I am 66 and have been diagnosed with PD for 2.5 years. Fatigue, slow movements, walking, speech and freezing are issues I face. Regular exercise, Simmet and Big and Loud plus a PWR therapies have helped.
Currently I am struggling with bed mobility— managing the covers, which seem to trap me even though I use the lightest ones I can find and moving in bed, which I need to do every hour or two to be comfortable. I need my wife’s help to cover and uncover me and we are both suffering from interrupted sleep.
Has anyone experienced this and been successful in dealing with this issue? My wife can’t understand how I can walk 1 to 2 miles most days but can’t move a light blanket. It seems similar to freezing, but I don’t have a technique to overcome this.
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Ahopeful
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I deal with the same things at night. These are the things that help. I have a trapeze bar above my bed that I use to grab to move myself in bed. It doesn't screw into the ceiling it comes with a metal set up that fits under the head of my bed, extends up and over .. purchase at any home medical store. I wear gripper socks, otherwise I can't move myself up in bed. I have a short bed grab bar/safety rail on each side of my bed up where I can grab on to it to move myself and to help me turn over . I use a twin/double furry soft throw/quilt. No sheet. Sometimes I wear clean white canvas sneakers to bed to help me move. Let me know what you think!
That can be one of our symptoms. Since I started the b1 Thiamine hcl I can move and even turn over in bed. My sense of smell has started to return. My toes don’t curl under or cramp anymore. My constipation is gone along with my incontinence. No UTI’s since starting the b1 in November. I no longer need to use a shower chair as balance has improved. Please refer to Facebook group Parkinson’s Thiamine hcl. This is a closed group just ask to join. It is dedicated to the Thiamine hcl protocol.
I tried thiamine from Sept to November 2018, starting at 500 mg 2x per day, increasing to 1 gr after a month of not feeling any difference and then to T1500 mg 2 x per day, which made symptoms worse. Took a 2 month break over holidays and now am back on 500 mg 2 x per day since January. So far can’t tell any difference. Will check out FB group.
Yes, keep trying. It takes time to find the correct dose. I have severe fatigue lately. I stopped the HDT today. I will start back in one week. I was taking 1g in the morning and 1g in the afternoon. I will try 500mg mornings and afternoons.
Read as many FB group posts as time allows. That is where I’ve learned the most. Ray, GioCas and Easilly (Art) are very knowledgeable and helpful. The tabs at the top contain valuable help also. Good Luck
It's wonderful that you can walk that far daily. I sleep on my couch which is more narrow than a twin bed. I use "throws" as cover. The throws are narrow and easy to "throw" off. You might try sleeping on top of the bed covers and using a throw instead. (I just read Icequeen's advice, which is better than my advice.) Good luck.
Dr C starts a dosage according to your weight. with 160 pls about 72 kilo we start with 3g. You will definitely see some change . Then after some time if the change starts to decline , then he will ask you to half. A pull test is warranted .if the pull test is ok, then that is the right dosage. why dont you tell us your weight? maybe someone here has the same weight and may help you with the dosage to start up?
The only change i see in my husband is that hes able to walk for longer distances. My husband finds John pepper's quick walk good too although hes not able to extend longer than 12.5 mins.Hope this helps
I understand you totally. The thing that helped me tremendously is satin sheets. Also wear something “slippy” like bathing suit or cycling shorts. It makes a huge difference in being able to move. Which means you sleep much better. I ordered them from Bed, Bath and beyond for $50. I only need the fitted sheet so I sewed elastic around the edges of the flat sheet to make it into another fitted sheet.
Diagnosed almost 7 years. Used to have huge issues turning over in bed at night. Can't say if it's all the walking and yoga I do, or 4 mg Neupro patch (in addition to Azilect and Rytary, including one nighttime dose, and a bunch of vitamins and supplements), but I haven't had problems for about 3 or so years. You mention Sinemet--does your doctor have you on an ER nighttime dosage? Might help. Covers still take some work, but I am managing without husband help.
Def try high dose Vit B 1 my husband had issues moving in bed , getting out to go to the loo, covers feeling too heavy , he rarely needs help from me now , been on Vit B1 about 6 months 😀
Agree with Baileytwo, years ago I tried satin sheet, thinking they would be sexy, but I found the blankets kept slipping off and I would wake up cold during the night. Have not tried them recently or without the top sheet.
Hi Ahopeful. I too have speech problems. I do the Loud exercises along with some from yoga voice exercises which I find more gentle on my larynx. In some people with PD mucus is thicker. I have this problem and have started using Xlear Nasal Spray. I bought it online. It is made from natural ingredients and is non addictive like some sprays. I find my speech is louder after it's use as I am often clearing my throat in the mornings. I hope this helps you.
Good suggestion. I used to have a lot of phlegm in the morning, but in recent months it has not been a problem, not sure why but I’ll take the improvement
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