Have to agree that this is not user friendly. I am in my 70’s but am a carer for my husband who has Parkinsons. I worked on system testing for financial and insurance systems and wrote programs to interrogate systems as well as writing spreadsheets with macros etc so I believe I can call myself computer literate but I don’t like your website as it is.
3 Likes
Hiya redbargee,I have just replied to one of your postings! the ‘get help using the forum’ I only found it because you had pressed the reply button from something I had commented on before and the notice came through to me (it was NOT the reply button highlighted in BLUE) If you press the spyglass near to your name/logo it will come up with search, type in ‘get help using the forum’ it should take you to that particular entry. If it doesn’t then I don’t know much about the forum either…HaHa
Sheffy
Welcome. Couldn’t agree more @rodbargee, the forum is not at all user friendly as I’ve said elsewhere on another thread months ago (which I won’t be able to find). It’s horrible. The fact that help videos are needed is good evidence to show it’s not intuitive. It puts me off posting and viewing more and I suspect the same is true for others. Something simple like phpBB with forums, threads and posts would work much better I believe.
3 Likes
Hiya,
Agree with all comments, not a good website at all. I hardly use it. It is impossible to find anything. Also, patronising comments by Parkinson’s administration are not helpful. Other Parkinson’s websites much more informative.
2 Likes
Trouble is with Parkinson’s Administrators they live in there London HQ Bubble, where everything is how it should be not as it is. For example go and see your GP for advise, here in the real world majority of GP’s know nothing about Parkinson’s and even tell you that as more than one has told my wife. It’s a postcode lottery what care is available. As my Wife has to travel 75 miles to Newcastle to see a consultant as the the one in Carlisle 8 years ago was elderly Care Dr with an interest in Parkinson’s. My wife was only 51 at the time. By the way the care from Newcastle is excellent.
If you need advice speak to your Specialist Nurse or Consultant.
2 Likes
Agreed, being back old version!
Hi @GentechE1,
I’m really sorry you feel this way. We try to offer the best information and support to members on the forum, however, we understand that the reality of what many of you face can be really complex which is why we advise you to contact our helpline service for more support on a one -to- one level and often times, I will liaise with my wider team to decide on the best course of action on particular issues.
We also understand that many people struggle with finding GP’s that fully understand Parkinson’s and If you would like help in raising issues with your clinic, our helpline and local adviser service can help you talk through your wife’s options and rights as a patient.
I hope this information helps in some way. 
Best wishes,
Reah
1 Like
Firstly, I am disappointed that you’re still experiencing challenges with using the forum and as I’ve mentioned before, I’m happy to help you in any way I can.
We created the platform for people with Parkinson’s and when we updated the forum a few years ago, we consulted with members from the forum at the time and invited them to test the platform - they all agreed that the forum was user friendly. However, we understand that some may find it more challenging than others (particular new members to the forum) which is why we created the forum tutorial videos as a helping hand to anyone that may need it.
We certainly do not intend to come across as patronising and my apologies if this has ever been the case - we only endeavour to support you in the best ways possible.
Finally, it may be helpful for you to know that you can contact our dedicated feedback team who can address your comments or complaints so please feel free to email them at [email protected] or call 020 7963 9324 if you wish to share your feedback on the forum
Best wishes,
Reah
1 Like
Hi all.
I am one of those annoying middle of the road people, so I agree with some of this and some of that. When the forum first changed, it took me a bit to find my way, but I kept searching till I found my way. As I do not venture far, I found my route and stuck to it. As long as no Road Ahead Closed signs appear, I am ok. However, I can understand the trouble others might have, and can only hope they do not give up. If there is someone who understands forums better than I do, perhaps they could make some suggestions to admin, that might help. I am sure they do their best for us, but of course, if you are in a job, you can forget initial difficulties and think things are obvious that others find confusing. (Hopefully not as confusing as what I have written!). Good luck all. X
I would like to echo what ElleMac has said. Took me a while to get used to the forum and I have always had good help from the admin when I have asked. I hope that you benefit from being here as I have and I wish you well
I alsoI do not find the forum very user-friendly.
anything in particular that I can help with
I have only just joined this website i am a little savy too but i find this site hard to navigate. Iv just joined {tonight]. I may not return because i dont find this site comfortable to use. SORRY
Hi @jazzshampoo, 
Welcome to the Parkinson’s UK website. 
I’m sorry to hear that you find the forum hard to navigate. Can I ask what exactly are you having issues with? I’m happy to help you in any way I can. Also, we’ve created a few short tutorial videos to help our members out which you ca find here: How to use the forum - Tutorial videos!
Best wishes,
Reah
Forum Community Manager
If even those who say that they can navigate the website had trouble in the first place as they say then it is not user friendly, they have just spent time learning their way around it.
you have a PD nurse !!!
Still new here and its still somewhat confusing, I belong to several forums (mainly to do with motorcycles and they are simplicity itself. and use very common forum software. My Partner was "given " A parkinson’s diagnosis recently. she’s still a very fit 65 year old walks every day. Hills no problem and is a driven individual ( to a fault sometimes she works or does what ever the activity is till she drops) her symptoms a relatively mild so far An Arm tremor and leg occasionally ( more subliminal) I have not really considered myself to be a carer yet though the realisation is Now dawning ( I’ve never been the quickest off the mark) it is progressing, slowly so far. Anger figures a great deal, with the diagnosis and often, me.
We have a “sparky” relationship and have been together for 30+ years. in dark moments she wants nothing to do with me and doesn’t want me to be there overseeing her condition worsening. She’s no quitter and wont, but needs help and has a, often self induced, ridiculous workload, Grand children childcare, very tiring on two to three days a week to support our Daughter who’s husband is in the Army and often deployed. So a lot of the time she’s a single parent with a five year old and a baby of 1 &1/2.
i try to be supportive but works non existent post covid and i have long periods of being “in the way” at home. I’m hoping this is not an uncommon introduction to the condition arriving (“Given”) so would appreciate some sense of recognition to what were starting to go through. best rodbargee username has followed me around the internet AKA
Adam
Hi Adam,
We’re sorry to hear you’re still having some difficulty getting around the forum. You might find these videos helpful. As for the relationship changes that are occurring between you and your PWP Partner, you are certainly not alone in this experience, as you’re sure to learn from our awesome community. We’d recommend checking out this section of our website, as a starting point for the wealth of related data you’ll find with a quick search. And of course you are welcome to call us at 0808 800 0303 for a free and confidential chat with a friendly trained adviser. You needn’t be a Person With Parkinson’s and your questions needn’t be medical. They are able to help in a multitude of ways, and happily.
Please accept our best wishes and we hope you’ll come to find comfort in this lovely community.
Jason
Moderation Team
Hello rodbargee
I read your post this morning when I was awake way before any lark so please forgive any typos I may miss, I’m typing pre meds which is always a bit risky!!
As I read your post several things came to mind. First thing to say and please remember this is only my personal opinion, but whatever your views beforehand it is only when actually faced with a life changing situation do you find out how you really react. In such circumstances however anger is not uncommon among the myriad of emotions likely to be felt. I also think that a person’s basic personality type, in its simplest form this may be described as being a glass half full or half empty sort of person, can also impact on how a person copes and manages whatever that event was. Parkinson’s is no different to any other in that respect. From what you wrote of your partner I can only imagine how difficult it is for her to see herself as someone who needs help. She would seem to be a person who thrives on being busy, always doing something and not one who finds it easy to stop and just be. If this is accurate then I suspect a diagnosis of Parkinson’s would be her worse nightmare. It won’t be easy for her to adapt to a life with slower, inconsistent movement for example or recognising the need for pacing what you do, finding a balance between activity and rest and so on. She may see it as a loss of control maybe even a weakness and these can have a huge impact on how she may see herself, her self esteem and confidence. She may not see it like that but I suspect there may well be some truth in what I write. For me personally the main component in living with Parkinson’s is one’s mindset. For me that means staying positive, I don’t let Old Parky take top spot, it doesn’t define who I am as a person. My way isn’t for everyone. Some and I suspect your partner is amongst their number see it as some kind of war who use their energies to rage and battle against it all the way. That’s not my way but it is no less valid or effective than mine, it’s just different.
The reason for writing all that is to highlight some of the complexities behind the headlines if you like. Parkinson’s is a complex condition that affects everyone differently but it’s impact is also variable and person’s pre morbid personality and attitude to life will play its part in that and how each of us copes with it. If you can recognise these sorts of things that to be honest, are rarely included in any information or discussion on the subject, you may be able to better understand what is going on. As an example you write you have always had a sparky relationship so that will no doubt continue but the impact of Parkinson’s has the potential to make it sparkier (if there’s such a word) That she sees you as being in the way is a reaction that can often be seen when a couple reach retirement age and find themselves spending time together but over and above that it might be it means you see her not managing so well more often than if you were working, she may be embarrassed by this, it may be that if you are around she can’t deny what is happening. She may even be envious/resentful/ that you do not have the problems she faces and so on. Your own position of having limited or no work must be another pressure on you.
I realise that this does little to address your main issue in practical terms but I do hope thinking about things more broadly may provide an explanation or reason for what is happening and that this may in turn help you find a way forward that suits.
Good luck
Tot
2 Likes
thank you for the time you obviously took to read and [quote=“Tot, post:24, topic:25439, full:true”]
Hello rodbargee
I read your post this morning when I was awake way before any lark so please forgive any typos I may miss, I’m typing pre meds which is always a bit risky!!
As I read your post several things came to mind. First thing to say and please remember this is only my personal opinion, but whatever your views beforehand it is only when actually faced with a life changing situation do you find out how you really react. In such circumstances however anger is not uncommon among the myriad of emotions likely to be felt. I also think that a person’s basic personality type, in its simplest form this may be described as being a glass half full or half empty sort of person, can also impact on how a person copes and manages whatever that event was. Parkinson’s is no different to any other in that respect. From what you wrote of your partner I can only imagine how difficult it is for her to see herself as someone who needs help. She would seem to be a person who thrives on being busy, always doing something and not one who finds it easy to stop and just be. If this is accurate then I suspect a diagnosis of Parkinson’s would be her worse nightmare. It won’t be easy for her to adapt to a life with slower, inconsistent movement for example or recognising the need for pacing what you do, finding a balance between activity and rest and so on. She may see it as a loss of control maybe even a weakness and these can have a huge impact on how she may see herself, her self esteem and confidence. She may not see it like that but I suspect there may well be some truth in what I write. For me personally the main component in living with Parkinson’s is one’s mindset. For me that means staying positive, I don’t let Old Parky take top spot, it doesn’t define who I am as a person. My way isn’t for everyone. Some and I suspect your partner is amongst their number see it as some kind of war who use their energies to rage and battle against it all the way. That’s not my way but it is no less valid or effective than mine, it’s just different.
The reason for writing all that is to highlight some of the complexities behind the headlines if you like. Parkinson’s is a complex condition that affects everyone differently but it’s impact is also variable and person’s pre morbid personality and attitude to life will play its part in that and how each of us copes with it. If you can recognise these sorts of things that to be honest, are rarely included in any information or discussion on the subject, you may be able to better understand what is going on. As an example you write you have always had a sparky relationship so that will no doubt continue but the impact of Parkinson’s has the potential to make it sparkier (if there’s such a word) That she sees you as being in the way is a reaction that can often be seen when a couple reach retirement age and find themselves spending time together but over and above that it might be it means you see her not managing so well more often than if you were working, she may be embarrassed by this, it may be that if you are around she can’t deny what is happening. She may even be envious/resentful/ that you do not have the problems she faces and so on. Your own position of having limited or no work must be another pressure on you.
I realise that this does little to address your main issue in practical terms but I do hope thinking about things more broadly may provide an explanation or reason for what is happening and that this may in turn help you find a way forward that suits.
Good luck
Tot
[/quote]
Thank you for your reply which is well thought out and I suspect right on the money, It is indeed a steep learning curve for both of us, and i will endeavour to take the wider view. watch this space… Adam