While reviewing the TP ( Trial Participants ) I noticed the prevalence of PWPnPD ( People With Parkinson’s & Parkinson’s Dementia ) and DLW ( Dementia Lewy Body ).
Lessons Learnt:
- With PWPnPD & DLW it takes much, much longer to run a trial, observe, attach and detach the gloves etc.
- It has taken at times, 2 – 4 days prep & wait for just a 30min session !
- When the LB ( Lewy Body ) kicks in , nothing goes to plan and one has to just wait
- On occasions the TP refuses to wear the gloves
- At other times, after ~ 10mins the TP pulls it off and sometimes , forcibly – damaging the parts
- Often the session requires a carer to sit next to the TP
- During the session – a few tend to fall sleep ( both PWP and PWPnPD )
- After a session, the carers noticed that the TP does sleep through the night without interruption ( both PWP and PWPnPD )
- And in the morning few managed to wake up on their own and goto the bathroom – which the TP has never done !
- Due to the extra time required for the PWPnPD & DLB cohort group – I’ve started building a 3rd Gen Neuromodulator
- I get a report everyday from the carers/partners observing all aspects before and after
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lesson 0: if the TP (trial partecipatant) gets tired, and he/she usually gets tired easily, then starts to complain and nothing will go well for her/him.
Tip: Bring her /him to a comfortable, pleasant environment, ensure she /he is well fed, hydrated and rested, be gentle and listen to her /him needs before you begin.
This is to protect caregivers from the stress of an uncooperative potential sufferer.
The prime reason this behavior occurs is when the Lewy Body kicks in - which is totally unpredictable. This rarely/hardly occurs with PWP but very prevalent for PWPnDLB.
I have never dealt with Lewy Body folks / symptoms ( one to one ) before so I am on a steep learning curve - being assisted by the carer/partner and observations. There are typically 7 x stages to Lewy Body and with the cohort group - i can see it first hand !! - which is a big help. Hallucinations is the biggest issue and the repercussions / behavior are very challenging at times very daunting ..!!! .
Thank you for sharing. Do you know from experiments, do those with dementia experience more hallucinations or have them triggered once they start with the gloves?
This is my biggest fear and always the problem with any treatment option.
Interesting! Thank you. We have arthritis vibration gloves (they have a steady vibration frequency) but am debating whether to go through the effort to make the Tass gloves with the correct vibration patterns.
My take - If you have the time and assistance to build the PD Glove - go for it. Like meds it may / may not work for you but you won't know till you try. Rarely has there been infor available for one to do a DIY version - and we are merely leveraging on the computing power from Stanford uni and Dr. Tass' research. And technology today has paved the feasibility & economy - to try it. Few years ago - it would not be possible due to the cost and parts availability . The prime driver that has changed the dynamics is the mobile phone.
Hi , I happened to read some posts and came across your comments re: loss of speech etc. I posted some weeks ago the result of a PWPDLM and being able to speak with articulation after the DIY Glove session. I think it's worth for you to give your partner a try - if you can get your hands on a set of gloves or build one . I did not expect the gibberish speech to improve . So I say again - if you don't try you won't know - precisely what I'm discovering with the trials I'm running. Remember - It's better to try and fail and do nothing and succeed - my motto ! Take Care.
PS : Let me share - from my limited permutations - you need BOTH hands to be neuromodulated.
I really appreciate this info. Probably you posted this elsewhere but what is the latest glove “ recipe “ you are following for your trial? Would I start with the “buzz board” youtube I saw or do you have some mods you’ve made?
I have enough electronics knowledge to do this but I have a full time job still as well as helping hubby, so I’ll have to see if I can prioritize it and swing the time! Or maybe can rope some friends into it.
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