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swamper

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Everything posted by swamper

  1. Weight Loss

    I have lost 25 pounds since diagnosis, four years ago. My MDS thought it might be due to Azilect, so he had me stop that in January, and my weight has stabilized. My BMI is 18.4, and does not seem to budge, despite taking in 2000 calories daily. I figure I am destined to be skinny, and am happy that it is stable at this point,. I do not have any experience with DBS, although I have read that people often gain weight after the surgery.
  2. Not Diagnosed, However Need Advise

    I am not the best person to advise about sleep. I am retired, and so do not have to function very well during the daytime. That said, I take 50 mg trazodone at bedtime (have for years), and I go to sleep promptly most nights, at about midnight. I wake most mornings about 6 am, and that is it for the day. I rarely take a nap, which saddens me, as before PD that was one of my greatest -pleasures. But such is life, and I figure I am doing as well as can be expected, with just six hour of sleep. If I take the trazodone any earlier than 11 pm, I am up at 4 or 5, so the six hours seems to be all that I need. Retirement is a blessing!
  3. Not Diagnosed, However Need Advise

    Yes, my tremor increases with exercise, and also the muscle stiffness is difficult. I have always been very active, and find the limitations on my activity very frustrating, but I am convinced that I would be in much worse shape if I did not do my Rock Steady boxing or my gym workouts. And my mental health would be a whole lot worse as well. So keep fighting!
  4. Not Diagnosed, However Need Advise

    Dear Doubleup: Exercise! Even if you don't feel like it, or especially if you don't feel like it, exercise! That is the one thing that has been shown to slow progression of PD, and it is good for whatever ails you. Cycling, boxing, have been shown to work. But whatever you do, be sure to stick to it, and do it faithfully. My best advice to you is that. Good luck! And keep fighting!
  5. Atlanta Area MDS & Neurologist Recommendations

    I know you are very far away, Patrick, but those of us in South Georgia travel to Jacksonville Florida for care. I would heartily recommend my MDS there. If you have any interest in more info, PM me, and I will be glad to provide it. Best of luck!
  6. bra strapes

    I have found Coobie bras are wonderful, and comfortable. They go on over your head, and have pads in the front for modesty, and come in all sorts of colors and styles. I am small breasted, so am not sure how it would be on a fuller figured girl, but I really love my Coobies!
  7. This is a good summary that is understandable. https://scienceofparkinsons.com/2017/08/04/exenatide-one-step-closer-to-joblessness/ And this is a word of caution. https://scienceofparkinsons.com/2017/08/08/exenatide-an-editorial/
  8. Morphine in hospice care

    Dear Genden: I am so sorry for your pain. When my dear sister-in-law was terminal with breast cancer, she was given morphine whenever she seemed uncomfortable. It was more for us, watching her, I believe, than it was for her. I saw the same thing happen with my mother, when she died. Although it is true that morphine can depress respiration, used carefully it is a wonderful drug for relief of pain and anxiety. In my experience, once the person stops eating, there is about two weeks left and I suspect you are nearly at the end of your dh's pain and suffering. But yours will continue; You are in my thoughts and prayers. Adrienne
  9. It is Seven Months Today

    Bless you, dear Maral! You are doing something wonderful for your DH and for the others at the center. I am grateful for your honesty and enthusiasm,. and wish you all the best. It is so good to hear of a happy result, after a very difficult decision.
  10. This works for me...what works for you?

    I have been given a real gift with prism lenses! I had been having increasing difficulty with reading and using the computer at night, which I finally figured out was due to double vision when I was fatigued. Went to my husband's ophthalmologist, who referred me to his wife, who is an orthoptist. She mostly deals with children with strabismus. But she diagnosed me and they fitted me with reading glasses with prisms built in, and now I can see and read, and life is so much better. They don't look any different from anyone else's reading glasses, and have helped me tremendously. Just thought I would post on the chance that somebody might use the information.. This has REALLY worked for me!
  11. Bucket list BEGINS!

    Once again, you inspire me, NN. You go girl!!!
  12. Building a new home & looking for suggestions

    Congratulations, Secret squirrel, on starting this great adventure! My dh and I did it, about 15 years ago, and have loved having our own home, designed with our needs in mind. A couple of things we have learned over the years since my diagnosis. First, have as few steps going into the house as possible. And even if that is two or three, put up railings so you can get into the house. Also, have grab rails in the toilet area, and be sure to have the higher toilet seats. I regret that I did not test out the height of the dishwasher, as the open door is so low I cannot easily load it. And likewise, the cabinets are low and storage of pots and pans is a problem. Of course, something has to be down low, so I am not sure how much modification one could make! I am sure there will be people with more suggestions here soon, but I would certainly look long and hard at websites and consultants about accessibility. It is so much easier to do these things ahead of time, than to have to do them after the building is complete. Best of luck to you. As I say, building a house is a great adventure, not for the faint-hearted....
  13. This works for me...what works for you?

    I have discovered Coobies, which are bras that you put on over your head . They are extremely comfortable, and only cost about $20, but I am 70 and small breasted, so they might not be comfortable for someone who is better endowed. But they come in all kinds of colors and patterns, and are fun to wear and to look at. Another win/win for this old Parkie!
  14. Good morning!!

    Linda: I follow this thread, and wonder about Shepherd's Spring Conference Center near Sharpsburg? DH and I stayed there last June for a Road Scholar trip.. It was lovely.
  15. Help With Question

    I could have written your post, Peace, except my problem is my right hand. Odd, because my PD started on my left side, and I am predominantly left-handed. The shampoo thing drives me crazy, as does the clothes folding thing. I hate to see socks that need to be folded! ( I think I am being punished for my obsessive-compulsive tendencies) At any rate, it is always good to feel validated, as I often think I am imagining these little irritations. Thanks for that!
  16. Mouth and tongue movements

    Dear miracle seeker: first of all, you are too hard on yourself! You were not the cause of your mother's teeth falling out---you provided her relief from her dyskinesia symptoms, which I am sure she needed badly. How were you to know that she needed to brush after the almonds? I have similar mouth chewing issues as a form of dyskinesia, and have struggled to find relief. I have tried all sorts of things and have come to the conclusion that this is the price I must pay for control of my PD symptoms. Fwiw I admire your dedication to your mothers care. She is blessed indeed to have you!
  17. Too much meds

    My dyskinesia is weird. I chew the inside of my mouth, and sometimes chew it until it is raw. It happens some days after my second dose of Rytary, and on those days, it will go on from mid afternoon until bedtime. Interestingly, I do not have the problem at night, even after my bedtime dose of Rytary. I am only four years into treatment for this disease, so am not sure if dyskinesia will progress to more typical symptoms.
  18. Your expertise of Parkinsons, what if?

    Exercise! Rock steady boxing! Bicycling! Keep moving! Keep involved with support groups, in person and on-line! I am not so sure about meds, but I am convinced that exercise is critical. Best of luck to you!
  19. Depression

    I have had depression (familial) for nearly all my life. I took Prozac when it first came out, and was on that (40mg),sertraline and trazodone for more than 20 years.Only got off the Prozac about three years ago, when my MDS wanted to start Azilect, and was unwilling to do so with me on Prozac. I weaned off it, got on sertraline (150 mg) and trazodone, 50 mg for sleep, and have felt good ever since. I often wonder if all the fooling around with my serotonin somehow helped bring on the PD, but i feel better than I have in a long time since the med change. FWIW I would not hesitate to take sertraline, and trazodone is great for sleep. Best of luck!
  20. Fishing for clarity

    Thanks for posting this, LAD. Amazing work!
  21. Drifting....in faster waters

    Thanks so much for sharing this, NN. You have helped me immensely through all your posts, but this one is striking in its courage and candor. I wish you all the best--- and that none of these plans are needed, and that you will both end up with "plain old PD". In the meantime, you have given me a great deal to think about, and a road map for a future I hope never happens to any of us. You and your dh are in my thoughts and prayers.
  22. Thanks for clarifying that, nn and patriot. I stand corrected. Swamper
  23. Dear Luke: Look up posts from "Newnormal" on this board. She and her husband both have PD with negative DAT scans.
  24. New ACA legislation vote 3-23-17

    Done, John. Thanks for the reminder!
  25. Going from Mirapex to Neupro Patch

    I have been on the patch for about a year. Started very slowly, and only recently went to the 4 mg dose. I think it has helped smooth out my on times. It certainly helped me to sleep better--I routinely get a good 6 hours of sleep a night. I have mild nausea, which I manage with omeprazole twice a day. The itching is a nuisance, but not severe enough to stop the treatment. All in all, I am happy with Neupro. Hope this helps.
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