Some words for those recently diagnosed

About Parkinson's and health Wellbeing
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Just some words for the newly diagnosed.

This ain’t no picnic in the Parkinson’s

So you’ve had a diagnosis? Parkinson’s ?

What now ?

Welcome to the club of over 145,000 in the UK and 6 million around the world.

There is no cure, it;'s progressive and degenerative…

Five years after diagnosis, my aim is to offer some simple words of comfort and encouragement. These were gratefully received by myself and came from a seasoned warrior…

That’s what you have become. You are a warrior because the requirement to find some inner strength has been thrust upon you. You do not have a choice.

The question is when I find that inner strength,how will I put it to work?

Let me set the scene.

I was a 55 year old sales manager, married with family, grandkids etc.

I liked a beer down the pub at the weekend, smoked the odd cigar when the misses weren’t looking . A man;s man if you like.

Upon diagnosis I did what most guys of my type would do, I tried to ignore it, drown it in alcohol,.Drinking to in-coherency to make it go away.

This only served to put extra pressure on my life, my marriage and my health.

A by chance meeting with a personal trainer, who himself was a “ Mover and shaker “ reassembled my life.

At this juncture, I’m not going to preach about the benefits of exercise. Some, like myself, don’t enjoy such activities but I would encourage you to try it.

I was in my second or third weekly session with this guy and we were doing the beep test.

Running up and down the gym, changing direction and pace, to the beep sound.

I was not enjoying this at all and eventually the feeling of apathy, and the realisation that this was pointless consumed me and I sat on a nearby bench sweating and breathless.

My coach continued the exercise, ignoring my protest and just as I was gathering my belongings to leave for good,he joined me on the bench.

Before I got up to leave he asked me a number of questions.

He said “ If you live to be 95, how will you look back on these days?

“Will you conclude that you followed doctors orders, took your pills,and abandoned your life as it is ?

“ Will you retire to your bed and wait for your God to take you?

When your God or PD takes you, will your nearest and dearest say “ He put up a good fight?”

Will those words be just cliches on your headstone ?

Or do you choose to fight back ?

PD is not regarded as a terminal illness so you can either choose to live with it or die.

Everyone of us is dying with or without Parkinson’s.,

At early diagnosis,you still have the ability to influence the longer term outcome

There will be setbacks but everyone has setbacks in life.

My advice is to carry on your life as normally as you can,.join a PD specialist gym or online exercise site and the many social groups.

Stay proud and strong for you are part of a community of incredibly brave resilient people .

You are a PD Warrior.

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Hello Duffers
Well said you. I agree with much of what that personal trainer told you but I tend to view it in a slightly different way. I personally don’t see it as a fight as such. To me it’s a given. I have Parkinson’s - fact. It is indeed everything you said it is and I can’t change that. To me the challenge is in my mindset and if anything makes me a PD Warrior to use your phrase, it is that. My mindset comprises two sides. One which I have termed Parkinson’s brain is very strong, very negative and hard to neutralise. The other side of the coin is a quieter, logical and practical brain that recognises the emotion that Parkinson’s so often hijacks to make life very difficult.
The trick, skill, art or whatever you choose to call it is to find ways to turn the negatives into positives. Which on reading your post is pretty much what you have done.

When replying to newly diagnosed, I have said more than once that they may not believe it at that precise time, but they will come through the initial period following diagnosis and find a way to live with Parkinson’s as we all do. My way won’t be everyone’s way, some do choose to see it as a battle, some read all the research material they can find waiting for ‘the cure’ some need to concentrate on what they have lost not what they still have, some try to just ignore it. There are as many ways to live with Parkinson’s as there are people with Parkinson’s and you just need to find the one that suits you.

I particularly liked your sentence that reads ‘Stay proud and strong for you are part of a community of incredibly brave, resilient people’ to which I would add creative, resourceful and understanding. Some of the posts on the forum are amazing, as is yours for taking the time and trouble to write such an uplifting piece.

I may not see myself as a PD Warrior but we are each in our own way choosing to live with our Parkinson’s in a positive way. I do hope that your words will resonate with some newly diagnosed, or even not so newly diagnosed, and help them to see that life with Parkinson’s won’t be what you would choose for yourself or anyone else; since they are the cards fate has dealt however, why not do what you can to make your life one worth living and the best that it can be.
Tot

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Hi Tot.

Thank you for this inspirational piece.

Just what I needed when it’s three AM and I’m wide awake and lacking those uplifting thoughts. Thank you .

You’re absolutely correct in that you never think that you will ever learn to live with it but you do.

Many thanks again for your reply.

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Hi Duffers I like it , I like it,???
PD Warrior!!!
Your so right in what you say, I now have had Parrki for 13 years (unluckie for some) first when told it did not sink in, next found out could not swim any more (this was about 6years aftre) so tried kick boxing, no thank you, then tried Tai Chi loved it last year though after a couple of falls had to give up, Lawn green bowls again loved it but due to balance had to sit in the dug out and watch, Now after all the years, I am just thankfull that I am still here, What next well after doing a bit of raising money for our condition I have stated writing my life story so it might inspire my grand-children that what ever we get thrown at us Never Ever Give Up there is always some thing around that corner.

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Hi Mary.

Thank you so much for this reply.

Everyone has a story and I find writing to be therapeutic .

I too have begun to record my life with PD and publish online.

It’s called Chris Duffy Zombie and I’ve had some lovely feedback from our brothers and sisters around the world.

I’m up to something like 200’,000 words and 18 episodes.

It charts my life with PD, some of the incredibly brave , resilient people out there and what I’ve learned from them.

I also try to include a few funny moments.

I’m passionate about getting some sort of counselling for the newly diagnosed because that’s when we need information and a battle plan.

You often just get the bad news and they send you home.

Keep writing because everyone has a novel in them and ordinary folk often tell the best stories.

Kindest regards

Chris Duffy

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Hi all, love this thread so inspiring.

I would like to share with the newly diagnose with you all really.

My husband diagnosed Nov 21 age 53 had his second appointment since diagnosis with his consultant last week just a review really. Before the appointment I asked him what he would be telling the consultant,his reply was…don’t know really because nothing has changed since diagnosis. It was then I realised he was right nothing has changed he is no different to when he was on his diagnosis. His parkinsons is very much tremor based in his right hand,the drugs calm it a little but not much really. Other than that a bit of stiffness in his right shoulder but he just gets on with things.
As Tot I think it was mentioned after a while of being diagnosed you come to terms with it and start to carry on living your life. It is people with parkinsons like Tot and my husband who have that mindset of continuing to still live life to the full even with parkisons. This has taught me myself to be able to cope with my husbands diagnosis. I can truly say parkinsons most of the time is forgotten that it is in our life. Why should we let it rule us when we are the ones who can rule parkinsons. With or without any kind of disease or illness its ourselves who get to choose how we will live our life. So when anybody gets a parkinsons diagnosis they can choose to just give up and think their life is over or start to live their life to the fullest they possibly can.
Absolutely nothing has changed in my husbands life and I am being truly honest about that. Last year he built the most amazing summerhouse in our garden all by himself. Yesterday was our 17th wedding anniversary,he started the day by getting out to do the local park run, a 5k run. Came back showered and started digging and shifting a load of soil in the garden to prepare the ground to lay a patio. We also booked a holiday to Greece in the summer. We are going on a walking weekend next week and the end of April we are walking Snowdon.
Now I know my husbands parkinsons will progress I am fully aware things will change but there is no way we are going to sit here waiting for that to happen. At the moment we are having far too much of a good life to stop and wait for the worst case scenario that might not even happen anyway.

So my advice to the newly diagnosed is once you are through the initial shock you will come through it remember it doesn’t mean your life is over. Have a positve mindset and live the life you deserve. Do not let parkinsons rule your life.

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Hi Lizzyg
you’re so right about not letting PD take over, but as years go by I must admit I am finding my PD now changing . So I have had PD since 2010 and greatfully have never let it rule me, but since lock down it’s shown a few of the things it can do. At one time I used to play bowls, Swim. do walks for PD to raise awareness and collect money for treatment. Also Tai Chi but now alas these things are no longer possible so after 12 years of freedom I am now losing a little control of movement. I am not letting it rule me though as I am try to think of other things to do, Looking back in our Tai Chi group there was one of the men Brian he too had PD but he could not keep any of his body from moving and last seen just before lockdown he was going to have DBS but I have not see him since. What I am trying to say is that as one door closes another will open and as John Whyne said in a film Never Ever Give Up. as Its the sign of weakness.

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I agree with you mary1947. As you will know if you have read some of my posts, staying positive is very important to me in managing my Parkinson’s but that doesn’t mean I see things through rose coloured glasses. As far as I am concerned it demands I am honest with myself, recognise what is happening and crucially, recognise those elements I can’t change even though I might wish it to be otherwise. I know that I have a chronic condition which will deteriorate. I know things won’t stay the same. Having said that, as things have changed over the years I have adapted to accommodate that change by doing something differently or finding an alternative.

My Parkinson’s progression up until now has been slow and I am grateful for that but I am all too well aware that might not always be the case. I am also aware that my approach may not be so effective at some point in the future; but for as long as I am cognitively able I intend to continue with the same mindset I have always had ie to look honestly at my situation and within that find ways to turn the negatives into positives - or to use your words as one door closes, another will open.

I live with Parkinson’s that’s a fact so it is part of me and my life, but only a part. It doesn’t define who I am and as I have said many times on the forum, I don’t give it star billing - I am and always will be Tot first, I happen to have Parkinson’s, and I have a life which I intend to live as fully as I can. Parkinson’s may mean I can’t choose the path I might have taken pre diagnosis but there is a path and I intend to see it to the end.

Your way very much mirrors my own mary1947 and long may it give you
a good life even though we both carry the Parkinson’s load that is constantly trying to upset the apple cart. We may lose a few apples along the way but there are many varieties of apple, we just need to find a suitable alternative lol. I wish you well.
Tot

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Many thanks Tot for your reply and I agree with everything you have said.
Do keep in touch and keep posting.
stay safe
Mary

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I read your post with interest ElleMac because I’ve never een under any illusion that the positivity that I set so much store by will last me for ever and a day. Maybe it will but equally I can see there may well come a time when the sorts of things you described might well happen to me.
There are no 100% guarantees to any coping strategies and we can only get on with the business of living as best we can. I would add two comments here however. First when appropriate, I say to family and friends that I hope they will remember that I haven’t always been difficult, challenging, unreasonable or whatever Parkinson’s has in store for me; that once upon a time I was quite a nice person to know lol
Second, we are very quick to blame everything on Parkinson’s but at least some of the elements you mentioned could equally apply to any of us as we go through the ageing process.
Maybe we should stop worrying about it and perhaps even enjoy it a bit - for the first time ever probably, we are not constrained by social niceties and how we are expected to be. .Maybe we can learn a thing or two from this well known poem, commonly known as The Purple Hat poem by Jenny Joseph

So don’t beat yourself up about how things seem to be changing for you. You may wish it were otherwise, but if that’s the you of today maybe you are actually just practising for the day you wear purple with your first red hat.
Tot

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