Jump to content
helplinedonate
  • Announcements

    • ForumAdmin

      Frequently Asked Questions - Step by step guides

      Do you need assistance registering, logging in, posting, etc? Please visit the all new Frequently Asked Question Forum for step-by-step guides. Click the link below to access these helpful guides. Frequently Asked Questions
    • ForumAdmin

      Recursos Nuevos en Español

      http://www.parkinson.org/ayuda   http://www.parkinson.org/espanol    
    • ForumAdmin

      Línea de Ayuda 1-800-473-4636

      Línea de Ayuda 1-800-473-4636   ¿Qué es la línea de ayuda 1-800-4PD-INFO (473-4636) de la Fundación Nacional de Parkinson? Es un número de teléfono gratuito que ayuda a las personas con la enfermedad de Parkinson, sus familiares, amigos y profesionales de salud, a solucionar diferentes inquietudes.   La línea de ayuda ofrece: Información actualizada Apoyo emocional Referidos a profesionales de salud Recursos comunitarios Amplia variedad de publicaciones gratis    

malexander

Members
  • Content count

    55
  • Joined

  • Last visited

Everything posted by malexander

  1. Safety Criteria

    I wonder what you can say about the criteria you use to determine whether an activity is safe for a particular patient. I understand that you often recommend that DBS patients should not climb ladders. I imagine that this is not an absolute recommendation. For instance I have had STN DBS for four years, and have no problem on ladders. Where I do wonder about my safety is riding my bike up and down mountains. Actually going up the mountains is no problem; it is the fact that what goes up has to come down again. Herein lies to problem: When descending (even with considerable breaking) it is easy to go speeds that require reaction speeds that test my limits. On the other hand, I love biking up hills and it is good exercise for me. How should I determine when to hang up my biking shoes. Perhaps I should mention that I broke my collar bone in a fall five years ago. I was descending one of my favorite mountains and hit a pothole I thought I could maneuver around. Since then I have been more cautious. st
  2. Tremor-dominant subtype

    I was diagnosed 6 years ago with tremor-dominant PD (following 3 years of misdiagnosis of essential tremor). I was quite resistant to levodopa (or any other medication), and I had DBS performed a few years ago. The STN DBS is quite successful in controlling my motor symptoms, and I am currently on no PD meds. At this point I have a number of questions concerning the projected course of my disease. I am particularly interested in what information may be gleaned from the study of PD subtypes. For instance, I do not—and have never had--problems with constipation. However, my anosmia predates my motor symptoms by more than a decade. Is this typical and imply a nasal route of tremor dominant PD? I currently have mild problems with voice volume, urinary urgency, balance, and mental sharpness. What else should I expect? Also, I wonder what an autopsy of my brain would show. Where would Lewy bodies be concentrated? I would think that some systems other than dopaminergic would by responsible for my tremors. After all, I had been experimenting with up to 900mg./day of levodopa with little tremor relief prior to DBS. I would greatly appreciate any references to literature or comments you may have.
  3. Tremor-dominant subtype

    I am sorry, but I am still confused: Do you mean that 20-40% of all PD patients who have tremor (some percentage of PD patients--perhaps as high as 40%--do not manifest tremor) find their tremors to be medication recalcitrant? Some percentage (I don't know how many) of PD patients are tremor dominant (TD). Are you saying that 20-40% of these TD patients find their tremors to be medication recalcitrant? In other words, is medication recalcitrance more common in TD patients than in other PD subtypes?
  4. Tremor-dominant subtype

    I am afraid I am still confused: Is that 20-40% of all PD patients with tremor have some levodopa resistance. Or 20-40% of all tremor dominant PD patients are medication resistant. (AND is not this about the same percentage of all PD patients that are tremor dominant.) Do autopsies show similar areas of the brain affected in "garden variety" PD, tremor dominant PD, and medication resistant PD. If so, what begins to explain these differences?
  5. Statin

    For the last couple of years, I have been taking atorvastatin 20 mg daily. With the new research showing increased PD risk with statin use, I wonder if I should talk with my doctors about switching to a hydrophilic statin. What do you recommend?
  6. Diet

    Do you think the recent study suggesting that low fat dairy increases PD risk is significant enough to recommend dietary changes?
  7. gut microbiome

    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).
  8. DBS and balance issues

    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?
  9. Loss of power

    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?
  10. Loss of power

    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.
  11. Pesticides and PD

    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?
  12. Balance

    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.
  13. Urinary Symptoms

    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.
  14. EMI and DBS

    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?
  15. Balance

    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.
  16. Intrepid Decision

    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
  17. Urinary Symptoms

    Are there other medications that you try for these symptoms?
  18. Pain with DBS

    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?
  19. Pain with DBS

    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?
  20. 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?
  21. multi-directional leads

    I understand that there is a new multi-directional lead that has been developed for DBS. I also understand that it has shown soon advantages over unidirectional leads. Is this device available in the US? Are there also disadvantages that should be considered?
  22. multi-directional leads

    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?
  23. Living with DBS Questions

    I wonder why climbing and ladders are off limits.
  24. I am a candidate for DBS, but I have not yet decided where to have it done. I believe you have suggested looking at complication rates as one factor while evaluating possible surgical centers. I have found this information difficult to obtain. Administrative staff and nurses at several centers have told me that I needed to talk with the neurosurgeon to get this information. One site (Stanford) told me that I would need to schedule an appointment first and then I could ask about complication rates during my appointment. Even when I have gotten numbers for complication rates, it is not clear that they are using standardized criteria. For example, I have heard infection rates of 2% up to 13%, but I do not know if minor skin infections are included in each case. Also, I do not know if these rates are per patient or per surgical site--ie do they assume a bilateral or unilateral procedure. Do you have any advise concerning how I can get this information and how I should interpret the numbers?
  25. The new study from your group in cooperation with New Zealand that show an association between DBS and the production of new neural stem cells suggests that DBS is disease modifying. Is there other evidence that also suggests this?
×