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malexander

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About malexander

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  1. I understand that Caltech has found that gut bacteria from PD patients encourages PD symptoms in mice. What do you think of this study and its potential to help find a disease modifying agent. Also, could you comment on the possible spread of PD from the gut to the brain via the vagus nerve and also the possibility of an nasal route (given that some Parkinson patients have olfactory loss--without gut symptoms--decades prior to motor symptoms).
  2. I am a 70 year old man, diagnosed with tremor dominant PD diagnosed 8 years ago. My right arm tremor completely resolved following DBS 2 years ago. This year, I began developing symptoms on my left side and I had DBS surgery performed on my right brain last week. It has not been turned on yet (I am scheduled for that in 2 weeks). One symptom I notice since the surgery is a loss of balance. While I have not fallen, it feels like I am lurching and not getting my feet correctly planted as I walk. Could this be a temporary symptom from the surgery?
  3. 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.
  4. 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?
  5. How solid is the evidence for exposure to pesticides (and other agricultural chemicals) being a risk factor for PD. I am aware of some of the studies by Dr. Ritz at UCLA that suggest that several agents, each increase the susceptibility to PD slightly when being the sole exposure. Yet when combined with each other or with certain genetic factor, they can increase the risk of PD substantially. I have seen reports of this relationship in Scientific American, as well as other resources. ​I am responsible for arranging speakers for a large support group. We recently had a speaker who stirred up some controversy by saying this is a myth resulting from self-reporting and poor epidemiology. What can you tell us?
  6. Yes, I understand that PD affects balance. What I am wondering (in part to inform my physical therapy) is why. If it is not via proprioception or vestibular function, what is the mechanism. If it is a deficit in the CNS, do we understand any more about the mechanism.
  7. I used to be quite proud of my balance. A few years ago, I excelled at various yoga poses supported by one leg. Now, I can do these poses only with great difficulty (if at all). I have not yet fallen, but I have come close to falling several times while walking or upon standing with two feet. I do not experience vertigo. I was tested for peripheral neuropathy, and proprioception was found normal on both feet. I understand that Proprioception is not normally affected by PD, so I wonder why balance is such an issue with PD.
  8. When I asked the Medtronic rep about metal detectors, she said that older stimulators were sometimes turned off by the electromagnetic interference (EMI), but that the worst that can happen with the current generation of stimulators is a surge of power that might be felt. My neurologist tells me that she is not aware of this, but that she has heard of even newer stimulators occasionally turned off by EMI. That is the reason given for carrying our patient programmers when we travel. To add to this confusion, I have had TSA personnel at airports tell me that the older metal detectors were problematic, but the newer security screening devices are safe for stimulators. Can you help clear up my confusion about this issue?
  9. Appala, I found the similarities of your disease and mine to be quite uncanny. I am also 69 years old with drug resistant, tremor dominant symptoms. I had DBS performed by Northern California Kaiser 11/2 years ago, and it completely resolved my tremor. I also considered the BS study, but, in the end, I decided to have the surgery done unilaterally and that eliminated me from the study. I wish you the best, and I can be reached at malexander109@comcast.net
  10. Are there other medications that you try for these symptoms?
  11. How do you discriminate between BPH and PD as the cause of urinary symptoms in men? I was diagnosed a few years ago with tremor dominant PD. Parkinson's meds were ineffective for me, and a year and one half ago I had DBS (which controlled the tremor very well). I am currently not on any PD meds. I was put on Flomax by a urologist. The Flomax gives me a stronger stream, but does little to reduce urinary urgency or incomplete voiding.
  12. Turning the DBS stimulator off for several hours had little effect on the pain. My primary care doc diagnosed it as lateral epicondylitis "tennis elbow". I have no awareness of any over-use of these muscles and the tremor is well controlled by the DBS. I wonder if it is possible that some subtle tremorous PD activity may be continuing and be responsible for the muscular over-use. If so, should I consider trying higher voltage on the DBS?
  13. What is the mechanism of musculoskeletal pain from DBS? I had unilateral (left) DBS for tremor dominant PD done last July. It has been remarkably successful in controlling the tremor—but little by little I have had to increase the voltage (from 2.3 v to 3.0 v). The last 3 weeks, I have had pain in my right forearm—particularly when my arm is fully extended and I extend my hand backwards. There is no recent history of injury to the area or of dystonia. The pain seems to come from the vary muscles that are quieted by the DBS. So, if indeed the pain is due to the stimulator, how can the lack of neural impulses to the muscles be a source of pain?
  14. What are your usual recommendations following DBS surgery: How soon after surgery would you recommend waiting prior to aerobic exercise? If cycling on a road bike was part of pre-surgical exercise, when (if at all) would you consider reintroducing it? What about Yoga? Would you limit certain stretches / inversions / headstands? What about massage?
  15. I was not referring to the device made by Boston Scientific, but rather one made by Aleva Neurotherapeutics. Their web site claims their device nearly eliminates complications and side effects of the DBS procedure. A study from the journal "Brain" supposedly reports a 41% wider "therapeutic window" with this multidirectional device. If this--or other--new devices hold significant promise, would it be reasonable for DBS candidates to postpone their surgeries until the next generation of devices are available?