Easy Like Sunday Morning

Exercise is never an option for someone living with Parkinson’s. It has been shown time and time again to ease a wide range of symptoms, improve mood and it is thought to slow progression of the disease down. It is the single biggest thing we can do to help ourselves. If a neurologist told me there was a pill which could do all of these things, then I’d do whatever it takes to get hold of this ‘wonder drug’.

Even with this knowledge, there are times when I might prefer to curl up on the sofa rather than get up and go. I rarely let my desire for the latter win but despite the rewards, it not always easy to maintain the motivation, day after day, month after month.

As well as developing a love of cycling, I’m lucky to have a large group of friends to cycle with. Exercising with others makes it fun, sociable and so much easier to do. Inevitably, I go further and faster when I’m out with others.

The same is true of the gym where I share a personal training session with a friend who also has Parkinson’s. Again this makes it more fun and we inevitably spend some time afterwards checking in with each other. Making that commitment to exercise with someone else means I’m much more likely to maintain that commitment to avoid letting anyone else down.

Sunday mornings have become a favourite fixture in my diary. Amongst our friends, there is a small, well established group who cycle every Sunday morning. When training for our Raid Alpine change we were invited to join them and since then, Sunday mornings have, whatever the weather, become physically challenging, socially rewarding and our knowledge of the best cake and coffee stops in Gloucestershire and beyond has become second to none.

Thank you to these wonderful friends for making it ‘Easy like Sunday Morning’.

Who Knows?

In a recent blog ‘The Elephant in the Room’, I commented on the fact that when we are out together, people often ask my husband how I am, rather than ask me. A very astute observation by my husband was that ‘I don’t mind being asked about you, but I am not always sure I say what you would want me to’.

We’ve been together nearly 30 years. No-one knows me better, so surely he has some idea about what I would want him to say?

So, I got to thinking, maybe just occasionally, he doesn’t listen to me, maybe he doesn’t ever listen to me! Maybe I don’t tell him or maybe I don’t explain myself very well. Maybe Parkinson’s is just difficult for anyone not living with it to truly understand. Maybe it’s inevitable that his version will be different than mine as he’s seeing it from a different perspective. Maybe as a doctor he finds it all too easy to slip into a medical role discussing my symptoms with friends as though he were at work discussing a patient with colleagues.

Any of these might explain the difference in our respective responses and I suspect there may be an element of truth in each of them. However, another, more likely explanation is the complex and variable nature of Parkinson’s, means that symptoms differ day to day. No two days are ever the same and even if they were, how I feel about them changes day to day. Some days I want to talk about it, some days I don’t. Some days I give into my symptoms and take it easy and some days, I carry on regardless. Some days I can laugh at myself, other days I get frustrated. Some days I have boundless energy, some days I have hardly any. Some days I can manage after three hours sleep, some days I can’t keep my eyes open. There is no way of predicting, no way of knowing. This is part of the challenge of living with Parkinson’s and undoubtedly part of the challenge of living with me.

So, to be fair, no matter how hard he might try, my husband really does find himself in an impossible situation. If Parkinson’s is so unpredictable that I never know how I will feel or what I would say, he certainly hasn’t got any hope of getting it right!

Walk a mile…….

‘Before you judge a man, walk a mile in his shoes’

For many years, a gentleman would walk past our house each day. He occasionally looked up but rarely smiled, waved or spoke. After a while I concluded, despite his relative young age, that he was a ‘grumpy old man’.

One day he stopped by our gate and asked me, rather abruptly, to cut back a branch from a tree in our garden that was overhanging the pavement. He looked unfriendly, stern even, he never smiled and our conversation was short. I cut back the offending branch later the same day. The gentleman continued to walk past our house each day, never smiling or speaking and rarely acknowledging me. As before, I would smile and wave and think of him as a ‘grumpy old man’.

Over the next few years the gentleman walked past our house less and less frequently and more and more slowly until eventually I didn’t see him walking past at all.

I saw him some time later and spoke to him and his wife. I had been diagnosed with Parkinson’s for a couple of years by this time. I remarked that I hadn’t seen him walk past for a long time. When he tried to reply, his speech was so poor that I couldn’t understand him. His wife explained that his Parkinson’s had progressed so much in recent years and after many falls, he rarely ventured out of his home.

In an instant I realised my assumptions about the ‘grumpy old man’ were entirely wrong. The ‘grumpy old man’ was fighting a battle every day to maintain his independence. His walk down our street was fraught with difficulties requiring all of his attention to navigate them safely. He was challenged by his poor balance, stiffness and uneven gait. The overhanging tree branch was just one more unnecessary obstacle to navigate.

His expressionless face was not that of a ‘grumpy old man’ but one where Parkinson’s had stolen his ability to smile. His lack of a wave was because he could not maintain his balance if he were to look up and raise his arm. He didn’t speak as he passed by because he was concentrating so hard on simply staying upright. His daily walks past our house were part of his exercise regime, aimed at keeping him mobile for as long as he could, until Parkinson’s made that impossible too.

The many challenges that people with Parkinson’s face every day when undertaking the simplest of tasks are often not visible to others. I hope by raising a little awareness of the nature of these challenges that I and others might avoid being labelled a ‘grumpy old man’!

‘Before you judge a man, walk a mile in his shoes’

The Elephant in the Room

I’ve been pondering………

Parkinson’s can sometimes feel like the elephant in the room.

Image Source: rawpixel.com

Sometimes after meeting a friend, I realise that we have discussed life, the kids, the universe, my friend’s health, the health of our respective ageing parents but not my health. I sometimes wonder if I don’t make it easy for people to ask about my health or if the significance Parkinson’s as a progressive, degenerative condition makes it too uncomfortable for some people to acknowledge.

During my pondering, I wondered if some of the other reasons people might not ask me are:

  1. In case I have forgotten that I have Parkinson’s and the question might be an unwelcome reminder.

2. In case I might actually tell it how it is and that could take some time!

3. In case I break down and cry and that would just be plain awkward.

4. That I look well, it is easy to assume that all is well.

5. Because they have forgotten I have Parkinson’s or underestimate the significance of it.

6. Because they have asked my husband instead.

7. Because they may feel too embarrassed or awkward to ask.

8. Because they would rather not know.

9. Because they feel it is not the right time or place.

10. Because there are many more fun things to talk about!

I rarely talk about Parkinson’s unless asked. There are indeed many other more fun things to talk about but Parkinson’s is life changing. It is with me every second of every day and so, whether I like it or not, it has a major impact on my life.

I have lots of friends who ask regularly and I’m touched by their concern. Whether people ask or not, many show their concern, friendship and compassion in other ways. I completely respect that people may choose not to ask but I would urge people not to refrain from asking out of concern for any of the reasons above.

If the shoe were on the other foot, I might be concerned about any or all of the reasons above and avoid the question too. Indeed, I have done at times in the past. But now the shoe is on my foot, I would urge you, if you are interested, to simply ask me. There is rarely a bad time, you won’t be reminding me of something I’ve forgotten, I won’t dissolve into tears, I will try to keep it succinct and we can then move onto more fun topics! I don’t need you to ask every time we see each other but it need not be the elephant in the room either!

Image Source: rawpixel.com

Lessons Learned

I’ve learned that, understandably, many people can’t imagine what living with Parkinson’s is like, so this is my attempt at welcoming you to my world…..

I’ve had to learn to create lists for everything (sometimes multiple lists for the same thing) and yet discover it is still possible to forget things!

I’ve learned not to carry a glass of wine in my right hand if I want to keep any for drinking but my left hand manages fine!

I’ve learned that I have to reapply for my driving licence every three years and I can never assume it will be renewed.

I’ve learned to be patient, that many things take longer to do but I get there in the end!

I’ve learned the hard way that chopping vegetables can be a dangerous pastime for someone with Parkinson’s!

I’ve learned that I can only do one thing at a time and that multi tasking is a thing of the past.

I’ve learned to avoid buying shoes with laces or it can take me all day to tie them!

I’ve learned to survive on three hours sleep (and cat naps during the day)!

I’ve learned that every day (sometime every hour) is different. I never (thankfully) have all of the 40+ symptoms all of the time but I always have some of the symptoms all of the time. There appears to be no way of predicting which will occur, when. It’s a guessing game. The unpredictability adds another level of complexity to living with Parkinson’s.

.

What’s New?

In the five years since my diagnosis of Parkinson’s I have learned a number of new skills to help me manage an ever changing range of symptoms associated with the condition. These new skills include:

Yoga

To combat the stiffness, rigidity and reduced range of movements.

Boxing

To improve my balance, co-ordination, response time and speed of movement.

Cycling

To improve my balance, cardiovascular fitness and my brain! There is evidence that cycling can help improve symptoms and may delay disease progression.

Mindfulness

Anxiety and depression are very common symptoms of Parkinson’s so I’ve learned and practice some of the basics of mindfulness to try to keep one step ahead.

‘You can’t stop the waves but you can learn to surf’ Jon Kabat Zinn

Playing Bridge

Learning a new skill is thought to be helpful in combatting cognitive problems associated with Parkinson’s such as problems with memory, concentration, inability to multi task, problems with decision making, thinking and planning. Learning to play Bridge was my new skill last year. I’m still learning this year and probably next year too!

Challenge? What Challenge?

Determined not to allow our hilly cycling to be thwarted by the cancellation of both our Alps challenge in June and our modified Alps challenge in August, we set off to conquer some UK based roads and hills instead.

This week was…

  • Not quite the Alpine challenge in terms of people. From the original group of 46 – we are now five!
  • Not quite the Alpine challenge in terms of the original 800km – we covered 400km.
  • Not quite the Alpine challenge in terms of hills, originally 19,000m of climb, we covered 5,000m of climb and trust me, that was enough!
  • Not quite the terrain our new aero road bikes were designed for!

The British late summertime brought heavy rain, flooded roads, a rare glimpse of sun and some strong winds. Add some interesting route planning, the rough off road terrain in some sections and getting lost and it’s safe to say, we still had a few challenging times!

Day 1 and Day 2 C2C

Travelling as a group of four for the first two days and taking it in turns to drive the camper van, we cycled our own route based loosely on the iconic Coast 2 Coast route. Amongst a number of hills, this saw us climb Whinlatter Pass and Hartside. Having cycled these two climbs twelve years ago, I was encouraged that they felt easier, faster and more fun than I remember them being. These climbs haven’t changed so despite getting older, I can only assume we have got fitter and faster.

Day 3

Meeting up with Ewan today, our first day cycling together was thwarted by torrential rain. Ewan and John managed an impressive 50km, I did a quick 12km and that was enough and the others, opted for the dry, warmth of our lovely, quirky accommodation at Bertie’s of Otterburn.

Day 4 Coast to Castles

Keen to cycle some of the beautifully scenic North East coast of England, we tackled some of the Coast to Castles route. An apparently stunning route, unfortunately, we had an overly ambitious distance to cover, we got lost, separated and found ourselves either alongside the A1, with no coast and no castles, or on a cliff edge track not compatible with anything other than the most robust mountain bike! Recurrent punctures on John W’s road bike were testament to the fact that these tracks were not road bike friendly!

We passed briefly by Alnwick, Bamburgh and Warkworth castles and enjoyed a brief stop on Holy Island having crossed the causeway. It was a great effort by everyone but ‘Hardly Any Coast to Hardly Any Castles’ is perhaps a better title!

A few learning points from today:

  • Plan a realistic route that allows time to stop and enjoy the experience
  • Plan a route that follows roads and paths, not mountain bike trails!
  • Follow the route!
  • Stay together!

Day 5 To the Pub!

A less ambitious plan today. A stunning route from our base to a local pub, making today’s cycle a real success. 25 miles of remote, unspoilt, virtually traffic free, rolling hills, a warm, wonderful pub lunch with local beers just as the rain started, and a quick 9 mile, predominantly downhill ride home. Perfect!

Day 6 The Borders

With Ewan heading north to home, we were four again. Some interesting, scenic, remote cycling today as we travelled from Otterburn to Eaglesfield, near Lockerbie, driving one leg of the journey each and cycling the rest. Crossing the border into Scotland for a brief period. Arriving at our last accommodation in time for a celebratory glass in the sunshine.

Day 7 A Relay Home

To facilitate some cycling on our route home, we split into pairs today, driving 25km and then cycling 25km. For my part, I cycled the most stunning route across remote undulating roads, encountering a waterfall, long downhill stretches and some very challenging uphill sections, more undulating countryside and flooded roads followed by a canal path and a well timed pub stop before the final drive home.