Forum Replies Created

  • vickie-paul

    Member
    August 24, 2023 at 4:00 pm in reply to: Do you have theories about why you have Parkinsons?

    I  Think it will turn out to be a complex interaction involving the gut, diet, genetic predisposition, and exposure to some toxins.  We will have to modify our approach to research, which currently is driven by a desire to make money. Probably we have already shut down promising approaches because there was no way to monetize the process.

     

  • Two things, my walking poles, and my Hollywood bed with an open frame of welded pipes along the back that I use to pull myself up.

    The poles really help with balance, take up minimal space, and are inexpensive enough to have several pairs around the house. My problem is after sitting awhile everything freezes up and I need the poles for the first 10 steps or so. I’m scared of walkers, maybe comfortable with the poles because I used them for hiking back in the day.

    People react to the poles mostly neutral to negative. I stop and talk to the positives. Last week a woman walked up out of the blue and said she tried them but not for her. Thanks for sharing!

     

     

  • vickie-paul

    Member
    October 26, 2022 at 11:02 pm in reply to: Neupro transdermal patch

    Sorry reply took so long. Couldn’t figure out how to use the site easily before I tried the Neupro patch. It has given me an attitude correction, YES I CAN instead of screw it, and the energy to get ‘er done.

    Price is high. I’m in the donut hole, so I pay $200/ month. I think I added it up one year and the total was around $6000.

    However, probably the most serious downside is potential seizures. I had 2 while driving. Crossed over into oncoming traffic. So I gave up driving for six months. I also had to give up the Neupro. 6 months later I ditched the car keys and got back on the patch. It is that important to me.

    I’m loving life, doing aqua therapy at the YMCA, Finishing years old projects. Sometimes you’re the bug, sometimes you’re the windshield.

  • vickie-paul

    Member
    October 26, 2022 at 9:46 pm in reply to: Urinary and Bowell Movement problems

    I have dealt with incontinence for years, even before I was diagnosed with Parkinson’s in 2013. My neurologist says it’s one of the most common early symptoms of the disease, though it doesn’t get much air time because of the “eww” factor.

    I use protective undergarments 24/7. My urges are too strong, especially when I get up from sitting, to obey a muscle stop-flow. I concentrated on finding a combination of products that allow me to stay in bed through those 2-AM and 4-AM wake ups that make it impossible to get a good night’s sleep. I still wake up some of the time but generally fall back asleep within minutes.

  • vickie-paul

    Member
    September 5, 2020 at 10:31 am in reply to: Do you struggle with freezing episodes?

    My freezing episodes occur whenever I get up from a chair, get out of the car, have to step down in a doorway. I just have to wait until the spirit moves me. Then I take small shuffling steps, then shift my weight side to side, and finally walk normally to my destination. The longer I sit the worse the freezing.

  • vickie-paul

    Member
    February 13, 2020 at 3:35 pm in reply to: Did you have low blood pressure before PD diagnosis?

    Jean, just saw your question, sorry,.. i actually take rasagilene, the generic. My neurologist tells me it doesn’t do much for current symptoms but appears to stabilize PD  and provide some protection against further  debilitation. I haven’t experienced any effect, good or bad. I continue to decline, mostly slower walking, freezing, voice changes. Since my most serious problem is severe arthritis pain in my knees I currently spend most of my research time on pain relief, right now on more effective topical CBD creams which seems to help the knees.

  • vickie-paul

    Member
    February 13, 2020 at 2:37 pm in reply to: Dating and PD

    At  72, 22 years a widow, I’m unlikely to enter the dating game. But if I did, I would hate having to tiptoe around a topic that involves such a significant part of my life. It’s not like you can keep it a secret once you meet.

    I think one would be better off to introduce the subject earlier rather than later and let the chips fall where they may. Since I frequently make fun of my symptoms (my grandson calls me turtle), I would make some joke about my Parkinsons and go from there.

    Another suggestion is to go to meetings and /or exercise classes for Parkinson’s clients and see if anyone interests you, client or caregiver. That’s where I find myself, in TaiChi class comparing notes on exercise programs, doctors and new treatments with a man whose warmth and caring demeanor tempts  me to see if he is available, or just wants to share a cup of coffee. Haven’t followed up on that though.

     

  • vickie-paul

    Member
    December 2, 2019 at 5:08 pm in reply to: What PD symptom impacts your quality of life most?

    One of my exercise instructors recommended a magnesium supplement for my restless leg syndrome. I take M.Oxide, 250 mg once a day at bedtime. I also get 150 mg in my daily multivitamin. It has helped tremendously.

    Right now my biggest challenge is freezing and slowness. It takes forever to get out of bed, or the car, or up from the couch. When I get upright and balanced, then I have to wait to get unfrozen.

  • vickie-paul

    Member
    December 1, 2019 at 4:52 pm in reply to: HIIT and PD; what about fatigue?

    I am 72, diagnosed in 2013. I tried several HIIT cycling classes at the YMCA. I loved the company, our sometimes black comedy like the time one of the cyclists was headed to the floor and the instructor made an incredible save, cradling his head. The rest of us erupted into clapping, hi-fives, whistles and catcalls, mystifying other gym rats.
    But, the agony of those itty bitty bicycle seats, and the effect of the hunched form on the lower back made me give it up. Instead I gravitated to the gentle yoga classes, TaiChi, and Feldenkrais, popular in Europe and the U.K. They describe it as Awareness through Movement, where a skilled practitioner guides you through a very individualized program of finding a different set of muscles and neurons to circumvent the effects of loss caused by Parkinson’s. It’s a very adaptable approach to the myriad of seemingly random body part failures.
    An example: I have severe osteoarthritis of the knee, so painful I have to limit any walking. My instructor worked with me on transferring weight side to side, using areas of the foot and ankle to grip the floor, then establish a rolling effect of the feet front to back, walking, but using a different neural pathway. From there she steered me through opening the pelvis, letting it take on more structural support. The effect of these conscious movements shifts pressure away from the knee, so walking is less painful. She also noticed I pair arm and leg on the same side when I walk, rather than diagonal right leg/left arm and left leg/ right arm. Changing to the diagonals improves balance and stability. Though It’s hard to change something as basic as walking this approach is helpful.
    Overcoming fatigue is a huge problem. But since I like exercise class more than stuff I should be doing like paying bills, laundry, housework, etc., I play hooky by going to class. My regimen is very non threatening, much of it done seated or on the floor, so I don’t dread the experience. And I can’t begin to thank my fellow classmates and instructors enough for their encouragement and friendship. In short!!, I encourage everyone to exercise, but i don’t think it has to be hi intensity to be helpful.

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  • vickie-paul

    Member
    November 21, 2019 at 8:41 am in reply to: Did you have low blood pressure before PD diagnosis?

    Just a data point: My blood pressure has been on the low end most of my life. Never had problems with dizziness or fainting, before or after PD diagnosis (October 2013).

    I take C/L usually 3x/day, Sinemet 1x/day at bedtime.

  • vickie-paul

    Member
    May 5, 2023 at 2:12 pm in reply to: Neupro transdermal patch

    I am still very happy happy with my 2mg Nupro patch. I think it’s Been most effective at dispelling brain fog, and keeping me motivated. I  sleep well, get out of bed and get my day going. Unfortunately I was felled by a UTI for a month or more but now getting back to normal, whatever that means. Mostly I want to get back to the pool. The exercises help my arthritic knees immensely. So far this year I pay $350 / month co-pay. Pricy but worth it, and it will come down some through the year.