Diagnosed about 1.5 years ago. Up until a month ago I could get in & out of bed by myself. Then Poof! One month ago I suddenly cannot get in or out of bed by myself. It's like I totally forgot how to do it and so my husband must help me in & out. Really embarrassing to ask someone's help getting you out of bed to use the bathroom! Does anyone know why this would happen over night? Can I "fix" it...husband thinks I need more exercise to get stronger to move into and around inside the bed & spread. I don't think it is exercise deficiency but need your advice/opinion. HELP! I am 62 and feel so lost and overwhelmed.
Trouble getting in and out of bed - Cure Parkinson's
Trouble getting in and out of bed
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Nippermcc
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42 Replies
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Although exercise is very important for PWP, the issue for us is the motor neurons not working as they should rather than strength.
My personal experience is one of suffering motor impairments and then having those impairments reverse and regaining the lost ability. I am a very unusual case but not the only one. I am taking high dose thiamine (vitamin B1) which has helped me. I am also a highly dedicated Qigong practitioner and that has also helped me much - my story here: healthunlocked.com/parkinso...
Others have reported benefit from mannitol and from a version of vitamin B3.
You should study the various interventions reported on this forum and adopt what strikes you as the best for your situation.
Hi what is the version of b3.pls? What improvements did you notice after taking the b1 tablets ? Thanks
Improved intestinal peristalsis within 2 weeks from B1.
B3: nicotinamide riboside
Before PD we performed a great many actions , example putting on pants , walking , getting in and out of bed ,without thinking about it. WE had done these things so many times that the brain and body muscles worked together without much conscious thought on our part.
Now with PD if you are walking down the street you are concentrating on performing every step , because each muscle will not operate without a direct command to do so. You must do only one thing at a time now. If a fire truck goes past you are left standing still with your mouth open. Some actions that you thought very simple are really very complicated. You must relearn how to more slowly think yourself through various tasks, one movement at a time. you will get used to it. You need hand holds on walls. railings, etc. Putting on pants and socks and shoes is my biggest problem . Getting into bed ,I just throw my body and land on the bed , face up. Get a walker with wheels , when you go shopping take it and use it even if you think it not necessary. You must avoid falls at all cost. try it
Check out bed rails on Amazon. I haven't tried them but I've heard from other people that they helped quite a bit. Many of them are quite unnoticeable but would give you something to grab onto.
What medication are you on ? Does it last into the night? You def need to exercise , core strength will help you - Pilates us excellent, my husband who gas PArkinsons struggled getting out of bed I had to help him , he has a strict exercise regimen and very rarely needs help now . He’s 12 years since diagnosis. 😀
some people thing taking medication before bed time is a waste. It is not. It allows movement during sleep and ability when you wake up.
My husband takes 125stelevo before he goes to bed manages 7-8 hours each night , wakes to go to the loo a couple of times a night (but so do I and I don’t have Parkinsons ) is able to get in and out of bed ok. 😀
even better for me when i need to go to the rest room after going to bed (every night for me) i take my meds if it is close to time for them and i wake most time when i am on.
I like your way of thinking, its a pleasure to read your posting. I take c/l 6am,10am,2pm & 6p. I also take thiamine hcl 1 gram at 8am and 4pm, upping my dose to 2 gms 8 & 4. Next time I see my neuro will ask her if she agrees on me taking a 10 or 12 pm dose for the problem of getting our of bed; I have urinary urge incontinence and many times my urine leaks out before I can get our of bed. Also like the idea posted here by a pwp of using bed rail
I have a snoozle a bed rail & a bath stool to help me get in & out of bed. Also to helping to turn over in bed
I love GymBag’s response! You can think about it as losing your automatic pilot- things that used to be automatic you now have to consciously think about and relearn.
You need to use more amplitude and ‘effort’, and learn to take over from your automatic pilot. The best way to learn the levels required to move ‘normally’ is to have some therapy sessions with an OT or physio who specializes in PD. ideally a few in a row as intensity and frequency are important for relearning.
I always recommend people try a program such as LSVT Big OT PD Warrior, or attend a PArkinsons Regeneration workshop. As an OT who runs these kind of programs, and as a daughter of someone with PD, I have seen the amazing results that they can achieve. They use exercise as therapy, and focus on amplitude and higher quality movement- not just strength, balance etc that you might gain from traditional exercise forms.
Good looking luck!
I am certified in Delay the Disease. Look them up online to see if there is a class near you. We teach people the skills to stay independent. Try getting your heart rate up during the day when you are feeling good then practice getting in and out of bed. Be sure to continue strength training and training with specific exercises to help you.
Delay the Disease is our best answer. We've had various classes in Parkinson's in FL, NC but think best results are Delay the Disease at our home base of OH. You can order their exercise book of some of the exercises on-line. A class is even better. Congratulations on your certification!
I can’t manage any more without the use of the bed rail which is just a handle to grab to lever yourself up in order to stand. Also have a Snoozle sheet to make turning in bed possible. Sometimes my lovely husband gives me a push but often he’s asleep when I wake up in the night.
I started many years ago with a simple ski rope pull tied to the bed frame on the other side.... I also have first handedly observed that it's not strength as much as negotiation between my muscles and nerves. The more complicated the movement, the more creative one has to be! I can do everything (most things) I used to, but much sower. Exercises my patience daily for sure!
Must say that it's a pity husbands response sounds more like it's from the angle of not wanting to get up in the night to help rather than being understanding that this sudden change can be very frightening to you. Please don't expect sudden help from just exercise but celebrate each increase in strength as they come and ask your husband for non judgmental help in the meantime.
My answer is more for moving & turning over in bed, but it might also help you. Someone on this site recommended wearing silk or satin pajamas. It works for me.
I heard satin sheets work well too
My dh slipped off the bed when I tried satin sheets, so now I just use the satin pjs and a bed rail, which helps me turn over. Better living through technology!
"Then Poof! One month ago I suddenly cannot get in or out of bed by myself. It's like I totally forgot how to do it"
We have not addrssed this.
Thats the way it happens with me. PD with me does not gradually get worse , in fact some times it gets better . I have good and bad days . Then I have a really bad day that never gets better , a new normal , a new getting used to . Poof as you said
I am taking high dose thiamine hcl (vitamin B1) which has helped me.
tbirchf in reply to
what dosage do you take please? I just ordered some for my husband, sure hope it helps him.
in reply to tbirchf
2 x day (morning 2g and lunch 2g) Solgar Vitamin B1 (as thiamin HCL) 500mg tablet. 4 tablets equal 2g. 100 tablets in the bottle. Rate of usage: 2.5 bottles per month.
tbirchf in reply to
Good that is exactly what I ordered, should be here yet this week.
in reply to tbirchf
Within a week at that dose, no more constipation.
tbirchf in reply to
That will be great. Hoping it will help some other symptoms too.
I am hoping B1 will help him have more energy... he is so tired, so has no ambition to do anything.
in reply to tbirchf
Look for it to stop progression and resolve all symptoms within eight weeks. The exception is tremors. Tremors are resistant and it may take several more months if T-HCL is going to have any affect on tremors.
The doctor recommends the patient to continue with meds, like carbidopa/levodopa.
This is not a cure. You will need to continue this protocol for life.
tbirchf in reply to
That's ok, he does not have tremors, mostly stiffness everywhere and throat troubles like swallowing and speaking. I don't know anything about T-HCP.
Syncletica in reply to
RoyProp, (1) Are you taking the tablets with food? (2) Is it important to take the tablets in the morning? If so, why?
Your progress/success is both inspiring and encouraging.
in reply to Syncletica
Not taking with food. Continue your normal Park meds. Not important to take in the morning.
Syncletica in reply to
Once more, thank you. Wondering also about the spacing--how many hours between doses?
in reply to Syncletica
Doc Costantini says if someone has a sensitivity to thiamine, not to take too close to bedtime. It may keep you awake.
Syncletica in reply to
Thanks again!
Simply 'getting stronger' won't help you get out of bed if your PD brain has forgotten how to do it. But you can try to try and re-learn the skill with a different part of your brain. This is not easy, but well worth doing.
A Neuro-physiotherapist could help, otherwise you + husband need to break the whole task down into a number of single movements. Then concentrate on those movements and practise them repeatedly with a mirror.
Check 'neuro plasticity'.
see <outthinkingparkinsons.com> or see it on YouTube
My husband went to the BIG program for Parkinson's (PT) and among the exercises there is one that helps you get in and out of bed. Now that my husband knows the "trick" with this he has no trouble anymore getting in and out of bed anytime. Have you done the BIG program? It helps in so many ways. It's an intense program - 4X a week for 4 weeks an hour each time. Well worth looking into.
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