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Gene posted an update in the group Parkinson’s Disease Advocate Network
The National Parkinson’s Foundation is having a MOVING DAY event on June 2, 2018 at Evergreen Valley College. I have a team (TEAM GENE) and am asking for people to join my team and donate. To join or donate go to MovingDayWalk.org/TeamGene. I hope to see you there.
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Eric Drew posted an update in the group Parkinson’s Disease Advocate Network
Quick Research on Lewy Body Dementia
I did find a new clinical trial announcement at the Pacific Neuroscience Institute in LA area here – https://www.pacificneuroscienceinstitute.org/wp-content/uploads/EIP-Flyer-16-Sep-19.pdf . It is double blind, but usually after the trial period they will allow all patients ot get the medication.
Also there are some great resources and you can schedule consultations online here – https://www.pacificneuroscienceinstitute.org/brain-health/conditions-treatment/dementia/lewy-body-dementia/
Unfortunately DLB (Dementia Lewy Body) symptoms include hallucinations and delusions which get worse as disease progresses. This is a drug that treats the hallucinations and delusions – https://www.nuplazid.com/about-parkinsons-disease
NIH Resources – https://www.nia.nih.gov/health/what-lewy-body-dementia
Mayo Clinic – https://www.mayoclinic.org/diseases-conditions/lewy-body-dementia/symptoms-causes/syc-20352025
Foundations and Support – https://www.apdaparkinson.org/article/understanding-parkinsons-disease-dementia-lewy-bodies/
The Difference Between Lewy Body Dementia, Parkinson’s Disease and Alzheimer’s Disease
Clinical Trial Options – https://clinicaltrials.gov/ct2/results?cond=DLB+&term=Lewy+Body+Dementia&cntry=&state=&city=&dist=
I only found a few Interventional (treatment based) Study that I found that was recruiting is in Nashville – https://clinicaltrials.gov/ct2/show/NCT04246437?term=Lewy+Body+Dementia&cond=DLB&draw=7&rank=53
Here is a stem cell treatment study in Connecticut and Florida, but I would definitely contact the lead doctor Steven Levy, MD 203-423-9494 stevenlevy@mdstemcells.com
https://clinicaltrials.gov/ct2/show/NCT03724136?term=Lewy+Body+Dementia&cond=DLB&draw=8&rank=70 -
Eric Drew posted an update in the group Parkinson’s Disease Advocate Network
For Lewy Body Parkinsoons – https://www.pacificneuroscienceinstitute.org/wp-content/uploads/EIP-Flyer-16-Sep-19.pdf
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Daniel Christian Patient Advocate joined the group Parkinson’s Disease Advocate Network
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Aloha Health Network posted an update in the group Parkinson’s Disease Advocate Network
New research shows that B12 inhibits key enzyme activity in Parkinson’s Disease (LRRK2). Though this research is limited to cellular and animal models at this point, as Iban Ubarretxena pointed out this, “constitutes a huge step forward because it is a neuroprotective vitamin in animal models and has a mechanism unlike that of currently existing inhibitors. So it could be used as a basis to develop new therapies to combat hereditary Parkinson’s associated with pathogenic variants of the LRRK2 enzyme”.
Vitamin B12 Inhibits Key Enzyme in Parkinson’s Disease | Technology NetworksAlthough most cases of Parkinson’s are sporadic, the inheritable variants of the disease are mainly associated with mutations of the gene that encodes the LRRK2 enzyme. Inhibitors of LRRK2 do exist, however they have many undesirable side effects. Vitamin B12, according to a new study, inhibits the kinase activity of LRRK2 and thus presents as a novel class of modulator for the enzyme. -
Aloha Health Network joined the group Parkinson’s Disease Advocate Network
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8Ting posted an update in the group Parkinson’s Disease Advocate Network
And Brain Support Network’s link is:
Brain Support Network | Brain donation to find a cure for neurological disorders; atypical parkinsonism support group; LBD/DLB, PSP, MSA, CBS/CBDBrain donation to find a cure for neurological disorders; atypical parkinsonism support group; LBD/DLB, PSP, MSA, CBS/CBD-
Thank you so much for posting this valuable information!
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8Ting posted an update in the group Parkinson’s Disease Advocate Network
Parkinsonism is a generic descriptive term that refers to the whole category of neurological diseases that causes slowness of movement. The category includes the classic Parkinson’s disease, many atypical variants, sometimes called “Parkinson’s Plus Syndromes”. The following are two links for care and support. CareXc has a parkinson’s in-home care plan and Brain Support Network has a lot of recent development news.
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8Ting joined the group Parkinson’s Disease Advocate Network
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Polly posted an update in the group Parkinson’s Disease Advocate Network
Hello everyone in the Parkinson\’s Disease Community. I am brand new here. My husband and I live in Aptos, CA and he was diagnosed with Parkinson\’s in 2015. I would love to know about any of the most current resources available and am excited to have found this site and all of you! Thank you Eric Drew for taking your struggles and creating something so beautiful and beneficial to the world. You may have received a miracle but in my mind, YOU are the miracle. Bless You.
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So happy to see you found and joined this site. I have been a caregiver for my sister who suffered atypical Parkinsons. So I know a few things that a family caregiver might want to consider. I will post some in a separate comment area. The key thing I want to suggest is that you have to make sure you take care of yourself as well because Parkinson’s caregiving can be very tough and need to take a break.
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Thank you both and thank you Polly for your kind words, and for posting such valuable content! We do have a new free service called Aloha Health treatment search, which is essentially a very customized search for the most advanced treatments and clinical trials available. I would be hay to facilitate this for you and your husband if you want to email me at eric@weheal.org. The Aloha team may find an amazing treatment for your husband’s Parkinson’s!
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Polly joined the group Parkinson’s Disease Advocate Network
Thank you Gene for posting this. We are now recruiting interns to provide information and resources for Parkinson’s patients here in the WeHeal Parkinson’s community! Stay tuned!