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Sooo Many Questions!
I developed resting tremors in 06. In 07, the tremors became constant. I went to a neurologist and he believed that my tremors were trauma and stress induced. (I lost my husband in a terrorist attack.) In 08, tremors got worse. Two different neurologists said I have PD... but both acted as though they had just told me I had a sinus infection... saying, "You have PD. I want you to take this." And "this", btw was two different things. There was no discussion about the drugs or PD. I decided not to take any medications until I learned more...but I can't seem to find answers and symptoms are getting worse. I still have two sons to raise alone.Here are some of my questions:1. I've seen people with PD who sway back and forth. Is that a PD symptom, or caused by medications?2. What are the risks and side effects of PD medications?3. I've read about people with PD who are still very active, and that puzzles me. I used to run and rollerblade. I was active and in good shape. Now it's hard to even walk, and my muscles are weak. I also have pain and lumps in muscles in my right leg. Is this common?4. Last fall I went to Denver to house hunt. My grown son lives there, and we want to be close to him. I was there for 3 months the year before and didn't have any real problems with the altitude. However, last fall I nearly passed out and had to go to ER. My blood pressure dropped when I stood up, and I had a hard time catching my breath a lot. I figured that I had this problem because PD symptoms had worsened... so I canceled plans to move there. How does altitude affect PD? Would it be best to rule out living in a high altitude area?5. What about driving? Does PD qualify me for handicap parking? Will I eventually have to stop driving?6. What do you know about acupuncture therapy for PD?7. How can I find the right doctors for me? Looking in the phone book is a shot in the dark.8. Since OT and PT helped before,,, can I be in continued OT and PT therapy?9. Will I be able to get LTC insurance now that I've been diagnosed with PD? I want to start planning for my future.BTW - essential tremors began at age 39.. though I think there were signs as early as 34. I was diagnosed at age 42. I am now 43.
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Dr Sanchez-Ramos said...
Tuesday, August 03, 2010 2:53 PM
I've seen people with PD who sway back and forth. Is that a PD symptom, or caused by medications?

            Just swaying back and forth is not a symptom of PD. Some patients with PD develop dyskinesias in response to levodopa therapy. Dyskinesia refers to involuntary movements that look like jerky dancing movements of the limbs and body, but may also include whole body twisting, turning and swaying. 

What are the risks and side effects of PD medications?
             Levodopa/carbidopa (Sinemet) can cause:a) Nausea, vomiting, loss of appetiteb) Light-headedness due to dropping blood pressure especially when standing upc) At high doses, some individual experience visual hallucinationsd) After 3-5 years, many individuals, especially when they are relatively young (< 60) develop dyskinesias.

I've read about people with PD who are still very active, and that puzzles me. I used to run and rollerblade. I was active and in good shape. Now it's hard to even walk, and my muscles are weak. I also have pain and lumps in muscles in my right leg. Is this common?
               PD patients who remain active tend to be medicated appropriately.My blood pressure dropped when I stood up, and I had a hard time catching my breath a lot. I figured that I had this problem because PD symptoms had worsened... so I canceled plans to move there.

How does altitude affect PD? Would it be best to rule out living in a high altitude area?
            Any stress will amplify signs and symptoms of PD. Suddenly going to high altitude is a stressor. However, people adapt to high to lower levels of oxygen by increasing production of red blood cells. So if you move to the mountains expect a transient worsening of symptoms that should return to baseline with time as you adjust.

What about driving? Does PD qualify me for handicap parking? Will I eventually have to stop driving?
            People with PD who drive are more likely to be involved in auto accidents. Your doctor and physical therapist can decide if you need handicap parking. Eventually you may need to stop driving. When to stop driving is highly variable..

What do you know about acupuncture therapy for PD?
            Acupuncture in my experience does nothing for tremors. It can relieve some kinds of pain but typically acupuncture is not useful for control of PD.

How can I find the right doctors for me? 
            Call your nearest University Medical School Neurology department and find out who is the best expert in PD. .

Since OT and PT helped before,,, can I be in continued OT and PT therapy?
            Yes, but insurance will not cover it beyond a limited time and the prescription must be re-written every 6 months.

Will I be able to get LTC insurance now that I've been diagnosed with PD?
            I'm afraid I cant answer this question. Check with several insurance companies.

BTW - essential tremors began at age 39.. though I think there were signs as early as 34. I was diagnosed at age 42. I am now 43. 
            Essential tremor is a monosymptomatic tremor present with action and with no other neurological problemsit is not the same as the tremor of PD which is worse at rest and better with action. In addition PD syndrome is characterized by slowness of movement, rigidity, loss of balance and rest tremor. Both ET and PD are very common so its possible you have both conditions. And you cant be sure you have the diagnosis of PD until you see if dopamine (levodopa therapy or DA agonists) replacement alleviates signs of PD.
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