guinea pig
 

Hi Everyone

Does anyone know of any promising new trials out there for a PD cure??
I am ready to be a guinea pig for some promising new clinical trial in the treatment ....no cure of PD.

I've had to double my mirapex. I'm getting more and more tired these days. I want and need to keep working, even tho being an elementary school teacher can be exhausting for a healthy person. I seem to be getting worse...okay I know I'm getting worse.... and I'm wondering if it is time for sinemet? My neuro retired, so now I have to find another one (not that he was a doctor on the cutting edge of new research or anything....He didn't remember me from one visit to the next.

I'm too young for this disease and feeling a bit sorry for myself lately.
Anyone have anything that's working for them that they wouldn't mind sharing?? I'm ready to try anything!!

I consider this PD "club" to be my family. I need some help and advice and maybe a little bit of hope?

:confused:

Some questions, Mary Frances
 

You may have answered these questions on this forum in the past, but I would like to pose them by way of trying to respond to your questions. How long have you been diagnosed with PD? Is Mirapex the only PD medication that you've taken? How long have you been taking Mirapex? How well did it treat your particular symptoms? What, specificially are your symptoms? If the answer to "how long have you been diagnosed with PD" is more than 5-6 years or so,then, it just might be time for you to try Sinemet. My pwp has been diagnosed for 10 years..in retrospect, she has had PD for approximately 12 years. Her first PD medication(s)...other than Sinemet that was used as a diagnostic tool, were Mirapex and Eldepryl...no Sinemet. However, she had to be weaned off Mirapex due to the OCD adverse side effect(was taking Mirapex at its highest dosage when this occurred). It was unfortunate in that she fared extremely well while taking Mirapex...relieved her primary symptom, tremor, and gave her a general overall feeling of well being. When she stopped taking Mirapex, she was started taking Sinemet, and had been taking it (6) 25/100 daily until very recently (and had fared well with this) until very recently until she started experiencing Sinemet-induced dyskinesia. Just two weeks ago, the Mirapex was re-introduced, but at a much lowered dosage than the maximum 4.5 mg daily that had caused the OCD. Her neurologist's aim, now, is to get the tremor under control with the Mirapex so that she can decrease the Sinemet that is causing the dyskinesia. She has just completed her second week on the new medication regimen, i.e., Mirapex (.25 mg. 3x's daily for tremor) and Sinemet now 4 1/2 tabs daily and her tremor is very much controlled; now, it's a matter of trying to decrease the amount of Sinemet to try to alleviate/eliminate the dyskinesia. This has been long, and I'm not at all certain that it will be of any help to you, Mary Frances, but I guess my purpose in "telling this "story" was to try to focus on the "guinea pig" factor in your post...that it IS just that and it's a real balancing act with these "meds"...but, bottomline...(and I guess I just should have said this and no more)...it seems to me that if you have not taken Sinemet, it could very well be time for you to go that route. I realize that what I've said about Sinemet in the case of my pwp's experience may give you a negative impression of this medication, but it's important for me to tell you that Sinemet worked very well for Doreen for a very long time...absolutely controlled her tremor...and, since you are not content with the Mirapex, it just might be time for a change...OR, even a combination of the two medications. Most importantly, I want to stress the "hope" factor. From what I was able to determine from your post, you have not taken PD medications other than the Mirapex...and there are just so many medications "out there"that could be of benefit to you. However, you do need a neurologist who is willing to "work" with you to try to find a good balance of "meds" for your specific needs...and this takes a great deal of patience...but, there IS hope, Mary Frances. You shouldn't even consider your situation hopeless in that there are many directions, still, for you to go.

Blessings to you...
Therese

Hi Mary Frances,
I think if you look around this forum at various threads and posts, there are many things that people are trying that various individuals feel have helped them either a little or a lot. Rick Everett devotes his life to trying to catalog many of these.... But many people list things that have brought some kind of improvement ranging from low-dose naltrexone, children's cough syrup, ginseng, rhodiola rosea, various supplements, tumeric, meditation and visualization, dancing and singing, glutathione injections, Chinese exercise, boxing, the use of mucuna, acupuncture ear implants, and I'm sure many things I'm not thinking of. None of these might bring an instant overnight 'cure,' but many can do a lot to preserve and strengthen the good health that you do have, and who knows where that will lead?

If you say you are willing to try anything, I think there are many things to try and many anecdotal reports that they have been helpful in one way or another. Especially since you are at a relatively very early stage of this - whatever this thing is! - you have a very good chance of responding well to some of these methods that your neurologist may never tell you about, and may fall down laughing if you dared suggest them. But they are certainly no more risky than a lot of clinical trials, and since some people have found them helpful, and you're willing to be a guinea pig, why not experiment? I wish I had done that at an earlier stage before becoming totally entrenched in dependency on a complex and overwhelming regimen of pharmaceuticals...And just to say, I am finally off Mirapex after nine years, and feel better in many many ways. The use of that drug 'helped' in a certain way, but introduced worse problems than the benefits it brought, and I feel in retrospect worsened the condition.... So yes, there is hope. I'm feeling better and happier and like I'm building a more healthy body than ever before, and that's after 20-years plus with this thing...

Fatigue
 

My heart goes out to you feeling as you do right now. We have two small children and I have a hard time imagining how my husband would cope if he had to teach a classroom full of small people like them for his occupation! As difficult as PD is for everyone involved, I am profoundly grateful that it is not something else that would be worse.

My pwp finds that his fatigue from PD is greatly exacerbated by Mirapex, so that could be the cause of some of your tiredness, especially if you have recently doubled the dosage you take. We are going to try Requip in the coming weeks and titrate off of Mirapex, to see if we can get rid of the brain fog and sleepiness that Mirapex causes my husband, we'll see. He has been taking Mirapex from the beginning, over two years, and currently takes .50mg 3 x a day (we were taking more, but he could not stand the fatigue and fog he felt, so we reduced it).

We also delayed going on sinemet for as long as possible, like most, but everyone reaches that point at which the pain/fatigue/fill-in-the-blank with how you feel, simply becomes too much to bear. Meds are there to help, whether we like it or not, so we use them carefully to live as well as we can. We also do supplements, many of which you may have read about on this forum, and are trying plain organic mucuna. You may want to read up on mucuna and see if it might help you out. There are a lot of posts here about mucuna, both the Zandopa brand and the plain old ground up stuff that turns everything it touches black as coal. I wish we'd used the mucuna before we got started on sinemet. Mucuna does not seem to make my husband sleepy, thankfully.

One thing you may want to do if you are not doing it already is to keep a journal of what you take and when, and how you feel. We actually use a spreadsheet with symptoms and a scoring system so we can, as much as possible, see what helps, in what way, and how much. It's very hard to quantify sometimes but you just do the best you can. We haven't kept it 100% of the time but what we have in writing is more than we would ever be able to remember! It's also really helpful to either review or actually take with you to your neuro appointments because we forget how we felt last week or the week before that, or exactly when we reduced this drug to begin taking another, and if you've written it down, with whatever notes you were able to make at the time, it really helps.

I'd also suggest doing stuff that makes you laugh as much as possible, even, and especially, when you feel lousy. Stupid movies (and I mean DUMB, like Blades of Glory, Tommy Boy, So I Married an Ax Murderer, you get the idea) or the comedy channels on the radio (unfortunately, the uncensored ones are the funniest, so you can't listen with kids in the car). Those help my husband and he almost always ends up in a better mood after watching/listening than before.

I do a news search regularly and they are learning, and doing, so much. There are many things out there right now, albeit some are in trial stages. Things like DBS, spheramine, gene therapy (google Ceregene and you will find out about this, in phase II trials right now!!), prosavin in Europe, Cogane in England I believe, if you look these up I think you will feel a lot more positive than you did when writing your post. And that's not including the whole research arm of stem cells, be they your own cells, cells grown in a lab, someone else's cells, some animal's cells, what have you, there is a lot of work going on in those areas, at MIT just this week. If you have a neuro who doesn't keep up with the latest research unless it's presented at a seminar in Hawaii, like we seem to have, doing your own research will help keep you informed and in charge of your health as much as possible.

Take care, and keep the faith. Faith in yourself to overcome PD, faith in our fellow man to find a cure, and faith in whatever supreme being you believe in to give you strength along the way.

...

Sad and hilarious at the same time!! PD presents whole new avenues of humor, doesn't it? :wink: :eek:

mary frances
 

I can't give you medical advice, of course. Primarily because I don't want a lawyer after all my money. I would hate to waste his time :D

But I will speculate about what I might do in a similar situation. First off, I would reduce my stress in every way I could short of medication. If I couldn't leave the job, maybe I could change it? And I would start backing away from the Mirapex even if it meant Sinemet. Too many dark rumblings about it.

But I think that I would try the mucuna first. I wouldn't fool with the Zandopa and I wouldn't try the various pill forms, I would just work with the plain powder and see what it could do for me. If I needed more, then I might try adding in the ginseng, and if that didn't do it, then I'd look at low doses of Sinemet with it.

I'd be tempted to get into something new and physical, too. Break the mold that had built up around me and see what came out.

You are a young woman with a lot of years ahead. It is important that you drag your feet on the more powerful meds and concentrate on things that hold promise of stopping the Beast. -Rick

Are those the
 

usual dark rumblings with Mirapex or are there new ones? Just curious.

just the usual
 

but bad enough

thoughts recommendations and ramblings
 

I'm not sure of what clinical trials that are starting up, but I will share a few thoughts on Spheramine. To learn of the drug any search will give you tons of facts. They just finsished Phase II. It took from 2002 til 2007 to find 71 participants. The results will be revealed in just a few more months. After a few more months of reoganization Phase III is expected to start in 2009. It sounds like a long time but it flies by. Espect Phase III to enlist hundreds. If finding that group takes as long as the last, it could be many years for approval. They are projecting a 2011 wrap up.
I would try to communicate with either Emory University Neurology or Boston Medical Center Neurology. I'm sure they'll both tell you theres no sign up yet, but I would call the first of every month to get listed. I have a Neurologist in his 50"s. He never brought up the subject of clinical trials. Then when I tripped over the study was agains it, stating I would hate to see you get the Placebo and only be in the study for the study and not for yourself. the risks are to great. This same Dr didnt want to take me off permax because i responded so well to it. I said how well would I respond if I blew out a heart valve. He got the message
My med history was Sinmet 25/100 1/2 4x daily
Stalevo100 6x daily
Mirapex 1.12 3x daily
I had the surgery 16 mos ago, now
Stalevo150 5x daily
Mirapex 1.12 3x daily
I still dont know Placebo or not but as progresseiveas pd is I do feel Im in a holdong pattern My off periods are fewer but deeper and if Im late on a dose recovery is slow
At times I say ifi got placebo i'm not going back. Other times I say i've still got 4 girls to walk down the aisle so i must

dear mary frances~
 

I would take levodopa/ carbidopa it is the mirapex that is making you tired - have you checked your blood pressure lately?
it will be low - mine was low -the doctors will put you on whatever you will
allow them to - please do not be unhappy -there are soooo many people that have have no legs -
they are dying from cancers and they are babies,
there are many young people who are sages at 20 a
nd may not live to see 21,
peace be with you - pray for others and you will see your miracles,
there is a cure for PD, pray for it... I know there is a cure - those who
are profiting on drugs - are greedy, do you really want to be a lab rat?
have you seen a lab rat after they give them aspartame?
they grow huge cancerous tumors -
people must live in the now
when you remember the health you had that was greater,
be thankful you are alive -and have so many blessings...
because you do -dear one...

:hug::hug::hug:
be anxious for nothing - but pray and thank god and tell Him you need to lean
on His wisdom...
with love,