Innovative products designed for people with Parkinson's Disease


#1

Hi all

My latest vlog, about innovative products designed for people with Parkinson's Disease.

https://www.youtube.com/watch?v=fPjWFaFV974

Cheers,

Ian


#2

It's Parkinsons, not PD please, Ian.


#3

dr james parkinson  was an early socialist and implicated in a plot to kill king george 111 by means of a poisoned  dart to the neck .in 1974 it was called. pop gun plot .wrote many pamphlets eg  revolution   without bloodshed,charges were quietly dropped .by privy council,

was also a member geological society .also wrote .organic remains of aformer world ,

he also studid  shaking palsy pd .

                                                  sorry   ian

                                                                    signalman 


#4

Selfbuilder

 


LOve your Vlogs ... interetsed to know how long u have had Parinsons and when u had DBS ... and if u think it has made a major contribution to your functioning ?


I am on LEVODOPa (125x6) plus DAgs(16mg) .. treid MAOB inhibitor SELEGELINE with little effect (so stopped it) ... and recently put on MCOMT inhibitor OPICAPONE . This latter drug is new and has increased  my ON time by 2 hours and it is better ON time... !

I report back to my NEURO (after 2 mths of drug) soon and i have a dilemna in that i would like to have DBS sometime because it seems to make such an improvemnt for the people who talk about it online but i fear if i am too enthusaistic about OPICAPONE he wont consider DBS for me .  I get the impression from your vlogs that u r not happy to just get OK palliative care but are seeking to get the best treatment u can. So likewise i have been really pleased with OPICAPONE but get the impression that DBS is in another league.  Maybe its a sort of greedy thing but i w'quite' to give myself the best chances not just getting by ... then given that  DBS exists (and APO PUMPs or DUODOPA for that matter) and if they are the quantum leaps that people seem to report then i want to be considered for them too.    I reckon if i say i am alright (ie: 'quite' good) my neuro will forget about me !  Thye see so many people that you have to be in a bad way to get attention so if u r doing ok but aiming to do well the system will ignore u unless u make a lot of noise !  ... xAndy(aka Ojalahey)


#5

Hi Andy

Have had PD since the mid 90s at least.  Wasn't diagnosed until 2011.  I had DBS in April 2016, and it has changed my life.   It's not perfect, but it is a whole lot better than before.  I would ask your neurologist about DBS - see what he or she says...   I'm guessing you have watched my DBS videos also?

Cheers,

Ian


#6

Self Builder 

Thanks , sounds like a major improvement.

I have recently gone on OPICAPONE which seems to have increased my on time.  Not sure if i am

considered bad enough to have DBS (or APO pump) ... but   arguably thats not the point.

And yes i watch (and enjoy) your vids


cheers ANDY

 


#7

It used to be that DBS was a last resort, but these days they are doing it much sooner because of the potential for improving quality of life.  


#8

Does anyone have any experience of using cannabis oil either by capsule or by vaping.  I am interested in dosage etc.  We have been taking 1000mg capsules for the last three weeks and now notice a distinct improvement  for the last 2/3 days.  This may be a coincidence of course, but if anyone else has any positive experience of this over a period of time I would be interested to know.  Thank you


#9

I use whole cannabis to good effect.  Have tried various CBD oils, which do have an effect, but not as good as whole cannabis.