15 Years on Mirapex

[Marcia1951]

I just found you yesterday. My name is Marcia, I am now 66, and I have had symptoms since 1997, but took until 2003 to get dx. It was a long, embarrassing process. Have taken Mirapex, then Mirapex ER the entire time. Also, Amantadine . I am an oddity. No one even notices. Few tremors. No shuffle until tired. Combination arthritis and dystonia in left shoulder. Have you ever heard of someone going so long on an agonist? I should be dead by now. Tried a 3 day drug vacation last yr...day 2 wanted to die.

[Astra7]

Always good to hear of people doing well after so long!

Do you eat a special diet?

[Marcia1951 in reply to Astra7]

No. It is very frustrating to be different than others who outwardly struggle so much. There is a great deal of resentment among the PD community because they "can't feel my pain". I attended a conference as the guest last year and the scientists and neurologist from all over the world all told me there was no way I would still be alive by just taking Mirapex. I got a little obnoxious and reminded them I was standing there.

[park_bear in reply to Marcia1951]

You are not the only outlier! Although only 3 years since diagnosis, my condition has been improving this year. My neuro called it classic PD upon diagnosis and I have had no reason to think otherwise.

[parkie13 in reply to park_bear]

Qigong?

[park_bear in reply to parkie13]

Yes, I believe so.

[ASIA8 in reply to park_bear]

Are you taking any meds? Your so lucky

[park_bear in reply to ASIA8]

I take one C/L 50/200 before bed. Also Azilect and NAC.

I do feel very fortunate. My story here: healthunlocked.com/parkinso...

[Idiom in reply to park_bear]

What do you contribute the improvement to?

[park_bear in reply to Idiom]

See the link in my preceding post : - )

[ASIA8 in reply to Marcia1951]

Does this mean that all drugs are temporary means of curing The symptoms & expect patients to be dead somehow at a certain period after taking it? This is sad. But you may have less symptoms than the rest of PD patients. Very lucky.

Did u try detoxing your body?

[Shege1 in reply to ASIA8]

Yes all drugs for now, are only meant to help live a 'normal life' as long as we can. But No, we shall not die of Parkinson's. It is not a deadly disease. If we take our meds, exercise regularly, avoid stress and eat well. You'll see that we'll end up living longer than those who do not have d disease.

[Enidah]

Another post that shows how variable we all are. Good for you for finding something that works so well. That seems to be half the battle, at least. I tried mirapex for one day and couldn't tolerate it at all. I take sinemet and amantadine and so far, so good.

[Marcia1951]

Amantadine is a strange drug. 15 years ago, my movement specialist told me it was a very in-expensive drug because it is a very old one. Now it is the most expensive one I take.

[Enidah in reply to Marcia1951]

I'm curious, what is your exercise routine like. Assuming you have one.

[maharg12 in reply to Enidah]

My Exercise program was made to address my particular challenges at the clinic in Boarai Italy. Basically 1 hour a day walking, cycling etc plus exercises to improve gait and well being. Now 6 weeks from my intensive treatment and keeping the program does take about 1 to 2 hours a day. I am helped by my dog Lily and wife. I am on Rasagaline and Madopor, the Madopor being an addition since the clinic suggested I could be under medicated. Seems to be working apart from a couple of days with nausia initially when I stated on the Madopor

[RS313 in reply to Marcia1951]

Talk to your Dr and ask him to write for the old prescription..you may have to take it more than once a day but it is very cheap!

[RS313 in reply to RS313]

Amantadine

[park_bear in reply to RS313]

Right there is a new, expensive, time-release version.

[RS313 in reply to park_bear]

Yes but my Neurologist said he writes for the old version of this med which is the same except that you would have to take it more than once a day and it is very cheap

[ddmagee1]

Each person is different, in respect to symptoms and severity, concerning Parkinson’s. That’s why some people get so frustrated, when there is a lot of misunderstanding. It’s sort of like snowflakes, if I may use that as an analogy. No two snowflakes are alike. During the course of a person’s Parkinson’s experience, for some, symptoms are very mild for many years, and don’t interfere with quality of life too much. For others, sometimes, the course progression can go faster, within a few years. In order to better understand the reason for this, it’s probably important to have a basic understanding of Neuro-Degenerative disease-specifically in reference to Lewy Bodies and degeneration in the substantia nigra area of the brain. I think of Parkinson’s as several diseases with one name, because of the variants within the Parkinson’s family of disorders. What symptoms develop in a patient, depends upon the extent of neuronal degeneration and precise location of the neuronal degeneration, within the brain. There are many interesting, scientific, researched studies, concerning neuronal degeneration and it’s effect on patient’s diagnosed with Parkinson’s disease. Mayo Clinic, Cleveland Clinic, and many other medical institutions provide information on PD, along with The Parkinson’s Assoc., and the Fox organization, along with others. I would refer somebody to a medical professional, when it comes to suggesting which medications are best for dealing with PD- preferably a movement disorders specialist and/or neurologist. Personally, my Neurologist has put me on several medications, one of which is Sinemet. I have arthritis and dystonia in my left shoulder too.