New to the forum. I’m 42 and waiting for a dat scan to confirm my neurologist’s suspicion that I have PD. Physical symptoms are relatively mild, stiffness and tension in arm, struggling to write, mild cogwheeling, mild tremor at times. Neurologist stated that he has greater than 95% confidence it’s PD.
Perhaps more challenging are the mental aspects. I changed jobs two months ago and am struggling with motivation. I have a great job, well paid, great colleagues, but suffer a bit with brain fog and concentration and I am struggling to stay engaged and meet deadlines. My work is stressful at times and I also feel like I’ve had enough of looking at a screen for over 8 hrs a day.
I have a five year old son and a very supportive partner. She also has a good job and we can easily live on one salary as have minimal debt.
Recently I have been considering stopping work for a while and concentrating on exercise and spending time with my son and partner. I feel like there isn’t time to give my full attention to exercise/family/work and I feel like one of them has to give. In time I would potentially look for other work which has no stress and is more outdoors based.
I guess I am looking for advice as to whether I’m doing the right thing from others who have tread the same path. Do you wish you had given up work earlier? Do you wish you had worked on and built up a bigger war chest? I don’t want to do anything I later regret but don’t want to miss out on family time either.
Hi @Mr_stu welcome, it may be worth talking to your Boss, tell them of your problem & possible diagnosis, they may be able to give you lighter duties. If not then consider your options but by rights your Company has to offer you suitable alternative employment. I was a lorry driver & was offered to work elsewhere within the company but I couldn’t do anything physical & had difficulties writing. So in the end I took the Mentally Retarded(Medically Retired) route as Redundancy wasn’t available to me !! In my case I was told that having Parky I could no longer be in charge of my 44 tonne beast or operate any other heavy machinery so DVLA were informed though in myself I felt that I could carry on but the law is the law !!
Hello Mr_stu
I can tell you where I am if it helps? I was diagnosed via DAT scan last year, I went to the neurologist with a tremor and came out with Parkinsons I’m 55 and on 25/100x3 a day cocareldopa which seems to have no obvious effect, I gradually feel my life being sucked out of me. The company I work for have said that I can go on PHI whenever I want, at 70% of salary until retirement age, so I said that I would go next year to allow some succession planning - the opposition I have had to this both from my wife and the PDCNS have been stunning - mostly citing my “mental health”… I think my mental health is best served by being able to do all the things no one else wants to do, like go to museums etc as I still can; there are no guarantees with this but what do I know? My sincere suggestion to you is if you can afford it do it - make memories with your young son and partner whilst you can.
Hello Mr_Stu and welcome to the forum.
You raise an interesting dilemma which many face in considering where or if work fits into life when living with Parkinson’s. The first thing that came to mind when reading your post however, was that you are possibly thinking too far ahead and that the most important thing at the moment is to get a confirmed diagnosis; following that most would agree with me that you need to give yourself time to get used to the diagnosis, your feelings about it and any action or treatment plan that is proposed. That can take time and affect any other aspect of your life. It occurred to me that this might explain your decreasing motivation, your ‘mind fog’ etc which many can probably relate to before diagnosis and in the days and weeks following diagnosis whilst things get sorted out. It certainly makes more sense than seeing it as a stand alone work issue when you have only been in your current job two months and which you go on to say is a great job, great colleagues etc.
It’s important you don’t have a knee jerk reaction so I am going to play Devil’s Advocate here and just raise a few general points for you to think about that could have a bearing on any decision you may eventually make; they might even be things you are not consciously aware of but are nevertheless still nagging away. A diagnosis of Parkinson’s raises many general questions like do I tell people or keep it secret, will people treat me differently etc and many emotional responses it can be a scary and bewildering time. Amongst the questions raised the implications when you apply them to work situations can be massive - does my employer need to know? and can I lose my job because of my diagnosis ? being the two big unknowns for most people. Is it perhaps a worry as to what might happen if you can’t do your job properly? Are you thinking it would be better to leave now so you don’t have to tell anyone or explain anything because you wouldn’t know how? Do you think leaving work would help you with your diagnosis because one of the main structures to your day is gone. There are lots of other issues that may be coming into play right now, ignoring them won’t help. So if you are thinking of giving up work be sure your reasoning is sound and doesn’t lead to a decision you may regret.
To answer your question more directly is difficult because it depends on so many things, not least how much work defines you as a person and where it falls in your priorities. Most people with Parkinson’s of working age have to grapple with this at some point. I left work just over two years after my diagnosis and it was strange how things fell into place. I was planning to retire at 60 and was considering leaving my quite pressured post for a job with less responsibility that I could leave behind at work and have a day off without coming back to dozens of messages and a full in tray and do that for my last few years before retiring. Then the state pension changed and it meant I had to wait a further 7 years at least before getting my pension. I had to change my plans, the sums no longer added up. I was resigned to staying on full time in my post and if the Parkinson’s became an issue I would probably have to go through retirement on ill health grounds - not what I wanted it is a difficult process to negotiate. Work was becoming more difficult even with my supportive employer and I was beginning to think it was time to stop when out of the blue I had the opportunity to take voluntary redundancy which is what I did. It gave me back a chance to effectively ‘retire at 60’ as planned and I have never regretted that decision. There are two things I’d like to mention here. First I have been lucky to have had a range of mostly enjoyable jobs but the work itself was not a motivator for me. The simple fact was I had to pay the bills so I therefore needed paid employment. It was a bonus I enjoyed it but it wasn’t that important to me as a person. Second it was only when I left work that I realised just how difficult working and living with Parkinson’s had become. I realised that just getting through the working week took all my energy to extent that in the evenings or at the weekends I did virtually nothing. I had no life. My situation resolved itself but I do sometimes think I should have thought about leaving sooner but then again I had no spare energy to think about it logically. It was a catch 22.
Like most things related to Parkinson’s the decision is ultimately yours. Maybe it is right you give up work at least temporarily Maybe not. I have to say however that I think you need to consider the whole thing very carefully especially your thinking as you are even before you have an absolute diagnosis and sorted out any initial treatment plans etc. Be sure your driver is the Parkinson’s and not some other factor in another area of your life. I hope this helps you make the right decision and doesn’t make it harder but you are considering a huge lifestyle change for your family as well as yourself and I believe that demands clear and honest thinking about your motives and reasoning. Parkinson’s may give you a way to achieve what you seem to want but is it just convenient. Only you can know that.
Good luck, I hope you ultimately make the right decision for you and your family for the right reasons.
Tot
Learn about your disease and treatment options: Learn about the symptoms of Parkinson’s and how they may affect your ability to work. Talk with your doctor about the best way to manage your medications.
Create a plan: Create a plan that includes strategies for staying productive at work and maintaining relationships with co-workers, supervisors, and customers. Consider how you will handle situations such as falling asleep at work or frequent bathroom breaks.
Get help: Ask family members or friends to assist with tasks like getting dressed in the morning or driving home from work if needed. Ask them to help out with simple household chores that don’t require many physical efforts, such as taking out trash or vacuuming floors.
Identify your triggers and find ways to reduce them.
Take frequent breaks during the day, even if you don’t think you need one.
I am pleased i have found this thread as i am currently having the dilemma of whether to give up work a couple of years early and the implications around it . I currently work 12 hour shifts , 2 days ,2 nights and i am the shift electrical tech with sole responsibility of the electrical maintenance and breakdowns on a multi million pound facility. I am continuing to do my job and thoroughly enjoy my job , the challenges it brings and the people i work with . I think my job keeps me physically and mentally stimulated but it has its down sides. I find now on my rest periods i am more and more tired , the act of physically doing my job is becoming harder and harder and some of the more fine motor skill based tasks i am responsible for becoming harder and harder. My Consultant along with my family and friends are of the opinion giving up work and the 12 hour shifts,particularly the night shifts may have a benefit on my symptoms and overall well being. Whilst i agree i am concerned the mental and physical challenges my job presents help to keep me physically and mentally agile and i may miss these challenges and the lack of stimulation may have a negative effect on me.
I have been presented with an opportunity to give up work 2 years sooner than planned that is financially viable but i am hesitating due to the concerns about missing the motivation from working. I am on the brink of taking the plunge and in preperation for the abundance of free time i will have i have joined the local leisure centre with a view to doing swim/gym sessions every day , am renewing my interest in fishing and will continue to play my PD effected version of Golf so hopefully i wont become attached to the sofa watching day time tv.
I would be interested in hearing from anyone in a similar position or someone who has actually gone through this already.
I’m 55 and on 25/100x3 a day cocareldopa which seems to have no obvious effect, I gradually feel my life being sucked out of me. The company I work for have said that I can go on PHI whenever I want, at 70% of salary until retirement age, so I said that I would go next year to allow some succession planning - the opposition I have had to this both from my wife and the PDCNS have been stunning - mostly citing my “mental health”… I think my mental health is best served by being able to do all the things no one else wants to do, like go to museums etc as I still can; there are no guarantees with this but what do I know? My sincere suggestion to you is if you can afford it do it - make memories with your young son and partner whilst you can.