Parkinson's Disease: "Find something to do that you will ENJOY"

Hi Rob,

Thank you for agreeing to tell your story to the Carenity audience.

First of all, could you tell us more about yourself?

I grew up in the South of England. I came to Leeds (Yorkshire) as a student in the early 80s, liked it and stayed!

I don’t have my own children, but have a step-daughter and grandson (aged 12) who both live in Leeds. I live on my own, but just a bus ride away from my partner Kerry, who is hugely supportive to me.

I’m still working, though just 3 days a week. I’ve spent all my career working in the voluntary (or ‘not for profit’) sector, in various fields, including development education, mental health and, for many years now, communications work supporting the rights and independence of older people in the community. I also do a small amount of voluntary (unpaid) work each week - ‘telephone befriending’ with a couple of local older people who were at great risk of social isolation when the pandemic hit. I like spending my time at the cinema, with friends, cooking, travelling, playing ukulele in a band, and playing (particularly badminton and table tennis) and watching sport (especially cricket). I also have a very strong interest in languages.

Playing ukulele with Music From the Attic, Kirkstall Festival.

When were you first diagnosed with Parkinson’s Disease? What were the first symptoms? How many doctors did you see and what tests did you have to take?

I was diagnosed with Parkinson’s Disease in July 2019 but, as with so many people living with Parkinson’s, that was not the beginning of my story. I now know that there were a number of early symptoms; most obviously a tremor in my left hand, but also including increasingly small, unintelligible handwriting, a constantly runny nose and one dramatic leap out of bed! But how many of us know that these may be symptoms of Parkinson’s?... until we know!

Kerry was aware of my mild tremor from when we first got together, in 2015. I don’t remember it before then, but I would guess it’s likely that I had Parkinson’s for at least five years before being diagnosed.

Kerry encouraged me to see my GP, who I think suspected Parkinson’s and referred me to a neurologist. I saw him twice, with Kerry, months apart. While I don’t really remember what tests I had, I think they included things like walking round the room, and finger tapping, which have since become very familiar. He said I didn’t have Parkinson’s, which was a great relief, but that I had an ‘essential tremor’. I’d never heard of this, but it sounded like a must-have fashion accessory!

How were you told about the diagnosis and how did you feel about it? Did your loved ones support you? Was it easy for you to talk about the disease to those around you?

‘How were you told about the diagnosis?’ is a very good and important question. I was told in what felt like a very casual way, and actually had to ask for clarification to get “Yes, you’ve got Parkinson’s”. I was also on my own; having previously been told that I did not have Parkinson’s, I was fairly clear that the worst likely scenario was that I should start medication for my essential tremor. So I didn’t need Kerry to come with me.

I now know that the way people are told their diagnosis, of Parkinson’s and other major health conditions, is a common complaint. The point of diagnosis is such an important milestone on the Parkinson’s journey. I wish health professionals would recognise that and improve the way they do it. I was also annoyed that the consultant immediately said “We’ll put you on medication”, and went on to warn me, in a jokey way, about possible side effects, when I was still stunned by the diagnosis. It wasn’t the right time to tell me that. In fact it wasn’t even the right time for me to start medication!

I had nothing but support from my loved ones, friends and colleagues. Kerry immediately said: “I’ll be with you all the way on the journey”. I’ve thought a lot about the process of ‘coming out’ to people about Parkinson’s. We all have our own closets to hide in. I think it’s important to be open about having Parkinson’s, both because it helps me as an individual, and also it helps to make it visible and reduce any stigma. When you do tell people about Parkinson's, I’ve found the vast majority of people to be extremely supportive. I would encourage people to be open about Parkinson’s, while controlling as far as possible when and how you do that.

How did the illness evolve over the years? What were your treatments? Have you had to adapt your lifestyle? If yes, in what ways?

I used to see the word ‘progressive’ as inevitably positive; but that stops when it describes a disease! Parkinson’s keeps changing, and it’s very individual. It is now widely accepted that there are at least 40 possible symptoms (and I’ve seen higher figures) I haven’t counted how many of those I’ve developed in the last few years. Some come along, and move past me. For example there was a period of a few months when I frequently had a bad back. That’s no longer such an issue, but other things - including stiffness, particularly in my shoulders, and anxiety, which has increased recently - have quickly followed. I know that my symptoms are likely to worsen, and new ones develop. I don’t mind saying that this is a scary prospect.

I held back from beginning medication for quite some time after being diagnosed. My symptoms were quite mild and there was no evidence that the medication was at all ‘protective’. So what was the point? I believe that the medication I am now on is helpful - but how do I know? How can I know what life would be like without the meds?

‘Treatment’ is quite a narrow word, and it’s so associated with drugs. But such a lot of activity, that is effective for Parkinson’s, is non-pharmaceutical. It is now extremely well recognised that exercise is one of the things, in fact probably the only thing, which can slow down the development of Parkinson’s. I’ve never been motivated to do Exercise of the capital E variety - cycling machines, weightlifting, circuits… But put a ball in front of me and, since I was very young, I will chase/hit/head/catch/kick/throw it, just as enthusiastically as I’ve always done. So I’ve come right back to playing table tennis and football (in this case ‘walking football’.) I was already playing badminton once a week. I’m confident that these are all really good for me and I enjoy them, which is so important.

I don’t think I’ve adapted my lifestyle very much since being diagnosed. Yet! It’s been important to get on with my life.

With mixed doubles partner Mayumi, at the Ping Pong Parkinson’s
World Championship (in Pula, Croatia) where the pair won a silver
medal. (Photo by Sanjin Strukic, Pixsell.)

How has the disease affected your professional and personal life?

I work in a small organisation which is very supportive, individually and collectively, of what I’m going through. And we all have a lot of flexibility. Even so, we’re going through a review of how Parkinson’s affects my work, and what the organisation can do to help me to keep working. The aims are good, but talking about it all increases my anxiety. I have less mental energy for work than I used to, and take on less responsibility. I think that’s what I need to do, but I end up feeling less skilled, less in touch.

My personal life feels different. For one thing I talk and think about Parkinson’s a lot, probably too much. I notice and wonder about possible new symptoms. I write my blog. I engage on Twitter.

I worry that it’s too much for Kerry. As well as which she has taken on a variety of roles: she reads a lot (particularly the excellent Exercise in Action group), often helps me put on my left sock (but just the left one!) and my coat, butters my toast, and she has spent days at UK table tennis tournaments, and far more days, all of which she enjoyed, at the Parkinson’s world table tennis championships in Croatia.

But I, and we, are conscious of doing things we want to do, and doing our best to enjoy life, maybe more than we focused on before.

You are the creator of the blog – “Parky Boy”. What messages do you want to convey to your readers? How did people respond to it?

I thought about starting a blog about living with Parkinson’s very soon after being diagnosed, but at the time I didn’t know if I had anything to say and felt it would be self-indulgent! Then, when Covid-19 was hurtling towards us, Kerry and I happened to be novelty practitioners of ‘self-isolation’, having just returned from northern Italy, before most people were even aware of the concept. I was encouraged to write a personal blog for work about the week. I enjoyed writing it, was happy with the result, and it was really well received. It made me feel that I could write. A colleague asked if I’d thought about blogging about Parkinson’s. A few months later I built ParkyBoy (parkyboy.wordpress.com).

I hesitate to talk about ‘messages’ I want to ‘convey’ to my readers. I realised that I write, first and foremost, for myself; to try and make sense of being on this unplanned, unwanted journey. And maybe just because I need to talk about it, and ParkyBoy is one way of doing so. I see it as a bonus if other people feel less alone, or get new insights, from reading ParkyBoy. If I can write with honesty and integrity about topics on or close to the Parkinson’s road that interest me, there's a good chance that some other people will be interested too.

So in ParkyBoy I try to:

• write about ‘how it feels’ more than about clinical procedures
• be positive, but not relentlessly so, and not at the expense of reality or my own ‘truth’
• continually show that there is more to life than Parkinson’s.

The topics tend to be about things like how society, identity and language relate to PD, and what I do on my personal journey, rather than whether X medication works effectively (though I do a bit of that too.)

I get plenty of very positive responses to my blogs, which is always encouraging. Writing ParkyBoy has also led to me feeling part of a global community, on Twitter and websites, who share, very generously, their experiences of PD.

You have participated in the Parkinson’s UK First Steps program. Could you elaborate on your experiences and how it helps people with Parkinson’s?

Yes, I did take part in first steps and it was very useful. It took too long to happen, as they worked towards using Zoom, so it was over a year since I was diagnosed. It was driven by people living with Parkinson’s, as is so much in this world. That gave it a lot of credibility. It was very good to ‘meet’ other people with Parkinson’s. And there was a lot of information. It was a very positive experience for me and for my partner Kerry. The good people running it have continued to develop it.

Do you believe that there is enough being done to increase awareness about Parkinson’s Disease? How difficult/easy is it for you to make people understand about the seriousness of the condition?

While it would be easy to say that not enough is being done to ‘raise awareness’, I sometimes think what is the point of raising awareness? Would it make any difference? But I think it can:

• The earlier people are diagnosed (and we know there are many signs there to be spotted) the earlier they can change their lifestyles, particularly with respect to regular exercise.
• It may increase resources that go into research.
• Learning more about ‘hidden disabilities’, including Parkinson’s, should help to reduce discrimination and increase accessibility. Understanding that there’s a huge range of symptoms is a key part of this.

What are your plans for the future?

Hmmm… well I need to have a think about that one! I intend to:

• Keep working while I can
• Stay active
• Set up a local Parkinson's table tennis group, to enable more people to benefit
• Keep writing my blog, as long as I have something to say
• Continue to travel, go to the cinema, play badminton, cook for my friends, and do all sorts of other things that have nothing to do with Parkinson’s!

Finally, what advice would you give to Carenity members also affected by Parkinson’s Disease s?

Everyone is so different, so I’m reluctant to give ‘advice’. But I guess I’m qualified to do so from my own experience. I suggest:

• Find something, or preferably some things, that will keep you mentally and physically active, that you will ENJOY. It’s the most important thing you can do.
• Always remember that you have choices, even if the choices are difficult. Be curious. Clinicians frequently disagree with each other. That means that whatever one neurologist says, another may say something different. That means there is not always a right answer. You need to work with clinicians to find the best route from what is available.
• Find the best way for you to learn from, and share with, ‘peer support’. It complements our relationships with clinicians, and is perhaps just as important. For me it’s been through finding a ‘community’ on Twitter, sharing my thoughts by blogging, and getting to know real people through table tennis and walking football.
• Get on and enjoy your life. Do things and spend time with people that have nothing whatsoever to do with Parkinson’s!
  
  
  
  

A big thank you to Rob for this interview!  

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