The 1.2% Club

When I tell people about my Parkinson’s diagnosis (read my journey so far here & here) one of the most common responses is to hope that I’m receiving support. It’s early days for me, but I am and I’m not…

Most people who get this diagnosis are men over 60. According to Parkinson’s UK, only 1.2% of people are under 50. Not the elite club I would have chosen to join. Support services are therefore tailored to that older demographic. I don’t feel like most generic Parkinson’s support groups would really be suitable or have much to offer me.

There are, thankfully, dedicated groups for people with the young-onset variety. The Glasgow group run online and in-person events for those living with the condition as well as their friends and families. I’ve not made it along to any yet but hopefully will soon. There is a UK-wide support and campaign group called Spotlight who have active forums and meet-ups around the country.

As valuable as these online networks are, the danger in engaging with them is that you see multiple stories of people struggling with medication, experiencing deteriorating mental health and battling with employers for adjustments. It can paint a pretty bleak picture of the future.

On the flip side, there is always one tale of some guy who was diagnosed at 38 but refused to let it stop him, and climbed to Everest Base Camp for his 40th birthday, leaving me feeling inadequate that I’m not raising millions for charity or trekking through Peru.

It would be good to meet and chat to someone a similar age to me. Reading the official stuff is fine, but there’s no substitute for real lived experience. I’ve been on a massive learning journey over the past few years and having people to help navigate that is crucial. I knew very little before, only snippets of information from the news or from famous people who have the condition. .

Probably the most famous person with young-onset Parkinson’s is Michael J Fox. He has his own foundation and has done a huge amount of awareness raising, campaigning and advocating.

Other people in the public eye include Alan Alda, Muhammad Ali, Neil Diamond, Bob Hoskins, Ozzy Osbourne, Jeremy Paxman and Rory Cellan-Jones. The latter two have joined with others to set up the “Movers & Shakers” podcast and have been involved in campaigning for the “Parky Charter” a set of standards they hope the government and NHS will adopt.

Billy Connolly has also been speaking in recent years about how Parkinson’s is affecting him. You can find interviews online, but the recent BBC “In My Own Words” series is worth watching.

So far, so many men… Some sources list Janet Reno and Linda Rondstadt as fellow club-members, but it turned out Rondstadt had something else.

I saw the specialist neurology physiotherapist for the first time earlier this week, who told me that she runs an exercise-based group for younger people (under 60) with Parkinson’s, so I’ll try to join the next block when it starts. There are also specific sports groups that tend to appeal to the younger end of the spectrum such as walking football and boxing. The boxing sounds fun, I used to do a martial art all through my 20s. However it’s on a weekday evening, so single parent life might prevent that.

So the good news is that support is out there, it might just take me a bit of time to find the right one for me.