Hi all, I hope its okay that I share my story, another sad story that’s all ye need! But any advice would be gratefully appreciated. My world fell apart in the last year. I know very “melodramatic” given what everyone has gone through on this website.
Last year at 30 years of age, I was diagnosed with Early Onset PD.
In my heart I knew it before the final diagnosis but I still both shocked and devastated. Six months later my already failing very long term relationship ended, I took it very badly. I felt like I saying goodbye to more than him but also to a chance of a normal life.
Now six months later again, my office job is in jeopardy as I’m making mistakes unrelated to PD but nonetheless the stress has been extremely difficult. I’m wondering should I tell my boss about my new disability although he may not want me regardless and I don’t want to play the pity card. Feels like its just knock after knock and somethings goto to give.
In truth, I’m finding a five day week exhausting. But the thought of losing my job is the last straw, a farewell to my independence and purpose to my day. When I say this, I do NOT want to offend anyone, I’m speaking from how I feel at this moment in time and my moods change like the wind.
But I question am I wasting my time being so stressed and unhappy in this high pressured job when I should be making the most of my time before my PD progresses even further. Daft question, just wondering is there any jobs suited to PD?
Sorry just looking for a bit of hope and guidance. Thanks for reading this far
not melodramatic at all. perfectly understandable. mistakes at work may be related to pd - there are often problems with concentration, memory etc - what meds are you on - they might help if changed/increased. i dont know what your employer is like but i generally go with telling them. i have worked part time for 4 years. i think it better to do what you are good at for a short time than longer at something boring. your employer has a duty to make accomodations.
Welcome to the forum,as Turnip says, mistakes could be linked to PD as it affects memory and concentration.
I told my employer immediately after I was given the diagnosis (local authority early years dep't) and they have been amazing, very supportive. I was even given a promotion 6 months after diagnosis , because I do a damn good job!!.
I had an 'access to work' assessment and it identified some tools to help me to continue my job. As a result I now have voice recognition software on my PC, a dictaphone so I can still take minutes, notes etc. I have a roller ball mouse which has been a great help. I work full time and have been diagnosed since March 2011.
I now have an I-pad on it's way, also voice activated, and a smart phone linked to my diary as I can't write in a paper diary.
If you are struggling, be honest and get help, it is out there but people can't help you if they don't know. Employers have a duty to make 'reasonable adjustments' for disabled people and they 'must not be treated less favourably' because of a disability. (Disability Discrimination Act 1995)
I well remember those awful feelings after diagnosis and feel for you.
I’m sorry to hear of all your bad luck so far and agree with turnip and Caroline that PD often causes memory and cognitive problems. I also agree that you should check out your medication, as the right balance can minimize those problems.
I believe that keeping busy doing a job you enjoy, even if it poses more of a challenge that it would without the condition, is good for you. It keeps you physically and mentally active and takes your mind off your symptoms. Only you can decide whether to tell your boss, as I suppose it depends on how well you get on with him. You don’t say what your job is but, if it’s unreasonably stressful, it might be better to look for something else.
I’m much older than you, at 65, and I was diagnosed three years ago although I have known for five. I have been Secretary of my city opera company for the past five years and have just been voted on for another year. The job can be stressful at times and the workload is certainly heavy but no-one in the company knows anything yet. It’s just my way of dealing with things and it allows me to carry on as normal for a while longer. I’m very fond of the people and know that the feeling is mutual but, like you, I don’t want pity. I will probably start telling people sooner or later but, I don't want to do anything to spoil the happy atmosphere we all enjoy.
Your diagnosis is quite recent and your emotions will still be raw, so my advice would be to sort out the medication first, then re-assess the situation when you’re feeling stronger but, whatever you do, don’t give up. As has been said before, there IS life after PD!
Your story is very touching and I do feel for you. I was disgnosed in November and, at first, could only tell my immediate family but I found that my concentration was affected at work because, as I now know, I was carrying this big thing around with me on my own. Life became so much better when I told my boss who was very sympathetic and has helped to reduce my stress load. Just tell a few people at work whom you can trust, who can look out for you and appreciate why you have bad days. Are you a member of a union, they are very good at helping if you run into problems at work with a disability. Good luck.
I work in an Engineering Factory on the shop floor, So when I was told I had PD I thought that it would be impossible to carry on working, but I told my Manager and 3 years later I am still employed by the same company. They first of all did a quick look at what was a problem to me and put into place procedures to help, I made the decision to tell everyone so their was no talk behind my back but that is a personal choice. If I had kept quiet im sure I would have been dismissed as not working properly. so It worked for me.
Hope you have better luck from now and I even get down by my PD now 13 years after it first started.
Hi all, Thank you SO SO SO much for all your replies. Ye have been so kind in your responses.
I only now realise how unbelievably isolated and lonely I've been feeling, I've have been terrified to go on this site even though everyone has been so welcoming. Any knowledge seemed to frighten me rather than empower me.
I now admit I've carrying around a huge weight around by not telling people, as I only just told my siblings who have been away traveling, a year after the DX. I confined in two friends just recently also, as I really was at breaking point.
Think I need to tell my boss, come what may. Its a design job, someone asked about it earlier.
Suppose its early into the DX yet and no doubt there is a grieving period and without my BF its an extra challenge but your stories are inspiring.
I was diagnosed a little over 2 years ago and, with the help of drugs, my life has been sort of normal since. I say "sort of normal" because I am not sure that this overwhelming tiredness I am experiencing is caused by the PD or by the drugs. In any event, when people on this forum say there is life after PD, there really is and I feel certain there will be great improvements in PD drugs in the next several years so you may not be strapped with PD your whole life.
As for your employment, I am not sure what the law is in the UK, but it is probably similar to ours in Canada (since we are essentially a paperback version of your law). In Canada, an employer has a duty to accommodate a person with a disability "to the point of undue hardship" to the employer. A person with PD would certainly qualify; although, I have to say, I don't consider myself disabled. Fortunately, as my own boss, I have never had to test those waters....... but I would have done so, had it been necessary.
Take heart. Once you get on the right medication, you will enjoy life as if the PD didn't exist.
I was dx in Nov and am 36. I am still swimming blindly regards to what will happen, am i doing everything right, am i taking the correct medication, should i be doing more etc.....
I told my boss fairly early on, as i felt it was best to do that. The company have been suportive, offered me alternative seating, entrance to the office and basically asked me what i require.
I've told a few people at work but not made a grand announcement as i dont want sympathy, or poor Zoe. however it helps to have some people around you whom understand that some days are better than others.
i do feel down at times and i do feel upset at what has happened to me, and fed up of feeling a bit ill while i balance my meds and sleeping, but i try to stay positive and if and when im unsure about anything i ask my nurse, it normally takes a week to get a response but she is helpful and listens.
Things will get better just try not to look to far in the future and take small steps at a time. THINGS WILL GET BETTER.
