My story

hello my name is Sally and I was diagnosed with Parkinson’s in 2008 at 43 years old, I have now had it for 12 years. Today I felt particularly melancholy and my daughter suggested reading other peoples stories and how it affects them she read me some stories and I was in floods of tears because so many of us have no help and there is very little understanding so this prompted me to write this about myself…
In 2007 I was training to do reflexology and massage and I had problems with my right hand which eventually ended up with my fingers swan necking And consequently I had them fused this was before diagnosis of the Parkinsons but after diagnosis I realised this was part of it. I then taught myself to write and draw left handed after having my right hand fused. I decided to take pharmaceutical drugs to better my life as I had a young family and I wanted to be the best thet I could be . I remained on these drugs for 10 years I had good quality of life doing yoga and being Able to have a pretty much normal life. I didn’t really think of myself having Parkinsons until in September 2017 I had an operation on my hand that had been fused to try and release it so I could have normal movement this went terribly wrong and my finger got a bone infection and I ended up seriously ill mainly I think from the trauma of the operation. It ended up that I was unable to walk wipe my bottom feed myself dress myself I was literally dependent on my Family and I suffered terrible anxiety and sleep deprivation. I never thought I would walk again or even be able to enjoy my life again but I am here today telling you my story and I am now recovering and getting better day by day. With the help of my family and the knowledge my son who does nutrition Has passed on to me I am getting better. When I was unwell I had terrible sleep deprivation cramps Dystonia terrible pain and rigidity in my neck and all the horrible symptoms of Parkinsons my main symptom now is immobility at times and low moods . I know it’s very difficult to get help and I’ve been very fortunate to have people who know how to help me and my main reason that I have managed to recover is through diet. When you go to neurologist they don’t tell you about diet they just give you the pills and see you in six months if you’re lucky. My diet has changed completely no dairy no gluten at least 2 L of water daily no coffee no alcohol and very little sugar if possible just in fruit I know this probably sounds boring and with Parkinsons you like to have a little treat but it’s really not worth it because doing this diet has meant I’m able to walk again and not suffer all the terrible things I was suffering. There are also many treatments out there that will help with your Parkinsons Accupuncture cranial therapy and Bowen Are just a few. Many people have said they have trouble sleeping I was only sleeping about an hour a night after my operation I now take melatonin every night and I get very good sleep I wake once in the night to go to the toilet and if I struggle to get back to sleep I take another melatonin. I do still struggle some days are better than others i find trying to stay positive and smile some days isn’t always easy but I just think back to where I was 2 years ago and where I am now staying positive isn’t easy but it helps. Parkinsons tends to make you feel like a prisoner and like you have lost control of your life (this is really hard to accept)but we can make it better and more liveable with help and determination . Thanks for reading my story x


Hi Sally 54. Welcome to the community.

So sorry to hear about all you’ve been through, but good to know you have a supportive family around you. You also seem to have found a treatment regime that works for you, and it’s good to hear that your symptoms have improved as a result.

We’re a very friendly bunch here, and you’re sure to get lots of good advice on any subject you choose to discuss. You might also like to contact our Helpline from time to time, as they’re also able to offer information and advice on a wide range of issues affecting Parkinson’s patients and their families. You can reach them via email at [email protected], or call free on 0808 800 0303. Lines are open Monday to Friday from 9am to 7pm, and on Saturday from 10am-2pm.

Hope this helps.

Best wishes,

Moderation Team

Dear Sally54 all I can say is that you’re an inspiration. I’ve only had PD diagnosed July 2016 aged 56.

All I wanted to know is how other people deal with the disease and coming to this forum is more helpful than any literature I’ve read (and believe me I’ve read a few) :blush:


K x

Thankyou for your kind words I’ve only just started reading the forum after having Parkinsons for 12 years But I do find it really helps I’m glad it’s helping you I have also read lots of literature but I have found diet and exercise are the key and meditation and a really positive state of mind also really helps but this isn’t always easy as you know some days are better than others I think the biggest challenge is loving yourself and being happy which is also challenging. Laughter really helps and my children help with this as they find humour in my difficulties which makes me laugh a lot.
Love and blessings
Sally x

Dear Sally54

I’m lucky in that my employers have been brilliant and it keeps me having this structure. I currently work 30 hours a week over 5 days but am thinking about reducing these hours to enable me to have wed6off as I find by the time Friday comes round I’m totally exhausted. My kids have grown up so I only have my OH to worry about :blush:

On a further note , he worries about me more than I do him x

Hello sounds like you’re doing amazingly well I think giving up a day would be great for you give you some you time :grinning: my family also worry more about me than I do it’s great you have such a loving OH :blush: