of talking with the doctor about treatments, etc. I've also begun learning about the condition. I'm reading about new medications in the pipeline, stem cells, genes, etc. My question: Is it realistic to think new developments will actually make a real difference over the next five to ten years or so? I'm looking for whatever hope I can find. My heart goes out to all who must face PD. Thanks, FredS

[Sasha]

Originally Posted by FredS

My 59-year-old wife has just been diagnosed with PD and we're in the process of talking with the doctor about treatments, etc. I've also begun learning about the condition. I'm reading about new medications in the pipeline, stem cells, genes, etc. My question: Is it realistic to think new developments will actually make a real difference over the next five to ten years or so? I'm looking for whatever hope I can find. My heart goes out to all who must face PD. Thanks, FredS

My heart goes out to you and to your wife. Good for you for educating yourself. All I can say is that my neurologist, who is not an optimist by any means, and tells me how many promising treatments work in rats but not humans...told me that he really thinks that not five, but within ten years we should see major progress, maybe close to a cure. In the meanwhile he recommends exercise (that just may be to keep me alive - I'm 61)...actually he cited some evidence that exercise is good for the brain.

Welcome to the forum. These folks here are up on everything that is happening in this field, and very supportive to boot. Welcome.

[jeanb]

FredS

There is a clinical trial that will start shortly across the US for CoenzymeQ10. It is for the newly diagnosed - those who have not yet begun PD meds.

Years ago there was a very small clinical trial (80 people) that seemed to show that high doses of CoQ10 slowed the progression of the disease. This new trial will test mega-doses of CoQ10. If I were eligible, I'd phone the nearest clinical trial center to sign up. As it is, I take 1200 mg of coq10 every day.

www.pdtrials.org or www.clinicaltrials.gov

And I agree completely with Sasha - EXERCISE is key - your wife should exercise as much as she can!

On a personal note - I am 57 and it's 5 years since my diagnosis. A friend with PD and I have created a website to give people with PD (PWP) hope. I hope you check out our website:

www.pdplan4life.com

Good luck to you both.

[Fiona]

Hi. Please have hope. There is hope. There are many feisty PD'ers around - also lovely gentle ones, and hilarious, divinely entertaining ones - all demonstrating unique and wonderful versions of hope.

The latest study that implicates COQ10 tells me not to waste my money on this very expensive product, or at least consider very carefully.

http://www.medpagetoday.com/MeetingC...eeting/tb/9205

The link below talks about Mucuna pruriens. It is the abstract of a patent application made by some people including a very prestigious top American neurologist that makes clear that the usual prescribed medication is neurotoxic and that mucuna may provide an alternative to that. The applicants obviously were interested enough to want a proprietary relationship to it. I'll let the abstract speak for itself.

http://www.freshpatents.com/Pharmace...0060165822.php

welcome to neurotalk and I hope you find it useful.
Fiona

if for some reason these links don't work, pm me and I'll hook you up

[Fiona]

oh, I forgot to add - and I apologize because some of us already know this and I realized that you're new - mucuna pruriens is an FDA approved substance and various versions of it are readily available. I have been getting mine - although this is probably not the best source - at my local Vitamin Shoppe for about $15 for a month supply. It's, er, cheaper than Sinemet and evidently doesn't destroy your brain.

[Fiona]

I'm so sorry - I have to post one more time - in thinking about it, I realized I am seasoned by dealing with this for a while, and just remembered again how bewildering and confusing it is for the newly diagnosed. I offered the info above because it is some of the latest and some of the clearest that I have found about alternatives, but I know that doesn't help a lot necessarily if you're not used to reading medical abstracts etc., and also if you are just trying to get acclimated to dealing with the whole medical world in general about this condition.

It can feel very frightening and discouraging to get this diagnosis. I got it myself in 1991 at the age of 34. I wish the doctors had told me a few things then that they didn't:

Every person has his/her own course with the disease, and there is a huge variation between how people respond to their own symptoms, the medications, etc.

Many, many people do well for many years with this diagnosis. I have heard of people going for 30+ years some even without or with little medication.

Up to 25% or more of people are misdiagnosed and the criterion for the diagnosis are not super-precise as of yet. Not sure how to use that info, but if I had known that better at the time, I might have asked some more questions and not just assumed that the doctor's pronouncemounts about my future were necessarily correct.

I was told at the time that "we'll have a cure in five years," - that was 16 or more years ago now. On the positive side of that, my doctor thinks gene therapy is going to be the answer but that might be up to ten years away yet. Meanwhile I urge you to consider all your alternatives before deciding what you want to do about it...and that's difficult because it's hard to sift through all the layers of information and opinion out there about it. This site and others can be very helpful in terms of other patients' experience, which in general I find more helpful and comprehensive than what you'll get from most doctors. But it does put you in the positive of having to make your own choices and go with your gut about whatever you read.

The patent thread I gave above really excited me because it so clearly states that there is very possibly a viable alternative to the toxicity of the currently prescribed medications. It just hasn't been talked about by the medical community, although this shows that obviously it's not unknown, and the fact that one of the US's top neurologists is an author of it gives it some credibility. If you want to pursue that subject, there are many people here and on other sites who can offer the benefit of their experiences even in just trying to read that kind of material, and trying it themselves. Most of us are here because we would do anything to help you find your way.

I hope this helps a little. I know the cloud of frightening expectations that can descend on one upon receiving this diagnosis, and I just want to say that there are many ways around and through it, and the future looks brighter all the time.
God bless...

[Sasha]

Here are a couple of books and a DVD That I've really found helpful. None are expensive and all are readily available....Do other people have favorite books or etc. that help in dealing with this disease?


On Amazon:

HOPE: Four Keys to a Better Quality of Life for Parkinson's People (Paperback)
by Hal Newsom (Author), Craig Howard (Editor) "You can probably recall your exact emotions when the pronouncement came from the doctor, "You have Parkinson's..." (more)


Parkinson's Disease & the Art of Moving by John Argue (Paperback - Feb 15, 2000)
Buy new: $19.95 $13.37 32 Used & new from $8.98

Elsewhere:

Motivating Moves for People with Parkinson’s
What People have to say about Janet Hamburg’s Motivating...
How to order a videotape or DVD of Motivating Moves for People with Parkinson’s ... Comments from participants who took Janet Hamburg's Motivating Moves ...

www.motivatingmoves.com/people.html

[Jaye]

Hi, Fred,

While my respect for Fiona is enormous and I like her spirit, my advice is going to be quite the opposite of hers. Because of where I live, I have had the great good fortune to have found some of the world's best neurologists, neuroscientists, a neuropsychiatrist, and a neuropsychologist who work as a team with me (almost all the time) and give me great, great advice and care (almost always). It really helps that I stay up on things. I would suggest checking the websites of the big charities--especially NPF at www.parkinson.org and MJFF at www.michaeljfox.org for mainstream medical info. WEMOVE (www.wemove.org) has suggestions for a Care Notebook that you can use to keep track of all the questions and details. Neurologists love facts, and the more clearly and quickly you can convey them the better the resulting care will be. But don't hesitate to change neuros until you find one your wife can work with, if there are some good ones in your area.

I've been diagnosed with PD for 9 and a half years, and I just started selling my own handcrafted jewelry, having taken up the "beading" hobby less than a year ago. (I went to a craft fair on Thursday, and actually sold something!) Not that I don' have limitations, feel sick to some degree almost all the time, pray for a miracle, and get paranoid about a few things (don't get me started on Big Pharma), I have found PD to be a wonderful spiritual opportunity that has deepened my faith and happiness. Religious or not, I advise your wife to maintain an attitude of optimism, keep exercising, and take a moment each day to look at or think about something beautiful--a flower or a kindness--to give the self a rest.

In other words, never let the thing ruin your whole day.

Remembering those first days, I think of what my husband said when i was going over the treatment possibilities for the tenth time that day. He said, "Look, we're not going to solve this thing, we're going to manage it."

Best of luck,

Jaye

[indigogo]

Hi Fred!

Lots of hope out here . . . I am 50; was diagnosed 9 years ago, and am doing fine (knock on wood!).

When I was dx'd in 1999, the medical science "hope" that there would be a "cure" within 10 years was very high. Now, almost 10 years later, there is still no cure, but my hope hasn't dimmed. Research has since shown that PD is a much more complicated set of disease processes than had been known; thus there is a greater chance of at least pinpointing and treating the various symptoms and associated challenges of living with PD.

My advice to you and your wife is to find a neurologist, family practice doc, or movement disorder specialist who treats the WHOLE person and family; PD is much more than just a movement disorder. Please familiarize yourselves with the "non motor symptoms of PD" and look out especially for depression - it is common among PD patients, is devastating physically and emotionally, and it can be treated!

Also, your wife has every expectation to improve or at least maintain on whatever treatment regimen is prescribed by her physician. This requires that you have a good relationship with your docs; there are many ways to treat PD (my doc has me on 2 pd drugs, an antidepressant, meditation, and exercise - keeping the stress down is key!). What works for me does not work for others. Do not be complacent; she should take an active role in her care.

Welcome to this community; it is thriving, hopeful, knowledgeable, and most importantly, understanding.

[EnglishCountryDancer]

The time of diagnoses is devastating,not only for thePwP but for those who love them.I come into the latter group so I have some idea of how you feel.I kept going into websites hoping somebody would announce a possible cure. I was desperate not to miss some tiny snippet of good news.In the last year I have learnt to be hopeful but to live for today and grasp the good moments.