Hi All. I started this topic on another thread and got some interesting responses. So I wanted to get a focused thread going.
I’d like to hear everyone’s experience and advice about working. Do you still work? Did you stop because you were no longer able? Do you wish you had stopped sooner because the stress was bad for your health?
My situation. I’m 42. I was diagnosed early this year. I have bradykinesia and rigidity. It’s difficult to write. I’ve also got some brain fog and apathy. I’m quite healthy — I’ve been on regular exercise and the MIND diet for years. Running, biking, and yoga. Blueberries, B12.
By standard estimates, I have at least 25 years of career left. I’m in a research position at a big company, where I am well-respected and have a promising future. Or...maybe, I had.
I enjoy my job. But my work does cause stress, which appears to worsen my symptoms when I don’t manage it. The right thing to do, probably, is to reduce my hours to 6h/day. I’m just not ready to admit that my career, as I envisioned it, is over.
I feel good right now. And I imagine that I have at least 5, maybe 10 years of “honeymoon” with the Sinemet. But, by all your posts, I am learning that the stress alone might be quite damaging and accelerate the progression.
I’m thinking I’ll wait a year to make a decision and just try to be diligent about exercise and sleep. It’s hard to change my mindset about career. I feel as though I’ve moved into a new house with this body/brain of mine.
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I had to give up Wrought Iron and Sculpture based work because I could no longer do it having lost fine control of hands and muscle tone. I miss the challenge found within running a business and the joys of being creatively productive.
If I was in your shoes I would chat with the Company boss and work towards a strategy together, that is mutually beneficial to all concerned.
Most of all, stay happy, unstressed, while still achieving a good sense in achievements.
I do not think is a good idea to tell them at work. Of course, depends of the boss, but usually a boss cares about the performance and have no mercy. I did not tell them and I'm not going to do it. Just I told them I cannot travel abroad because of medical reasons.
Most 'on the ball' bosses know or notice any wane in employee performance, and inscrutable one's can sweetly heap on pressure to make an employee want to leave on their own accord.
If a boss knows that an employee has become 'disabled' and registered that fact of truth with them at the earliest opportunity; They will be most unlikely to bully that employee as that will cost them dearly in any subsequent Claims Court.
A valued employee will always be looked after / or sometimes be offered an agreeable golden handshake.
After all, most businesses need to be seen & known as being Good employers to get the most productivity from the whole of their workforce as possible.
Thanks for your advice. I actually think my work would be receptive to working with me, which is why I think I could go down to a 30h/week schedule. Thankfully, my company is quite ethical. I have seen them handle similar kinds of cases.
Hi! I went through the same dilemma like you. I'm lucky I got it 20 years later than you but I could be luckier if I got it later or never. I'm 63 and it started few years ago but last year I found out. Except some tremor in RH I do not have other symptoms ,yet (maybe a little freezing in right leg when I'm very stressed). It is true, the stress amplifies my anxiety and is screwing up my brain. I'm a software engineer for industrial software and environment is very stressful. I try to keep the stress at minimum and I'm performing very well but if I get stressed I just do 20-30 pushups or fast walking inside the plant and feel better. I'm working long hours now starting from January (10-12 hours a day including weekends). I need a weekend off but that won't be possible for at least 3-4 weeks from now. So with no stress or minimum stress I can work very well and actually that is helping me. But I have to be careful how I schedule my work; if the production line gets down there is a lot of pressure on me and I start shaking pretty bad.
I am 10 years diagnosed and trying to keep onto my job. I work as a nurse for the Nhs, and it’s getting complicated and a little bit stressful. I don’t want to stop work - I need the social aspect and the meaning that work provides. And of course the money. I have been given 6 months to find something I can do or it’s good bye work.
Union involved , late nights reading employment law etc etc.
My advice is don’t tell your employer if you can avoid it. Don’t stop going for work if you feel you won’t be able to do it in a few years - you may be wrong, I was! Get your meds sorted, get fit and don’t give up.
Make sure you understand your pension scheme and possible ill health retirement. Understand the law and disability where you live, be aware that your management may not know the law, nor may a union rep. Be one step ahead and think of adjustments you may need, don’t just limit yourself to Parkinson’s s info, look into other people with different disabilities who still work, and see what they do.
If it’s the end of the road, you’ve used all your sick pay, etc etc, what can you do outside of work, for yourself. We have to have a purpose - set up a business from home, volunteer, be an advocate or anything! Your darkest hour could be your brightest hour.
It took an accident at work for my Parkinson's to reveal its existence!
Working in and for Public service or in a situation where you are working along side others, I would argue that 'You have a legal duty to declare any changes in your health that may affect your ability to carry out your job!'
And employers have legal duties they have to follow legally.
Likewise, you could be seen as a negligent party if you knowingly hide a diagnosis of having Parkinson's from your Insurance company for home, public liability and vehicles.
Why add more stress upon yourself, you are worth far more than that. Be open, honest and caring, and be happy as best you can.
It took an accident at work for my Parkinson's to reveal its existence!
Working in and for Public service or in any situation where you are working along side others, I would argue that 'You have a moral & legal duty to declare any changes in your health that may affect your ability to carry out your job!' And employers have legal duties they have to follow legally as well.
Likewise, you could be seen as a negligent party if you knowingly hide a diagnosis of having Parkinson's from your Insurance company for home, public liability and vehicles.
Why add more stress upon yourself, you are worth far more than that. Be open, honest and caring, and be happy as best you can.
I had Parkinson's for many years.I was undiagnosed. I had many symptom s that changed my work performance. I was fired. -40 years of service. So crushing. Do what bbest for you. Your life is so much more a work
My story was I worked in a high pressure highly competitive sales job where as someone in this thread said your only as good as what you did for me today. How true that is!!!! I chose to hire a lawyer who recommended that I notify my company by official letter, which he ghost wrote, outlining my condition and that at some point down the road I would need special consideration as my condition worsened. After they received that letter I became bulletproof due to the American disability act. I worked another 4 years in relative bliss and retired in 2014z
I am self employed, as a securities trader, currently on break for reasons other than PD. This is commonly regarded as stressful but on the contrary I find it exciting. If I am feeling stress in this activity it means I am doing something wrong. Feeling stress is intimately related to how we perceive a situation. So when feeling stress it is important to examine if it is possible to regard the situation differently.
Park Bear, I think you are absolutely right about trying to maintain perspective when it comes to work stress. It’s not like my work stress is actual life or death; it’s more like “oh no. I have a deadline and not enough time.”
I had a great work day yesterday — Kicking ass. I’d hate to give up that feeling because I can’t manage my emotions.
I think the rule is this: big companies have more mercy, smaller companies have no mercy. I work for a medium size company with NO mercy policy. I had a fellow who had some health issues and they let him go. No one knows if it was any deal. Actually one time I was on the point to tell to the Vice-president and he said he did not want to hear. And I'm in good relation with him; probably it was a suggestion to stay silent.
Yes. I’ve been taking Sinemet for about two months. It’s helping — I have rigidity and slowness on my right (good) side. I understand that I probably only 5-10 years before it stops working well. So I will start introducing some other things. The B1 and mannitol seem encouraging.
You must take care of yourself more than ever before. Diet, exercise, relaxation and save all of your money for that rainy day. Think of becoming a virtual employee if possible. Above all never give up, God Bless You. 🤪
I am 56 and was diagnosed a year and a half ago with symptoms starting about three years ago. I work in a very stressful job and wish I could retire but unfortunately, my husband and I need my income. He thinks I should be able to work until retirement age, another 10 years, he had no clue how the stress excasterbates the symptoms. I lack confidence and motivation to look for another job and it could be just as stressful. I need health insurance and to be able to pay for all of The meds and suppliments. Somedays are okay but most days are chipping away at my health and well being. I wish I had a positive answer for you.
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