Dear Fellowship of the PD,
I recently got diagnosed with PD and am on Sinemet which works great but i find it hard to work fulltime still. I am 54 and have been struggling for quite some time. I have to get up each day at 545 to get to work and finish at 330 but then because of the travelling i am home at 5. My husband wants me to stop working and rest but although its hard it keeps me in circulation with the world.
I would love to hear your experiences in this case.
I don't know the full details, but i heard there was some new rules on 'flexi time' working that came into force the other day, the only part that has stuck in my failing memory is that you are required too have put in six months service with your employer, obviously that may be of some use too you in your circumstances.
It is an interesting subject. Obviously it depends on stuff like how you are affected by Parkinson's, how challenging your job is and what your financial situation is.
I'm 48, dx 9 years ago and still working almost full time in the same job. I feel that I need to keep working partly for financial reasons but also for all the other usual reasons of giving me some structure, getting me out of the house and talking to people.
The equality act gives you some degree of protection against losing your job because of Parkinson's. In general your employer is obliged to make reasonable adjustments to your job to accommodate the condition. The word 'reasonable' is open to interpretation. You might adapt your working hours and/or location, use voice recognition software if, like me, your typing is affected or avoid certain aspects of your job. Some people feel less confident talking to big groups.
It depends exactly what aspect of the job you are struggling with. If recently diagnosed you should not underestimate the impact of the stress and anxiety which could be caused by the diagnosis itself rather than the condition. Your ability to work could improve once things settle down.
The same is true if you are still searching for the right dose of meds. Your working capability may improve with time. I mostly use sinemet but I carry dispersible madopar for an occasional boost if needed.
There is a specialist adviser on the Parkinson's UK helpline who deals with employment issues and it could be worth talking to him.
I hope that helps. Let us know how you get on
It helped tremendously. In all fairness my employer did act straight away to make my workplace suitable and put a lot of effort in to adjust. I think the tiring part is the travelling. In good weather its less gruelsome but once winter comes with cold, wet, ice etc its hard.Its still early days with the sinemet but it improved already a lot like getting out of bed and getting out of a chair.
For the rest keep a good healthy sense of humor about it i think;)
Good question, Maria. EF covers most of the bases (but I think you live in Ireland? so employment law may be different). I've been dx for two years, with noticeable (to me) symptoms for maybe three years before that. I'm 63, and tbh before dx I hadn't thought of retiring, just sort of bumping along. i really like my work, spend far too many hours at it, and am very fortunate that I work from home. Though I do a fair bit of travelling, and agree with you that that is very taxing.
I think both EF and you are right about the value of work beyond the money: the self-identity and all that. If I gave up work I worry I'd simply feel like I was hanging around waiting for PD to catch up with me. On the other hand . . .I've got lots I want to do around the house - stuff I used to say I was saving till I stopped work. Already I can't do practical things as well as I used to. What happens if i get the equation wrong and stay at work too long then find i can't do all that stuff i'd been saving up? Aaargh!
Part time is probably not an option for me - I need to either run the show or get out of my successor's way. But it might be a compromise for you, Maria? Or, working some days from home? Either would cut down your travelling, help you feel less tired, yet still keep you "in circulation with the world"
All the best, and let's not be too hasty about making decisions
Working from home is not an option unfortunately and the unemployment in ireland is huge so i am holding on to my job. Its just a case of learning to get by and beat the odds. I suppose each PD sufferer has ups and downs in the symptoms.
So still each morning i depart with my lunchbox, pills etc to the emerald city in kildare taking the yellow brick train road untill i click my shoes and says 'there is no place like home' ;)
I had to take early retirement as parky wrecked my concentration and operating large excavators needs %100 awareness at all times, that was back in 99 I was 49 and I still miss my job and my workmates
Kindest Regards Fed
I have been Dx for over three years now and still work full time. I generally work 7.30 am to 3 or 4pm and manage a team of inclusion officers who support nurseries and schools where there are children with additional needs and disabilities.
It is a hard, stressful and sometimes emotionally draining job but very rewarding. I also deliver training to up to 50 people at a time and I assess children as part as a multi disciplinary team which diagnoses children with Autism, developmental delays, dyspraxia, speech and language disorders etc.
I am very fortunate that I have voice activated technology for writing reports and have a windows tablet which is also voice activated, without them I would struggle as I have to write many reports.
The best thing for my PD is that I work only term time so every six weeks I have at least a week off which really helps. In a few weeks time it is the summer holidays and I will have six weeks to refuel and relax, it really helps, having regular longish breaks.
Its been a while since we have been in touch but when I see you with your beautiful children you look so contented and happy, there are so many fantastic ladies on this Forum strong willed Ladies who will not bow to the BLACKHEART that dwells within, his viscous plans to bring you down are simply ignored as you plough through the mine field of life, oh a occasional hit will hit home but its a case of getting up knocking the dust off restarting the battle, I cannot name you all or I would take weeks but I admire and respect you all defiant in adversity and you have a tremendous workoad Caroline its always nice to hear how you are doing keep in touch Kindest Regards FED
i firmly believe carrying on working is the best thing, but you either need to get a job nearer home or move home nearer your job. my experience is that the travelling soon becomes more of a problem than the job itself. Particularly in the winter. Driving in the dark and rai can be very dodgy.
I have to take public transport, as a long term diabetic type 1 i did not have permission to drive a car.
I keep hanging in there and just see what happens. Thank you so much for all the support shown here in this topic. Its great
My case.......I struggled for the last five years of my working life......slowly descending from well paid, to poorly paid jobs. I didn't resent the pay because I loved working.
It became obvious at 55 the time had come to sling the towel in. As my doc put it........'we've all got to die of something, it's trying to make the quality of life in between now and that day, as good as we possibly can.'
So I retired (reluctantly). I found the first two years difficult . I wandered around like a shipwrecked hen......40 years of work left a huge void.
I now see the sense of it all. I'd have had to give up eventually.
My wife changed her mind and decided to retire early next year, originally she was going to carry on. I have had no influence on this decision. It is her own personal choice. She wants a bit of life with me before I become too far gone.
So it boiled down to this really with me.........I worked as long as I could, within limits, I am now going to try and salvage what I can before it's too late. Adapting and compromise are the most important things I have learned to do.
Life's a one off and it has slowly sunk into my thick head that this is not a practise run. Money wont give me back the years.
Take what you will from this. I am a great believer in one size does not fit all. Good luck with your final decision, whatever it may be. It will not be easy which ever way you go.
To quote Forest Gump......'That's all I have to say about that'
Thanks for your reply. I had the same path from high paid engineer to customer care doing a job but at least it is a job and pays the bills. I will have to see what winter brings and see how i survice it. Its not so much the work its the travelling to and from work which is a bummer.
But i am convinced it will be a hard decision either way.
It's not made any easier by PIP benefits taking so long to sort out. If you want to know about that Shelly on here has a lot of info about it. I find my doctor and PD nurse are very supportive. I'm still waiting to hear from ATOS about my claim.
I'm really saddened to hear of your employment paths. Maria - I'd have thought your skills as an engineer would have been far too useful for an employer to waste on customer care?
Even if a PWP couldn't manage going out to a drilling rig (or whatever - you can see why fed had to give up driving monster trucks) surely their specialist skills and knowledge would be transferable to a PD-friendly environment.
Maybe there's another slogan here: to partner "I'm not drunk I have PD" on a walking stick we should campaign for an "I'm still as clever as ever, i just have PD" screensaver.
All things come to pass Semele, as George Harrison put it. I just hope Maria gets good counselling when the time comes.
Now I must pack my bucket and spade.......there is life after PD. It's knotted hankies, sticks of rock and ice cream for the next few days.
Unfortunately what also Sarurn had to experience it is hard reality. Once contracts run out and you need to find new employment who is waiting on someone of 54 years with PD. I think there are many more out there.
As i live in Ireland i think its best working for a little while, the whole system is bankrupt here so not so much benefits to look forward to but its a bridge i will cross later. For now i am enjoying the improvement i made after starting with sinemet.
Saturn looks like your off to the beach, nice, hope the sun shines fully. Enjoy yourselfs this weekend all of you!!!
Harsh reality indeed. You're absolutely right about an employer's choice. So much for equality legislation.
Perhaps we all ought to form a co-op and offer web-based services where no-one knows of our PD. A smile, a song, and a tremor.
I feel sad for anyone having to give up their work because of parky, I had to in 99 and I am still not over it yet Im starting to shut down now so must get to bed
best wishhes fed
I'm reluctantly due to retire in September, I would loved to have stayed on and cut my hours down, but my boss has given me no encouragement at all to do this, and I'm sure it's because of my parkinsons. He would obviously like to set someone on who can do the work more efficiently and quicker than I can, which I don't blame him in a way but had I have been more able bodied things would have been different of that I'm sure. I still feel I have something to give in life and get paid for it.