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Everything posted by Gardener

  1. 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
  2. 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
  3. 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
  4. 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
  5. 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
  6. 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
  7. 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
  8. 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
  9. Gardener

    Struggling with family relationships

    Thank you all for your responses - there is help in each of them. I'll ask about Rytary at my next appt. And, yes, Sinemet does make me sleepy. Patriot, you are right and that is why I keep pushing myself. One day at a time... Gardener
  10. Gardener

    Do any of you here sleep - I get little or none

    Noah, You might ask your doctor about an increase in the Trazadone. The 100mg worked for a short while for me before my doctor increased it to 150mg. I've been on that dose for a year and it is still working. I hope you find relief soon. Gardener
  11. Gardener

    Morning weakness

    Hi Fred, Are you getting enough sleep? If not, it might take extra dopamine to get you going. Before I started Trazadone (which has been a miracle drug for me to help with sleep) the mornings were really rough. I'm still slow for the first couple of hours after awakening - it seems like that first dose just takes a little longer. Gardener
  12. Gardener

    Ask the Doc

    I asked a question to Dr. Okun in the ask the doc forum but for some reason it appears in the forum but with no answer. I have noticed that this has happened to others - a question will appear in the Doc forum but with no answer. What's happening? Gardener
  13. Gardener

    Ask the Doc

    The subject is "swelling." I have noticed that this has happened to others who have posted a question in the doc forum. It doesn't happen very often - maybe I should just repost the question.
  14. Gardener

    Ask the Doc

    Forum Administrator, If it is only visible to me why does it appear in the doc forum and currently has 46 views? Gardener
  15. Gardener

    prescribed pramipexole

    Hi Fred, In year two after dx I was on a similar dose of Sinemet along with pramipexole. I experienced impulse control issues as well as insomnia. I stopped the pramipexole and slowly shortened the intervals of Sinemet to eliminate wearing off. This strategy has worked well for me. As LAD said, everyone is different and there is probably not too much downside to trying it - just be aware of the potential side effects. Gardener
  16. Gardener

    Ask the Doc

    Thank you, Linda. I'll wait and see what happens next.
  17. Gardener

    Dropping Things

    Hi Bill, I drop things a lot and in my case I think it has more to do with stiff hands, not shaking hands as I generally don't have tremor. Gardener
  18. Gardener


    Hello Dr. Okun, I've been having fluid retention on my affected side (mostly hand and lower leg). My hand is quite painful when this happens. I've had stiffness in both hands for many years and Levodopa does help. Could this be PD or should I be investigating other causes? Thank you. Gardener
  19. Gardener

    Is DBS being oversold?

    Hi Johnny, There may be something to your concern. At my 5 year mark, I was asked if I would consider DBS. My doctor wanted to put in a referral for an evaluation. I responded that the meds seemed to work well for me and that I hoped I would never have to face DBS but also wouldn't rule it out down the road. I also wonder about DATscans - are they being over sold too? Seems like a simple levodopa challenge is an effective diagnostic tool. Better yet, time will reveal the answer for most people. Glad you had a nice Father's Day. Gardener
  20. Gardener

    medicare coverage

    Noah, Did you sign-up for a Medicare supplement and, if so, is it a Medicare Advantage Plan or a Medigap Plan? These plans often pickup the expenses that Medicare doesn't cover. You have six months from the date of your Medicare eligibility to sign-up for a Medigap Plan without going through medical underwriting (very important for people who have PD). The Advantage Plans are very different and in my opinion more costly in the long run for people with a medical condition that requires frequent and long term care. Good luck! Gardener
  21. Benyamin, Thanks for posting - very interesting. It would be more revealing if she was not on medication and used exercise only to evaluate its effectiveness. How can one know if it is the medication or exercise that is helping the most when both are used together? That being said, I'm impressed with the amount of exercise she is doing especially given her age. Gardener
  22. Gardener

    10 good years???

    Enjoying this post - I'm 7 years in and doing much better than I imagined when I was diagnosed. I can't do half of what I used to be able to do but it's the other half that I'm pleased about. We're all different but also alike in so many ways.
  23. Good morning - Would like to know if others have this symptom (which is somewhat difficult to describe). Many times per day and more often at rest, I get these waves of what feels like a tingling charge lasting several seconds each and often repeating. This happens in my chest and trunk area most of the time but has occurred in other parts of my body. I get a similar sensation in response to unexpected noise (i.e., someone coughing, sneezing, slam of a door, etc.). The symptom is unpleasant but not painful. I'm assuming it is PD related as I did not have this symptom before my dx.
  24. Gardener

    Dyskinesia vs Akinesia

    Hi Otolorin, A couple of years ago, I was taking 1,000mg of c/l a day and experienced wiggly feet and involuntary movement in my hand. Over the past two years I've slowly reduced my medication to 650mg and almost never have dyskinesia. I do have more PD symptoms now but I've adjusted and very happy to be on less medication. I have a question for you - do you experience any tremor at all? Gardener
  25. Gardener

    Dyskinesia vs Akinesia

    Hi PD, Maybe these are questions for the Doc, but it is my understanding that dyskinesia can be present with both tremor and non tremor PD types as it is a symptom of excess dopamine. Akinesia is a defining symptom of PD and I believe can be present in both types as well. I am not tremor dominant and have experienced both symptoms. Gardener