Whether you have the condition, or you’re a carer, a family member or a friend Parkinson’s UK wants to hear from you!
By answering one question, you’ll help shape the future of Parkinson’s. We’ll use the feedback we get to create a new strategy for 2015–19.
You can tell us your thoughts here or you can write to firstname.lastname@example.org
or call 020 7963 9324So, what three things would change your life with Parkinson’s?
This is tricky, the first is more time with the Nero doctor, I have 10 minutes a year and its a different doctor each time, I would like time to really talk to them ask questions feel as if Im being listened to not a number on a list. second as im 55years old my retirement has gone up 6 years I would like to retire at 60 like i was told I would now the ESA is in i'm going to have to die at my machine or be made to feel im scrounging on the state even if I have paid 30 years stamp. Third to be able to have a bungerlow with a wet room where I now class as home not have to move to another area where we dont know anyone. Utopia yes but you asked.
That the drug companies put the welfare of their clients before their profits.
That a cure is found.
If no 1 happens, no2 will soon follow and we will have no need of no 3!
Changing life [u]WITH[/u] Parkinsons?
What would I change?
1,I would like a medication that I can tolerate
2, A medication with no side effects
3, A medication that rids me of these blasted tremors.
I accept I am stuck with this disease but better treatments would be life changing.
Oh, and why do we have to be so far down the line, potentially very disabled, before we can have DBS? In USA they have it in the early stages which provides a better quality of life so people can continue working and providing for their family instead of spending a fortune on meds and claiming high levels of DLA.
I’ve only been dx a year, and my symptoms are very mild. So I’m not sure I “deserve” three wishes. Of course a cure would be marvellous - but as caroline points out, the game is about living *with* PD. So I’ll settle (at least now) for one wish: a truly neuro-protective treatment. I’d kind-of live with that.
Oh, wait, a second - not for me but for others: a well-used early diagnosis protocol. Coupled with the neuro-protective treatment that could help many people?
Thank you so much for all your responses so far.
We’ll use the themes that come up to guide discussions at focus groups taking place in locations around the country in July and August. Would you like to take part?
Whether you have the condition or a close relative or friend who does, we need your views.
To take part call or email the user involvement team:
020 7963 email@example.com
Numbers are limited so we’ll let you know if you’ve secured a place.
Don’t worry – there’s also still time to tell us the three things that would most change your life with Parkinson’s if you haven’t already.
Could someone just devise a foolproof way of getting a repeat prescription?
At my last Dr it was supposed to be give them 48 hrs notice and pick it up. I used to take it in on Weds morning and go back Friday lunch time. Half the time not ready, come back this afternoon.
New Drs, as a service to patients they send it to the pharmacy. Allow 4 days. Give repeat request to surgery on Monday, go to pharmacy on Thursday. Pick up party bag of goodies, a pack of co-codamol I had not asked for, and no 4mg Requip. Each blames the other. I get 3 months supply of some meds and 2 of others. I now have a leaflet about doing it all electronically-- to save me trouble, but I don't believe I would ever get the right stuff again.
I`m sad to hear what a problem it is for you to get repeat meds. At my surgery we can do it all on-line and it has been very efficient. I hope you will see an improvement when your new system is up and running.
My o/h 3 wishes.
1. A cure if not in his life time definately in the near future.
2. Having access to DBS and expensive Drugs like Duadopa and it not being a post code lottery.
3 better education as public perception still that PD is an old persons disease .
1. More access to the professionals.
2. A lot more awareness than there is now. A lot, lot more.
3. More Parkinsons Nurses.
Three things that would change my life with Parkinson's would be:
1. More support immediately after diagnosis. Being diagnosed, given the bare facts about the disease, given the legal warning about the drugs being prescribed and then told that you would be seen again in 2 months just isn't right. I was told that the Parkinson's nurse would be in touch but 7 months down the line I still haven't heard from her! Thanks to this website and the forum I am now much better informed.
2. Free prescriptions - other chronic conditions such as thyroid deficiencies get free prescriptions - why can't we?
3. Financial and practical help with house adaptations as disease progresses.
1. The secret of how to cope and think positively as a younger pwp
2. Free prescriptions
3. The all important CURE
I don’t wish to sound pedantic, but I’m struggling to find anything that can change my life WITH a degenerative disease like Parkinson’s (and I’m presuming you mean ‘for the better’). As others have implied, nothing short of returning to being a person WITHOUT Parkinson’s could be called life-changing. I agree that such things as easier access to professionals; a better system for ordering prescriptions; more Parkinson’s nurses, etc would make life easier, but none of those things could ever be called life-changing.
The only things that could change my life are:
1 A cure; or
2 Treatment which gives the same effect as a cure; or
3 Being told that I was misdiagnosed and to go away because I’m a hypochondriac.
So, for me, the word 'change' should be replaced with 'improve'.
I only need 2.
1. A cure
2. A flamethrower for the BBQ
Three things that would change my life are
Not to have this visitor in my body so a cure would be my first choice.
Secondly better public awareness about the disease
And thirdly Free Prescriptions most definitely.!
I`m the carer of my husband and my life with Parkinson`s would be changed if I could give back to my husband his memory of me and our life together. He does not know that our house is home. He recognises very few faces now and so he thinks he is being looked after by numbers of women who come in at all times of the day and night. He says they look after him well. It must be an anxious and lonely life for him.
As someone else mentioned . When you are first told you have Parkinson's the only way you normally find out anything abut it is to look it up on the Internet . The consultants and Gps just hand out some pills and tell you to make an appointment in 4 months if you are very lucky
They should at least give you some extra time or even arrange a further appointment when they can explain in lay mans terms a little about it .
While we were in the waiting room I browsed some of the literature and came across one for Parkinson's UK .
Access for everyone to be able to contact a Parkinson's nurse if you have something worrying you . Maybe even by be mail for those on line . How much time would that take ?
When I think of the hours I have sat and pondered /worried and still not found an answer .
1. PD recognised as a permanent chronic illness without you having to feel like you a fraud
2. Having confidence in the 'system'
3. Knowing that the services I need are there without a long winded wait and then 5 minutes and a see you in a year