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By HisWife On 2014.06.29 02:44
My husband was just diagnosed in April, though he has been having tremors for several months. Since April, he has been on a higher dosage of sinemet (25/100 3x/day) which doesn't really seem to be helping. Two weeks ago his doctor added amantadine. If there has been any change it seems that the tremors are worse. I have so many questions and I cannot seem to be able to find a local support group. Today I have been a mess of tears all day. Is there anyone willing to help me out and answer some questions?

By lurkingforacure On 2014.06.29 08:53
Welcome to the club of involuntary members! You can post any question you have here, and I would also suggest reading everything you can about PD. Knowledge helps me cope: if you are like that, try to learn as much as you can.

A great site that has a virtual wealth of information is neurotalk. They have a section for PD (as well as MS, etc.) and the members there are primarily PDers and very knowledgable about PD...many are actually in clinical trials although they may not be allowed to discuss it until the trial is over. You can search the forum for your topic and if you don't see it answered, ask! A lot of the members are trying things independently that you can buy over the counter or at a health food store, and share their results, so you may find something that helps your husband.

I will share this from all the research and reading I have done: so far, the most important thing your husband can do is (1) reduce stress (he will have to quit that long-distance commute, might as well do it sooner rather than later), (2) exercise, and (3) eat as healthy as possible. I think aerobic exercise like bike riding and walking is just as important as tai chi which is so helpful for PD. My husband will not do the tai chi and it causes some real issues between us but I just try to accept what he will do and let the rest go because trying to get him to do it causes too much stress for both of us.

Dr. Perlmutter is a neurologist and both of his parent have/had PD. I would read everything he has written. I understand his most recent writings to say that we eat far too much grain/carbohydrates and far too less healthy fats, which starves our brains. He recommends lots of eggs, I think he says he eats 4 a day! Do not discount the importance, yes importance, of cholesterol... research is finally highlighting the crucial importance of cholesterol to the brain.

Read about vitamin B deficiency, which can mimic PD. Neurotalk has a fabulous thread about this and pernicious anemia, it is worth looking into to be sure your husband is not simply B deficient. I would get him tested for this as well as Vitamin D3, which most PDers are deficient in as well. Read about these before you get him tested, as there are different tests and you want to be sure you have the right test done.

I would also get him tested for thyroid function. An improperly functioning thyroid can also mimic PD, and even if he has PD, he can also have issues with his thyroid: a LOT of PDers do. Better to know early rather than later what is going on in that department.

Look into the merits of coconut oil: read Dr. Mary Newport's book "What if there were a cure?" which deals with her husband's Alz. and how he improved taking coconut oil. Some PDers report it helps them significantly: read about this and see what you think.

I would also read Dr. Wahls' book "Minding my mitochondria", she has/had MS and is now walking, lecturing, she got her life back by radically changing her diet to give her cells what they need on a molecular level to function as well as possible. I think her diet is actually the basis of a trial to see if other people with MS see the same benefit.

I don't mean to give you false hope that he does not have PD, just telling you things that I wish I had known when we were dx'd many years ago. Testing for all of this later can be done, but it gets hard to tell what is causing (or helping) what the further down the PD road you go: sinemet, for example, depletes B vitamin but supplementing the diet with B interferes with sinemet's effectiveness!

You have a lot of reading to do, but don't forget to enjoy the time you have together, today:)

By LOHENGR1N On 2014.06.29 09:12
Hiswife, Ask away and We'll try to give you the answers. It's overwhelming We all know and at times it is just a simple answer to a simple question one is seeking at the moment, not suggested research.


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