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Mark5151

Newly diagnosed- any advice?

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I was recently diagnosed.  51 years old. I live in Pittsburgh pa and am self employed as a software consultant.  

my basic plan is

- learn all I can, try not to rush into panic, started taking a few more supplements, didn't start right away on azilect which was prescribed, doing more exercise

I need to get an MRI to rule out other causes but my gut says I have Parkinson's 

so far symptoms have been

- twitch in left arm, getting more and more noticeable over last few years

- a little stiffness

- bad memory, maybe a little dementia over last few years

- lost sense of smell maybe ten years ago

 

any advice from those that have more experience?  

Thanks in advance,

Mark

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Mark5151.

Welcome to this forum.I am sure you will get some support here.Your symptoms looks more like that of PD,but consult with your MD,preferably a motor disorder specialist and complete all your exams and tests.Some MDS will require DAT scan,while some will not for confirmation of parkisonsm.The first med prescribed is usually Azilect.I was prescribed Azilect too initially by my second MD,and did not start using till I sought a third opinion from a motor disorder specialist.Most MDs say PD will progress whether you use medications or not.Although there are some experts that think Azilect slows down the progression of PD,whereas others don't.Azilect only worked for me for two months.Currently on sinemet,which has been working fairly fine.Of course,exercise is very good,with or without meds.The experts say symptomatic treatment of PD is individualised.Welcome again.

 

 

Edited by otolorin
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Your first step is to get a good MDS. I graduated from PITT-can you go to UPMC? They are doing some great stuff - I met one of their researchers.  PITT MED magazine did a great story called fishing for clarity about their PD research. 

 

http://www.pittmed.health.pitt.edu/story/fishing-clarity

Exercise is great! 

 

Good luck

LAD

 

Edited by LAD
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Thanks for your feedback.  I have an appointment in about a month with a mds and  I also went to Pitt.  I'm a little afraid of getting on any medicine so hoping to postpone that until I really need it for symptoms.  It seems like medicine is the only thing that works for symptoms?  I just don't like the side effects that usually come with medicine ?

 

Any insights on things that worked well for others are appreciated

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Mark,

I was diagnosed 2 years ago at the age of 44. I started right away on meds as my tremors were pretty bad and causing me issues at work etc. While I somewhat understand the "fear" of meds I also decided I wanted the best quality of life I can have immediately and will deal with whatever comes. I have had to increase meds somewhat over the last 2 years but not dramatically although I am finding a hard time getting a good routine down that will have the meds lasting all day. Anyway, do your research and learn all you can and then make the best decision you can make for yourself. 

 

Hope that was somewhat helpful!

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I understand the need to use meds when symptoms demand it.  Guess I have read so much about once you start meds you will gradually need more and more and there are side effects (some pretty bad) so just trying to postpone the start down that road as much as possible.  I did start taking some supplements and mucuna pruiens for some relief from tremor in my hand.  I don't feel my tremor is that bad right now, more worried about my brain being messed up and possibility for anxiety/depression scares me.  I had some of that after my divorce and don't care for it at all!!

Thanks for sharing, always helpful to hear what others did and why.

Mark

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It's a personal decision- no right or wrong answer.  Inform yourself as much as possible and do what you think will work for you.

PD is different for everyone. It's almost like a puzzle that you do over and over....same puzzle but you put it together differently each time. Corny analogy but it works. 

 

good luck 

 

LAD

Edited by LAD

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It's interesting, for lack of a better word, that PD is different for everyone. Sort of taylor made. I guess that all that I have learned and continue to learn are the numerous possible symptoms and issues that one might face. It's an easy trap to fall into. Wondering what all the things you might face. Certainly one needs to be educated to the PD facts to be able to make the best decisions along the way.

The sweet spot, which for me moves relatively slowly at the moment, is the right dosage of meds and continued vigorous exercise every other day. The other days I try to make sure to do PD stretching exercises. They're easily located on You Tube. The BIG program is a good place to start.

Good luck!

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Advice? Have as much fun while you can, and don't fret. Key thought? "You will NEVER feel better than you do today"....so, anything you want to do: travel, sports, work, love, etc, do now.

Yeah, maybe they will cure it in 10 years. We can all hope. But in the mean time, live for today. I am having more fun NOW than I did 20 years ago. I am a little worse today, than this time last year. And last year I was a little worse than the year before. Don't let time sneak past you. Go out and have fun.

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3 hours ago, MusicMan said:

Advice? Have as much fun while you can, and don't fret. Key thought? "You will NEVER feel better than you do today"....so, anything you want to do: travel, sports, work, love, etc, do now.

Yeah, maybe they will cure it in 10 years. We can all hope. But in the mean time, live for today. I am having more fun NOW than I did 20 years ago. I am a little worse today, than this time last year. And last year I was a little worse than the year before. Don't let time sneak past you. Go out and have fun.

Well said...adjust, adapt and seize the day!

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Hi Mark,

Going to put my 2 cents worth of knowledge in. I started meds about 8 months after I was diagnosed. The stiffness and pain just got to be 2 much for me to perform my work and exercises. I started on Azilect at first. After titrating up to the full dose (about 2 weeks) I found that the cloud of doom I was feeling had left me and some of the stiffness was relieved. I was still have issues with tremor and dystonia in my feet. My MDS and I decided to start out on a low dose of carbidopa/levodopa AKA sinement or C/L. Once I got adjusted to the dose I found this covered almost all my symptoms and I felt better than I had  for last 5 years. My usual shoulder pain was gone, my sore calf muscle had disappeared and I just felt good. So far I have been able to keep my doses of each med at the same levels for the last 1.5 years.

As all have said. It is different for each of us. I have found that I have no side effects with either of these drugs I am taking. I felt so much better I have been able to up my exercise regime and travel more. There is a guy who goes by Patriot on this forum and he treats his symptoms totally with exercise. If you are not in constant annoying pain and you feel exercising and the supplement are working keep doing what you are doing. If you need meds take em. Nothing stops this disease as of yet. But with good diet, exercise and what ever meds you decide on if you choose will give you many years of good enjoyable life.

Good luck I hope this helps

Blessings  

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