Me, firefighting and PD


#1

Hello all, this is my first ever go on this site / forum and by way of an introduction i thought i'd start with a piece I wrote for my former work's in-house magazine about the end of the career I dearly loved and was devastated to leave (published May 2015).

Here goes... (it starts with an introduction from the editor)

Steve bids Service farewell and talks about life with Parkinson's

STATION Commander Steve Elve has bid farewell to Cambridgeshire Fire & Rescue Service having served operationally for 27 years.

For some years now, Steve has been living with Parkinson’s, having been diagnosed in 2011. As we wish Steve all the very best for the future, he has written about life with Parkinson's, something he was keen to share with everyone. Here are Steve's words:

"There’s nothing extraordinary about the walk from Addenbrooke’s Hospital to Babraham Road park and ride, but there was on May 17, 2011, four days before my 42nd birthday. The route, as those that know it, is flat and non-descript which matched my mood perfectly as I reflected on the news I had just received.
For some years my left arm seemed to be reluctant to follow instruction and be more occupied with pain and numbness than strength and control. I had noticed that washing myself, doing up buttons and tying shoelaces had become tricky but hadn’t connected those difficulties to anything other than a trapped nerve, a condition I’d had before and expected to be diagnosed with again.

However, I had to persuade my GP that ‘something else was wrong’. I wanted to be referred to a specialist as the treatment she had given me seemed ineffective. So it was that I walked to my car from the Neurologist’s consultation numbed by his diagnosis and fearful of the future. His words swam around in my head, and no matter how I digested them, they would not go away. Had I done research? Did I know what it was? When I answered no, he explained that my worries were all related to one thing: the degenerative cognitive condition that is Parkinson’s.

He explained that, there is no known cause, no known cure but research is progressing well. He added that I was relatively young to be diagnosed and that would mean I would be of interest to medical professionals. As it has proven through a series of tests and research activities, some have been interesting, some painful and some I’d rather not remember!

I am in good company, Billy Connelly, Michael J Fox and Mohammed Ali have been diagnosed and 127,000 people have it in the UK alone.

According to the Equality Act, employers need to consider ‘reasonable adjustment’ in order for someone like me to continue to work. But of course firefighting, along with its command and control, places great demands on one’s body and the obvious question was: could I continue to perform my duties safely? For four years following diagnosis I was able to demonstrate that I could. Undertaking driving, incident command and fitness assessments was not easy, but I passed and, for a time, was able to stay ‘on the run’.

But now, as with all things degenerative, the condition has worsened, difficulties increased and as a result, my ability to maintain competency has become too hard. So, four years early, it is with sadness, reluctance and trepidation that I set sail on new seas and after 27 years, hang my fire helmet up for the last time. I had hoped to complete my service, but alas the Parkinson’s has other ideas.

I’ve loved my career, enjoyed the successes, not dwelt on the failures but I have responded to calls for help with all my physical and mental energy and done the best that I can. I’ve been burnt, fallen through floors, had ceilings fall on me, been hotter than I can easily describe, been lost in burning buildings, lost buildings and lost colleagues. But despite the dark side of the job, I have met some truly inspirational people, had more fun than is legal and laughed until I hurt. The support I have had in teaching me to become a firefighter and develop into the officer I became has been exceptional and gratefully received. But the baton must now be passed on, the work must continue without me for there is still a job to do.

I firmly believe that it takes a truly special person to don the PPE and go into places where others fear to tread. Only those that have done it will understand the supreme effort and punishment the body must endure in order to extinguish the most determined fire. All done whilst demonstrating the courage it takes to overcome one’s fear.
 
The future is unknown, destiny uncertain, but what I am sure of is that I shall cross the Rubicon into retirement with the knowledge that I leave behind special people doing a special job.  Thank you all for making my journey a good one.

For the time being I shall continue to pretend to play the bass guitar and swing in my garden hammock whilst contemplating what to do next.

Michael J Fox once said that ‘I have no choice whether I have Parkinson’s or not but I have nothing but choices about how I react to it’. I will add to that a line from the Shawshank Redemption: ‘I guess it comes down to a simple choice: get busy living or get busy dying’.


#2

An amazing career, written about really well! What to do next, you contemplate - writing would seem a good place to start!! :)


#3

Thanks! I would love to, but wouldn't know where to start. That said, i am having a dabble at my new passion - music and writing songs. Not sure that i'm allowed to do this but here's two links to try if you want. The first is written about my thoughts on PD, the second is a bit more cheerful!!! (Ps: they're only demos so lack a bit of oomph...)

https://soundcloud.com/broadside-3/i-want-to-be-the-man-i-once-1

https://soundcloud.com/charlie-zero-nine/light-vulcan-remix

Hope they work!

Steve


#4
Hi beelvbub you have been very strong and brave person. BB x good luck.

#5

HI BeElveBubb

Thank you for sharing this, it's such an inspirational story and I'm positive that other members will feel the same. 

Welcome to the online community, I hope you enjoy getting to know everyone here. If you have any questions please feel free to ask me, I work at Parkinson's UK and help moderate the forum. 

Kat


#6

Hi there BeElveBubb


I  missed your introduction until scrolling through just now, what an intro it was too! Very interesting reading. Your Career of 27 years by the sheer nature of it is not one that many could do or even want to do, so like anything that you love and find that you're good at to let go prematurely must be so difficult. I have always been a wife and mother with a part time clerical job so nothing mind blowing, but the day i feel my working days are over will be a loss but not a devastating one. I have a strong mind (so far) and have had the ability to adapt when needed to.

Keeping busy with my main focus exercise, I have exercised most of my life but for the past 4 years whilst having PD i have done Body Combat, Fantastic work out and i haven't fallen over yet. We all have our own way of adapting and coming to terms with this, some better than others. I dont look into the future i live for the day and each day is good because i wake with positivity. Not knowing what could be around the corner works for me because i am a wimp living in ignorant bliss. 

Wishing you good luck with your music


Barnowl!  

 


III


#7

Barnowl1, thank you for taking the time to pen a reply.

To put my career in some sort of context, I was born to fight fire. My dad, grandad and three of my four uncles all served as firefighters, so from my very existence the fire service dominated my life. sure i knew it would be gone one day but the suddenness with which i was retired was mesmerising: I went for a routine appointment and the consultant doubted whether i should still serve. Any doubt was squashed by his letter to my doctor that stated i should refrain from ‘any sort of physical activity in emergency situations’. So six weeks later, i was gone. I think that I am still grieving now.

Being a mother not mind blowing? hah, i disagree and as for being a wimp? well my opinion is that actually to watch yourself gradually lose strength and control and still wake looking forward to every day shows stoicism of the highest calibre

But, I am a positive person too and i too take each day as it comes. i don’t want to know what the PD will bring, i would rather think, and look forward to, other things. i know that for all of us there are tough times to come, but i shall face each step head-on and fight to the end.

I used to be in the gym alot, but weirdly it was there that one of the first symptoms came to life, i started to notice the strength disappearing in my left arm, the rest is history. I kid myself now that i will return to the weights one day, i am thinking of trying yoga instead. have you ever tried yoga and if so did it help?


#8
Hi a friend of mine is a yoga instructer and she says it does I trust her 100% I would join her class but to far to travel. Just one point they have to have specalised training to teach yoga to pwp's. Please double check who's class you go to join. Best of luck BB.

#9

BeB,


There are two big changes to come to terms with, retiring from a career you loved and health, there is no time limit for acceptance of the situation but when it does you may feel stronger to explore other interests because  life as we know it isn't over. I have done more with Parkinsons than without. It is so true when you hear the saying " don't know what you've got til you lose it" when you do lose it you want to do everything!

My mum who is 83 is quite a yogi, she can bend like no other, me, i have attempted yoga in the past but i like the fast workout to loud music, i love music and a large class working out to it gives me a buzz like no other. Yoga doesn't come naturally to me, core strength, breathing, controlled movement, all of which you can build up to with practice. It is an excellent form of exercise but just not for me.


On the days when i feel  fear of what is to come or generally feeling like a patient than person, something always happens to kick start the Rachel within. A thought, a clip on tv, something someone says on the radio or maybe a friend needing my help but something always pushes me and my problems to the side and makes me realise i still have this gift of a life so i owe it to myself to make it work for me and i do. I am not preaching saying " be grateful for what you have"  I am just trying to explain my situation and way of managing my thoughts and how PD effects me..I suppose outside influences , friends and family keep my mind off myself. If one is alone with this then thats a different matter it must be incredibly difficult. This forum is a potential lifeline for some. Putting thoughts down on this site is therapeutic too, can be a weight off your shoulders sharing views and troubles with like minded folk.


Keep talking, talking is good!   well in text it is, i have lost my voice completely this last 2 days to the relief of my family!  Try the yoga, do anything that gets you out and about and moving.


Take care


Barnowl 1 Rachel


#10

Yep, totally get the notion of doing more now than i did before. mind you, when working i was on call for 78 hours a week and switching to nothing was exciting and disturbing in equal measure. That said, on Friday i heard those words i knew were coming but feared nethertheless: 'your excessive sleepiness means you could be a danger on the road and i think you should refrain from driving'. so in the shed i went, out came the bike and a plan to bring it back into life was born. I live in a very small village with one bus a week, so life will bring different challenges once more.

i'll keep talking as long as someone listens. Actually, ill keep talking even if no-one listens.....!!

Thanks for the chat (and keep talking too!), hope your voice recovers soon and ill let you know if i find a local yoga class...

Steve


#11

Hi Steve ,wonder if you could help, I'm a current crew commander and have just been diagnosed, how should i go about telling the brigade and will it mean non ops straight away or will I be able to remain operational ?

Read your piece and found it very moving

Russ

age 46


#12

Hi Russ/ I were operational firefighter for 22yrs and had to retire with spinal probs. then got dx with PD some 16yrs later.

Its quite a predicament youre in. Things vary from brigade to brigade however you still have s duty of care not only to yourself but to those around you. Depending on your brigades structure I suggest you either inform HR direct or go via your occ health section. Under the equity law 2010 they have to offer you alternative position as I think they will deem you unfit for operational duties.


Good luck

John


#13

john

i've had a chat with Russ about my experiences. My brigade were compliant with the law and made adjustments acceptable and reasonable to all parties and i continued to be operational and maintain fitness levels and competency for four years after diagnosis. my career was terminated by a consultant who feared i may 'freeze' during firefighting or command duties, with the obvious associated danger the showstopper. despite the fact that i have never had a freeze, this particular consultant's warning could not be taken lightly. i was offered a desk job or pension and i took the money as i couldn't entertain being a spectator whilst my peers had all the fun.

Russ has now to cross the Rubicon and tell his line manager and watch and hope that his experience matches mine.

obviously there is a point at which the job is too difficult for a PWP, mine would've passed soon even without  the consultants letter and the big decider for me was exactly what you say, safety of myself, my reputation, my colleagues and the public. 

it's certainly been tough now there's no fire service in my life. i loved the job and hated waking up to find i was now just a bystander, a man with dog, instead of somebody dashing to aid those in peril.

But it is what it is and i am who i am and acceptance of that is tougher than anything else.

Steve