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malexander

Loss of power

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I am a 70 year old man, and I have had motor symptoms of tremor dominant PD for 7.5 years.  Medications (I have been on Sinemet up to 9 tabs/day, Requip, and Zonisamide) have never had much benefit and I am currently on none.  I had unilateral DBS performed on the left side of my brain 2 years ago with immediate and long lasting relief of symptoms.  Concern about continuing loss of power, however, lead me to conduct the following experiment:

 

Using a stationary bike with the resistance set at 14 (a moderate hill) I measured the average power output of each leg individually when cycling for one minute.  My right leg produced 136 Watts, and my left leg produced 108 Watts.  I then turned off my DBS and repeated the experiment:  the right leg power dropped to 60 while the left stayed at 107.  During the last year, I have developed (for the first time) a significant tremor in the left arm.  I wonder if the fact that my left leg now trails my right is due to rigidity and slowness in muscles on that side now, and if I should consider DBS on the right side of my brain at this time.

 

More than three years ago, prior to my DBS, I noticed a significant loss in performance when cycling.  I could no longer keep up with my riding partners.  This loss seemed constant no matter how much Sinemet (if any) I was taking.  At that time, I noticed I could generate a peak of 135 Watts with my left foot, but only 70 Watts with my right.  This was the case in spite of the fact that I could push equal weight with both legs individually on the hamstring curl and quad extension machines .

​I have two questions:

​1)  Is it reasonable to expect DBS to improve my physical performance?

​2)  What does it mean that L-dopa has little effect on my PD symptoms (in spite of the fact that they are progressing in a classical manner)?  I understand that many systems in addition to the dopaminergic neurons are involved with PD.  Does my experience suggest that were I to die today an autopsy of my brain might reveal Lewy bodies in some areas of the brain--but not so many in the dopaminergic neurons?

 

 

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First, be careful with the levodopa response.  In tremor dominant PD 20-40% has an incomplete response.  I would not hesitate to add levodopa now and titrate or use apomorphine.  It could be that now these drugs will be helpful and before the tremor was the issues.

 

The right leg and left leg issues and power issues are a gamble for adding the DBS.  It will likely help, but we have not studied this extensively.  Additionally, the question is whether there is other disability and quality of life issues that could be predicted to improve from DBS. 

 

I worry that you should consider a gastric emptying study and make sure that the medicine is absorbing.

 

It is possible but unlikely an autopsy will reveal a disease different than Parkinson.

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I ran the above experiment many times--peddling with each leg individually and together--with DBS on and off--with no Sinemet, with 3 tabs/day, with 6 tabs/day.  I charted the results with graphs which I would like to show you, but I do not know how to paste them onto this post.

 

My questions include:

  • Are there any researcher using individual leg power as a diagnostic measure in PD?
  • Sinemet slightly increases power only with my left leg individually when DBS is on, and on both legs when it is off.  It does not seem to effect balance, voice volume, or fatigue.  Does this suggest that systems other than dopaminergic neurons have a greater share of responsibility for my symptoms?
  • Does it suggest that DBS overrides most of the dopamine deficiency?

My neurologist has not ordered a gastric emptying test, but she does not believe that explains my poor response to Sinemet.  In fact, when I was testing Sinemet up to 9 tabs/day prior to DBS, I started to have some dyskinesia. 

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Thanks for the post.  The 18004PDINFO helpline may help with posting on the site.

 

We do not completely understand why PD patients lose power in their legs.  Several researchers are working on this.  At UAB they are doing muscle biopsies, at UF they are doing experiments on power and movement, and at Cleveland Clinic they work on peddling.  There are great researchers at Pitt, USC, Northwestern, UMaryland and others all interested in the question.  I like how you teased apart DBS and dopamine effects.  Most people think leg fatigue is independent of dopamine.

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