Hi.  Glad you both wrote.  I'm happy to share our experiences with you.

It's interesting that you wrote about the sense of smell.  David, my husband, has not had a sense of smell from at least the time we met 41 years ago.  When we were introduced, he had just come back from a stint in the Army.  In basic training, he was exposed to many chemicals without benefit of a gas mask.  He also came back exhibiting many allergic symptoms, such as extreme swelling of hives in the backs of his elbows and legs.

David was in the service for 3 years.  I met him the following year, and we were married a year after that.  Within 2 years of the marriage, I noticed that his personality changed from merely stubborn to seriously rigid.  Who knew?  I figured that marriage brings out the best and worst, so I didn't give it much thought (wryly laughing).  However, 2 years later, I saw a "cogwheeling" effect in his right shoulder as he tried to pour a qt. of milk with an extended arm.  Soon, I noticed a rigidity in his right arm with a lack of swing as he walked.   He also began to drag his right leg.  No tremors at all.

After numerous tests (spinal tap, CAT scans, etc.), the original neuro. couldn't figure out why David was dragging his right side.  I told the dr. about the cogwheeling (I had known that this is a symptom of PD, but why didn't he???), and he put David on levadopa.  The dr. basically rubber stamped David's prescription for over 20 years (David had vehemently refused to leave this dr. and get a 2nd opinion!).  At the end of that time, when I asked the dr. what David had, he replied, "Darned if I know.  I've been treating Parkinsons Disease for 25 years, and he doesn't have that."  When asked why he gave David levadopa all these years, he replied, "That's what worked."

I also asked this dr. about the toxins in the environment in which David worked (the gas station), and he scoffed at it, saying that if that was so, David's brother would also be sick.  At that point, I believed this man to be an idiot (Me, too, for allowing David to stay with him for so long!), because even I know that different people respond to the same stimuli in different ways and at different times.  I finally got the backbone to look for other opinions, but by this time, David was pretty fed up, too, and only too happy to look further.

As mentioned in my intro, D.'s brother, Jerry, finally became symptomatic and died.  He was only ill for about 5 years.

Dr. David Eidelberg, the neurologist who first diagnosed David about 10 years ago, is a premier researcher in the field of PD.  He believes that David's exposure to the toxins both in the army and at the service station contributed to the early onset of PD.  He also mentioned that depression is a common symptom of PD, and gave David a prescription for Zoloft.  After 10 years, David now takes 150 mg. of Zoloft each evening at bedtime.  It has helped his considerably.

David had dyskenesias (no tremor) of shoulder and leg prior to the brain stimulator surgery.  Amantadine, the anti-viral drug, eased the symptoms.  He usually took 2 a day, especially if the dyskenesia appeared.  Within 15 minutes, the symptoms went away.  All dyskenesias disappeared after the brain stimulator surgery and haven't reappeared.

Re: brain stimulator surgery.  This surgery isn't meant to change the progression of PD.  Its value lies in allowing the person better mobility and balance.  David's memory and problem solving skills were already in a downward spiral prior to the surgery.  I honestly don't know if the surgery caused more damage, or if it hastened the PD decline of his mental skills.  However, since the surgery, David has severe difficulty with visual and auditory processing, problem solving, and use of all tools and machines...of any kind, including a remote control, a screw driver, a microwave, etc.  Of course, he no longer drives.

The above, in my opinion, is a caveat to anyone considering brain stimulator surgery if the psych profile shows a significant decline prior to surgery.   If I had known how disastrous the mental damage would be (I had no experience to base an informed judgment on.), I would have had to reconsider the surgery in the first place.

Nigel and Beverly, I hope I've answered some of your questions.  Be well.

Bev Bashe

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