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Don't let Parkinson's stop you exercising. It's never too late to start.
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Target your symptoms and stay connected with others.
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What does the research say?
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383 Reviews
Tell people what you think
Pam Robertson
· December 14, 2017
Over the last 2 weeks I’ve found it very difficult ... but this site has helped highlight I’m not alone. My mum is 79 on Sunday, her medication has been regulated however in early November her stalev...o dosage was reduced. Though no immediate effects of this were seen it’s been a gradual change in behaviour then she contracted a urine infection which in her words “sent her loopy”. The poor soul suffered from hallucinations to the extent that she called the police to report intruders in her house. She’s been in hospital from Sunday and care she has received heras been immense. Today the GP has agreed to increase her meds back to original dose and will monitor over weekend ..... without this site it would make it impossible to deal with as this site shows you’re not alone ! What a frightening and debilitating disease ! See More
Jennifer Jones
· February 5, 2018
I found the Parkinson's uk Facebook Page informative and reading other people experience of the condition helpful. When my doctor first told me he thought I had Parkinson's I was devastated. I remembe...r waking the next day on a Saturday to the news Muhammad Ali had died, the images of him later on in life effected by Parkinson's stayed with me for a long time. It took me a long time to come to terms with the diagnosis and knowing Parkinson's uk is there for me and others with this condition I feel I am not on my own. See More
Karen N Colin Missenden
· November 6, 2017
Support for people with parkinson's and their family's, I can honestly say without the support this charity has show me since my diagnosis in June 2013 I would have cracked under the strain it causes.
Sylvia Billings
· June 21, 2017
My husband has had PD for 14 years then 4 years ago he now had Demensia,life is so hard,I am his carer it's 24 hours,at night I have to get up and help him back to bed as he is not able to lift his le...gs up so I have to lift them up and get him settled.I am now taking him to a day centre twice a week so I get some free time.I sympathise with all carers it is the hardest thing you have to do,you are watching the person you love fade away,not a lot of headway has been made with medication for P D See More
Stuart-Andrew Lowe
· January 2, 2018
This is a business not a charity.
Do not give your money to the 11 directors of this company.
Sandra Wright
· August 12, 2017
My husband was recently diagnosed but as we live in France I tried to join the discussion forums but was unable to do so ...it would have been good to discuss things with others .//
Jane Adamson
· August 3, 2017
I have had Parkinson now for 15/16 years. I take Stakevo as my main medicine. It is becoming less effective as time passes. So now my neuorlagest has indicated that I should try DBS. I am nearly ther...e expecting to go to the hospital in queens square London. Sometime soon. See More
Sarah McDonald
· August 15, 2017
A good page, discussing everyone's experiences with Parkinson's. I'm new on here. I got told I had Parkinson's 6 weeks ago I'm still getting my head around it I'm only 35
Emma Buchanan
· April 17, 2016
I just wanted to say thank you for all the support Parkinson's UK have given to my mother. She was devastated by her diagnosis and initially felt lost and alone but since finding you has strived to en...sure no one else feels else like that and that they turn to you. She has got her MP on board in the campaign and is trying hard to educate people who work in the NHS about Parkinsons. I'm so proud of her. Keep up your great work and I hope Parkinson's Awareness Week is a great success. X See More
Dee Taylor
· May 5, 2017
My experience with Parkinsons was excelent. The consultant my late husband had and his team were so caring and would do anything and everything within their power to do to help, not only Malcolm my hu...sband but me also. they are very, very caring people and deserve more than what they receive. See More
Nicola Stevenson
· September 16, 2016
Love this site as my dad has PD I get to understand more about the condition and how it affects other people who has it and learn from how they cope and what signs they have plus hear from families wh...o have loved ones with PD. This site has helped me to get though really bad times and even now it's hard. Thank you to everyone and just to let everyone know don't be scared to ask for help. One day I'm sure they will find treatment that will stop PD. See More
Mark Dettinger
· March 22, 2017
Greetings from Virginia, USA. I was stationed on RAF Lakenheath in the late 1970's for about two years. I have both Essential Tremor (lifelong) and Parkinson's (stage 2), diagnosed in February of 201...2, at age 54.
You have a grand website and Organization
Cheers!
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Linda Ibrom
· May 24, 2017
Very informative.Especially the new research.
It is such an awful disease and such embarrassing symptoms and the outside world doesn't necessarily recognise Parkinsons symptoms and can be very callous.
Mandi Turner
· October 9, 2017
My husband was diagnosed almost 3 years ago whilst in his middle 50 's ..... a fit competitive sporty young at heart amazing man full of energetic creativity in the peak of his career .....it was a sh...ock with so much to digest and process..
I am an ex nurse , which maybe helps , tho some days too much knowledge can be a sobering thing , then it's chocolate ,loud music ,dog walks and a hug from a friend which does the trick ......we have two amazing grown up kids ..and a home with dogs cats chickens and pets of various sizes ..
Family has and continues to be the most important thing and we are blessed along with fabulous friends ..
Aside that Parkinson's Uk has become a funny sort of friend too , it has provided a structure and base to focus on especially yearly as we plan and complete major walks whilst we can , e.g., just completed THE HIGHLAND WAY -And climbing BEN NEVIS , last year was the COAST TO COAST .. next year we aim to walk the DALES TO THE LAKES ...be it a little slower than this year !
Raising money for Parkinson's research ..what is so amazing is the people we meet along the way , some with Parkinson's and many who know , love, care for those with Parkinson's ... each and every one offers hugs, penny's out of their pockets to add to the charity pot and without fail people , strangers are humbled , compassionate and often emotional in support.
Parkinson's support was the first call I made following my husbands diagnoses , crying too much made speaking impossible at the time, however I was reassured the listener was just going to stay on the line until I could begin a rather sniffly conversation .. after which I felt I had crossed a difficult barrier and made contact and was ready to take a deep breath and find out more and be ready to adapt as Parkis delivered its daily challenges ..
I don't know who that gentleman was at the other end of the phone that day , but they were there and I thank them for listening and waiting and offering advice ..
We don't know for sure what is around the corner, but each corner is less daunting with the knowledge there are others in the same boat, that Parkinson's research continues and that we continue along with so many others to raise funds to support seeking that much overdue improved medication to slow if not stop the process of deterioration .
We have other close friends now who we are blessed to have in our lives living with Parkinson's who were diagnosed later than my hubby and those who have lived with it for many more years and are more obviously challenged with it ..
It's a 'Parkinson's family ' we are all connected with the same thread ...
None of us are really alone ..
It's a fight and battle often on the front line in which all of us at some point take either the lead or feel a need to step back and allow others to step forward to take a bit of the pressure and shine the light for moving ahead ....but never alone
I have read many statements on here which leave me moved and pondering on life and how tricky it can be ..
I am just the wife of one who is directly living with Parkinson's , I salute you all ... and tip my hat �...
Wishing you all , wishing US all as a parkis family , the wonder of human determination to enable us to keep walking forward toward healing this sneaky disease into submission ....�����
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Vikki-Leigh Simper
· October 21, 2017
Took part in the spooky sprint today and loved it
Kevin Keates
· December 4, 2017
Hi I'm looking for friends with people with parkinsons
Sian Hart
· February 28, 2016
Such a great charity to support families of Parkinson's patients, my dad was diagnosed last summer a shock to us all but the charity have been such a support to my parents! We just recently ordered th...e booklet my grandad has Parkinson's to read to my children it was great and on a perfect level to help them understand xx See More
Mary Wills
· June 3, 2016
Hi , my Name is Mary and my Husband was diagnosed with "Parkinson's Disease" approximately 4 years ago although he was showing symptoms for a number of years prior to diagnosis.I as his carer , wish t...o be proactive in helping research to eventually find a cure or atleast better manage the symptoms. I plan to take part in local markets and carboot sales over the next few months and donate the profits to Parkinson's Research U.K. I hope the public will support me. See More
June Connolly
· January 30, 2018
Great source of information and support. My husband is newly diagnosed with PD.
Natasha Mason
· September 6, 2016
Thank you, thank you, thank you. I phoned your helpline today for advice and was so relieved to speak to someone who understood what we are going through. A nurse phoned me back within a couple of hou...rs. Just to chat to someone who actually listens and can give advice makes a whole lot of difference. You are fantastic! See More
Posts

"There are days when no matter what I do, my body won't work...that's Parkinson's for you. Do everything which is needed to make you stay strong." - Reg.

Yesterday, Aaron showed us the benefits of keeping up with your exercise regime. Today Reg shares how exercise helps him manage daily life and how easy it is to do at home.

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Parkinson's doesn't have to stop you doing what you love. Aaron talked to BBC Radio 5 live about life with Parkinson's and keeping active.

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BBC Radio 5 live

"My message to someone with early onset Parkinson's disease is: 'don't panic'."

Posts

"No I'm not drunk, I'm not on drugs, I've got Parkinson's." - Nicky.

1 in 4 people have had their Parkinson's confused for drunkenness, and 1 in 10 have been laughed at in public due to their symptoms. It's time to change.

Add your voice to our call for businesses to be Parkinson’s friendly. Sign the letter now.

I'm calling on all businesses to unite for Parkinson’s and roll out Parkinson's awareness training. There are too many cases where people are mistreated in shops and venues because of their Parkinson's. This is not acceptable. Join me by signing our open letter. https://e-activist.com/page/20039/p...
e-activist.com
Parkinson's UK is celebrating Valentine's Day.

"Where did we meet? It was a blind date. A mutual friend introduced us. We met outside a pub, I spilt a pint of water over him at the beginning of the date but he didn’t bat an eye. It was love at first sight.

"The secret to our happy relationship? It’s no secret, we love each other.

"For 40 minutes at the end of every day we walk the dog and talk about how each other’s day has gone, we share our worries our thoughts sometimes we talk non-stop for the whole 40 minutes. Other times we may need longer than the 40 minutes to debate an issue, but then the dog gets a longer walk." - Mark and Julia

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Parkinson's UK is celebrating Valentine's Day.

"We met at secondary school at the age of 12. We've been married now for 40 years.

"The secret to our happy relationship is mutual respect and laughter, a strong sense of humour has held us together over the years. And in the face of Parkinson’s, we have educated ourselves about the condition and treatments, we are developing good relationships with the Parkinson’s professionals and together we form a team of volunteer research speakers for Parkinson’s UK and gain a lot from ...chatting with others.

"We talk about our problems and feelings, even when it is very difficult and stressful to do so, and we listen to each other but never take ourselves too seriously!

"Keep talking to one another, listening is key. Don’t ever bottle up your feelings and be adaptable, everyone changes so don’t dwell on what you have given up or can’t do. Enjoy everything that you can do. And remember to find time and space for yourselves as individuals too." - John and Sue.

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"It's giving you confidence...it makes me feel better every time I do it." - Local group member.

It's never to late to start exercising - or push yourself to do a little more. If you don't want to start alone, a local group could be the perfect place to start. www.parkinsons.org.uk/localgroups

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Join us on a journey across the Parkinson's universe in our latest blog.

In the Parkinson’s universe, how much do we really understand?
medium.com

"I want to tackle my Parkinson's head on.

"Going into the London Paralympic games I was probably as fit as I’ve ever been. I ran the London Marathon twice without training. I was suffering with physical symptoms, like tremor, but they were fairly controlled. I would choose when to run. I would make sure I got my exercise in before I started feeling worse. I was having side effects, like most people do when they’re on medication a long time. I was on pretty much the highest do...se and I started to experience addictive behaviour.

"I went to my consultant one day and said, ‘Can we try no meds – take a step backwards to go forwards?’

"He wasn’t surprised that I’d suggested stopping the meds. He kept reiterating, ‘You know your body best.’ But ultimately it was a joint decision – I would manage my symptoms using just diet and exercise.

"To start with he was a typical consultant, if you know what I mean! He had quite a fixed viewpoint and that was it. It’s a testament to him that we’ve learned together. Because of the relationship that’s developed between the two of us, he’s prepared to try things. That’s probably been the biggest way he could support me.

"Ultimately I’d like to never have to take any medication again. I think the longer I can avoid going down that route, the better. I feel more normal not having a reliance on them. I think of myself like a rechargeable battery now – as long as I stay within the charge, I’m OK!"

- Former British Paralympic footballer Matt Dimbylow.

Always discuss any changes to your medication, or diet or exercise regime, with your consultant or Parkinson’s nurse.

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Chris shouldn't have had to deal with this, it's hard enough living with Parkinson's and even more challenging when the public don't understand.

Has this ever happened to you, or someone you know?

Mr Cartlidge's legs seized up - forcing him to drag them.
metro.co.uk

Do you know your PIP from your ESA? We've got the latest information on money, grants and benefits and advice to help you secure what you're entitled to.

Read our information online at: www.parkinsons.org.uk/information…/money-grants-and-benefits

Call our helpline to speak to a benefits adviser on 0808 800 0303

If you have Parkinson's or care for someone who does, you may have concerns about how you will manage financially. But there is support available, so it's important to find out what you're entitled to.
parkinsons.org.uk

When it comes to exercise and Parkinson's, what does the research say? Find out at https://medium.com/parkinsons-uk/search?q=exercise

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Parkinson's UK is thinking about mental health.

"I was diagnosed with Parkinson’s in 2012. For about three or four years before, I struggled with anxiety and I just couldn’t understand why I was feeling this way. I had a real constant feeling of panic. I had some movement and balance problems too and it was extremely challenging, especially at work as I was a teacher.

"For me, mental health is the least addressed part of my Parkinson’s. I understand even the term mental health is hard for so many to say, let alone discuss.

"People with Parkinson’s should feel that they can come forward. I hope that together we can raise awareness and express our fears and anxieties and for them to be heard." - Gary

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Is this really part of a major U-turn or another wasted opportunity? We go behind the PIP headlines today.

1.6 million claimants of Personal Independence Payment (PIP) - many of whom have Parkinson's - are to have their awards reviewed.
parkinsons.org.uk

For some people with Parkinson’s, freezing is a part of everyday life.

These researchers want to change that, read about the latest research at: medium.com/…/freezing-in-parkinsons-and-how-to-thaw-806d1bf….

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"It builds your confidence, it really makes a difference...Parkinson's can be quite painful, my muscles can feel quite sore at times and this loosens my muscles up.

"Exercise is essential."

Look for local opportunities to meet others and stay active at the same time at: https://goo.gl/9is2Tm

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