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Parkinson's Disease
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Posted 4/16/2009 2:43 AM (GMT 0)
Hello - Please share your story with me.  How long have you known you have Parkinsons?  How did you come to know?  What were your symptoms?  What meds did you start on, what meds are you taking now, and how are they working for you?  Would greatly appreciate any feedback.  Outonalim                                                           Symptoms X 9yrs.  Started on Artane 6+ yrs. ago.  Current meds Artane, Sinemet & Comtan
Posted 5/9/2009 1:22 PM (GMT 0)
hi there, I was diagnosed about 5 years ago.The first sign was a lack of arm swing (right hand only); then i fell off a truck while losing my balance. I started on Mirapex, then added yellow sinemet, eventually blue sinemet, then i was taken off mirapex because of sidefects and finally am taking 25/200 Sinemet CR with 1/4 mirapex 3x a day ( that is 2 sinemet + the mirapex} This is working out fine, but I do have down time first thing in the am and after 9 in the evening. I refuse to take any for nite because of hallucanations.
I hope you find the combination that works for you outonalim.
Posted 5/13/2009 7:01 PM (GMT 0)
Blue sinemet is a new one on me.  What's the difference between blue and yellow?  As someone who chronically forgets to take my pills I can tell you that when they tell you that it's important to stay on schedule, it's true.  You would think that after going through dbs surgery I would at least be sure to take my pills, but procrastination has always been my outstanding feature and it isn't getting better with PD.
Posted 6/7/2009 4:33 AM (GMT 0)
Hello:
I symptoms started when I was around 40 and like a huge number of people, I attemped to keep it to myself. Seems almost funny now (at 57) to think that was even possible with two sisters and mother all being nurses.. but I tried. My wife is a priceless, caregiver. She encourages me and at the same time knows exactly when to cut me some slack. That-is-to-say she cares about me and cares for me but doesn't outwardly fret over me. All at the same time continues to love me very much. She notices the things I can no longer do and she has learned to do many things that just "Hubby" once did.
Around 4 years ago I went through a doule-sided, DBS (Deep Brain Stimulation) operation and although, I still have PD, the DBS has made life bearable. It has taken some of the extreme edges off of daily roller-coaster ride as well it has night-time a time for sleep rather than the nightly trip to Hell.
After all of these years, you would think that I would be settled on meds but new suggestons keep coming my way. The old standby Sinemet and Sine-CR have been the backbone of the routine for a long time (The CR I have weaned off of now).... the "Time Release" was beginning to cause problems with predictablity of results. Comtan put zing back into my Sinemet when it was losing it's effect.
Does anyone know why the makers of Comtan can't do something about how it makes your urine (OK... Pee) turn about the color of Orange Soda? There are others I have taken as well as others I continue to take. (I'll be more specific if you ask).
I hope this information lets you know that you aren't the only one in this battle. Finding some humor in it all, has a lot of value. Although I am at a loss to explain how some people never seem to get angry. Are they kidding? Sometime blowing my stack is VERY theraputic but so is laughter.
Like I say from time to time... "I don't expect anyone to understand what it does to you. I've had it for over 15 years now and although I have learned a lot, I don't think that I understand much about it at all".

Fee free to communicate with me :o)
Posted 6/7/2009 6:04 AM (GMT 0)
Bufe, I take it from what you said that you had a wire implant on both sides which go to one twin stimulator. This was the original plan for me, but lacking much tremor on the right side of the body we went with just one wire on the right side and a single type controller in the right chest. This helped a lot for a short while, but the tremor is just about as bad now on the left side of my body and recently, during an unrelated minor medical procedure, I experienced severe tremor in both hands and both arms. I'm not enthusiastic about undergoing the full range of dbs surgery again, but at this point it is getting more diffficult to go to sleep at night even with the cr medication. I am beginning to also take extra sinemet at bedtime in hopes that it will help me sleep. With vitamins and other meds that I am taking this puts me at about 14 pills at bedtime. I just visited Graceland and it was nice, but I don't want to folow Elvis down the medication road. I was only diagnosed three years ago and things seem to be moving along more rapidly than I hoped. Any suggestions from your experience?
Posted 6/10/2009 2:28 AM (GMT 0)
Meds I am on, well I started with tremors, right side 7+ years ago at 30 years old. After being diagnosed with depression and mental illness I gave up on doctors and chose to live with the worsening symptoms.  Antidepressants did not help, and the neurologist referred me to Physchologist that admitted I was more sane than he was. I just wanted to know what was wrong.  I lived with symptoms for 3 years when a neurologist that specializes in Parkinsons was my client.  He noticed my symptoms in my work environment and asked me about them. I told him my story and then he told me he was a Dr.  He asked if I would let him review my case further and I said sure, because he was the first Dr. that actually listened and cared.  That was 4 years ago.  After finding a pin sized lesion in the left lower basal ganglar area of the brain (probably caused from previous major head trauma) he prescribed Symmetrel (amantadine)for the tremors.  100mg 3x daily . the tremors almost completely stopped. WOW. A year and a half later I suffered Grand-Mal Klonic/Tonic seizure. So add Dilantin 200mg x2 daily, and Trileptal 300mg daily.  Decreased arm swing,  rigidity and "freezing" symptoms noted last summer and official diagnosis of PD given. Added Azilect 1mg daily.  seems much improved.  Last week suffered another seizure after night of lost sleep and 1 missed dose of morning medicine.   
Posted 6/19/2009 11:14 AM (GMT 0)
Hi, diagnosed 2 years ago at the age of 60 with early Parkinsons. symptoms were shaking left hand. I'm on Dopamine agonists - initially starting on Amantadine but had all sorts of problems - hallucinations, swollen legs. From there onto Ropinirole great stuff - mentally felt better than I had for years but had a reaction, (rash). Now I'm into 7 weeks on Lisuride; feel really nauseous, tired & depressed most of the time apparently the side effects can last for 3 months. Still working, (and still want to), although only doing 3 weeks out of every 4.

Looking back I felt much better prior to starting the medications and regret in some ways doing so, although I don't know what I would be like without.

Attempting a Trip to Europe latter this year - has anyone had any experience traveling in the early stages of Parkinsons? Would be interested to hear how they coped with jet lag and long haul driving.

New to this and was amused with the quote on one of the forums I stumbled across; "if I was a rat I would be cured by now". Great to have sense of humour
Posted 6/19/2009 3:31 PM (GMT 0)
Quoth the rainman "I'm an excellent driver."
Posted 9/12/2009 11:30 AM (GMT 0)
I started about 3.5 years ago with extreme pain in my left leg, it go so bad I had to use a wheel chair. I continued to see many doctors and not one of them knew what was wrong with me, and all of them thought I was seeking pain meds. I was but not for the reasons they thought. I began to notice strange movements in my left foot when I walked, and then my right wrist started to move on it own, I noticed my hand moving while watching TV. I had my doctor make an appt with a nueroligst that I had seen before for the pain. Because I use county, it took 6 months to see him. I told him I thought I was showing signs of Parkinson, and that my father and his sister both had it. My doctor thought I had had a stroke and ordered a brain scan, he also put me on Sinemt. and said he would see me in 2 months. The sinement helped, but my syptoms worsened. When I returned to him he aknowlegde that I did not have a stroke, and it was PD. and added maripex. and another appt in 6 months. I recently called him and asked him to increase my meds because I didn't stop shaking until 8pm. He doubled the maripex, seems to be working for now.

JERRYLEE: I just had a trip to Seattle WA from Oakland CA were my husband and I borded an Amtac train with sleeping car. It was the best, you meet good people and have very good food. are free to wander around, was a little difficult for me because I still have pain when walking, but at least I am out of the wheel chair for small walks, I was able to go thru 3 cars to get to ours. It is well worth the money and my husband loved it because he always drives. I am on to much pain meds to drive. I don't trust myself to drive anymore. Hope you find your trip as enjoyable as we did.
Posted 9/14/2009 3:52 PM (GMT 0)
Hi all,

I just found out about 4 weeks ago that I have early onset Parkinsons and also essential tremmors.  I had the et for about 5 years but then I started to notice my hands and arms moving while I wasn't doing anything.  I also seem to walk into a lot of walls, and my right arm does not swing when walking.  I am on Azilect which seems to work some days but others not as well.  What I would like to hear from all of you is do you ever have trouble with your speach such as a hesitation and then the word comes out garbled, or you want to say one word and another comes out instead.  I feels like it is too soon to have speach problems or maybe I am wrong.   

Posted 9/14/2009 4:27 PM (GMT 0)
I alwaays prided myself on being "fast on my feet".  Ask me any question and I had an excellent answer ready whether it really answered your question or not.  At this point I often pause to try and think of the word for that thing I am thinking about and names?  Don't even ask.  Sometimes I have to take a second to think of my wife's name.  I tell her everything, but I haven't told her that yet.  I also went to the grocery store and left everything in the trunk of the car for two hours before I remembered that I hadn't brought the groceries in.  I try to have a sense of humor about these things because it is what it is and I can live with it.  By the way, I am now taking the "blue sinemet" pill also and it works well without as much sleepiness although a nap or two during the day helps a lot. 

Post Edited (gtmriviera) : 9/14/2009 10:31:59 AM (GMT-6)

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