Russell Dean Boyer
Forum Replies Created
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I first heard the term Parkie in something from Australia. I thought it a great term because it cuts Parkinson’s Disease down to size. Now I use it frequently.
Parkinson’s doesn’t define me. I am a parkie, I am a bibliophile, I am a Rotarian, I am an American, etc. Yes, I have a medical condition called PD and it is complex and difficult as are many diseases. It is unpleasant but all diseases are unpleasant.
If I know someone is offended by the term I won’t use it about them. If I offended you by using it about you, I apologize.
But I use the term about myself and others for the reasons above. And if people say I am a Parkie, I agree with them and am pleased because I feel they see PD as just one aspect of me.
Russ
Russ
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In response to Paul
The regulatory process is indeed a major issue. However, there are enough Parkies around that if a viable cure were found I would hope that the pressure from the community could force the FDA to speed up the process on a compassionate basis. And if the EU or some other country took the lead, you might find a lot of airplanes full of twitchy people heading that way.
And if the same process applied to Alzheimer’s patients (as may be the case with a couple of research approaches under study) then I doubt the FDA would be able to drag their feet.
But then I am by nature an optimist.
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It may be wishful thinking but I believe a cure will be found in that time frame. Whether it will get through the regulatory process in that period is the question. There are so many discoveries being made and so many different approaches being tried that the odds are something will be found.
As for the pharma question, I may be thought biased since I worked in the industry most of my career. As one person said, there is not a lot of money being made off of existing generics. But even more important than that are two points:Â Â Â Â Â Â Â Â Â Â Â Â Â A. Maybe Amneal Pharmaceuticals is making money off of Rytary but that does not help the profitability of all the other companies investing in research into new products now. They are spending money and if they get nothing back for all the investment they have made, they might be looking for a new job. On the other hand, if they find something better than existing products, they not only might get a bonus but they will look like heroes also.
B. Some of them have Parkinson’s also, or have relatives and friends who do. They genuinely are motivated to help people. They see the patients and know that people are suffering. Not many are that cynical that they would hide a cure even if they had a profit motive, and as I said above, there isn’t really any way they are going to benefit financially by not selling a better product.
Ask yourself this. If you or your relative were working or had worked in a pharma company that discovered a cure for PD and buried it, what would you do? If it were me I would scream my head off, and no one could buy me off with a few dollars. I suspect everyone else would do the same. So believe me, everyone working on a promising new therapy is hoping for a breakthrough and working hard to make it happen.
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I’m waiting for an appt to discuss DBS. I am hoping the neurologist will say it would be beneficial. The idea of it is not very frightening to me because I worked in the pharma industry and know that a doctor who was trained at the UCSF Center of Excellence for movement disorders is competent and can be trusted. I mean, nobody wants things poked into their brain, but if it is a choice of that and being miserable from PD, I want to get some symptoms under control and am willing to try something so commonly done as DBS.
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I have had similar but milder symptoms at times. It is hard to describe what I am feeling but you did a good job of putting it in words. In my case it is usually confined to the arms and I find myself kneading them, moving them, wanting to do just about anything to stop that sensation. I have even tried sticking them with a pin as a counterirritant but the problem is the pin pain doesn’t last. This almost always happens at night, as does RLS. Sleepiness seems to trigger it but that is only an impression, I haven’t tracked it closely.
In my case I have had strong side effects from amantadine and can’t take that but luckily pramipexole does the job; I just have to increase the dose.
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Personally I want to go to Nombei, an Izakaya here in Honolulu. Their food is quite authentic for a place outside Japan. Then there is Arancino in the Kahala Hotel, Nobu, Rigo…..the list goes on and on.
Russ
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I can’t wait to get out to restaurants, etc. I am 81 and have PD, so what do I have to lose? At most I have a few more years of being able to go out and travel and enjoy life. Hiding at home is not much of a life so it is now or never. If I lose the gamble, so be it.
If I were younger the equation might be different and IÂ don’t judge those who feel differently.
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You don’t describe where the pain is but if it starts in the back and goes away as the day goes on, it might be the piriformis muscle. Google that for a description.
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Actually I thought I saw a few flashes at first; I had forgotten about that. In my case, they didn’t persist. But, as I said, we all react differently. I formerly worked in the pharma field.
I wish there were generics from more reliable suppliers. You should read up on why Ranbaxy was fined $500 million by the FDA. (That is not a typo, it is a half a billion dollars. And I thought that was letting them off lightly.)Â I have many Indian friends but when I worked in the pharma industry I had uniformly bad experiences with ingredients and manufacturing equipment from India. However, in fairness, Dr. Reddy was not one that I worked with.
To make it harder to identify the generic manufacturers as of Indian origin they use names that sound American or Scottish, etc. But you can check the board of directors and find they are all Indian.
My rant for the day. I love their food and know many exceptional people from India but I wish I didn’t have to use their generics.
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See my reply to Bob.
The pramipexole worked for me for a while but then when the edema got too much we switched to Rytary and it has been great. But it is expensive.
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Bob:
I started out on carbidopa/levodopa and after about 2 years I started getting dystonia in the neck; my head would move back and forth when I didn’t ask it to.
My doctor switched me off of carbidopa/levodopa entirely and onto a dopamine agonist, pramipexole. That stopped the dystonia entirely and also took care of restless legs. The restless legs stopped immediately on the first dose, which was a big relief. However, as time went on I developed edema in the lower legs.
After about 3 years of pramipexole, and increasing doses being needed, the water on the legs ended up causing a couple of large blisters which broke. They took a long time to heal. Since edema of the lower legs is listed as a side effect of pramipexole, we figured that was the case.
The doctor added Rytary, slow release form of carbidopa/levodopa, to my treatment, and we have been slowly reducing the dosage of pramipexole. The edema hasn’t gone down so it may be due to a different cause.
But the thing is, the Rytary has not produced the dystonia of the neck at all and it has been about a year since I started taking it. So that is a great relief. But it is very expensive, that is the only drawback.
As I reduced the pramipexole to 0.125mg 3 times/day my restless legs came back so we are continuing that at a dosage of 0.25 3 x per day.
But each person is different so what works for me might not for you. I just offer this for your info.
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The first time I took amantadine was very encouraging. About two hours after the first dose my tremors subsided remarkably.
However, that is not the full story. At the time I was taking an ACE inhibitor for blood pressure. ACE inhibitors are well known for producing a dry cough and I had one which gradually got worse. I would be OK on awakening and get hoarse as the day wore on, and my cough kept getting worse. I realized I had gastric reflux causing the hoarseness and coughing.
A pulmonologist did a barium swallow test where they do an X-ray video of you while swallowing. Afterwards she said, “This is bad. This is very bad. In 1 to 5 years you will no longer be able to eat. But don’t worry, we can put a hole in your stomach and pour in nutrition that way.
This was obviously a worry but about 3 weeks later I realized that I woke up without the gastric reflux and about 2 hours later I grew hoarse. And that was two hours after my amantadine dose.
I stopped amantadine for 3 days and the hoarseness and cough disappeared. I restarted the amantadine and it came back. I stopped amantadine and it disappeared.
That was 6 years ago and I haven’t had swallowing problems since.
I don’t blame the doctors because this seems a rare side effect. If you look in the Physician’s Desk Reference you find it is not listed as a side effect which showed up in the testing process. However, after marketing it seems a number of other side effects are listed, including “dysphagia” or difficulty in swallowing. Just that one word!
My point is not to run down amantadine but rather that there are a lot of side effects possible with many drugs and we just have to be observant. I was lucky that the 2 hour connection between the amantadine dose and my coughing hit me.
We can’t put it all on the doctor. I am sure amantadine is fine for many people, just not for me.
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I agree with MaryAnn. Focused ultrasound is less invasive but it is ablation and therefore irreversible. If a better option comes around it may not be possible for people who have had focused ultrasound. I have heard that since Michael J. Fox had ablation he can’t do DBS now.