Since I've had my DBS 1 1/2 years ago I feel that WHEN I actually sleep and when I need to roll over I find it very very hard to turn over, its like I'm underneath a lead Blanket and that my body can't turn as though it weighs s ton! Also, is it just me, but I also find it really hard to sleep on the side of my transmitted?? Is this normal, my surgeon says it will go away, but when, of course it was placed on my favoured side! HELP!
Does Anyone Else feel Like they Sleep Und... - Cure Parkinson's
Does Anyone Else feel Like they Sleep Under A Lead Blanket???
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Chris0846
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You are not alone. I was diagnosed just over two and a half years ago and this led blanket effect started probably 6 months ago. It is the oddest feeling, like I'm stuck to my mattress. I injured my shoulder recently and that hasn't helped in regards to getting out of the bed and or turning over. The side I can sleep on is dictated by what is hurting more, my right hip or my left shoulder. Hahaha, are we having fun yet?!
You can't imagine the fun I'm having! On sorry I almost forgot, you can! Thanks for your speedy reply!
I had DBS 3 years ago and it's still not comfortable for me to sleep on the side where my transmitter was placed. And that lead blanket and velcro like stuck feeling of being stuck to the mattress-- It comes free of charge with the rest of the PD baggage!
So basically I'm SOL , yeahh!!!!!
LOL-- well that's one way to look at it! Since PD, I've made so many adjustments from the simple way of brushing my teeth (got an electric toothbrush) to the complex (taking time management to a new level with medication routine) it's become second nature!
in reply to Enidah
Hips and shoulder for me. And here I thought it was my new mattress. It's the PD.
The lead blanket experience is PD not from DBS. It was a question the neuro asked me at my first appointment..
Try sleeping au naturale
clothing against sheets increases resistance to being able to move
Everybody should get naked
Hi chris0846 problems with turning over in bed is just part of the crappy P D package I have had great success with wearing Satiin PJ s and using Satin sheets it's not perfect but heaps better than Cotton wish u all the best
Sunnysky
Hi. Like all are saying, not being able to turn over is a PD thing. I was diagnosed 13 yrs ago but just started having that problem about a year agi & a couple of months ago, tried Satin pajamas & they really do work. Be careful if you also use Satin sheets, someone said they slid right out of bed!
Satin or silk. Anything slippery helps.
Oh another joy of PD. Very common. Satin pyjamas and / or sheets usually suggested. Also the NHS ill supply a contraption which passes in between the bed base and mattress and another part sticks up at right angles. This provides something to grab hold of and pull on to obtain a seated position.
Hi Chris. I have not had DBS but all of us, including those with DBS have to keep ourselves fit. If we are not bodily fit our muscles are unable to respond to our needs and the result would be just what you are describing. It is very common for patients to battle to turn over in bed, only because they are not fit enough to do so.
Don't think that because you have Pd that you can't do exercise. You may have balance problems that make you think that you can't do exercise but there are ways and means of dealing with that problem.
Good luck
John
Haven't you heard of SPEED-SLEEP-WALKING? Being asleep is no excuse for not exercising 24/7!
Just joking, John. You are of course correct about the need to be as fit as possible. I figured at this point I know you well enough (virtually speaking) to do some kidding.
Yet again, JPepper views any and every complication that befalls us as we progress through the various stages of PD and its multitude of quirks and peculiarities as an opportunity to preach his fast-walking, fast-talking remedy for all that ails you. When it fails to work for the rest of us as well as it supposedly works for him or, when it fails to 'Reverse Parkinson's Disease' as his ridiculous book promises, it's because we just don't "concentrate" hard enough.
Of course we'll also need to ignore the fact that (as he himself has previously admitted) he has 'Essential Tremor' - a completely different, unrelated disease that progresses at a completely different pace, with a completely different range of symptoms - not Parkinson's Disease. Still, he seems unable to resist the urge to preach to those of us who actually have PD (or to write farcical books with no qualification whatsoever).
It's common knowledge. We ALL know that we need to exercise regularly and stay as active as our diverse situations allow. What we DON'T need is the incessant preaching of a charlatan.
We can only hope that in the not to distant future there will be developed a test that can accurately diagnose Parkinson's disease. If a diagnosis could be made early in this disease then surely ways could be found to slow its progression.
Amen MC!
Thank you again for the factual support. It never helps to blame the victim.
I may be a NEWBIE but I'm not stupid, the way I took his comment was that perhaps I needed to loose some weight, then exercise?? I don't recall submitting a foto!! I have already got JPs number!!
Hey Chris, don't take John's statements personally. Your post is just another way to continue to push his unrealistic position. It is common for patients to have difficulty turning in bed, NOT because the person is unfit, but because the person has PD. John does not have PD. And obviously his understanding of PD and pwp is inaccurate. I view his posts as commercial interruptions to an otherwise good show.
Ii think JP has PD. He has many more symptoms other than essential tremor. Just because one has action tremors as well as resting doesn't mean a PWP doesn't have the dreadful disease. Reading both his own book and the John Doidge? chapter make me think that he has always had PD. But I think that there are many variants within the spectrum.
You're correct the symptoms and progression of PD vary. But there are hallmark signs that the disease presents which are how a diagnosis is made. In addition, the gold standard is a positive response to a levodopa challenge. Finally, and unfortunately, PD is progressive. It is not reversible with today's technology. You can walk to the moon and back, but PD is not going to go away or stop progressing. You may improve your quality of life by maintaining a healthy lifestyle, but if you actually have PD, it's not going to disappear. Sorry if this seems harsh.
The unqualified diagnosis from a gullible reader is worth every bit as much as his medical credentials (zero).
Christy astutely points out the "gold standard" for PD diagnosis: a positive response to the levodopa challenge. I wonder if the fact that JPepper's Essential Tremor (according to JP himself) also failed to respond favorably to levodopa was factored into Jeeves' drive-by diagnosis...
AMEN to that!
The bed grab rail is a big help with this . Especially getting into and out of bed . Very easy to fit
Oh you speak for so many, sadly. Aside from the physical consequences such as back ache and stiffness of being in one position, and the stress of needing the bathroom and never quite knowing if you can make it!, is the mental challenge. I find being unable to move a form of night time paralysis, and very claustrophobic. I feel panicky and trapped. So far a satisfactory solution has evaded me, from a physical stance, although I am budgeting for an electric bed. They don't turn you but they can push you up and I find after that I can turn myself. In the meantime I am concentrating on sorting my 'head space' out and finding ways to 'think' myself out of the unpleasantness.
If I come up with anything more useful I will share.
Hikoi in reply to
C HH
It's awful feeling trapped.
Just my experience before you invest in an expensive bed. I have an electric bed and I like it and the memory foam mattress is very comfortable especially for achy joints I find.
On the minus side some find the mattresses hot, it's ok for me. However I cannot turn nearly as easily on the mattress as on a regular mattress. A friend using a similar mattress is going back to a regular bed because he has the same problem. There is another mattress which will bend so can be used on electric beds. Would be worth checking out.
The other challenge I haven't resolved is having the remote in an accessible place especially when I am lying one way and the remote is on the other side.
I wonder if anyone else has tried electric beds that can comment on their experience.
A friend years ago told me how she tied something ( sheet I think) to the foot of the bed and used it to pull herself around the bed.
You can thread a long strap crosswise between the mattress and box spring and use it do help turn yourself over. We used this with my mother (she had mobility problems but did not have PD). I think we used a gait belt and stitched the ends into loops for her to grasp. I would assume that running a strap lengthwise would work to pull oneself up into a sitting position. She also always wore silky pjs -- I find them unbearably hot!
I have an electric bed. My mattress only has an inch or two of memory foam. I think it's a number 3 (maybe 2 can't remember). It doesn't help me turn over and I find it just doesn't go up the extra inch I need it to to get out of bed. I have the same problem at the dentist, they have to help me up that extra wee bit. I don't have much strength in my arms to pull myself up.
My dressing table and drawers are close to the side of my bed, good job I'm not too big as there isn't much space between, so I hook the controls into the top drawer which works quite well, but again, they are only on one side of the bed so still need to turn over sometimes.
I just wonder now whether the controls would fit onto your headboard. OK you would need to remove it to operate it but it might be more in reach,
Anne
Thankyou for that but I don't have a head board. I think I may have a solution though. There are turning aides made of metal tubing. I think I will get one and somehow attach to that.
I'm rich. I have someone to turn me over.
That sounds like the perfect solution for many 
I did not realise with DBS you had to have the box fitted on the side. That must be such a nuisance.
Thanks everyone for your responses, they certainly help and its nice to know that I am not alone!!! I will however work on that being rich issue😁it makes perfect sense to me!!
My father did not have DBS, but had the difficulty described here. After about 10 years of PD, plus a fractured hip, he had difficulty moving up in the bed, once it was lowered.
His solution was installing a large hook on the wall above the bed and using a rope to help him pull up. I was concerned about possible damage to his hands, so we added a round rubber link from a dog toy that he could grasp. It worked wonderfully for him. He added a similar rope/link to his bedside grab bar to help him pull up from the side of the bed in the morning.
One thing we learned is to improvise. The addition of what was actually a dog toy to make the pull-rope work became a source of humor. Dad would occasionally bark when using it. The 'invincible chains' dog toy was the only thing we could find that suited the need. It was sturdy, flexible and kind to one's hands.
Christin, that's pure genius! And what a thoughtful daughter.
Both my parents came up with their own little ways to do daily things. I was fortunate to be able to help them accomplish their goal of living at home, as independently as possible.
try satin sheets and a light tog quilt. We have 4.5 all year round
Lead blanket is a good discription for how it feels to move around in bed. Six year PD with difficulty in bed for last two yrs. 78 yrs old.
I find that if I do some very gentle stretching and massage just before I go to bed and make sure I'm breathing deeply as I do it, then the lead blanket isn't quite so heavy during the night.
I am going to try the hook on the wall above my head with the rope. Satin sheets and/or satin clothing does not really work for me because I have the head of my bed about 12 inches higher (stomach acid reflux ). I shoot right out the bottom.
Try my suggestion, there is more to the problem than drag and resistance.
I may be wrong but jumping on John took up about half the post. You are not going to change his mind . I believe he is on a mission ( kinda like the blues brothers ) more things more important . I suggest that you let the old guy post and don't read it if you disagree . I note that he has stopped saying we should drop the meds so with out that I see little harm done. But it is like this in every forum from boat building to gardening people disagree and that is healthy. I said before, John , you, me , anyone could be wrong but unless it is hurtful I will defend his right to say it.
PS I received a few personal mailings on the subject of John Pepper. People do not agree with my position. Well we can't possibly agree on everything. Sorry, but all he did this time was post that exercise was important and he was jumped on. It is possible that he has some followers that are ready to object and the response had been prepared, any comment he makes will probably generate objection. That is close to bullying.
I find that it helps if I can slide my legs off the bed so my feet are on the floor. From that position it is easier to roll over and pull my legs back on the bed.
I loved reading this thread. It felt like I was sitting around the Thanksgiving dinner table with a big family and everybody was talking, hashing things out... funny, informative, divisive...but mostly, very there for each other. There were so many good ideas I need to reread them.
Nice description. I feel like I have been allowed into a classroom, to watch and learn.
I was a daily caregiver (while working FT) to my father (PD and MG) and mother (severe RA). They taught me a great deal just by being around them. It was worth every minute.
Each of you are teachers, whether you realize it or not. Those who are willing to enter your classroom will be the better for it.
I am a Caregiver for My Husband with PD for about 10 Years now & lately he calls me a few times a night, to help get him out of Bed. His legs get so stiff & locked together, I am hurting myself trying to get him, to sit up, so he can get up, to use the bathroom, during the night. I bought a special sheet on a Health Site to help slide him out of bed, but I am still looking for a better way, to get him up. He'll end up sitting in the Lift Chair about 5am until Breakfast, just too hard to get back in & out of bed. Really Enjoy Reading all the comments & helpful solutions. Just ordered something else online to help move his legs, hope it helps, my arms & shoulders are so sore, trying to move him. Not sure if I could put a hook above his bed, but will ask his friend if it's possible. Already have bed rails, belts & therapeutic type rope ladders to help him get up. So Glad to read about the Lead Blanket & to explain it to him, he's not alone with this Problem. My Hubby doesn't use the Computer & I have to do all the research to help Us !! He is almost 70 & has really slowed down this year, as the disease has progressed. He's on Meds & we have an Appointment with a New Neurologist next Month, hopefully he can help us !! Only My Daughter & I Care for my Husband. He tries to exercise during the day & walk with his walker, it does help him, to keep moving !! Breaks Our Heart to see this Once Active Person, (a Mail Carrier for 35 Years) Suffer so much just to Enjoy Each Day !! Hugs & Prayers for All !
I am so sorry that you and your husband are experiencing so many problems. There but for the grace of God we all of us go!! Just be very aware that you are not doing yourself a favour , or him if you HURT yourself! Trust me when I tell you that I speak from experience, I worked for over 25 years as a HCA in nursing homes in ONT and have seen way too much! Please take care of yourself, get help not an injury, as you won't be helping him if you get hurt!! Please keep me informed as maybe I can be of help!
GODSPEED!!
Thank You So Much for Your Kind Words ! My Daughter & I try our best to help Him & not hurt Ourselves. So Thankful for Her Help ! Some days are Better than Others, try to Be Thankful for the Good Days !! Lots of Nurses in Our Family too with Advice !! I Worked in a Home Health Agency for Years too & saw the many Injuries of Caregivers ! Checking Out a lot of Different types of Care for the Future, for my Husband !! My Uncle took care of My Aunt for Years, she was Bedridden & He Passed away before Her, just never know !! We have Two More Angels in Heaven ! Thanks Again !
I feel like gravity is pulling me into the matress but I wouldn't say it was like a blanket on top pulling me down. Could that be the same feeling?
Google snooze slide sheet I have just ordered one
Thanks, I'll look into it. However I have had success with sleeping au natural!!
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