New PD owner

Starting two years ago I noticed a tremor in my right hand when holding a spoon with soup and moving from the plate to the mouth. This was happening very rarely, like 2-3 times a month when I was tired or stressed. The tremor was more intense when reaching the mouth. In March my mom passed away and I went through a lot of stress. From April I noticed the tremor happened more often, especially at rest. I went to see neuro dr. I told him the tremor goes away when my focus is diverted something else. He checked me and he said I have ET. I went to another one. He told me I have ET. I went to another one. He said I have ET. I did not buy it so I went and saw another two neurologists specialized in motion disorders. They both told me I have PD. One gave me levodoba the other amantadine. I fell into a big depression. I had trouble concentrate and I'm a computer programmer. Finally I decided to fight back and ignore the PD and be the same like I was before. It helped a lot. I did not start yet any medication. The tremor is the single symptom I have right now and they are days when I barely feel it. I'm 63 and I try to stay away of medication as long as I can. Exercising and especially walking help a lot.

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Actually the first neurologist told me the ET can have tremor at rest sometimes and ET and PD are stealing symptoms from each other. The second neurologist told me if the tremor stops when my focus is diverted to something else then for sure is ET. The third did not exclude PD but was more for ET. The fourth (motion disorder dr.) was 100% sure is PD because of the rest tremor. The fifth (motion disorder dr.) said over 80% is PD. The last two told me the right hand is slightly more rigid than left and the swing , when walking, slightly smaller. Other than that, all the other symptoms like constipation, depression, insomnia, trouble with concentration etc. went away as soon as I accepted the new state and took control of myself. I do not have any smell issues. Do not let the PD take control over you. Four months ago I started a project at work and I was scared I won't be able to do it but I just finished it with no problem.

I read here some people have PD over 20 years. I have no idea how I'll be 20 years from now but I do not want to retire soon. Actually, the job, which very stressful, helps me as keeps me busy.

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You have come to the right place. Go through other's posts to see what helps them - you try it and see if it helps you. Exercise is always good. As is social interaction. As is singing.

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The medications you were given really do help a lot for most people, there is not real reason not to start them.

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I know they may help but also they have side effects especially after long use. I'm just trying to delay as much as I can.

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I am almost of my medication. I was really nauseous, couldn't stand the taste of coffee or wine, maybe not a huge problem but socially it was a drawback. Had absolutely no energy, wasted months of my life on the lounge. Hair loss was the final straw. My tremor hasn't returned much but my movements are slow in my right arm and hand. I can live with that. I now have new hair sprouting, yay, as a woman it was a worry. I will probably have to go back on meds later, but I will reluctantly.

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Which Med caused hair loss?

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Sorry, I just saw this question. Stalevo. I was put on a low dose and when i felt terrible it was increased. The med was causing all my symptoms. I'd rather have tremor and bradykinesia. When I tie my hair back I can see my skalp. That has never been the case before. When I had my hair cut last week I asked my hairdresser if she could see new growth from cutting back the meds. She could! Thank goodness. Things are tough enough.

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Oh okay, I haven’t heard of that medication. I am glad that your hair is growing back.

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Just been told by doc i have pd;he told me the only way to confirm it wud be to take the drugs and sèe if they work;i dont want to take them unless i need to as they dont slow progress of pd;Just treat symptoms; am i right?

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I would have a look on here as to what others are taking - check out my profile and Rolyprop's - also Silvestrov's post. I don't do any mainstream treatments yet.

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Go with your gut feeling. I visited my Neurologist 3 times before I caved in and started medication. I have lost the best part of the last 12 months. Not right for all, but go with your own feelings and then you only have yourself to blame. I have gone from 1000mg per day to 100. Next week zilch. It's not great but it's my body.

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Can you explain wot you mean by wasted a year please

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Being over-medicated made me so tired! I had no energy at all. I love being busy, I'm creative and active. I spent months taking every opportunity to lie down. Now I am back enjoying each day.

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Yes, most of us did not want to start medication due to side effects. I resisted , other than rasagiline, for two years; just put up with the tremor and weakness in my left hand and the fatigue, which was the worst symptom. Since I am right handed, I was able to continue working by mostly typing with that hand, and at meetings I would hide my left hand in my lap. I was terribly fatigued at work and finally retired,, age 69, and got right into exercising. In spite of all my efforts at the gym, the doctor saw a bit of progressiion and rather than start me on the Sinemet, ordered that I complete the LSVT BIG program.

There, the PT and OT folks told me that I might be under medicated. Although the exercises helped a lot, it was time to take the Sinemet, and it has vastly improved my quality of life, I have llittle or no tremor, vastly less fatigue, and I move pretty normally. The medication is of course not going to cure me or stop the progression, but it has given me the energy to exercise at least an hour most days and live a pretty normal life. I do have a limit; if I expend too much energy, especially at night, I pay the price the next day. I recommend a regular schedule, buiilt in rest times, eat fresh, unprocessed food, drink plenty of water, and take supplements as recommended by folks here.

It is a highly personal decision about when to start medication; and when to retire. Listen to your body and take good care of yourself!

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Thanks for your reply;wil take it on board

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PD tremor occurs when one takes attention off the affected limb. You have the opposite which is not a symptom of PD.

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park_bear The first neurologist I saw told me exactly what you said. The second said the same. The first motion disorder doctor said I do not feel the tremor which happens because my focus is away. But when I told him when my focus comes back the tremor starts about 30 seconds later he just did not have any explanation. The second motion disorder doctor did not have an explanation for it, either, but both said I have PD.

Very rarely I had tremor in the right foot, especially when I was over stressed. Sometimes I feel some rigidity in my right leg but it goes away if I walk around for a while.

I taught for awhile I do not have PD but now I think I have. They told me only the treatment can confirm it.

Thank you for the reply.

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Yes, if levodopa helps that evidence trumps atypical symptoms.

Stress aggravates my tremor.

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I did not take any medication, yet. I just try to delay it as much as I can. Except the tremor I do not have other symptoms (like smell loss, insomnia, constipation, trouble walking or with balance, no depression - I had it when I was told I have PD but I got control of myself).

One doctor gave levodoba and the other amandatine. The last one gave me amantadine for tremor to take it as needed, not on regular basis.

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