Have Your Say – Parkinson’s Groups Provide Great Support


On Tuesday 18th June the younger onset Parkinson’s group enjoyed a BBQ in one member’s garden. It was a lovely evening.

The group was started in 2012 when I was diagnosed with Parkinson’s age 44 years old. It was a huge shock and I felt very anxious.

I contacted the local Henley Parkinson’s UK group chaired by Dr Terry Dudney, he put me in touch with Simon Challis who had also been diagnosed in his early 40’s. Simon was brought up in Henley. Meeting Simon was a great support, he had a young family and was working full time like me. He made me realise that life with Parkinson’s could still be full filling.
Twelve years on we are both still attending the group and now have 15 regular members.

The group meet once a month in a local pub and we have a Christmas meal out and a summer BBQ. We range in age from 45 to 75, some are retired some are still working. We use a group chat to update each other with updates on medical issues and things that we want to share about Parkinson’s disease. Three of our members have undergone Deep Brain Stimulation.

For people who prefer to meet in the mornings, the local Parkinson’s UK group meet one a month on a Wednesday morning at the Christchurch Centre in Henley. Their point of contact is Jenny Seaman jennys.parkinsonsuk@gmail.com.  Carers are welcome. There are guest speakers and boat trips. I am on the group committee so I can share information with the younger onset group.

If anyone is interested in joining the younger onset group I am more than happy to meet for a coffee beforehand. It can be a little daunting attending a new group for the first time. Feel free to phone or email.


1 comment
  1. Caroline McGaughey says:

    My Partner, who is 66 years old, was diagnosed with Parkinson’s disease last year. We noticed that he was experiencing hallucinations, slow movement, disturbed sleep, and twitchy hands and legs when at rest. He had to stop taking pramipexole (Sifrol), carbidopa/levodopa, and 2 mg of biperiden because of side effects. Our family doctor recommended a PD-5 treatment from natural herbs centre , which my husband has been undergoing for several months now. Exercise has been very beneficial. He has shown great improvement with the treatment thus far. He is more active now, does more, and feels less apathetic. He has more energy and can do more activities in a day than he did before. As far as tremors I observe a progress, he improved drastically. I thought I would share my husband’s story in case it could be helpful, but ultimately you have to figure out what works best for you. Salutations and well wishes


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