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My husband with Lewy body dementia has developed a decided lean to the left. He even manages to do this in bed.


I wanted to get him bolsters to put beside him on the left side. Has anyone run into this problem, and if you did, how did you solve it?

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It truly is hard to know what to do. To me, meds are important, because, my LO would be extremely agitated, anxious and depressed if she were not taking medication. We tried to discontinue once and she became very miserable. Crying, upset, etc. She needs these meds. But, the one that was causing her to lean, wasn't missed when it was stopped. To me, you have to weigh what the benefits vs. the risks.

I do know that some people will start to lean and that it's due to a medical condition that is not related to medication. Most people that I see who have advanced dementia do this. I would discuss with his doctor and get consult with therapist to get a proper chair. When, my LO went on Hospice, they got her a great tilt back wheelchair, so she can rest by laying back when she tires. Because of the way the body leans to the side, I'm not sure how to remedy that without a professional's help.
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Reply to Sunnygirl1
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My mom has been leaning for a few months now and last week when I saw her it was quite noticeable. (She is almost 94, has dementia. Never was diagnosed as Lewy or Alzheimers but it's one of them.)

The nurse that sees her weekly said that this is part of the disease progression, that she is losing the ability to hold herself up right because the muscles in the trunk are weak. It didn't seem that there was anything to be done other than accept that this is the next step. Sigh.
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Reply to Rabanette
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Hi jmacleve
i also object to people preaching about medication! If it were not for Ian’s PD meds he would be rigid and unable to move. I’m aware as is our consultant that medication in Ian’s case is not the answer but removing the Parkinsons meds would do more harm than good. What people need to understand before opening their mouths is that every single person with LB is an individual. As such they may have a few similar symptoms but other than that they will be completely unique. I’m sure you will be like me and be fiercely protective about your loved one and are aware of every drug and side effect their is and don’t take kindly to people making the assumption that you haven’t thought about it yourself! Take care
Heather
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Reply to Hetti71doll
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Best to get an evaluation from his neurologist.
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Reply to Llamalover47
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My husband has LBD, diagnosed almost three years ago. For a good while he has been severely bent over when standing/walking and lists to the right (right shoulder about 2"-3" lower than left shoulder). He just finished 6 weeks of PT & OT (twice a week for each) which worked on balance and core strengthening and improved significantly. I highly recommend getting PT for balance and safety issues. When I see him leaning over to the right on the sofa (often) or leaning forward when he is walking, I remind him to straighten up. I plan to continue working with him on some of the PT & OT exercises he has been doing when the therapists were here and I've set up a schedule to try to keep us on track. I know that will continue to help if I can just keep up with it.
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Reply to jmbbclark
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I don't know a whole lot about Lewy's other than that my bro is diagnosed with probably early Lewy's sx. He has balance problems and problems with dizziness occ. He is really good at explaining that for him, the world is tipping, not him. He also has the added thing that a brain tumor, benign and of decades standing is near auditory center and pressing on medulla of the brain, responsible for his balance. So who knows what causes it, but it, not his mental acuity, is what has put in in Assisted living. He WAS helped and helped a LOT by phyiscal therapy over a four week period in rehab. It was intensive, hours a day, and involved a lot of balance exercises for him to do. It improved his balance by a LOT. However, once it was over he has more or less just not continued the exercise. Just gets stubborn when I try to get him to, and says he is walking, which he is. The walking doesn't do what the balance exercises do as they actually TRAIN the brain. Google balance exercises for the elderly. They are all there. Like putting one foot in the front of the other and standing to a count of 50. The feet wobbling actually TRAIN the brain. Good luck. A physical therapy session, ordered by the doc is my order of the day. Worth a try certainly.
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AlvaDeer Jun 7, 2019
ALSO
If he is on medications, be certain to explore their side effects. They often cause more trouble than they cure.
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The boosters sound like a good idea. I would also consider rolling some towels and place them under the the mattress to tilt the patient in a better position. I would stay away from medication because I am sure he already taking enough pills. BTW: Pills 💊 do not solve everything.
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Reply to Ricky6
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Once you have ruled out medication and orthopedic problems, you have to know that the patient probably has double vision but isn't aware enough to complain about it. This will happen to most patients with dementia and all neuro-motor degenerative disorders as they lose fine motor control. Most eye doctors don't know how to treat this other than an eye patch. If you need a referral go to https://noravisionrehab.org to look up someone near you. If you can't fine someone message me and I will help you with a referral or information for your eye doctor.
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Reply to DrBenshir
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Hi My husband also has Parkinson’s with levy body dementia and he leans to right side! If you have a Physiotherapist attached to your Gp practice I would phone her for advice. If not get gp to refer ASAP to Physio with a specialty in movement disorder for help. They are usually based within the medicine for the elderly team. My husbands spine curved and the base of his spine fractured. It healed but he was in such severe pain for months. Even now he has constant but manageable pain. My biggest problem was when in the car as Ian would tip towards me when I was driving! That happens less now thank goodness! Hope this is helpful.
Heather x
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Reply to Hetti71doll
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I am wondering what medication was helpful. My husband has lewy body and nothing seems to help . Thanks!
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AlvaDeer Jun 7, 2019
If you look up ANY or ALL of the medications given for Parkinsons and Lewy's and other dementias none are proven to work. More than that, look at the side effects. One medication that may help with hallucinations will affect balance badly. One that will help balance gives halluncinations. It is my experience both as a nurse and as the sister of a man with Lewy's that all meds we currently have do more harm than good, and are cash cows for the docs and the pharmacies. I wish there was a magic pill. I think that there is not. Unless someone has found it and can give me the info on it. Be SURE to read ALL the side effects on any meds suggested before agreeing to them.
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My mom's inability to sit upright was one of the factors that helped me decide to get her a good, supportive, customized tilt in place wheelchair, it was a comfortable place to sit when she was still somewhat mobile and became the place where she spent her days when she could no longer walk - I highly recommend that you explore that option. Yes, they are expensive but there can be programs available that help with the cost.
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Warriorforthem Jun 7, 2019
I was thinking the same while reading the replies here. I had a client with the same as your husband. I have had Hospice supply this chair for free. Of course, give it back when it's no longer needed. But this type of chair offers sooooo much help for the patient and caregiver. Most of all comfort for the client. I did fold a comforter in 1/3rd to line the back and sides as it is rather narrow and that helped to cushion the arm rests.
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Thanks for your input. Unfortunately we're as sure as we can be that it's DWLB ... given that there's no perfect diagnostic tool. He has problems with remembering things and still, despite a new med which has been very helpful, hallucinates and gets confused.

It's really great that you and your loved one were able to find an answer and that it wasn't LB. Best wishes!
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gladimhere Jun 7, 2019
Is it possible the new medication is causing this?
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I hope that you can get some suggestions, but, I wanted to share with you something that happened with my LO, so you can at least check it out. I am familiar with the Lewy Lean and thought that is what my LO had about a year ago. She suddenly started leaning to the left and I felt so bad, because, I knew that her neck must hurt like that. I got her neck brace and had occupational therapist come to get a wheelchair that would help support her, but, before any of that could be done, her doctor adjusted her medications. It was UNREAL! After about a week, she stopped leaning and her head went up straight again. It was truly due to a medication issue. She hasn't had it since then. So, I would discuss it with his doctor, just to rule out medications. I've read online where that can happen quite a bit of the time.
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Reply to Sunnygirl1
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jmacleve Jun 7, 2019
As I mentioned to someone above, my husband is bipolar. He also has an enlarged prostate and issues with his esophagus, along with chronic ideopathic constipation. He has been on the meds for these for many years. The new med he is taking was prescribed long after the hallucinations, imbalance and lean began.
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