Working with Parkinson's


#1
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

#2
:sunglasses: 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

#3
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:grin: 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):laughing: 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

#4
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

#5
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.

#6
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.

#7
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

#8
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.

#9
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

#10
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

#11
Hi EF,

I was diagnosed 2 years ago at 48 and have found that I get anxiety effects when speaking to groups or leading workshops which are regular parts of my job as a management consultant.. Also find myself much more self conscious in meeting new people as my movement is noticeably stiff and clumsy. Another issue is fatigue due to poor sleeping pattern.

I have needed to alter the focus of my job to take on lower profile roles and my employer has allowed me to do this so far and it hasn't stopped me from working hard and travelling a lot to places like Singapore. I Think you need to adapt psychologically as much as physically and I probably suffered from my reluctance to take anti depressants. Whilst I will need to keep working for another 5 years the main thing is to get the work life balance right so i can enjoy the good years and prepare for a quite different lifestyle.

Best wishes


MYN

#12
hi. May you never.

Whilst I can understand you taking a step back from the front line, as it were. I and taking on a higher profile role.

All the nursery's and preschools, and other professionals that I work with know that I have Parkinson's, so, ignore it when I shake. I have taken on more responsibility recently as my manager has been given a promotion, which impacts on my role having to take on some of her original responsibilities.

I did originally find it difficult to get my head around the idea of people feeling sorry for me.Or thinking I was nervous, but everybody's been incredibly supportive, if I go into a meeting with people I don't know, I just say, do you mind if I use my dictaphone as I have Parkinson's and can't write. No one has ever refused, or made me feel uncomfortable.

I really love my job and I have no plans to leave it any time soon.

Caroline

#13
Hi Carolineb211
I am still working full time (59 and diagnosed last year)I work as a Practice Manager for a group of 6 GPs (funnily none of them recognised the symptoms and now feel very guilty!!) As I have a chronic back problem all my problems were assumed to be related to that, it took well over a year before I was diagnosed (by an orthopaedic surgeon!)
My employers have always been very supportive, I have a space in the doctors' car park and they altered a room to provide an office downstairs.
I feel it is my work that keeps me going, it has always been important to me and I am determined not to let PD rob me of that.
All the people I work with support me - especially the nurse although sometimes a bit too much, since starting medication things have improved dramatically and I have to remind them that I can now do a lot more!
Good luck to you and may you keep working!:grin:

#14
thanks flower child,

where are you based?

Unfortunately many GP's do not know much about Parkinson's. I was lucky that my GP referred me immediately to a specialist and was dx within 6 months of visiting the GP.

unlike you, I cannot tolerate Dopamine Agonists very well and can only have a low dose before getting extreme symptoms (hallucinations,sleep paralysis etc)

The low dose does manage my symptoms up to a point but not very well.

Hope you are able to carry on at work as long as you want to

Caroline

#15
Hi, I can fully relate, in fact it was the anxiety that comes with public speaking the effects me the most philb

#16
Hi Carolineb211
I am based in East Sussex.
Sorry to hear about your problems with medications, I have been lucky so far and keep my fingers crossed that this will continue but as we all know the one thing you can't predict or plan for is PD!

#17
Hi Flowerchild,

I'm 49 and was too diagnosed last year, where in E.Sx do you come from? as i live in Seaford and am under DR Mcleod in Eastbourne!!!!!

Diane

#18
Hi Drobb
I am based in Eastbourne and also under Dr McLeod at Eastbourne DGH, also see Louise the PD nurse :sunglasses:

#19
Hi again Flowerchild,

Maybe we should discuss Neuro privately? Louise has been, and will remain my first point of contact when i need her. Feel free to private e-mail me! I belong to new PD group set up for early onset in our area organised through Fell Duncan and PD social worker (name gone out of my head!!) and we are next meeting up on Wednesday 5th September at Halland Forge. I work at SX Downs college in E'Brne and maybe nice to meet up sometime/share experiences etc?

Would be nice to meet you,

Best wishes

Diane