Jump to content
  • 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    


  • Content count

  • Joined

  • Last visited

Community Reputation

7 Neutral

About Manolo

  • Rank
  • Birthday 04/23/1954

Profile Information

  • Gender
  • Location
    Mississippi Delta
  • Interests
    Papaw, Dad, Husband

Recent Profile Visitors

484 profile views
  1. Jul, Swamper alerted us to 2 excellent articles. Your cut and paste from the second article clarifies and dampens the excitement from the first article. However, the second article seems to give us 2 choices as to what the drug is doing. The 2 choices from the cut and paste are 1. "a neuroprotective effect" or 2. "simply stimulating a dopamine-based positive motor outcome". The Number 2 choice raises the question, If the drug is just causing a positive motor outcome, doesn't that have enough merit to use the drug simply for the improved or "positive" motor outcome? Would the dopamine-based stimulation cause undesirable side effects? I don't know enough about the mechanism of L-dopa, but is the action of the Exenatide (dopamine-based stimulation) mimicking the mechanism of L-dopa, thus dooming Exenatide to have the eventual undesirable side effects that the majority of L-dopa users encounter down the line? In other words, what is the downside of simply stimulating a dopamine-based positive motor outcome? Of course, most everyone would hope that Exenatide is neuroprotective, but if not, do the trial results indicate a worthwhile PD drug? Unfortunately, I'm always seeking answers from the crystal ball...this shiny computer screen in front of me. But maybe you or someone can answer the questions. Thanks in advance. Manolo
  2. Dear Swamper, What an excellent set of articles you led me to. Thank you. Based on the articles, I'll sit back and wait...regarding the drug. However, I'll certainly bring the topic up at my next Dr.'s visit. Also to Pathfinder, thanks for the response.
  3. Well...I found the Search space in the upper right hand corner of the screen and typed in Exenatide. It has been discussed on the Forums in a limited fashion. Here is why I ask about this med: Recent news reports suggest that trials have great results for PD patients using Exenatide. The benefit is specifically seen in improved motor function. Seems like the trial participants were all on L-dopa. The participants who received Exenatide showed improvement; the placebo participants showed worsening. Anxious to hear of anyone's experience or knowledge of this drug.
  4. First, if there is discussion about Exenatide on the Forums, please advise me and I'll go there and read. Questions: 1. What are the chances of getting my Neurologist or my Movement Disorder Specialist to prescribe Exenatide for PD? My next scheduled visit is 4 months away and I don't take meds. 2. Do you have experience with or knowledge of Exenatide related to PD? Side effects? Use for Diabetes? I don't get a chance to visit the forums very often so this subject (Exenatide) may have been discussed and re-discussed; I was unable to find discussion thru a brief search. Some may have experience with an innovative or free thinking MDS who is willing to prescribe a med that was originally intended for a disease other than PD. I would appreciate your experience/story.
  5. Worried about having Young-Onset Parkinsons

    Is anyone aware of literature of subsets of PD patients? I see one subset as YOPD; what are the qualifications to be included in YOPD: under 50...under 40? Of course I would like to find data on PD people with my symptoms, my age, possibly the same sex, etc. Then I would like to find the average time at Phase 1, Phase 2, etc. If data exists, I would like to use it as a crystal ball...to see my future more clearly. That's what many of us want to know...what is the timeline.
  6. I stumbled thru the scientific literature. I hope more info is forthcoming. Does the efficacy of atremorine lean toward a dependence on the patient's genetic pre-disposition? I may have mis-understood. Anyway, since I am not dementiated...yet, a thought occurs to me: I think it goes without saying, the genetic make-up of an individual impacts the efficacy of everything: drugs; words/advice; relationships; etc. Not saying that everything is pre-determined; just saying one's genetic make-up provides a pre-disposition for some outcomes.
  7. Is loss of arm swing a dead give-away for PD?

    Thanks MurrayPD2. Heck, the Drs. don't have all the answers. I value input from people with PD and caregivers to PD people. I did not hurt my shoulder. It's PD. It just took some adjusting to accept it.
  8. Is loss of arm swing a dead give-away for PD?

    I do not take any meds yet. I plan to start Azilect as mono-therapy in a week. I am scheduled to visit my neurologist and I assume he will prescribe it. I'll ask him whether the Azilect may help with arm swing. I hope it works on arm swing, soreness, tremor, neuro protection, and maybe it will give me insight to pick the numbers on the next big lottery. I'm hoping. Maybe I should just hope that it doesn't have intolerable side effects.
  9. Is loss of arm swing a dead give-away for PD?

    I am already diagnosed. Full fledged PD...6 months ago. Probably had it much longer. I've had the tremor for 16 months, stiff neck and shoulder for 2 years and diminished sense of smell for 5 years. With my question, I was just grasping at a what if it isn't PD. Like I posted, I am just about over the acceptance hump. Just about. What would be the name of another condition or disease that might cause one to stop swinging an arm?
  10. As I read the posts, I begin to associate symptoms I have with the symptoms of others with PD. I thought my loss of smell was due to zinc nasal swabs that were supposed to be for killing cold germs and lessening the length of the cold. Now, I second guess and wonder if the loss of smell is due to PD. I don't have a complete loss, just significantly diminished sense of smell. By the way, the zinc nasal swabs were taken off the market due to the danger to sense of smell. I am super afraid of progression...rapid progression as opposed to slow progression. Kinda funny, I am hoping I decline... slowly. I'm not hoping I decline...just hoping I decline slowly. Like, MJF, I am about over the acceptance hump. As I write this, I got a tinge of honor to have something in common with MJF. Here's the question: Is loss of arm swing associated with anything other than PD. I have to make myself swing my arm now. It's magnified when I work in the yard...heavy tremor with no arm swing. My thoughts may seem scattered, but they are ordered to me. Here's my thought process. Probably not realistic to think, but I don't want to have any psychosomatic symptoms. I've got plenty of real ones. Manolo
  11. Good morning!!

    I read thru the posts, evaluating different approaches to PD. Most of the time, I seriously read the posts, and sometimes I read with elevated concern. It is such a joy to stumble on a post that makes me smile and elevates my mood. LAD's posts have made me smile more than once. Thanks LAD..
  12. Emma Watch

    Fascinating. At my work, I can still hide my tremor... to a degree. A couple of closer co-worker friends have questioned me about the tremor in my right hand and arm, but most co-workers have not noticed. I am not ashamed, but there are several reasons why I don't care to announce that I have PD. The watch, if it works, would be handy. Thanks for sharing. Manolo .
  13. First, set me straight on the goal of the original post ; does one need to differentiate between health care costs and health insurance costs..which might be impossible Second: In my opinion, corruption is the norm...in almost everything. However, the utopian fix for the cost of health insurance could be a true single payer system. If we combined every cent spent on health insurance, the taxes that go to insurance part of Medicare and Medicaid, the premiums which we pay to insurance companies,, every cent every where, then...I think there would be enough money to reduce the cost of health insurance for everyone. Here's the downside; insurance companies and the jobs they produce would dissolve; some jobs in healthcare business offices would dissolve; Are not those people our brothers (and sisters) to keep; theoretically the single payer management Agency would need fewer personnel in a single payer health insurance system than are now employed in the current multi-payer health insurance system. But the saving greed...I mean saving grace, is it will not work, primarily because in my opinion, corruption is the norm. If we were able to miraculously implement a single payer system, the system would systematically become corrupted. But to tie this back to this ever new situation I find myself in, namely having PD, I know I will have more difficulty in living life to the fullest, but knowing that is not going to stop me from trying to enjoy life to the fullest. Therefore, knowing that it will be very difficult to improve the health insurance systems should not stop us from trying. I enjoy reading the posts, both the inspirational and the provocative. Good luck in all things. M
  14. 23andME PD Genetic Research

    I had some difficulty in trying to follow the links to participate in the process of genetic testing from 23andME. First I clicked on link, but the web page indicated Sorry, web page no longer available. Next I called the National Parkinsons Foundation Help Line. The person who answered was informative, and is emailing me with info as to why the link on the website ends with the Sorry message, and also to determine if the program is still available. Next, from our co-member Peace's post just above, I tried the MJFF website. I maneuvered thru the registration under Trial Finder and searched for 23andME. Sure enough, the 'trial' seems to be continuing after 11,000 participants have already enrolled. I emailed the contact and I am hopeful that I will be contacted and sent the testing kit. To help any new member that is interested in the FREE 23andME offer (apparently with collaboration and support from the MJFF), here is the email to 23andME that hopefully will result in allowing continuing participation: pd-help@23andME.com Additionally, I think the NPF may update the info on the (this) website to facilitate access to this worthwhile program. I hope it works out... Manolo
  15. Because you have been diagnosed with PD, you probably have gained knowledge and a degree of expertise regarding Parkinsons. I would like to tap into your expertise. If you knew someone who was was a male, 63 years old diagnosed with Phase 1 PD 6 months ago with symptoms for probably 2 years, what advice would you give. I have had a tremor in my right hand for 15 months...one day the tremor wasn't there, the next day it was after an extremely vigorous day of splitting firewood...pill rolling to shaky, reduced arm swing to no arm swing over time. I have some soreness in shoulders, but the tremor is the same, more or less since it started 15 months ago. MD did an MRI; Neurologist diagnosed Phase 1 PD. Neurologist prescribed an agonist, but I am holding off of meds because of info about side effects. Follow-up appointment in 4 weeks. Now is where I would greatly appreciate your input. I have considered Azilect. I am a blank slate with Phase 1 PD...please provide input.