I'm interested in tools & techniques people have found to help them stay in work.

I work for a big company that supports me very well. I have a flexible work pattern, voice recognition software to combat poor dexterity and although I don't need it yet I know that things like reserved parking will all be provided as and when required.

I don't feel quite as mentally sharp as I used to and I'm unsure whether that is caused by Parkinson's, depression, meds, being 46, having young kids or something else.

My question is primarily aimed at people who have been able to stay effective in work after diagnosis. what did you find hard? how did you cope?

Elegant Fowl

Hi EF, I am now 52 and have been through what you are going through now, I went through all the adjustments and had a very supportive employer. It seems that all the tools you need to stay in employment are already being deployed, but what you have to remember is that PD is progressive and medication can only do so much. I hope you can stay in work as long as you need to, but I missed a trick and it is important to think about the future and plan for it. While you may feel loyalty to your employer (My big mistake) you need to be more loyal to yourself and family. Whatever you do dont go part-time and miss out on NI contributions. This will lead to loss of any ESA in terms of NI contributions. Life with PD is hard enough!! good luck Wendy

Hi EF

I am 51 this year and don't intend giving up work. I work for the NHS as a supervisor in portering and is very busy 24/7 I also do 12hr shifts which we have been on for the past year. The benefits is that we have more time off better for me. I find that I do most of my heavy work first so that I don't have burnout + I don't walk very well every day I'm shuffling (song) as my 10yr old son said. The middle part of my shift I spend in the office doing e-mails ect this gives me recovery time for the last part of the shift. Just depends on work load my nights are a dawdle though can be busy for the first 5hrs. I tend not to take My meds at regular time I feel you get dependant on that time and must take them, so I take them when I feel the need ie: tired, ache, cramps. It works for me I know not everyone will agree but you will find that as you go on you adapt. Good luck

Ricky

Hi Elegant fowl

I still work 30 hours a week, in retail. Also live on my own. Fatigue is the thing that slows me down just get so tired and not sleeping very well at at the moment so that makes it difficult.
It is a physical job moving stock around and we get a delivery every week of 600 units which we have to carry up two flights of stairs. On my feet all day. The company I work for are aware of my condition but never ask how I am coping. If I am unable to do the job, or show signs of slowing down that is when I feel sure, they will show an interest.
The girls also at work know of my PD they are lovely, good staff!! The job keeps me going but it is getting harder as my legs feel like lead most days, walking is something I have to concentrate on as I tend to drag my left leg.
DX with PD at the age of 48 am now 55 years young.. No choice but to work and keep going really.

love PB x

I still run my own training/consultancy business full time.I'm 5 years into dx at 58 years old. The hard bits are

1. Presenting in front of a room of strangers feeling very self conscious of any shakes
I now sit down with a table etc to my left so I can rest my arm on it possibly clutching a pen, and have practiced relaxing it mainly by relaxing my shoulders.
I decide not to worry and I divert attention to the slides by using a laser pointer in my good hand to point to words etc

2. getting tired travelling
I used to get up early and battle through traffic. Now I tend to travel the night before and stay over, and thus avoid traffic and start the day in a leisurely fashion
Also bought a very comfy automatic car. These options cost money but not as much as packing up work!

3. carrying training equipment up and down stairs in and out of car parks
I now swallow my pride and find someone to do it for me and on the way to the car I quietly explain my problem. They never seem to mind; the problem was my pride

I'm sure every job carries different challenges and different opportunities for support. I have to keep telling myself I can do it even if I look a bit wobbly. I speak a bit more slowly than I used to but I think I gabbled before so have reset the balance!

Meanwhile I am looking at making teaching materials to sell when i can't do the teaching myself any longer.

I work part time because i can't work effectively full time. I could sit around getting paid for doing nothing but it would catch up with me. I would rather get paid less and know i can justify my wages. (My NI payments went down the toilet a long long time ago.) I also have a short easy commute - no point wasting limited mental energy on travel. Make the most of your current skills - it gets harder to learn new stuff, but not impossible.
I should eat and drink sensibly and not spend hours on the home computer but I don't.
I enjoy my work and that is probably the most important thing.

I had to give up work because of my Parkinsons - the travelling was begining to worry my family, although I thought it was o.k

It's been 16 months now and I'm cheesed off not being in work but at 65 coming up 66 no one is going to employ me, so I'm stuck with retirement.

I am a Director of a Crediit Union, unpaid volunteer, but that's only a day or so a month.

Wish I could 'roll the clock back'.

Mike

Hi. I work in the helping services f/t. supported by understanding boss who agreed to me taking extra unpaid leave planned in advance per year so i can use it to rest or 'do life while I can' . Just makes me feel more free and i won't spend my best years so tied to work. Also, lucky that I can plan my own day and manage most things, and that i didn;t have to stand or walk too much when i was at my worse. My former job involved lots of this plus lots of hand writing which i would not have been able to carry on with, whereas current job is more sit-down, details make all tthe difference. I'm 40.

hi Elegant Fowl
I has diagnosed 6 years ago and have continued working full time as an Engineer designing oil and gas facilities. There is little PD can do to stop me .... so far.
I work ft and recently 6 days a week. On the plus side I get my e-mail up to date due to insomnia although I don't send e-mails in the small hours as I got to much gip. I have worked overseas in Kuwait and Lybian desert since diagnosis and passed the company medical. Again with little concern and no real problems.
Travel is a grind sometimes - like standing on bus and train for an hour tonight, but office work is OK
I attend lots of meetings and found my voice softening and have had two groups of Lee Silvermans sessions. I'm not sure it made me speak better but gave me more confidence. I realised I was better at speaking (and trained now !!) than many of my peers.
I sometimes host clients at sporting events which can be a little daunting - in large jostling crowds and trying to get to your seat if the steps are steep.
My colleagues did ask about my health a few years ago when my symptoms got worse but now I am accepted. Only one person in 6 years suggested I should not be working. And he's now left.
My main uncertainty is the pension. If I give up work I get reduced pension due to early retirement. If I am written off sick by 2 doctors I get my pension without any reduction, and .... possibly... an ex gracia top up up to a maximum of if I worked to 65. I want to be able to do something when I retire so being at work until I keel over is not on the cards, but leaving early I loose about half my pension and don't think I'll have enough to live comfortably.

hey ho

westby

hi

I still work full-time for the education Department as an inclusion team supervisor.

I manage a team of four people, working with children 0-5 with special educational needs. It can be quite stressful and very busy but I love it.

I attended meetings, observe children, give advice support, supervised the team, provide training and a whole host of other things.

I work with paediatrician's, speech therapists, educational psychologists, health visitors to a but a few.

My employer has made a number of adjustments to enable me to keep working, such as Dragon software and a dictaphone for meetings as my writing is illegible