Vic_tor raging at the whole world

Hi,
Some 18 months ago, or thereabouts I tripped over my own feet and hit the ground like a sack of Spud’s!, hurting my wrist and arm. Feeling like a complete clumsy pillock, I went to the Doc to get some painkillers. During the consult he asked me walk up and down, do some “birdie dance” stuff, then said " here’s some painkillers and an appointment to see a specialist neurologist, I think you may have Parkinson’s disease, - next patient please…
I was told that the waiting list to see a neurologist was between 12 to 18 months away, unless I went private, when I could be seen next week.
As a Self Employed professional engineer, my work contracts were often abroad, and could last weeks, months, or over a year or more. I had a contract with a company in Belgium about to start, so I coughed up and saw the consultant guy a week later. He was very thorough in his testing and diagnosis, and confirmed that in his opinion that I was indeed developing Parkinson’s disease.
I completed the Belgian contract as quickly as I could, whilst shuttling back and forth for a day at a time here and there for further consults and meds balancing.
My shakes have responded well to the drug regime, but the non - motor symptoms of Parky’s have meant that I have been unable to carry on working at the level I was.
The planning and details of project management were slipping away from me, and after over 30 years of building process lines and factories the complexity began to overwhelm me. I found it very hard to summon the stamina to concentrate for long enough to complete the detailed planning and activity co-ordination required for successful and safe execution of the works I was contracted to undertake. The industry I worked in is a small community, and I have worked with some of the other specialised contractors for many years, they all know how things tie together, and on my last assignment, I know, and they know that they carried me.
I also have begun to forget the names of things, and technical descriptions of processes that I have referred to for years, it’s not that I have forgotten the actual stuff you understand, it’s that sometimes the word I need to describe something just escapes me for a couple of seconds. This may not sound like much of an issue, but when you are pitching for business, it is soul destroying to be stood in front of a potential client, trying to persuade them that yours is the company that they should engage to develop and deliver their process when you stand in front of them and tell them that you intend to install a process in which the output of stage 2 feeds into the,. … Ummm… Thingy, before being delivered to the ummm… Whatsit…

Even though the word Pop’s into place 5 seconds later, it is too late. The moment to impress has gone forever. Would you trust this company with your money and business future?
The anxiety of forgetting the names of things then sets off my tremor and the embarrassment around the room is thick enough to cut with a knife.
This is not how I wanted to end my career, but operating in my old work is doing me no favours, to say I am upset does not even come close, I feel so wretched I can not find the words. I am desolving my business and going to find some other purpose in life.
I have realised that whatever else Parkinson’s is, it is a thief, and a sneak thief at that.
I appreciate that this is a long and rambling, not to mention self indulgent post, but the Very act of writing down what having Parkinson’s means to me, and how it affects my life has been cathartic, I have not vented my frustration and anger at this condition before.
I know that my journey will be in many ways similar to that of many others, whilst also unique to me.
Just getting the anger and sense of injustice at developing this illness out makes it seem easier to rage against the world.
To all who have already faced and dealt with this illness, you have my respect, to all those people who have yet to face it, draw strength in knowing that eventually you will get the better of this damned thing.

Hi @Vic_tor and a warm welcome to the forum. I am sorry to hear you have been having issues with managing your work.

Thank you so much for sharing your story. I am sure many people will identify with many of the issues you have described.

I’m sure some of our lovely members will be along soon to say hello and have a chat.

In the meantime if you feel you need more direct support please don’t hesitate to call our helpline, our advisers can provide information and support around all aspects of life with parkinsons.

We are open Mon-Fri 9am-7pm and Saturday 10am-2pm. You can contact us on 0808 800 0303 or email [email protected].

I wish you lots of luck going forward and please don’t hesitate to use the forum as a source of information and support if you need to.

Take care

Corinne
Forum moderation team

Hi, it’s not a rambling or self-indulgent post and it’s definitely an experience that resonates. I’ve recently had to give up a job that I loved and that gave me purpose because I couldn’t keep on top of it and like you, I was in a very public-facing role. Delivering training to a room full of time-pressured people when words don’t come out as quickly and fluently as you would like and your hand shakes too much to use the various interactive resources necessary hardly inspires confidence and I won’t even start on trying to manage teenagers when you can’t keep your legs still and you can’t write.

My employer couldn’t (wouldn’t) suggest anything that would help me. My immediate colleagues and line manager were fantastic and carried me for a while but being carried does not help with self-respect and the powers that be didn’t understand Parkinson’s. I don’t think they really wanted to.

As a single person with a mortgage to pay, the thought of losing my job on capability grounds and then having to work out how to pay a mortgage with no income and little realistic prospect of getting another job left me with no alternative other than to push for ill -health retirement. I actually feel that I could still do some sort of work but the problem is I can’t guarantee how well I could do it on any given day and so taking my pension early was the best option. I was lucky in many ways because it was awarded, though I miss working more than I can possibly say. Like you say, Parkinson’s is a thief.

People want me to be grateful because I got a very good deal, and I am, but I haven’t got what I wanted as people suggest, I’ve got the best deal out of a bad situation and like you and so very many others, I will keep doing that until I no longer can because it is the only way forward.

It’s a rubbish condition and there are no easy answers but I’ve lived with this for over 8 years now and there are still good times for me and I truly hope there are for you too.

Of course there’s also a global pandemic which isn’t making anything any easier, but that’s a whole other issue.
Take care.
Jx

Hi Vic_tor,
You have every right to voice how you feel and believe me anyone reading your post will resonate with how you feel.
PD is a a sneaky thief, just when you think it can’t rob you of any more it does.
I am now n the same situation as you, I have to give up a job I love. By no means am I being pushed out I know I have reached the limits of my capabilities. I teach primary children, which I love but like you am forgetting descriptive words, shake all the time and the children are asking question “Mrs Muldoon why are you shaking?” Heart breaking.
My head and other colleagues have been amazing but like you I know it is time to go. I also am going out on ill health. I feel so deflated but I have till October half term to enjoy my little lovelies!
I’m venting now and I’m suppose to be supporting you!!!
You sound like a fighter as am I so when that little PD monster appears lets kit its ****!
Take care
Annie :smile:

@Vic_tor as a fellow PM I can understand your frustrations and anger at losing skills built over many years. The ability to deliver that killer pitch which will win the day & the project due to that odd loss of the right word at the right time is deflating (an understatement) and robs you of your standing and legacy.

People tell me I am lucky as I have been kept on, but though for now I am employed, I have been reluctantly pushed into roles which do not play to my skill set, which has been stolen from me by mr parky. I am no longer delivering the presentations and sealing that all important deal. I spend my time writhing scripts for others to deliver, or business cases, project plans. They say all the right things that I am still as good as I always was a safe pair of hands, the mr fix it etc but only as long as I don’t speak or attend in person where they can see my tremors which can be misinterpreted as nervousness and or ill prepared.

Restructuring is on the horizon and as HR are mentioning things like I’ll health retirement, I guess it’s the company’s clumsy way of saying your off.

I wish you well in your challenges that you face, for me I have agreed to ill health retirement so will be leaving a job I love, the people I work with and with those I have meet along the way. Best of luck in what ever the future holds for you. :sunglasses:

Hello All,
Thank you so much for your positive feedback, It has helped me to start getting things in perspective.
I need to find more things to occupy myself with rather than dwell on things I can no longer be.
Remain safe and well.
Best regards all,
Vic

I am the same, had Parkies for 14 years, had DBS last year and was medically retired at age of 55. I feel I am going bonkers some day, people suggest things to do but believe me I have tried. I try to remain positive but some days it is hard. Al the best x

I wish there was something to say to you that was encouraging, light at the end of the tunnel: type of encouraging!!! There’s nothing but blackness at times and then something happens …such as yesterday when my grand daughter said she had had a nasty dream about me and she had woken up crying …and wanted me to know that she loved me very much and how lovely I am and what precious memories we share…nothing can take that away from me …Stay strong thinking of you

Hi Jackson1,
The very fact that you were one of the first to reply to my original post was encouragement enough in itself, I was at the tail end of a bottle of wine and angry at my head for hosting this Parkinson’s wonkyness, and what it had stripped me of.
I am now much calmer having vented.
And yes, you are right that when one is at a low ebb, and things only look black that life has a habit of turning up with something that lifts you up from the floor. I am glad for you that the love of your grandchild is your rock.
I wish you all the very best.
Regards Vic_tor