Hi Peaches, Fair enough. The purpose of my inquiry is just for knowledge. I read an article in Parkinson's Disease foundation News review spring 2010 www.pdf.org The article Geenetic mutation provides clues for the expression of pd. My thought in inquiring abouy early symtoms might give insight into what meds work best for different types of pd as defined by early symtoms. It is no fun at all to shake or have a stiff movement in public. The first time the drs reccommended genetic testing I felt knowing did not change the fact that I have it. since getting tested through 23andme which is subsidised by Michael J. Fox foundation, Knowledge has grown. Be happy. When life gives you lemons make lemonade. Thank you Alex

Hisknobs: how do you find the 23andme site. Its quite interesting the various features available genetic-wise. Have you found any close relatives? Look me up on there if you like, same user name as on here.

Looking back at all my early signs, perhaps the one that I felt at the time was not right was when you stretch in bed when you wake up, my left shoulder would shudder or shake. That was about 3 years ago.

C

Thank you for understanding my answer


My neuro asked me the other day, do l notice a loss of smell. My answer was how do l know what l cannot smell, if l cannot smell it??

That relies on others saying can you smell this or that?

I do know l cant smell coffee anymore unless someone tells me l should ............Damn It !!!!!!!!

The physical symptoms are bad, but from my wife's experience the mental symptoms turned out to be the worst. Her beginning symptom was the loss of smell and then the stiffness, etc and the pill rolling in her thumb was what finally got the diagnosis. About two years after her diagnosis the mental symptoms began. At the time I didn't realize they were connected. She began with being anxious. Kind of funny at first. On a trip she would worry that I was going to get lost. Watching the weather would send us off to the cellar because she was sure the tornado 200 miles away would get us. This escalated and I brought it to the attention of the neurologist. He just laughed it off and said "she can still walk can't she". Then the anxiousness developed suddenly into the terrible anxitety attacks which I thought was a result of the sinemet wearing off. The Neurologist at this point was lost and just gave her meds for depression. Didn't help a bit. I had to find another Neurologist who was more skilled in complicated Parkingson's.
Other things followed- hallucinations, paronia, agitation, and the whole nine yards. The Neurogist had to really work to keep things under control and a step ahead of the developing mental issues that were coming about. At first I wondered if the Parkinson's Meds were causing the problems.Now she couldn't do without them. Otherwise, she would completely lock up. Now I'm thinking it was a combination of the two- meds and disease process. Her brain was being ravaged not just the movement part, but to other parts as well. My wife is now under hospice care. It has only been 6 years since she was diagnosed. Unfortunately, I've learned that my wife was in that 30 % of Parkinson's Patients who get the Lewy Body Spetrum of disease.
I hate to paint such a dismal picture, but being forwarned prevent a lost of frustration and make sure you find a "good" neurologist or better still, a good Neuropsychiatrist. They are hard to find! Hopefully, you will be in the 70% who just get the pure Parkinson's or whatever that is.

Dear Neal63,

I wish that my father (primary caregiver of my mother who has advanced PD) and I, too, had recognized the so-called warning signs of the non-movement disorder issues earlier. It would have saved us and my mother lots of frustration and additional stress. While my mother does not have Lewy Bodies, I'm reading what I can about PD Dementia and, most recently, frontotemporal degeneration; both seem to apply to my mother at this point. While my mother's PD neurologist is good for the movement disorder side of PD, he's given us no "heads up" or guidance of any kind with respect to this even more troubling part of PD.

Thank you for sharing your thoughts. It's been helpful to me, steering me in the direction of looking into finding a good neuropsychiatrist for my parents.

My wife's Neurologist used the term "Lewy Body Spectrum" to describe the dementia side of my wife's Parkinson's. However, I don't think that diagnosis can be made until after he death and an autopsy is done. I'm fairly certain that she does not have Alziemhers(sp?) Disease, because her long term memory is still intact. My understanding is that a different protein is involved in the Parkinson's dementia than is involved in the Alziehmers disease. I think the "spectrum" is used to cover all those dementias associated with Parkinson's. I think that the protein implicated in Parkinson's maybe the same as in Lewy Body. Maybe this is still being researched.

I was interested to see that loss of smell is a symptom. I have said for a while that my dad has this but he denied it. His diagnosis was as a result of seeing a doctor about his loss of voice

FIRST PHYSICAL SYMPTOM WAS LACK OF NATURAL SWING IN LEFT ARM AND SLIGHT DRAGGING OF LEFT LEG.
ALL THIS OCCURRED WITH TOGETHER WITH A MASSIVE BOUT OF ANXIETY AND DEPRESSION. THE LIKE OF WHICH I NEVER WANT TO GO THROUGH AGAIN.

"Pins and needles" in my left thigh and calf, and left foot drop. My doctor and I (an RN) thought it was nothing more than sciatica. I then developed tremors and cogwheeling in my left arm, whicch pointed us towards Parkinson's.