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Everything posted by Gardener

  1. Gardener

    Newly diagnosed - a few questions about sinemet

    The "Doc" has addressed this issue several times in his forum. He said that it is rarely necessary or beneficial to take more than 300 mg of Levodopa per dose. I recommend "The New Parkinson's Disease Treatment Book" by J. Eric Ahlskog. It's the best resource I've found and it's focus is on treatment although it covers every aspect of PD. Gardener
  2. Gardener

    Newly diagnosed - a few questions about sinemet

    Hi Rosencrantz, I started with (1) 25/100 Sinemet 3X a day and I saw improvement in the first week. Within a year I was taking (1) 4X a day plus an extended release at bedtime. Everyone is different so it's best to journal your path so you can discover the right dose and frequency that works best for you. Gardener
  3. Gardener

    Newly diagnosed - a few questions about sinemet

    Rosencrantz, That is a great question and one that I didn't figure out until about two years ago. For me the insomnia (inability to get to sleep) was definitely a side effect so I eliminated my last dose at 7:00pm and that combined with the addition of Trazadone solved my problem. I still wake about 2am and sometimes have trouble getting back to sleep but I think that is the PD. My last dose of Sinemet is now at 4pm and I usually go to bed at 8:30pm. Don't expect too much improvement in your symptoms until you work up to a higher daily dose. Gardener
  4. Gardener

    Newly diagnosed - a few questions about sinemet

    Welcome Rosencrantz, I was diagnosed a little of seven years ago at age 55 with a very similar presentation of symptoms. After trying Amantadine, Azilect, and Mirapex with no improvement in symptoms, I started Sinemet in my second year. I did not experience any side effects from the medication and it provided almost complete control of my symptoms. If you MDS feels it is time to start it then give it a try - you can always discontinue it if it doesn't work out for you. I also feared the worst when diagnosed as I did not have tremor. So far my progression has been slow and after seven years I no longer worry about the atypical forms of PD. It sounds like you are doing everything right, especially the exercise. Good luck and keep us posted. Gardener
  5. Gardener

    Welcome to the club

    You never forget but you put it into perspective. Early stage is mainly a nuisance of symptoms that hardly rise to the level of panic. I'm trying to enjoy these years knowing that they are numbered. I'm encouraged by those on this forum who have been at this for ten, fifteen, twenty years and still are able to manage their symptoms. It could be a lot worse! Gardener
  6. Gardener

    Loss of confidence

    Dear Miracleseeker, You have contributed so much to this forum and all of us have benefited from your kindness and experience. Believe me when I say that no parent wants their child to sacrifice their best years as their caregiver. Your mom is fortunate to have such a devoted daughter and as hard as it is to see her through this journey please know that some day you will be able to look back on all those years knowing that you did everything you could to make her life worthwhile. Your Mom, though she may not be able to say this, wants you to take care of yourself so please try to do this for her. Take care, Gardener
  7. Gardener

    "Levodopa Phobia" Case Studies

    I don't think that Dr. Okun has ever said that Levadopa does not cause dyskinesia. What I have read from Dr. Okun and also have been told by my MDS is that dyskinesia is the result of too much levadopa in the presence of Parkinson's disease. I developed dyskinesia when my dose was approaching 1000 mg a day. I lowered my dose and no longer have dyskinesia. Gardener
  8. Gardener

    elect leaders who have integrity

    Sorry, John, but it is a political statement - if you didn't intend it to be you could have simply said "get out and vote." Gardener
  9. Gardener

    The PD Roller Coaster...

    Hi Mac, Amantadine is not typically used as a challange drug. It is a weak drug for Parkinson symptoms. Sinemet is usually the drug of choice for doing the challenge. I'm surprised no one has suggested a DatScan. Ultimately it is your choice to either wait it out until the symptoms are obviously PD or try to get peace of mind now. The Sinemet challenge or DatScan are not definitive is diagnosing PD (my MDS explained that only an autopsy could do that) but either might give the doctor more information to treat. Good luck, Gardener
  10. Gardener


    Usually it is advised that you start sinemet when symptoms cause a diminished quality of life. Personally, I would wait as long as possible and try other strategies for controlling symptoms (especially exercise). Everyone is different so work with your doctor when choosing the best time to start. Good luck, Gardener
  11. Gardener


    I'm seven years from diagnosis and except for infrequent tremor of chin I have not had much of a tremor. For the past several months I have been aware of a vibration in my right arm and very recently a resting tremor in my right hand. For those who have tremor, does the tremor come and go depending on time of day, stress, tiredness, etc. or is it constant at rest? I have read that once it begins it generally is always there at rest. So far, mine has been later in the day/evening when watching TV. Any information about tremor would be appreciated. Thank you. Gardener
  12. Gardener


    Thank you, Chuck. I'm really sorry you are dealing with what sounds miserable. Maybe a second opinion on that DBS idea although I can understand why you are hesitant. How long have you been diagnosed? Did the tremor start in one hand and later the other? Take care, Gardener
  13. Gardener


    Thank you Sherry and Kai. The tremor I experience is exhausting but thankfully infrequent. I can't imagine what it must be like for those that deal with it most of their waking hours. Good luck to you. Gardener
  14. Gardener

    Just joined the club

    Welcome JMMouse, Most of us on this forum have the common Idiopathic Parkinson's Disease which is quite different from CBD. You used the word "tentatively" and I think I can speak for everyone here when I say that I hope the doctors are wrong. You're on the right path with a MDS. These Parkinsonism diseases are complex and difficult to diagnose so consulting with the best will likely get you some answers. Hang in there and keep us posted. Gardener
  15. Gardener

    Mired in Muck

    Hi Papa57, Sorry to hear that you are going through a difficult time. I understand where you are coming from as my story is very similar. I'm amazed that you are traveling three hours to a part time job! Volunteer opportunities are everywhere so maybe finding something that you feel passionate about will help fill a void. We just recently moved from a very remote place to a small community. I found a senior center close by that I plan to visit this week and hopefully signup for exercise and other classes. After seeing how that goes, my next step will be some type of volunteer work. If you can find these options close to your home, maybe your involvement will lead to friendships that will give you even more social interactions. It's difficult to get out there at our age but so helpful in managing this disease. Good luck to you - Gardener
  16. Gardener

    For those that think C/L causes Dyskinisia ?

    I think the more interesting question is whether c/l causes dyskinesia in people without the disease. There seems to be no clear answer to this question. I've read that dyskinesia is the result of both too much c/l combined with disease progression but I'm not sure that this has been researched. Gardener
  17. Gardener

    Phantom smells???

    Interesting responses to this topic. When you research this, olfactory hallucinations are said to be rare with PD. I am still dealing with this every day -- the odor is the the same for me but varies in intensity - smoky, sweet. The worst part about it is that it has taken over the smell of coffee which used to be my favorite beverage. Gardener
  18. Gardener

    Working with Parkinson's?

    Hi Everett, Based on everything you wrote, I would bet that you have an excellent chance of working well into your 60s. Sounds like you are doing everything right and your job conditions are ideal. My own experience has taught me that not moving makes most symptoms worse. Good luck. Gardener
  19. Gardener

    Who's on your healthcare team?

    My "team" is a movement disorder specialist and I try to go as little as possible. I really don't like getting sucked into the medical industrial complex. Just another point of view - not meant to be critical of those who like going to the doctor. Gardener
  20. Gardener

    Phantom smells???

    Doesn't everyone with Parkinson's disease also have Lewy Body pathology (not necessarily dementia)? I don't have any visual hallucinations. Gardener
  21. Seven years from diagnosis I'm struggling with expectations of family and friends. I'm the type of person who doesn't dwell on the disease and have tried to live as normal a life as possible but the fatigue is really getting the best of me and I just don't know how to let others know that I don't have the energy to do the things I have done for so many years. Instead, I keep trying to keep up - maybe because I know if I stop then I'm giving up. I would like to hear from anyone who is a spouse, parent, grandparent, etc. who is dealing with this struggle. Gardener
  22. Gardener

    Phantom smells???

    I've been experiencing this phantom smell thing for several months not knowing what was causing it - finally found this thread and its exactly as others have described. I've had a diminished sense of smell for a long time but this is different. This phantom smell (difficult to describe - sweet/smoky) has taken over my olfactory system. Strong smells (like my grandson's diaper, coffee, etc.) will intensify this distortion and almost everything smells like this phantom sweet/smoky smell. For those who responded, will this go away? Gardener
  23. Gardener

    Struggling with family relationships

    Hi Kai, You are right - this has more to do with my own expectations than those of others. I wish I could take care of my grandson so he didn't have to go to daycare and I miss going on sister vacations. When I was diagnosed my younger sister, who has down syndrome, was living with me. She was like a daughter to me but I had to make the difficult decision to have her go with another family member. I don't have visible tremor (I do have internal tremor) so my most troubling symptoms are not apparent to others. Thank you for your thoughts and good luck on this journey. Gardener
  24. Gardener

    Sharp intermittent pains part of PD?

    Hi Ellen, I have unexplained random sharp pains with no explanation but not at the frequency you describe. It must be very uncomfortable. Hope others weigh in on this. Gardener
  25. Gardener

    26m with a few questions

    Hello Namaste, No need to apologize for posting - this is a supportive group and most will take your concerns seriously and do their best to help. Since you have a troubled and stressed past, your symptoms could well be related to other issues. It might be helpful to focus on the four cardinal symptoms of PD: tremor, rigidity, slowness and postural instability. If you begin noticing these symptoms then a trip to a movement disorder specialist might be a good idea. Until then put the thought of Parkinson's disease out of your mind and try to live your life fully. Gardener