Hi, Yesterday I returned to work on a phased return, it feels good to be back in one way but in reality it is quite difficult. Writing and typing is very hard, sitting at my desk makes me ache. Although I have only worked two mornings so far, I am very tired and restless. I hope that I can return to my normal duties full time in due course. I find reading and consuming info extremely difficult (how do you feel, do others have this problem?)
The PD has definitely progressed thankfully I see the nurse soon. I would also like to know - do all PD sufferers have problems sleeping and resting in a chair/sofa? My sleep is a complete disaster even with sleeping tabs, and when sitting I fidget and am constantly moving - a real pain in the butt!!
all the best Russ
P.S - thanks again to all those supportive emails and posts of support.
the following is entirely my own experience and may or may not be relevant
- it is better to do a good job part time rather than a bad job full time
- a bit controversial, but thinking requires energy and my thinking energy comes from regular small amount of fatty food - avoid sugar and low-fat milk- drink enough water. caffeine can help.
- if taking requip slow release is better as standard makes you fall asleep
- if you feel tired dont just carry on, stop -take a walk or a nap to allow your brain to reset - if you carry on you will just get worse. learn to recognise the signs.
- set your keyboard and mouse parameters to slow to avoid mistakes. use your good hand on its own
hope some of this is relevant
- it is better to do a good job part time rather than a bad job full time
- a bit controversial, but thinking requires energy and my thinking energy comes from regular small amount of fatty food - avoid sugar and low-fat milk- drink enough water. caffeine can help.
- if taking requip slow release is better as standard makes you fall asleep
- if you feel tired dont just carry on, stop -take a walk or a nap to allow your brain to reset - if you carry on you will just get worse. learn to recognise the signs.
- set your keyboard and mouse parameters to slow to avoid mistakes. use your good hand on its own
hope some of this is relevant
I had an Access to Work assessment and as a result have a more supportive chair and a different key board (it is very flat so I can rest my wrists on the desk). Info about the assessments is on the Direct Gov web site.
hi
I had an access to work assessment too. they were extremely helpful and so quick. they recommended a number of adjustments to my work such as Dragon software, a new mouse, a dictaphone connected to the Dragon software and all sorts of other gadgets that make my life easier. A fantastic service.
Caroline
I had an access to work assessment too. they were extremely helpful and so quick. they recommended a number of adjustments to my work such as Dragon software, a new mouse, a dictaphone connected to the Dragon software and all sorts of other gadgets that make my life easier. A fantastic service.
Caroline
I still work full time. You all seem to have decent employers. My manager has been asking the girls at work about me and my PD and how they think I am coping. Most annoyed about this as she has never once asked me how I'm coping.
I am still on a full time contract but after a meeting with my manager appt was made with OHS - decision made for me to work reduced hours until mid June then review again at OHS, hopefully back to full time hours then. (Although it is helpful to finish early at the moment as very tired by about 2:30-3pm normally work till 6pm)
My manager and colleagues have all been very supportive, I did tell them dx when I came back from appt with Neuro. Everybody is hoping I will continue full time and need to know if there are any work place adjustments required to ensure that this can be achieved. I feel very supported.
PB disappointing that your manager doesn't have the courtesy to ask you how you are getting on - maybe she is unsure how to ask?
Take care
My manager and colleagues have all been very supportive, I did tell them dx when I came back from appt with Neuro. Everybody is hoping I will continue full time and need to know if there are any work place adjustments required to ensure that this can be achieved. I feel very supported.
PB disappointing that your manager doesn't have the courtesy to ask you how you are getting on - maybe she is unsure how to ask?
Take care
She is young and putting her own stamp on things which is fine but going about things so wrong in my opinion. Does make me cross that companies seem to get away with treating employees with little respect and knowledge of their rights.
Hi there
I am working a full day tomorrow for the first time since diagnosis/med's. I hope I can fend off the tiredness and manage the day. I am a freelancer so making demands on employers can be tricky because I need people to employ me again in the future. To be honest I deliver staff training so my tremor should not get in the way. It may just make me look nervous. Although it is my left hand and I'm left handed. I will delegate the writing element if it looks dodgy. Ha ha. Wish me luck and best wishes to all of you too.
I am working a full day tomorrow for the first time since diagnosis/med's. I hope I can fend off the tiredness and manage the day. I am a freelancer so making demands on employers can be tricky because I need people to employ me again in the future. To be honest I deliver staff training so my tremor should not get in the way. It may just make me look nervous. Although it is my left hand and I'm left handed. I will delegate the writing element if it looks dodgy. Ha ha. Wish me luck and best wishes to all of you too.
Good luck! hope the training goes well.
A couple of weeks ago my husband had a Fatigue Management Clinic appointment and I invited myself along too (he's the one with Parkinsons' but I reckoned I could use Fatigue Management myself). One of the obvious-when-you-think-about-it points they made was about pacing and "pro-active resting" ie looking at the demands the day is going to make and if necessary organising to rest before some later activity you know will be tiring - instead of pressing on and resting after, as one tends to expect to do. We enjoy announcing pro-active rests now - feels ever so purposeful and efficient - but seriously it's been a useful idea.
A couple of weeks ago my husband had a Fatigue Management Clinic appointment and I invited myself along too (he's the one with Parkinsons' but I reckoned I could use Fatigue Management myself). One of the obvious-when-you-think-about-it points they made was about pacing and "pro-active resting" ie looking at the demands the day is going to make and if necessary organising to rest before some later activity you know will be tiring - instead of pressing on and resting after, as one tends to expect to do. We enjoy announcing pro-active rests now - feels ever so purposeful and efficient - but seriously it's been a useful idea.
Thanks Potplant Sounds obvious when you think about it, doesn't it!! cheers I shall be adopting the proactive rest from now on. Even just saying it sounds positively professional.
Hi Russ,
I have kept on working right through. I work 60%, and that just about works, so long as I make it 60% and do not let the need to get something done bully me into working more than 60%.
Resting - I wad a sweater into a pillow and have a kip on the floor when I get tired. I have an office to myself, so that works. Don't know that I'd have the neck to do it if it were an open plan workplace.
Resting at night - I find paracetamol with codeine really helps. Doesn't stop the leg locking or the numbness, but it does enable me to get to sleep in spite of it, well, sometimes.
Going to work is however a major challenge for me. I am a mathematicians, and we mathematicians are all a bit vain about our mental acuity. Mental acuity? what mental acuity. My head these days seems to resemble cheese - a swiss variety at that. Owning up to cognitive limitations in the society of my colleagues gives me some intuitive feel for what it must have been like owning up to leprosy in medieval times. One colleague even moved his chair so that he wouldn't have to sit next to me in a meeting. Just makes you love to be there. Doesn't really help that I share their horror of my mental state. Alas, I cannot pick up my chair and move away from me.
Oddly, the kids (PhD students) are generally kind.
Even more curious, the creative aspect of mathematics is not at all dead, just the ability to handle the algebra to prove or explain it. John Milton knew and said it better than I can.
http://www.bartleby.com/101/318.html
Hang in there. Don't be bullied.
I have kept on working right through. I work 60%, and that just about works, so long as I make it 60% and do not let the need to get something done bully me into working more than 60%.
Resting - I wad a sweater into a pillow and have a kip on the floor when I get tired. I have an office to myself, so that works. Don't know that I'd have the neck to do it if it were an open plan workplace.
Resting at night - I find paracetamol with codeine really helps. Doesn't stop the leg locking or the numbness, but it does enable me to get to sleep in spite of it, well, sometimes.
Going to work is however a major challenge for me. I am a mathematicians, and we mathematicians are all a bit vain about our mental acuity. Mental acuity? what mental acuity. My head these days seems to resemble cheese - a swiss variety at that. Owning up to cognitive limitations in the society of my colleagues gives me some intuitive feel for what it must have been like owning up to leprosy in medieval times. One colleague even moved his chair so that he wouldn't have to sit next to me in a meeting. Just makes you love to be there. Doesn't really help that I share their horror of my mental state. Alas, I cannot pick up my chair and move away from me.
Oddly, the kids (PhD students) are generally kind.
Even more curious, the creative aspect of mathematics is not at all dead, just the ability to handle the algebra to prove or explain it. John Milton knew and said it better than I can.
http://www.bartleby.com/101/318.html
Hang in there. Don't be bullied.
I struggle with fatigue and have developed the pro-active resting with out knowing it had a name!!
Please would Potplant put some more things they learnt from the fatigue management clinic on the forum. Meanwhile i will ask if I can go to this clinic. Where is the one you went to??
Please would Potplant put some more things they learnt from the fatigue management clinic on the forum. Meanwhile i will ask if I can go to this clinic. Where is the one you went to??
I guess pro-active resting is just sensible planning, but I hadn't really thought of it before as a conscious strategy. The clinic is at the National Neurological Hospital in Queen Square, London. But I don't think that it is necessary for a Fatigue Management service to be linked to a neurological service, as the advice is quite generically applicable.
As I remember, the other most useful things they considered (assuming that workplace assessments and adjustments were done, like chair, voice recognition software etc) were:
travel and commuting - looking at any assistance eg taxi scheme and employer assistance for travel, so subsidising taking a taxi rather than the Tube home if really tired;
planning days so as not to have both early and late appointments (my husband quite often has evening seminars etc to chair) or appointments requiring travel to different places in the same day - Commonsense again I know, but having taken for granted all ones life that all these things are possible, it really helps to consciously take account of the fact that they are tiring!
None of this is rocket science, but I hope it helps. All the best.
As I remember, the other most useful things they considered (assuming that workplace assessments and adjustments were done, like chair, voice recognition software etc) were:
travel and commuting - looking at any assistance eg taxi scheme and employer assistance for travel, so subsidising taking a taxi rather than the Tube home if really tired;
planning days so as not to have both early and late appointments (my husband quite often has evening seminars etc to chair) or appointments requiring travel to different places in the same day - Commonsense again I know, but having taken for granted all ones life that all these things are possible, it really helps to consciously take account of the fact that they are tiring!
None of this is rocket science, but I hope it helps. All the best.