I thought people with Parkinson’s have trouble getting stressed and anxiety and find it hard to use there hands and this new site is all that one big headache sorry
On one of my rare visits to the new forum…I see a request for members to make a video of themselves and send it in.
One question…have the admins of this site ever met someone with Parkinson’s?
Make a video?
Many are struggling to use a mobile to make a phone call!
How far removed from the reality of PWP’s lives can this organisation get?
I’m sure some techies will carry out the task and work out how to send it in…but how many others will feel excluded and sad that they can’t even take part in activities on a forum meant to be for them?
I do think this site is very hard to negotiate, without asking to film ,but I think what would be a real eye opener for everyone else with and without pd .If pduk get together with people who have gone through dbs they make a 1yr 3yr and 5yr video by professionals of everything and all the different stages of the real meaning! ON and Off .Pduk could work with the hospitals who have the video footage. If interested I will give my permission and I think other people dbs would agree. It shows dyskinesia, gait,stiffness, tremors and dystonia .
I like tech and can see that it has the potential to offer real benefits to people with a range of health conditions but I personally feel that it’s being seen primarily as a cost cutting vehicle which means that many of the tech strategies and solutions being implemented are merely going to serve to leave me sitting accessing help and company via a computer or smartphone that my hands are frequently at war with - though I will be very cost efficient because I won’t be able to access any of the online resources designed to help me self-manage. The 'digital revolution ’ could be really exciting when you consider the developments out there but instead the whole concept just fills me with dread and something close to despair.
Dexterity issues are hardly uncommon amongst those of us with Parkinson’s, and I know we’re all different but I suspect there’s more than a few people out there who, like me, could almost start World War 3 with a smartphone (and my symptoms are still manageable :-S).
I think I’m beginning to sound like a broken record but if we are to be able to access the digital world, I personally feel that funding should be aimed at developing devices that people with poor dexterity and potential speech issues can actually use in the first instance.
And I am sure that there are things in development that would offer genuine access; maybe it all comes down to money - who knows. :-(. Jx
Just wanted to say I agree with others that this forum is a really valued place and it would be really good if it could be simplified. I appreciate a lot of work has gone into it but many of us are not tech savvy and may not have the time or energy to watch tutorials on how to use it. Especially the newly diagnosed who may be still be feeling extremely fragile anyway and be easily put off.
On a day of bad shakes when I keep accidentally tapping the wrong thing, this adds to my stress levels making the shakes worse. Vicious cycle, so I log off