Hi.
I was dx 11 years ago, and for the last couple of those have only left the house for medical appointments. This is partly due to the limitations PD imposes on me and partly because I feel safer at home, whereas being outdoors represents worry and panic. I rarely even go into the back garden, as I may encounter neighbours.
However whenever I dream - and I dream A LOT, in very great detail - I am ALWAYS 100% fit, as is everyone around me. Sickness or physical shortcomings NEVER even enter the dream's thread, as my mind meanders along.
Perhaps it is because of this that during normal waking hours, when I am acutely aware of my own physical problems and pain, wallowing hopelessly in self pity, I perceive everybody else I come into contact with - in this forum and elsewhere - as being perfectly fit. This entitles me to expect everyone to feel sorry for me but at the same time allows me to close my ears to THEIR problems.
When I suddenly realise what I'm doing I alter my perceptions, but then normally picture everyone as being in an identical physical boat as myself. This, too, is patently absurd, as the idea of all members being equally restricted to me at 61 years' old and 11 years' dx, is daft.
Clearly it is difficult to establish, when meeting forum newcomers for the first time, how disabled or restricted they are, during both their on and off periods. Equally, once you have done so and become good friends, it can sometimes be EVEN MORE difficult to ask that person again (very rude!) if you forget, which ALL us PD patients do regularly.
So one is aware that there are thousands of members out there, at every possible stage of PD degeneration and loss of self-sufficiency, and one should tread very carefully in order not to upset those further down that track than ourselves. It is oh so very easy to inadvertently drop in a line like "Oh yes, I have terrible PD; anyway I must fly or I'll be late for work" when talking to somebody who had to give up work 8 years ago, and is now 95% bedridden and in crippling pain. The recipient's day could be ruined by such a comment. Other comments like "What are you doing this weekend?", or "Have you booked your holidays yet?" can be equally destructive if the speaker has previously been made aware that this other person is in bed more or less paralysed, or totally penniless for some reason.
However warm and close you believe your forum/email relationship is (and with PD I've found a huge number of helpful and warm-hearted friends), NEVER forget that the plights and predicaments of those friends could be much worse than your own, and that PD sufferers' emotions are very, very brittle.
Ray.
I thank you for that Ray. It would appear that because I take the time & trouble to look at least half way presentable, and because I am (usually) articulate and self effacing, everybody from the consultant to the carer to the neighbours aassume that I am "coping". I too avoid people and this probably adds to their opinion of my capabilities.No see you, all must be well. I have no desire to cause anyone concern, but I just sometimes would like my distress to be recognised
Short of bursting into tears, just what does one do? Grin & bear it seems to be the concerted opinion. Or else put up & shut up. This is probably the most selfish post I have ever typed, but it is honest
Short of bursting into tears, just what does one do? Grin & bear it seems to be the concerted opinion. Or else put up & shut up. This is probably the most selfish post I have ever typed, but it is honest
Dear Ray
The forum is for pwp and for those who care for loved ones.
Some of us in different stages of this cruel disease. We all chat about our everyday life. Holidays , hobbies, birthdays, work and family. Also we know these once everyday normal activities we do will one day cease . As Normal life with this PD becomes even more difficult each day, week, month..I know my PD has progressed over the last year but not giving in, still work but for how long I don't know..
We all cope the best way we can and I have found you and your sense of humour a great tonic.
I know that you spend most or all of your day in bed because of the PD. And how you always sound so chirpy is a credit to yourself. You always bring a smile to my face Ray, you are part of the fixtures and fittings.
If any of my posts have in anyway upset you or been insensitive I truly apologise.
love PB x
The forum is for pwp and for those who care for loved ones.
Some of us in different stages of this cruel disease. We all chat about our everyday life. Holidays , hobbies, birthdays, work and family. Also we know these once everyday normal activities we do will one day cease . As Normal life with this PD becomes even more difficult each day, week, month..I know my PD has progressed over the last year but not giving in, still work but for how long I don't know..
We all cope the best way we can and I have found you and your sense of humour a great tonic.
I know that you spend most or all of your day in bed because of the PD. And how you always sound so chirpy is a credit to yourself. You always bring a smile to my face Ray, you are part of the fixtures and fittings.
If any of my posts have in anyway upset you or been insensitive I truly apologise.
love PB x
Yes. My PD is fairly mild at present and I tend to think everyone else using this forum is the same. Possibly some of my posts have been a bit flippant and insensitive for which I apologise. You are an inspiration to us all Ray and I always enjoy reading your witty asides and your occasional mischievous humour. You are the best thing to come out of Hull since Robinson Crusoe!
Point taken Ray. Its not always easy. I do think of others for whom each day can be difficult and hope things work out the best they can.
Ray, you're right, I have many friends who see me out with my wife and invariably comment, "Well, you look alright, healthy etc., etc.,.
they never see me when I have fallen over or at 2.30am when I can't sleep or have had frightening nightmares.
Like so many of us, I tend to reply "I'm fine" when asked "how are you doing?.
It's not strictly true, but I'm a lot better than some people are.
I tend to make light of my problem and when asked "what's Parkinson's ?"
I reply "An uncontrollable urge to interview people!"
Maybe I don't take life as seriously as it may be, but, if I can have a laugh now and again, that'll do for me.
Keep your hands on your holiday money !
Cheers,
Rhino.
they never see me when I have fallen over or at 2.30am when I can't sleep or have had frightening nightmares.
Like so many of us, I tend to reply "I'm fine" when asked "how are you doing?.
It's not strictly true, but I'm a lot better than some people are.
I tend to make light of my problem and when asked "what's Parkinson's ?"
I reply "An uncontrollable urge to interview people!"
Maybe I don't take life as seriously as it may be, but, if I can have a laugh now and again, that'll do for me.
Keep your hands on your holiday money !
Cheers,
Rhino.
Hi Ray,
Thank you for being so open and honest, since Dx i have trawled through this site looking for clues into this awful disease and what people are experiencing/have experienced. The up-beat positivity threads have been encouraging and quite frankly i understand and welcome them (choice being sink or swim scenario?) and not wanting to be all doom and gloom! BUT...being a realist without prying into peoples lives and questioning them directly i think we need to know (p.w.y.o.p) of the reality that lies ahead and what to look out for, awareness is the key. Rico has sugested a thread for 10 year plusers on how their parkinsons has progressed and what meds they have taken over the years etc a bit like the age of dx one set up recently, i think this would be really enlightening for all to see and compare and may help give us better more informed choices about what meds to take in the future and arm us with challenging questions for our neurologists!!
People have certainly opened up over the last few days and i for one salute you all!
Thank you
Diane
Thank you for being so open and honest, since Dx i have trawled through this site looking for clues into this awful disease and what people are experiencing/have experienced. The up-beat positivity threads have been encouraging and quite frankly i understand and welcome them (choice being sink or swim scenario?) and not wanting to be all doom and gloom! BUT...being a realist without prying into peoples lives and questioning them directly i think we need to know (p.w.y.o.p) of the reality that lies ahead and what to look out for, awareness is the key. Rico has sugested a thread for 10 year plusers on how their parkinsons has progressed and what meds they have taken over the years etc a bit like the age of dx one set up recently, i think this would be really enlightening for all to see and compare and may help give us better more informed choices about what meds to take in the future and arm us with challenging questions for our neurologists!!
People have certainly opened up over the last few days and i for one salute you all!
Thank you
Diane
A very big THANK YOU to everyone who's contributed to this thread, it got much more of a response than I expected.
Keep them coming!
Ray.
Keep them coming!
Ray.