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My Parkinson's Journey Blog 2

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Wildrover
My Parkinson's Journey Blog 2

Early 2013 – The Gift

According to the NHS website Parkinson’s Disease is described as: “A condition in which parts of the brain become progressively damaged over many years: The three main symptoms of Parkinson’s disease are:

• Involuntary shaking of particular parts of the body (tremor)
• Slow movement
• Stiff and inflexible muscles

The cause of Parkinson’s is the loss of nerve cells in a part of the brain called the substantia nigra. This leads to a reduction in a chemical called dopamine in the brain”.

In fact between 50% and 80% of dopamine will actually be depleted before any symptoms appear.

Not good reading hey! Well it isn’t for me anyway. The day I was diagnosed, my world fell apart and as mentioned in my previous blog I wanted answers.

Early in my diagnosis I was advised to read the book “Lucky Man” by Michael J Fox. I was told it would help me come to terms with the diagnosis by reading the story of a truly inspirational man that was diagnosed with Parkinson’s at a very young age (29). It did. In his book Fox talks about messages and gifts. Things that Parkinson’s had given him and I am going to use some of those analogies in this blog as they do relate to me and probably every other person on the planet who has been diagnosed with this awful disease. However me having a dry sense of humour may mix up the term gift with “Good Gifts” and Bad Gifts”, throughout these series of blogs.

Bad Gifts being pleasantries such as:

• Depression and Anxiety
• Constipation
• Loss of smell
• Problems sleeping
• Memory problems

All of above the average person doesn’t see.

However for this blog I want to focus on a “Good Gift” that Parkinson’s did give me, although I absolutely had no idea that it was from Parkinson’s at the time. It started with a very subtle “Hello I’m here” message.

All my life I have been active, it has more or less been programmed into me, being a former soldier it was mainly due to professional reasons (all part of the job) and now has a civilian the goal being, to live a long and healthy life. To this end I am an active member of my local gym and go on an almost daily basis. I have never been into the lifting weights thing like a lot of young men you see in a lot of gyms, working out for the sole purpose of vanity. I am more interested in cardio fitness improving my stamina, heart and lung health. To this end the main machine I tended to make a beeline for was the tread mill.

It was on the tread mill on a February day in 2013 that something very odd happened. I would more often than not do a 30 minute session on the treadmill at a steady running pace. However at about the 10 minute stage and whilst running my left leg felt weak and was threatening to collapse under the weight of my body.

“WTF” as the saying goes.

I immediately slowed down to a walk slightly shocked at what just happened. The weakness quickly evaporated and I then carried on at a running pace. Five minutes later the same thing happened again. I cut the session short after that and to be honest didn’t think much of it.

In his book Michael J Fox opens the book with Chapter One – A Wake-up Call in which he says this:

“I woke up to find the message in my left hand. It had me trembling. It wasn’t a fax, telegram, memo, or the usual sort of missive bringing disturbing news. In fact, my hand held nothing at all. The trembling was the message”.

Although I didn’t know it at the time my sudden leg weakness was my Wake-up Call, my “Hello I’m here” message.

Over the following few months I learned that my leg weakness episode was not just a one off phenomena, it was real. I changed my routine to interval training where I would sprint for a minute and walk for a couple, which seemed to work, it gave me a decent workout whilst overcoming the problem of not actually being able to run properly.

It was all very weird as I was more than capable of literally walking for miles without any issues. It wasn’t even something that you could report to a doctor or even tell a friend. What do you actually say “Hi Doc, can you have a look at my left leg its doing some weird **** at the gym”.  In the end I just put it down to the ageing process and moved on.

Nevertheless the running thing did leave a small gap in my life and I did ponder on how I could fill it, “What about buying a bike”, no the roads are a death trap. “What about hiking”. Now there’s an idea. I’d been contemplating for some time the idea of climbing mountains and this spurred me on to take it a bit more seriously and not just talk about it, but do it.

Satnam was a member of the team I worked in at a large Global IT Company and we would frequently meet up at the company’s UK Headquarters in the south of England. An Indian lad with a great sense of humour that I clicked with almost immediately when we first met. We both loved a few beers and more importantly we enjoyed moaning about the company and some of the morons we had the displeasure of working with. It was a match made in heaven, ha ha. Over a few beers we would often talk about climbing a mountain such as Ben Nevis but that’s all it ever was, talk. We decided to take action and both agreed that we would climb Scafell Pike in June 2013, the highest mountain in England.

I’d done most of the planning, bought the map, printed off the route from the internet and booked the hotel, The Wasdale Head Inn, which is more or less at the foot of Scafell Pike.

The day started off damp and drizzly but the clouds soon lifted and it turned into a glorious summer’s day.  Satnam started at a blistering pace and although I’d not done this sort of thing for many a year, my previous military training kicked in and I persuaded Satnam to slow down. The goal was to reach the summit, not crash and burn half way up.

The route I’d printed off the internet would take us off the tourist route and up a path named Mickeldore, it was described as a more adventurous route up the mountain. It wasn’t wrong. I can remember checking the map then looking up, then checking the map, then looking up. “Is that supposed to be a path”? “Well the map says it is”!  All I could see was a very steep climb with scree and loose rocks in the way. Nevertheless I did have a little faith in my map reading so we kept going.

It was scary and exhilarating. Scary in the sense that “little faith” in my map reading was exactly that, a little and I had no idea what was to greet us once we got to the top, maybe it was just a sheer drop? Exhilarating in that it was a challenge and something you wouldn’t normally do. I was loving it. I can’t speak for Satnam as when I looked down at him he didn’t look to happy! ha ha. I kept thinking to myself, I don’t think we can come down this way, it would be far too dangerous. One day in the not too distant future I would but that’s another story!

Anyway we made it to the summit of Scafell Pike and it was well worth the effort, I was hooked immediately and was kicking myself why I’d waited all these years to actually do something like this. Don’t get me wrong we did stuff like this in the army but I was a lot younger then and just didn’t appreciate it.

The views were absolutely breath-taking and both myself and Satnam felt an over whelming sense of achievement. After the obligatory photo shoot and back patting we made our way down the mountain. Satnam was up for taking a completely different route down after speaking with some fellow hikers but I wasn’t in the mood for getting lost. I also knew from my army days that going downhill is just as difficult as going up so to potentially add more miles to the task wasn’t an option for me. We opted to go down the well-known tourist route.

The route down as I predicted was hard going, it’s amazing the strain it puts on your knees and ankles but we made it and hobbled in to the Wasdale Head Inn bar and swiftly ordered a couple of cold beers.

We took a seat outside the bar next to an idyllic stream and savoured the moment. What a fantastic day it had been. Life was good, very, very good.

Over the next few years I would embrace my new found hobby making new friends and re-establishing old acquaintances along the way.

I truly believe that this was a Parkinson’s gift, if it had not been for my leg weakness issues I would have never climbed Scafell Pike that day and never have had the experiences I have had whilst out walking.

We all know Parkinson’s isn’t about dishing out lovely gifts. It was to rear its head again but this time it would not be a good gift but a bad one……………………………….

To be Continued
 

Joanie

What a wonderful experience and well done for conquering the mountain climbing. You’re very brave. 

Si Mc

Thanks  Ian, I'm really enjoying reading your blogs :-)

The Wasdale Valley is one of my favourite  parts of the world, we used to live nearby and my wife worked at the Wasdale Head Inn. Well done for conquering the mountain!!

I've been working through a similar thought process since my Dx in October. I need to get more exercise, but I've never been much of a runner (always felt more of a chore than enjoyable). I don't fancy Tai Chi or yoga, or anything that involves wearing lycra!

So..... I've taken up Archery.

I've wanted to give it a go for years, but never got around to making the time for it. Until now. And I love it.

I know it's not the first sport that comes to mind when you think about exercise, but I can already feel some muscle tone returning in my shoulders, arms back and chest, it's low impact and you work at your own pace. After a two-hour shoot last night I'm aching a bit this morning, but my step counter logged just under 4km walking back and forwards to retrieve my arrows from the target  (or, more often from nowhere near the target!!).

Thanks again Ian... looking forward to Episode 3 big grin

Helenl

Hi Wildrover

I read your blog with interest , i retired as a staff nurse May this year after 35 years of nursing, i had had weird symptoms for couple of years. Saw a neurologist June who delivered the diagnosis of parkinsons that would change my life forever ....some retirement present !!!! I have read to the endth degree convinced that I will get dementia , the book you mentioned by M J Fox sounds worth a try. Lifes what happens while your making other plans !!!

 

Prof.

Hi Ian 

Fantastic piece of prose my friend, have you considered writing a book? As a professor of English Literature I think you should put your blogs into one concise piece of literature, I'm sure you would not only sell may thousands of copies, but also give inspiration to many, many people.

I am looking forward to reading your next blog !!

Wildrover

Hi Prof, thankyou for your kind words. Never really thought about it to be honest. I have never in my life done anything like this before. I just wanted to put things in writing to try and unravel in my mind how I reached my diagnosis. I have read that Parkinson’s can sometimes bring out the more creative side in people. Maybe this is mine!!, Another gift perhaps lol

Clemmo

Hi Wildrover,

Just read your blog, very inspirational well done you, you are so right it was a couple of years back when I suddenly had to stop doing things or should I say doing things  with less vigour than before I have always been really active put it down to getting older .funny old things our bodies it obviously new PD was on its way,

 

C x

Helenl

HI looking forward to next instalment , really enjoying the blog.