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swamper

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Everything posted by swamper

  1. swamper

    Good morning!!

    jb: That is wonderful news! Rest up, and listen to your doctors now, until you are feeling good again. (Or listen to us instead, but do rest!) Swamper
  2. swamper

    Good morning!!

    Just said a prayer for you, jb. May the Lord be with you today, and all the days to come..
  3. swamper

    Good morning!!

    Dear jb49: I am sure you will jump up and dance! You have helped so many of us over the years; you deserve an excellent result from DBS. We would expect nothing less! You will be in my thoughts and prayers as you go through this newest adventure. Keep on smiling, and let us hear from you early and often! Swamper
  4. swamper

    DBS Course

    Thanks, Waruna, for posting this. It is an excellent course!
  5. swamper

    Good morning!!

    Dear jb49: Your post got me thinking---I have started to use Dragon software and now dictate many of my emails and letters, which makes it a lot less frustrating. You might try it! I am not terribly computer literate, but found it pretty easy to use. It learned my speech patterns quite rapidly. A thought for you---maybe it would make life a little easier, and also would allow us to read more of your musings!
  6. swamper

    The period at the end of the sentence.

    Genden, I am so very sorry for your loss. You have been a great contributor to this forum, and I am grateful for your insights. May you find consolation in knowing that you did your very best for your dh, and that he is finally at peace. Adrienne
  7. swamper

    Akathesia, is this present in your off?

    This was a real "aha" moment for me. I have had trouble with my right leg wanting to be elevated when I am standing still for a couple of years It is worse now and noticeable to others. I will be standing still, usually in the evening, and have to flex my hip and elevate my right leg. I am finding it happens more and more during the day now, and no longer find it a wearing off phenomenon. My MDS initially thought it might be a form of dyskinesia, but I now think it is akathisia, and will bring it up with him at my next visit in May. There is no pain associated with this but I cannot seem to control what my leg is doing. I also have found that in the evenings I have trouble keeping my right leg still when sitting, and keep crossing and uncrossing my legs. In my case, I believe it is a part of progression of the PD, as I have noticed it increasing over a period of time when my Rytary dose has been steady. As always, you have helped me sort out something that has been puzzling for a while. Thanks, everyone!
  8. swamper

    Good morning!!

    What a big week it has been for birthdays in the PD world. A couple of regulars on Patients Like Me have just celebrated 60 as well. Y'all are young whippersnappers! Happy happy birthday, JB from the swamp!
  9. swamper

    Washington Post article on marathon runner with PD

    Thanks for posting this, Super.. I have sent the link to our support group members.
  10. swamper

    Parkinson's Disease & Dementia

    @maral77 Please accept my sincere condolences also. You were indeed a wonderful helpmate for your dh, and I am sure he knew that. You will be in my thoughts and prayers. Thanks for all of your help on this site.
  11. swamper

    Neupro patch

    I have been on Neupro for about a year. Started very slowly, and now am on 6 mg, and I find that the nausea has mostly gone away. I have itching where the patch was for a day or two, but that is manageable. It has smoothed out my med doses (Rytary four times a day), and has helped me get a solid six hours of sleep. I have noticed some mild leg swelling at night, but also have put on a couple of pounds, which I needed to do. All in all, it has been a good thing for me. I wish you luck with it. r
  12. swamper

    Early PD and vigorous exercise

    I pay $70 per month, or $15 per session, at the program in Amelia Island, Florida. The program we are starting in Blackshear GA will be free in the beginning, except for the cost of the gym membership. But our coaches are all volunteers. My understanding is it varies depending on the location as well as the set up.
  13. swamper

    Welcome to the club

    Superdecooper: Now you are an ideal candidate for vigorous exercise! Start boxing, or biking! We look forward to seeing you not progress!
  14. swamper

    Good morning!!

    jb49: I have lurked and lurked on this thread for way too long--but now my cover is blown! The Swamper comes from my geographic location, in the Okefenokee Swamp. I never heard of the term being used as you mentioned--I wonder if it is a Canadian thing? At any rate, now I must let everybody know that I am lurking. If I could only type a little better (darn PD!) I would offer many more comments.
  15. swamper

    Good morning!!

    Peace, for you and the family, Diane. You are in my thoughts and prayers.
  16. swamper

    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.
  17. swamper

    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!
  18. swamper

    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!
  19. swamper

    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!
  20. 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!
  21. swamper

    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!
  22. 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/
  23. swamper

    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
  24. swamper

    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.
  25. swamper

    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!
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