777 wrote:Thank you, NF52 and Samantha!
...A short time later, I talked to my doctor and told him about my e4/e2 status....Short version: I may have Dementia with Lewy Bodies. Can I find help here?
...The neurologist tried his best to “soften the blow”, and prescribed Aricept, first 5 mg, the 10 mg.
So, like everybody on this forum, I want to do what I can to stave this degeneration off. I am still cognitively OK, but with bad memory. The Aricept gives me insomnia and other problems, so when I saw Dr. Bredesen not recommending it, I am now slowly getting off.
I have read Dr. Bredesen’s book and watched some of his videos and am trying to follow his lifestyle recommendations.
My question is: Does the Bredesen protocol work for DLB? Would I benefit from functional medicine?
Thank you.
Welcome back,777!
It's wonderful to hear from you again. Samantha is probably enjoying a healthy life as a health coach in New Zealand. As one of our interns last year she was a short-term and highly valued member of our Support Team.
I am sorry to hear of your unplanned journey through various tests and health care providers this year. Having experienced significant vertigo about a dozen years ago, with the MRI and CT scan and a diagnosis of probably virus, it can be very hard to explain to someone that vertigo isn't just "dizziness"; and that the world won't stop moving and shifting. I was lucky that meclizine helped me. I hope that your doctor is working with you to find something that can reduce your vertigo, which would probably greatly improve your quality of life.
As for Lewy Body Disease (LBD) researchers view it, along with Alzheimer's, as showing as a "disease" that has "biomarkers" in the brain long before someone might progress to being diagnosed with "dementia". It also seems to affect people differently, based on which area(s) of the brain are affected. Since your EEG showed "intermittent" slowing on one area, it appears that you probably have been diagnosed in the early stages of this disease. Because of tests like PET scans, MRIs and EEGs, doctors can see what are signs of a disease even before we or our family may see clinical symptoms of the skills we use in everyday life. In some ways that's good--we know that we need to protect our overall health and plan for what we want if our needs increase. (As someone who is 68 and ApoE 4/4, with a strong family history of Alzheimer's, I updated my advanced directive and medical power of attorney in March and my husband and daughter know my values and preferences for quality of life and quantity of interventions.)
Most importantly, perhaps, is that with this information you can build on Dr. Bredesen's suggestions and also seek out specialists in the LBD field, and experiences of people with LBD. As an example, I have a friend whose son had frontal-temporal dementia (FTD) and who now leads support groups for people newly diagnosed with FTD and their families. If I got a diagnosis of FTD, I would want her on speed dial for the nitty-gritty, day-to-day advice that only a "veteran" can provide.
With that in mind, the Lewy Body Association is an organization you may have found, and whom I would trust for some guidance. Here's their advice on using a team-based approach, looking at both medications and lifestyle interventions:
LBD is a multi-system disease and usually requires a comprehensive treatment approach with a collaborative team of physicians and other health care professionals like occupational, physical or speech therapists. Early diagnosis and treatment may extend your quality of life and independence. Many people with LBD enjoy significant lifestyle improvement with a comprehensive treatment approach, and some may even experience little change from year to year.
Lewy Body Disease Association
Here's their advice on sleep disorders, which you seem to be experiencing:
Sleep disorders include REM sleep behavior disorder (RBD), excessive daytime sleepiness, temporary loss of consciousness with difficulties wakening, insomnia, and restless leg syndrome. These sleep problems can be subtle and hard to diagnose. Evaluation by a sleep specialist can help identify and treat these issues. RBD involves acting out dreams and may result in injuries from hitting bed partners or falling out of bed. Symptoms of RBD may appear years before any of the other symptoms of LBD. The diagnosis of RBD is important because treatment with melatonin and/or clonazepam can be effective.
https://www.lbda.org/go/symptoms-0
And here's some suggestions on interventions using different treatment approaches. (As someone who has needed PT more than once, I've been amazed by the skill and compassion of PTs dealing with those experiencing gait and mobility issues.)
Lifestyle interventions include eating a healthy diet, exercising, and remaining socially active.
Physical therapy includes cardiovascular, strengthening and flexibility exercises, as well as gait training.
Speech therapy may improve low voice volume, poor enunciation, muscular strength, and swallowing difficulties.
Occupational therapy helps maintain skills and promotes functional ability and independence.
Music and aromatherapy may reduce anxiety and improve mood.
Individual and family psychotherapy may be useful for learning strategies to manage emotional and behavioral symptoms and to help make plans that address individual and family concerns about the future.
Support groups may be helpful for caregivers and persons with LBD to identify practical solutions to day-to-day frustrations and to obtain emotional support from others.
https://www.lbda.org/go/treatment-0
FInally--and maybe most helpfully, you may want to see if one of the LBD Research Centers of Excellence are within driving distance. Here's the list:
LBD Research Centers of Excellence The more unusual the disease, the more it may help to find someone who devotes their career to working with those dealing with it. (I say this as someone whose son had surgery when he was one day old that saved his life from a surgeon who we were lucky enough to have in our hometown.)
Hugs from someone who lives in the same lovely state of Virginia as your daughter, I hope you get to visit her soon.