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   Newly Diagnosed (Parkinson's Disease board)

29th January 2008
This is an area of debate. If your symptoms are so mild that they are not really noticable except for some stiffness, a lot of whether you should go on medicine is up to you. There is some suggestion--controversial--that azilect may be neuroprotective, that is, it may slow the disease down. If your symptoms are as mild as you say, I would suggest the azilect, 1mg/day, is all that you would need right now, and I would defer the requip.
1st February 2008
Welcome - I'd question two drugs at once. Requip did great for me for over a year for leg stiffness and I'm now adding Azilect - i tried it for two weeks, it didn't seem to do much and I had to stop for dental work but I might start it again now and give it a chance. (on the other hand, my symptoms are less than when the doc saw me in December and I may just hold off on the Azilect)

Keep us posted

Sunshine
6th February 2008
Well, got the second opinion. PD it is. The motion disorders specialist said that he's 85 to 90 percent certain it's PD. The wiggle room is because my symptoms are so subtle. And what did my wife and I do after we received the second opinion? We went out and celebrated! A wonderful dinner at the Olive Garden. Now I have heart disease and PD. We figured we'd better celebrate something! So tomorrow (Thursday) I begin treatment with Azilect. Nothing else. My neuro exepcts me to tolerate the medication well, and hopes this that medication alone relieves some of the symptoms. But because I'm so symptom free, nothing beyond Azilect at this point. So I take that as a good thing. I exercise three or four times a week, so that will continue. So I guess I'll let the journey begin. It's amazing how the diagnsis and confirmation came about in two weeks. I'm also exploring the use of COQ10 as a treatment. The COQ10 is supposed to have some significant benefit to heart disease patients so I'm going to speak to my cardiologist about that. Maybe I can indirectly help my PD and heart disease with the addition of one supplement. As they say, it's not about the destination, it's about the journey. Thanks for your help.
11th February 2008
Vmartino --

Keep us posted - how's it going. I did start the Azilect again but I was told it could take 6-8 weeks. I think it calms my tremor a bit, but my tremor is minor to start off with, I'd like to see improvement with the gait (walking) - my problem is right side not swinging properly (arm or leg).

Glad to hear you celebrated, I go up and down but deep down I know that 1) we have to take what we've been given and 2) there are a lot of things worse (I turn 50 next week and didn't think this is how I'm enter this prime time of empty nest)

sunshine
12th February 2008
Thanks for your reply. Turning 50 sure is interesting, isn't it? Things are going pretty well. I'm been on the azilect for almost a week now. My doctor said the same thing, about six to eight week before anything significant happens. I'm not showing any tremor at the moment, though. I do have an awful lot of muscle spasms. I'm not sure whether they're linked to the PD or not. I guess time will tell on that one. Funny thing, I never have any problems exercising. No pain, no "sensations of tremor" nothing. Let me know how things are going with you. Sta well.
12th February 2008
I re-read your thread and saw that you did have an MRI - what were the results? Back in Aug 2005 when I first had arm swing and gait issues the neuro suspected PD but the MRI results came back as pretty severe spinal stenosis. I had surgery for that Sept 2005 (cervical laminectomy C4-C7) but while many issues improved, the gait and arm swing didn't. Anyway after PT, etc I saw a physiatrist who put me on a med (Baclofen) that slowed my body to a crawl. I then saw a new neuro who suspected PD but with the spine issues she wasn't sure and sent me on to the motion disorder specialist who confirmed that I have two problems (believe me this was hard to comprehend but I am an engineer and so I can look at all this "scientifically"). As both of these last two neuros have told me - the good news is that PD can generally be controlled pretty well with meds.

Hang in there and I hope the Azilect works for you.

Sunshine
14th February 2008
I've thought about seeing a therapist but have not to date - probably should because there are significant stress issues in my life (planning a wedding, Dad just died, we own our own business, other sick relatives, etc)

If you see a personal trainer make sure you get exercises for balance as well as strength. My "crazy exercise routine" came about more from my c-spine problems but incorporates exercises for both issues - I swim 3-5 mornings a week lately I've been doing laps, water jogging and water walking, I go to Curves 4-6 afternoons a week (30min workout) and I either walk a mile on my road or 30 minutes on the threadmill (if I can, some days I can't do 30min) along with stretching and balance exercises (4-7 days a week)

Hang in there. I think the Azilect must be working some, I have done 30min each of the last two nights on the threadmill where I haven't been able to for a while.
15th February 2008
It sounds like you have a good exercise program to me. I'm meeting with a personal trainer tomorrow so I'll see how it goes. In the meantime, last night the muscle spasms went crazy. Called me neuro who put me back on my old medication Neurontin to see if that would quiet them down. He was thinking about stopping the Azilect over the weekend to see if that had any impact. Fortunately the spasms died down after I took the Neurontin, so everything stays the same with the Azilect. I take a bunch of pills a day for my heart and ongoing muscle pain, and and every time there's any change it seems like it throws my entire body out of synch. Well, at least things are quiet for now. My exercise routine is pretty boring stuff -- every other day on the treadmill for 45 minutes. It's worked well for me in the past, but I definitely need to step it up for what's coming in the future. Thanks for your suggestion about the personal training. Stay well.
6th March 2008
Well, I haven't written for a couple of weeks, so here goes. Things are pretty quiet. I'm on 1MG of Azilect once a day. I've been on it for approximately three weeks. No side effects that I've been able to discern. Although I do seem to have less of an appetite, which is a good thing. 'm in the process of losing weight. My weight on January 1st was 260, and as of today I'm at 235. So I'm feeling great about that. Another thirty-five to go. I'm also doing the treadmill four times a week for 45 minutes per session. Rigidity in my right hand which was one of my symptoms appears to actually be better. I'm still experiencing the feeling that my right hand and arm want to shake, but as of yet that hasn't happened. And when I'm busy, the sensation is neglible. So I try to stay busy! My wife and I are attending our first PD seminar next week. The topic is related to new medications and treatments available to PD patients. In May we've going to another seminar that also deals with new treatments and how to best live with PD in your life. I still find myself a bit down at times, and am still contemplating seeking counseling to deal with that issue, but right now I'm feeling okay and satisfied that I'm doing the best I can against an insidious disease. Thanks for all the information from everybody. I'll keep you up-to-date as best I can.
15th March 2008
vmartino

Doc didn't have much to say at this last visit - pretty much stay with the meds I'm on and keep exercising and just watch for things that could get worse with my spinal stenosis.

I told him I'm not sure the Azilect does much but he says it's like an "insurance policy" to keep the body steady so I guess I'll stick with it even though its a very high co-pay on my insurance.

You say you are newley diagnosed but really how long have you had symptoms. I was diagnosed a year ago but actually I'm coming up on four years that I've had symptoms (since I was 46).

-sunshine
18th March 2008
kkh:

I guess my situation is a little unusual (at least for the rest of you I hope so). In May 04 I developed knee pain, ortho said nothing wrong. That summer my husband noticed my arm not swinging - no pain - ignored it. My gait (walking) got steadily worse and I noticed some tremors in my legs (which I ignored and never told anyone). Finally June 05 I started seeking help - by this point I noticed that my right side was moving slower than my left - I was subconsiously using my left more for things like brushing my teeth and I noticed that I was making typos because the left hand moved faster, etc. My handwriting was small also had numbness and cold off and on in the right side. By July I saw a neuro who immediately said PD or MS and started MRI's - my walking and balance were getting really bad. The C-spine MRI showed severe stenosis C4-C7 so he dropped the PD thought and I had a cervical laminectomy Sept 05.

Many symptoms improved including the handwriting. I still have some right side weakness relative to the left but not as bad, my arm doesn't swing and I still have a gait issue, but I had an increasing right side tremor in the arm and leg. I eventually saw a different neurologist who suspected I had "TWO" problems and sent me to a motion disorder specialist who diagnosed the PD in January of 07. One of my biggest complaints at that time was stiffness behind the knee. A very small dose of Requip helped that almost immediately.

So - I live with the gait issue (again no pain, just don't walk properly, but it's not a PD shuffle either), some cold in the leg from time to time, knee stiffness from time to time, the lack of arm swing and right side weakness, and some tremors in the right side. I take 1mg Requip 3x/d and .5mg Azilect 1x/d. A new MRI in Dec 07 shows I still have some C5-C6 stenosis and might eventually need another spine surgery.

That all said - I work full time (I own the business), I swim 3-5 days a week for 40 min, I go to Curves 3-6 days a week and I walk 30min on the treadmill or a mile on our road depending on weather along with some stretches and leg weight exercises.

As people on the spine board say - it's a "new normal" to get used to.

-sunshine
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