Lewy lean support; any suggestions?

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.

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.

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.

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!

I am wondering what medication was helpful. My husband has lewy body and nothing seems to help . Thanks!

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

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.

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.

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.

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