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My wife Mary has Parkinson’s. I appreciate any help you give me. She likes to spend many hours in her chair, at her desk. She draws, watches youtube, reads newspapers.



But her body slumps very heavily to the right. We tried many solutions. So far, zero success.



She’s almost fallen from her chair many times. Things we tried so far: lean her chair close to a wall (but her body still uncomfortably slants to the right); putting a belt around her and the chair, which she can unfasten herself (kind of works); placing a vertical board along her chair on the right, to block her from going to the right (doesn’t work, because her right arm gets blocked that way, and she’d can’t use her arm/elbow).



Tomorrow, the carpenter comes to the house to look for more ideas. The aides also tried ideas. As you can imagine it’s very tiring for Mary to hang onto the desk with all her might so she doesn’t fall towards the right. She uses one hand to hold the desk or armrest. She can never have two hands free.



Thanks for any, all ideas!

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Thanks Bronish, and everyone, for your help!

I hope you all had a great Easter!
Update on leaning situation:

The carpenter tried many things today: gave it his all.

But...not easy.

Conclusion:
--Other people might have an easier time solving this issue, so please don't take my experience as something you must follow.
--My wife really wants to stay seated at her desk.
--For this reason, all solutions are being geared towards that.
--In the future, she will sit in her lift recliner, away from the desk.
--But for now, since she'll stay at her desk: the carpenter tried again shaping a vertical wooden board, to be attached to the chair, with a hole below for her arm to move freely; it did keep my wife upright, but it was very uncomfortable.
--The brace idea was tried again; but uncomfortable.

Final conclusion:
--We'll continue using the current chair. We've added comfortable cushions. She feels good. She still leans, but she prefers this, to any other thing we tried.
--And as said, in the future, when she can't sit at her desk anymore, she'll move to the recliner.

So it ends well. (Thanks also to people who suggested special chairs, special cushions; we'll continue trying that out too!)

David
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AlvaDeer Apr 2022
Thanks for this update,David. Glad you "tried everything"and at least for now this is working. Hope it continues to do so.
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HI David!
I'm just an ex-caregiver, but I come to this forum regularly to learn from all you wonderful people out there.
I just wanted to tell you I laughed suddenly when you said this could be a joke, about the carpenter, seamstress and PT!
Someone needs to finish this great funny potential joke here!
Happy Easter/Resurrection Day tomorrow to you, Mary and everyone else here. God be with you both! And, to all, Shalom! 💜🕊💜
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Ask her primary care doctor for an OT eval. This is part of their scope of practice to assist and help solve everyday problems. Its certainly worth a try and should be covered by her insurance.

Good Luck!
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david1950 Apr 2022
Thanks! We tried all that. As Lea pointed out below, this problem isn’t easy to fix.

But the carpenter again will try a vertical board next week. Have a great Easter!
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Try these suggestions:
1. Put a thin vest … like a safety vest on her with opening in the back, and use a gait belt looped thru the back of the vest secured to the back of the chair so she won’t lean. Almost like locking a crossbody seatbelt behind her.

2. lateral body support for wheelchair can probably work on a

https://www.vitalitymedical.com/skil-care-706055-adjustable-lateral-body-support.html
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david1950 Apr 2022
Thanks!!!

Idea 1: won’t work, because she must be able to open it herself. She’s very independent, can walk, go to the bathroom alone. But when she sits, her body leans to the right. We tried to create a belt (to be opened by her in the front), but it was uncomfortable.

Idea 2: great website! We’ll definitely try the lateral support.

Have an awesome day!
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Update.
All of you - thank you for your help. We continue to try different solutions.

Latest solution:

Negative (what didn't work):
-Belt/velcro: uncomfortable, feels like a straightjacket
-Back brace: can be painful after some hours

Positive (what might work):
-The carpenter today built a vertical board, to be placed on the right side of the chair, with a hole/empty space in the bottom, so that my wife can easily move her right elbow/arm. The top part of the board will have en elongated horizontal thing that sticks out, so that my wife can lean her head against this, and in this way, her body doesn't lean to the right, while at the same time she can freely use her right arm. He returns next week to experiment some more.
-Some of you mentioned other types of chairs, cushions; we're looking into it.

Happy Easter everyone!
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Llamalover47 Apr 2022
david1950: Thank you for your update.
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Boy, I'm having a hard time participating in discussions here -- don't even know how to send a private message. Anyway, to follow up on my reply: A lot of us have actual spirit levels. They have the liquid bubble in the middle. However, there are lots of free apps for phones and tablets that provide a visual spirit level. Since Sacks theorized that awareness of the slumping was key for the Parkinson's patient, I wonder if your wife might be able to use the app to set herself up straight. Sacks videotaped Parkinson's patients to show them how they were off balance with some success.
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david1950 Apr 2022
“awareness of the slumping was key for the Parkinson's patient”

Thanks! My wife is very aware she’s leaning. In her case, she must have weaker muscles on one side. She does PT. But the leaning will continue.
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Ask her doctor for referrals to physical therapy and occupational therapy. The therapists will do evaluations of her abilities and needs. They can make recommendations of chairs and medical equipment aids that can help with her issues. They can also make recommendations of medical aids to help in the future as her abilities decline. Physical therapy can also recommend exercises and treatments to help strengthen her core muscles and stretch those that cause her to lean.
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david1950 Apr 2022
Thanks! We have done all that. Solving the leaning problem (while in a chair) is really hard. As Lea wrote below, it seems no one has come up with a good solution for this, all these years, even though many older people lean.

We have a carpenter, PT, seamstress...etc. They're all working on it, as we speak. We recently tried the belt idea (velcro, etc.); it was uncomfortable. Leaning is also uncomfortable (it's extreme, we're not talking about a few degrees leaning), and yet my wife prefers to lean than to have a belt.

I'll let you know how it goes. We're trying various solutions mentioned here. And others.
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With Parkinson's patients, I believe it is called 'listing'. My husband had it and the physical therapist a Veteran's Hospital helped him partially overcome it - so it was not so severe.

Perhaps a physical / occupational therapist that specializes in Parkinson's or neurological issues could be of assistance.

Wishing you both the best.
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david1950 Apr 2022
Thanks! My wife has a PT.
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In the nursing home we used a pillow folded in half under pt's forearm, and between thigh & arm rest of chair. On the side they lean towards. So it forms a shelf they can rest their arm on. Put the ends of pillow down towards the seat. And push it in between her outside of her thigh and chair arm. Be careful bc skin can sheer, so no ramming it in there with your hand. We used our hand outstretched fingers together and tucked it in. Should be quite comfortable. It works. Good luck.
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david1950 Apr 2022
Thanks! I’ll send you a private message please, to ask for clarification.
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david1950: Perhaps your wife can wear some type of back brace.
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Have you ever heard of Moonpods? They are an updated version of bean bag furniture, but hear me out....

They call Moonpods (and Yogibos, another brand of the same thing) "anti-gravity" since the new style beads conform to your body as you kind of sink in.

I bought a Moonpod crescent pillow. It's big, and shaped like a crescent of course. I bought it to see if it'd help with pain in hips and spine in bed.

1) In bed, it make me feel like I was floating, and with far less pain.
2) I couldn't sit anymore on the couch or loveseat as it was too deep and I also needed arm support. When I lay the Moonpod crescent on the furniture with the closed end against the back of the furniture, it shortens the depth and allows my arms to be supported (by the crescent's arms).

The beads allow you to push into them shift a position, like to lower your arm or elbow (or head)--you've noted that other things you've tried prevents her from moving her arm.

Since you have a brainstorming carpenter on your team, maybe you two can peek at Moonpods (or Yogibos) online to see if one of their styles could be worked with for her chair(s). (They don't just sell crescent-shaped pods.)
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david1950 Apr 2022
Thanks! I’ll send you a private message please, to ask for clarification.
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I don't know much about Parkinson's but coincidentally, I was re-reading "The Last Interview of Oliver Sacks" today and in a conversation with Charlie Rose, I think, he discussed a patient with this exact problem. The patient was a carpenter and a good problem solver. He asked Sacks if a spirit level could be rigged up for him - a tool evidently used in carpentry. According to Sacks, it worked for the patient, although I'm not sure of specifics. They postulated that the part of the brain which controls balance perception was damaged frequently in PD patients. I'll bet there is some information somewhere on the Internet about an adaptive device.

By the way, Oliver Sacks was a very famous neurologist and a wonderful writer.
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david1950 Apr 2022
Hi! Thanks! Can you please show me a link I can read about his potential solution?
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Are there any back or torso braces that are used by physically disabled that would work for your wife? Some sort of "body brace" that would keep her more vertical.
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david1950 Apr 2022
Thank you! Someone else mentioned this too. Kind of like a corset. Yesterday, the PT said this might be painful, uncomfortable.

But you're right, maybe we should try!
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Does she have a good sturdy chair with arms that is protective? That should be the first step. Have you tried propping her up with bolsters and stiff cushions on the side that she leans to?
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david1950 Apr 2022
Thanks for trying to help! It's actually very difficult to solve this problem.

Yes, we tried all that:
"sturdy chair with arms that is protective"
"propping her up with bolsters and stiff cushions on the side that she leans to"

Every solution creates other problems. Examples:
Positive = the carpenter came and is now building a vertical board (with soft cushion on the side she leans on)....Negative = my wife's right elbow/arm isn't free then. So the carpenter is making a hole in that part of the board. But if the hole is too big, it doesn't prevent my wife from leaning. She's not sitting with her back to the chair. She has to lean forwards sometimes to use the desk. And then she leans to the right.

Positive = seamstress will try to create a special belt/velcro. We tried with a belt, just to experiment...Negative = My wife feels like it's a straight-jacket, uncomfortable.

Positive = we have a recliner with a little swivel table...Negative = my wife prefers to sit at the desk.

We continue to experiment. I will update if we find solutions.

The carpenter, seamstress, still thinking.
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Update:

The carpenter, seamstress and PT came.

Many ideas are being tried out; drawings. I’ll let you know. This will take some days.

THANK YOU.
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david1950 Apr 2022
This is a very serious topic, but I had to smile: it looks like the beginning of a joke.

A carpenter, seamstress and PT walked into a bar…
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Sounds like you are getting some good suggestions. The only thing I can see is a chair with wings that extend down the sides. Seems to be a common problem. I looked at chairs they claim are for those suffering from Parkinsons but I see nothing where the tilting is being taken in consideration.

I did want to comment on walkers. A neighbor's wife suffered from Parkinsons. He told me when Parkinsons people fall they fall backward not forward. His wife had a walker designed to help with this problem. Had something to do with the way it was weighted in the front. Just giving u a heads up if you weren't aware of this.
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david1950 Apr 2022
Thanks for your kindness. Indeed, when my wife fell, she always fell backwards.

Poor her.
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If your wife is willing to give a try to doing her activities while in her lift chair, what I was referencing earlier is not the smaller swing out table on the chair but a larger one on wheels, of the type they use in hospitals. The work surfaces on some of these tables is generous, e.g., 15X30. There are a lot on amazon and elsewhere, including ones that are designed to work with recliners. We had a plain vanilla one, and then tried a more expensive one that supposedly works with a lift chair. However, my husband forgot to swing the table away when he lifted the chair so ended up busting the table top within a couple of days! the key word to use when searching is "overbed table" or sometimes "laptop table"
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david1950 Apr 2022
Thanks for everyone's kindness!

Yes, I know about such tables. We have several types of tables at home (the ones you mention, and the one specifically for the lift recliner). My wife wants to stay specifically at this desk. But we'll keep the alternative tables, other options, because they can be very useful in the future.
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Thanks a lot, to all of you! Very kind, very useful.

The carpenter comes today. But we need some days to try things out. I’ll let you know how it works out. Our hope is that the velcro/belt idea works (the carpenter had suggested this right away). And I see many of you suggesting this. THANK YOU.
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David I looked at your link (about the longest one I have ever seen). The belts (particularly the $19.99 one) look good to attach to Mary (strongly and with comfort), but they aren’t any good to attach Mary to the chair to anchor the leaning problem. Perhaps you can attach a chair strap to one of these?

Does Mary know anyone who is sewing crafty? It’s the sort of thing that some sewing buddies would love to help with, including Barb's sewing suggestion.

PS you should be able to take the little table off the recliner, so that it will go up to the desk.
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david1950 Apr 2022
Thanks! Indeed, we’ll be trying the sewing option.
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David, I googled "velcro vest".

There seemed to be a lot of hits for restraint kinds of things, which you can use at home.

You could also try buying a couple of yards of neoprene and some heavy duty velcro. This could be fashioned into a front opening/closing vest that could go around both the chair and your wife.
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david1950 Apr 2022
“You could also try buying a couple of yards of neoprene and some heavy duty velcro.”

Yes, this is our plan, together with other plans.

Thanks a lot!
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I checked Barb’s very helpful links. The chair looks great, but I have doubts about the vest. I was thinking about an easy experiment you could make (possibly with the help of someone who can sew or even staple). Get two of the common stiff double-ended oven mitts, stitch them together so you have one long one, and then stitch velcro to the ends. The idea is to make a long wide band going behind the chair and crossing at Mary’s front to hold her to the chair. She can rip the velcro to get out, and perhaps hang the device on the back of the chair when she’s not using it.

More ideas can perhaps add even more options!
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david1950 Apr 2022
“The idea is to make a long wide band going behind the chair”

Thanks yes! This is exactly what the carpenter will try - and other solutions.
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https://www.seatingseniors.com/pages/parkinsons-and-mealtimes

This is a chair that swivels, rolls and can be locked in place. It's heavier, so may not tip as easily.

It seems like bracing your wife to the chair (perhaps with a velcro vest arrangement?) might be worth a try.

Maybe something like this:

https://www.vitalitymedical.com/posey-torso-support.html
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david1950 Apr 2022
Amazing, thanks - I just saw the chair you suggest. I didn’t know that exists. Looks really great!

Your other idea:
velcro vest.
We thought of that - do you have a link please? We don’t know where to buy.

Thanks!
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I think a heavy chair will be essential, or Mary’s weight will pull the chair over. It can be wheeled, to make it easy to pull up to the desk. Perhaps you could then think about attaching Mary to the chair. I often wear a brace (for scoliosis), which straps very tightly around my rib cage. You can get them on Ebay, about $30 from Latvia. I think something like it would be strong enough to attach to the chair, with a buckle at the front that Mary could do or undo herself.

Another option might be to attach the heavy chair to the desk, so the attachment anchors it rather than Mary holding on. The chair would then need to swivel so she can seat herself. The recliner sounds like a good start.

My DH is an engineer who at one time in his career worked making customised devices like this for people with disabilities. Many places have similar businesses or charities, often with semi-volunteer engineers and tradesman. I am quite sure that my DH could do this, or advise, but it would be a better idea to search for an agency like this that you could access in the USA. I have a sister (also Mary) in a wheelchair, and she visits our local ‘Independent Living Centre’ when she needs equipment advice like this.

If you wish, post or message with how you get on, and I’ll ask DH for ideas. Yours, Margaret
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david1950 Apr 2022
Thanks!!
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I'm interested i this discussion becasue my husband with Parkinsons also leans, in his case to the left. This is the side that is most affected by his Parkinsons. His lean isn't too bad, and he's almost always in his lift recliner which can't tip over. But I can see it would be more of a problem if he were regularly sitting at a table or desk. If your wife would use a heavy recliner to sit in, you could get a table (like a hospital table) which could go across in front of her and she could have her computer on there, draw, read the paper, etc.; and you could more easily put wedges or pillows next to her to prop her up on this kind of chair.
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david1950 Apr 2022
Thanks! Yes the recliner has a swivel table.

But, my wife wants to sit at the desk. The swivel table is small. The desk is large.

I’ll write whatever solutions we come up with.
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Ask about a tilt in space wheelchair with lateral supports as well as a headrest and ROHO seat cushion. If a table (like one of these)

https://www.amazon.com/overbed-tilt-table/s?k=overbed+tilt+table

is placed over the chair while it is slightly tilted back I think she should be able to use her hands to manipulate things on the table top. Unless she is leaning due to muscle spasms being slightly reclined would tend to shift her centre of gravity backward rather than sideways, the lateral supports and perhaps a 5 point harness should help as well.can
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Parkinson's may start of one side and then move to the other side too. However, symptoms might be more prominent on una side. Nothing can be done medically to the patient about that. It's something she has to learn to live with. Only solution is to build a specially designed chair for her. I think you're already doing that.
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david1950 Apr 2022
We’re trying to construct the best chair for her. There are things you can do to make the chair more comfortable - and to try to avoid falls from the chair. Tomorrow hopefully we find more ideas.
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I would consider a wheel chair simply because of it's sides. Only problem is that many are not as tall at the seat as other chairs. Then a sort feather filled pillow on the right side, sometimes best placed under right armpit. You really can't afford the falls as eventually you will be dealing with broken bones and all of the outcomes from that. I would stop by a Physical Therapy department and discuss with them as well. You might ask your doctor for a one time referral for an hour to discuss with them this and any other problems. Good luck and hope you will update if you find something that works well for you, as that will be a help to others.
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david1950 Apr 2022
Hi!

We asked many PT. They don’t know. They tried. Many ideas were tried.

Neurologist also didn’t have an answer.

Yes right, we want to avoid falls.

We tried the wheelchair. You’re right, it’s lower than a normal chair. We put a cushion. Mary tilted heavily to the right. The tilting is extreme. A pillow on the right (we tried). She tilts over.

We need a strong board (not pillow). But with the vertical board/wedge, she can’t freely move her right arm.

Thanks!
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There are wedges you can get that will prop her in the right direction.
My Husband had a Broda Chair and that had "wings" on the side that made it easier to put a wedge where it needed to be.
The other thing you can try is reclining the chair a bit. (If it is a wheelchair that reclines)
Also this in your house you can do what you need to do that means if you would like to use a belt or other "restraint" that will keep her upright you can do so.
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lealonnie1 Apr 2022
The reclining wheelchair never helped mom with her slumping over. Neither did any of the wedge pillows that were brought to her. I guess it depends on how FAR they slump over?
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Both of my parents did this exact thing (neither one had Parkinsons) and no solution was found for either one of them. An oblong pillow was stuffed under mom's arm while in her wheelchair and that provided a TINY bit of help, but not much. Her doctors, physical therapist, occupational therapist & finally her hospice nurse never were able to find one single solution to the slumping over problem she suffered from. You'd really think, in this day and age, SOMETHING would be found to alleviate this problem that many seem to suffer from, huh?

I'm sorry Mary is going through such a thing and I hope your carpenter comes up with an answer. If so, please come back & share it with us here on AgingCare. Good luck!
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david1950 Apr 2022
I appreciate so much your answer! Even though no solution, I see you also dealt with this problem! I’m sorry both your parents had this problem as well. Actually, I’ve never heard of anyone else slumping side-ways like my wife, until you replied.

I’ll definitely post any solution we find.

David
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