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My husband has Lewy Bodies with Parkinson.
Can Mayo Clinic give us more assistance than the doctors here, in the Palm Springs area? The information about this disease of Lewy Body has to better & more experienced than what he receives at Desert Oasis Medical. He was diagnosed March 2018.
My husband, "Semaja" has been spiraling downward with his movements and walking. He's in pain as soon as he stands-up and tries to move his legs/feet.
No one has mentioned or discussed his fall in 1991…. might have led to this disease.
It's only recently that one hears about this disease. People didn't discuss @Robin Williams death was a combination of Lewy Bodies and Parkinson. Now, @ted Turner announced that he has them, also.
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Hi, @arlenephoto. Welcome to Mayo Clinic Connect. I'm really sorry to hear that your husband has been spiraling downward with his movements and walking, as well as his pain.
Mayo Clinic does have expertise in Lewy Body Dementia. Here is some information about the disease, treatments and care at Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/lewy-body-dementia/symptoms-causes/syc-20352025.
You may also be interested in this Mayo Clinic Q&A on Lewy Body Dementia, https://newsnetwork.mayoclinic.org/discussion/new-international-guidelines-issued-on-dementia-with-lewy-bodies/.
If you'd be interested in having your husband seen at Mayo Clinic, you may request an appointment here: mayocl.in/1mtmR63.
Has anything helped so far with his pain, @arlenephoto?
Thank you Teresa, I think at this time I need to learn more about his Parkinsons. His movement is my big concern at this time. I have been taking him to the VA clinic at this time. They seem to know so much more than the local doctors. The medication he is taking now has seemed to be helping with his Tremors and Twitching. My biggest concern, at this time, is his movement walking. It's so difficult standing and walking. Funny thing is,,, he does more for himself when I'm not around the house.
I always leave Healthy Meals and lots of food in the Refrig! That way I know, when he's hungry he gets up and EATS!
I have recently been taking him to the PT facility.
I found out this week that my husband was diagnose with Parkinson-Lewy body dementia. We have only been married for a few years, but been together for 4 years. there is a huge age gap between us but we didn't care. He is the love of my life. according to the phases. he is in phase two. I am a nurse but it is so different taking care of patients then you're husband. I've been reading everyone's post and getting ideas. I welcome any suggesting's.
Hello @scampbell0163 and welcome to Mayo Connect,
I am so sorry to hear of your husband's recent diagnosis of Lewy Body Dementia (LBD). As you probably know, LBD can often be very difficult to diagnose as it has many of the same symptoms of Alzheimer's and other types of dementia. You were fortunate to get a correct diagnosis in phase 2 of the disease as the treatments can vary widely.
Mayo Clinic does have expertise in Lewy Body Dementia. Here is some information about the disease, treatments, and care at Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/lewy-body-dementia/symptoms-causes/syc-20352025.
I would also like to invite you to our Caregivers' Group that is mentored by Scott, @IndianaScott. Here is a link to a discussion on LBD that you might find helpful, https://connect.mayoclinic.org/group/caregivers-dementia/
You said you are looking for suggestions. Could you share what type of suggestions you are looking for? For example, are his problems now mainly gait/falling, speech or swallowing, etc.? Has physical, occupational, or speech therapy been used?
Hello @scampbell0163 .
As it's been a couple of weeks since you posted about your husband's diagnosis of LBD I was just wondering how you were both adjusting. Do you think you are getting the information and support you need as a caregiver? How is your husband managing?
I just wanted to check in with you to see how you and your husband are doing. I would enjoy hearing from you when you have time.
Try Lida.org. Lewy body dementia Assoc It’s a wonderful resource. I hope it helps
To all in this discussion group, here is a link to a recorded conference held by Mayo Clinic on Lewy Body Dementia.
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