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    

adams234

Members
  • Content count

    462
  • Joined

  • Last visited

  • Days Won

    12

adams234 last won the day on August 23

adams234 had the most liked content!

Community Reputation

241 Excellent

1 Follower

About adams234

  • Rank
    Advanced Member
  • Birthday 02/20/1979

Profile Information

  • Gender
    Male
  • Location
    Rochester, NY
  • Interests
    Home Repair, Camping, Outdoors.

Recent Profile Visitors

536 profile views
  1. The Problems with Medical Marijuana

    Thanks for the update. There is a lot of things you stated that I would not have had the foresight to think of. In the state of New York medical MJ is legal with a prescription. However, if you are pulled over you can be sited with driving under the influence, if you have a child in your car under the age of 16 you will be charged with a felony of child endangerment. Some laws just don't make sense. Moral of the story check you local laws and consider all the options. Thanks again Patriot for being honest and open with your experience.
  2. New here

    Hello Momof4boys, I was diagnosed at age 35 and started on Sinement about 8 months later. Best decision I made. I felt so much better. Like I was 10 years younger. Best thing you can do is research. There is a lot of negative press out there about Sinement (aka Cardopa/levodopa) The latest research show that waiting for fear of dyskinesias is un-founded. Yes those of that are on sinement have a greater chance of having them but it is just part of the progression of this wonderful disease. You will find people who say stay away from it and those like me that say don't wait. Patriot on the forum uses only exercise to treat his symptoms and this works for him. I could not use just exercise seeing as I need some relief from the side effects of the disease just to exercise. Since taking drugs I keep very active and most days people wouldn't be able to tell I have PD. Yes you will get to do activity with your boys. You may have to adjust the way you do them or plan more time to rest but you can still have an active life. I still work full time and have a full life outside of work. The good news is your boys will grow up with you having the disease and will think nothing of it. If you oldest is old enough to understand a good discussion with him may help. What has helped me the most..... exercise, staying active, eating healthy, maintaining an active life, working hard on not dwelling on what the future could have been and might be, living for every moment, and planning for the worst while hoping for the best. I hope this helps. Feel free to ask me anything Blessing Adam
  3. Does anyone else have dreams ABOUT your PD?

    I have also had some vivid dreams prior to diagnosis. I attributed it to Sleep Apnea until I was diagnosed with PD. The dreams have progressed some from 5 years ago. Meaning they have become more vivid and intense. I have any thing from fist fight to apocalypse world ending. Some time takes me a minute to realize what reality I am in after waking but usually dose not bother me.
  4. A little something to think about

    Love the positivity on this thread. I just got back from a 2 week stay in Iceland. Toured a glacier cave, saw countless waterfalls, climbed up a dormant volcano, and drove about 500miles in a 6sp standard shift car. My PD was not an issue as long as I took my meds and paced myself. Managed to average 14k steps a day as well. Good trip and love Iceland. Just shows you don't have to give up on what you love. https://goo.gl/photos/xrmUxpzPM7wzfTvT9 My best wishes to all. Adam
  5. I have found that if I wait to long to take my night time ER I get some dystonia in my shoulder and feet, In the morning when I first rise I find my self with dystonia. To alleviate it till my first dose I stretch and take it easy. I have also found that instead of increasing my dose of C/L I changed the timing. I was taking in 1.5 pills 3x daily, about every 5 hours. I now take 1.5C/L at 7am then 1C/L every 4 hours till 7pm. At 10pm I take a 50/200ER to get through the night. This seems to work very well and has eliminated any wearing off dystonia I used to experience. I also did not have to increase my dose. If I find my self experiencing minor dystonia in my feet during the day, I have a small caffeinated drink. This seems to help. I by no means am addictive to Caffeine. Over the last month I can count on one had how many caffeinated drinks I have had. If it is a placebo effect I will take it. This was supported by my MDS as well if you were interested. Hope this helps Blessings Adam
  6. I just means you do not have 2 of the 26 known genes that are suspected to cause genetic Parkinson's. Not sure if it means you are less likely to pass it on or not. I had my DNA analyzed for mutation of LRRK2 and GBA. Both came back not mutated. Meaning they can not say for sure those specific 2 genes cause or contributed to my diagnosis of PD. Wish I could give you a more definitive answer. Maybe others will chime in with better answers. Blessings Adam
  7. Some one explained exercise like this to me and it help me keep up the motivation. (I have almost the same issues you do during and after exercise). "Doing an exercise routine that gets the heart rate up for 1/2 hour or more is like making a deposit in your 401K. It is not immediately beneficial but will help you in the future." This helped me to understand that I may not see a benefit that day, but I will see it in the future. I can say that after 2 years of maintaining an active life with exercise, I am still on the same dose we first found worked for me and my last MDS visit I had the same scores I did when I first saw them. Good luck and hang in there. It does get better. Attitude is everything with this disease. Every day try and find something to celebrate (be happy abut). It can be as simple as waking up in the morning and putting you slippers on with out meds. This way of celebrating the little thing helps me stay in a positive mind set each day. Blessings Adam
  8. Newly diagnosed- any advice?

    Hi Mark, Going to put my 2 cents worth of knowledge in. I started meds about 8 months after I was diagnosed. The stiffness and pain just got to be 2 much for me to perform my work and exercises. I started on Azilect at first. After titrating up to the full dose (about 2 weeks) I found that the cloud of doom I was feeling had left me and some of the stiffness was relieved. I was still have issues with tremor and dystonia in my feet. My MDS and I decided to start out on a low dose of carbidopa/levodopa AKA sinement or C/L. Once I got adjusted to the dose I found this covered almost all my symptoms and I felt better than I had for last 5 years. My usual shoulder pain was gone, my sore calf muscle had disappeared and I just felt good. So far I have been able to keep my doses of each med at the same levels for the last 1.5 years. As all have said. It is different for each of us. I have found that I have no side effects with either of these drugs I am taking. I felt so much better I have been able to up my exercise regime and travel more. There is a guy who goes by Patriot on this forum and he treats his symptoms totally with exercise. If you are not in constant annoying pain and you feel exercising and the supplement are working keep doing what you are doing. If you need meds take em. Nothing stops this disease as of yet. But with good diet, exercise and what ever meds you decide on if you choose will give you many years of good enjoyable life. Good luck I hope this helps Blessings
  9. Your expertise of Parkinsons, what if?

    I think we have had this discussion before. There are many threads on Ask the Dr's forum on this site that are contrary to what you have said. This is an area where we just disagree. We do agree on exercise. I believe like you it is the only thing that has proven to slow the disease. I believe the reason I have not had any progression in the last 2 years is because of my exercise regime. Much of my motivation has been from reading your post. One more question for you, How is the medical MJ working for you? still using? I have been thinking about using it.
  10. Your expertise of Parkinsons, what if?

    Natasha, Your research is based on old data. The latest research shows that starting levodopa early does not make a difference. It is progression of the disease that cause the levodopa to become less predictable. Recent studies have suggested that after someone has had the disease for 5-15 years and progresses to a certain point, a chemical in the brain called GABBA starts to get affected. With Gabba being diminished the brains ability to control dopamine responsiveness then is diminished causing dyskinesia. There are currently studies determining what role gabba has and is there away to get the levels corrected when people reach that point in the disease. I have talked to many people who where diagnosed around my age of 35, received Cardopa/Levodopa early on like my self and went on many years still taking it. Currently there are 3 people in my young onset group who are going on year 11 with C/L and have not had major side effects yet. After talking with my MDS and Dr. Okun the director of NPF medical team, I saw no reason to wait to start using it. Most University Doctors and research doctors agree with this line of thought. Unfortunately when the big Pharmaceutical companies where developing dopamine agonist the put a bunch of false information out about levodopa so they could scare doctors into using their new drugs. The best advice I have been given is only look at the studies that where not funded by pharmaceutical companies. Good luck and blessings Adam
  11. New to Parkinson's

    Welcome Chief, I was diagnosed at age 35, 8 months after I started my current job. I was up front with them during the whole process. I am lucky because I work in a Nursing home so they understand what was happening. Each persons is different. If you think that you are going to have a had time at your current job with your current symptoms then maybe disclosing is a good thing. This can stop any rumors from forming. If you think you will be able to work with out issue then no need to tell. I have only told my direct boss and the department I work with. If word has gone to HR they have said nothing. In the last 3 years at this job I have seen no change in the way they treated me. Good luck Adam
  12. Just been diagnosed at 36

    Thanks, The Mayo Clinic is in Minnesota. We have University of Rochester, Just as big as the Mayo Clinic.
  13. Just been diagnosed at 36

    I live in a small city in New York state USA called Rochester. It is about the size of Salamanca Spain. Rochester is where Kodak cameras were created. Because my city is on Lake Ontario we like to say we are from the north shore of the United States.
  14. Just been diagnosed at 36

    I love Spain. My husband speaks Spanish fluently and has spent many years in Spain. He first studied in Barcelona, then in Salamanca. Unfortunately I studied French so my Spanish is not that good. Hola, and Me llamo Adam, is about the extent of my Spanish. I will have to start learning it again. I am glad to have met you and I hope this forum continues to be helpful.
  15. Just been diagnosed at 36

    Bluemoon, You write English very well. I have heard of many women having babies while on meds. I think the ones that cause the most problems are the agonist. Check with your MDS when you get in to see them. Just curious. What country are you from?
×