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adams234

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adams234 last won the day on May 12

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About adams234

  • Rank
    Advanced Member
  • Birthday 02/20/1979

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

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  1. 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
  2. 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
  3. 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.
  4. 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
  5. 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
  6. Thanks, The Mayo Clinic is in Minnesota. We have University of Rochester, Just as big as the Mayo Clinic.
  7. 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.
  8. 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.
  9. 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?
  10. Bluemoon, Welcome. I was diagnosed at age 35 almost 3 years ago. I understand how you feel and what you thoughts are. I took me a good year before I could honestly say that I had accepted what was happening to me. Now 2.5 years later I am happier now than I have ever been. The biggest thing is don't stop anything until you have had a chance to work with your new reality for awhile. Just because you finally have a label for the problems you have been noticing does not change the fact you have been coping with those problems for many months or even years before now. This disease is slow progressing. Trust me you have time to processes and change you mind set before you make any quick decisions. For now maintain a healthy diet, keep you fiber up so you can keep your bowl regular. Keep active and exercise when ever possible. It helps and make a big difference. Don't let the PD monster kill your entire future. It is still your future. It just might not be the way we thought it would be. Take time, reflect on where you have been and where you want to be. You will still get there. For me researching treatment and getting to know this disease intimately has really helped me decide when and what meds I want to take. There will be hurdles. Just like your past there were hurdles you had to overcome. Some tougher than others. Celebrate those accomplishments daily. Every morning I wake up and my legs are stiff, my feet are hurting and my head wants to pull down to my right shoulder. I slowly stretch, slip on my clothes, hobble down the stairs and let the dog out. As the dog is doing her business I take a moment and celibate the fact that I did all that without taking my first dose of meds. Every time I do something that takes a lot of fine motor skill and concentration I celebrate that I was able to do it. It sound cheesy but the more moments you can find to be happy the happier you will be. Feel free to contact me if you need anything Sorry you had to join our club but glad you found us. Blessings Adam
  11. Noah. I asked my doctor about this, She told me if I needed to adjust my first dose because of special events then just adjust the timing for the rest of the day. She also said it was ok to take an extra pill on a day of travel because of time changes. Double check with you doc. just to be sure. Hope this helps Adam
  12. Best advice I got and I used and continue to use is this. If you flight is during the day take your dose on your starting time zone. Once you arrive at your destination stay on the time zone you just came from till you go to bed. When you get up take meds at the new time zone to the schedule you where using. Then do the reverse when you go back. I did this when I flew to Iceland and it worked well for me. (5 hour change) my flight was overnight. I took my last pills boarded the plane and then tried to sleep. Once we arrived in Iceland I took my regular morning dose at 7am Iceland time. I found I had no issue doing it that way. When we came home I stayed on the Iceland time zone and took an extra pill because we gained 5 hours. When I went to bed that night I made sure to go to bed at my regular time. Then put my self on my regular schedule the following morning. Hope this helps Blessing
  13. Manolo, Welcome the club you never wanted to be a part of. I started out using diet and exercise. When my symptoms became to bothersome I started out with Azilect. It helped a small amount. It relieved some stiffness, my mood got better, and did nothing for my tremor. After that my MDS and I decided to use Cardopa/Levodopa 25/100 AKA sinement. It has made the world of difference for me. With the azilect and sinement combo I am feeling better than ever. Nobody can tell I have any problems. Remember results will very. One thing I caution is using agonist. They have a tendency to have the most side effects than any thing else. Exercise is the best medicine. Blessings
  14. Glad to see others with PD are out enjoying life as much as possible. I have found when I am traveling and doing what I love my symptoms are less severe and overall I feel a lot better. Good luck.
  15. Lad, your positivity is infectious. Keep it up. I often tell people that I am happier now than I have every been. I have a whole view on the world I finally know why my body reacts the way it was. I will live to my fullest potential every chance I get. Blessings