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
It was good not anymore!!!
Hi Reah. I am new to the forum and i do find getting to grips with forum is going to take some time. The tutorials are a step in the right direction but even so you have to watch and listen to them carefully a few times to get to know the basics. What I find most useful when using some new software is to have a guide to hand. A built in option to print a users guide would be most useful which you can refer to at anytime.
OK - I have tried to be fair and learn how to make the best use of this revised forum (and I am honestly OK with IT) but it is seriously un-user friendly. I seem to think that one of the rationales for scrapping the previous layout - which worked really well - was to provide more accessibility features but I’ve looked and looked and I have no idea where these features are hiding. This is the most inaccessible forum design that I can imagine and as I find myself increasingly uninvited to things which people think I will find a ‘little bit too challenging’ (I get it - my presence makes things difficult) it would be great to be able to use it a little more easily.
Still, I’ve kept myself mildly entertained by scoping out other health charity websites to see what I might have preferred to have been diagnosed with based on the website/forum offering ;-S
Hmmmm - better not check them all out now. . . there’s still New Year to get through
I don’t use it nearly as much as I used to since it was ‘improved’. The old saying ‘If it ain’t broke don’t fix it’ springs to mind, I could always find loads of interesting tips on here but not anymore. Seems I’m not alone. I wonder who’s bright idea the improvements were.
I do not know what the forum was like before the changes, but I want to say that I use the current forum daily and find it simple to follow threads I am interested in, search for specific subjects and to check out new and latest postings and comments. I am finding it very supportive and a great place to chat to people who understand. And lastly but not least it often gives me a reason to smile in the middle of the night.
The forum was changed by the powers to be
I lost my wee palls and they lost me
Why did this happen I’ll never know
Who are the people that run this show ?
Alas they won’t listen they are still boasting
look at all the folks that are still posting
Newly diognosed we put them at ease
And some like just now it just doesn’t please
Every day we had new tales to tell
Somttimes a moan our PD was hell
As I write this dribble and remember the great crack
I get a bit tearfull as it will never come back
It seems people with PD do not like the change
How this all came about is very very strange
Well that’s us got our point across
Many thanks to the forum boss
Lord of the highlands ach aye the noo
Chin up folks Tooraloo
Hi lord of the highlands,
Well said Ian,I do agree with your poetry,the old forum was better.
This is an excuse for a poem but it’s the best I could do tonight.
Wow, Saturday evening and I’m in writing bad poetry and posting it on a forum that I’m grumbling about! Oh dear :-S
I have to say
I do agree
Why it’s better this way
I just can’t see
And maybe I’m old
And glum and dour
But to do what I want
Can take me an hour
I'm glad that some Find it ok And change is good.. Well so they say But for those the forum's left behind, It's one more thing they've lost, It's here to stay and that is that, But it's come at quite a cost.
Oops - No idea what I’ve done to the layout! :-S
A welcome laugh at nearly 3 a.m. with well made point. Thanks on both counts!
Yup. I’m 66 - last time I earned badges was in the boy scouts. A strong simple, intuitive indexing system is required on sign in in. Have asked questions, and given answers but never been able to find original texts. Perhaps I’m just too thick, or not up to date with modern IT ways.
No it’s not you. This is the worst forum set up I’ve come across and the programmer who developed it should be embarassed.
Even typing into the search box usually returns, ’ no results found’.
The ‘jump’ thing is weird and few know about it…and have to scroll down sometimes years of old posts.
It might suit young tech-savvy youngsters but not a mainly aging often disabled client base.
I rarely drop in now and miss the support of the forum in previous years.
Not fit for purpose.
The fact that there were subsequently 3 videos produced to explain how to use the forum says it all. All the other forums I use are intuitive, simple to navigate. What I fail to understand is why the design of the forum is so awful when the Parkinson’s UK website itself is brilliant.
I don’t think it’s anything to do with being ‘tech-savvy’ either as I like to think I am. Ah well!