my feelings are down at the moment cause i have been in pain with pd but anyone asks you, how you are,every comment would ususally be i,m fine.but lately i think why im i doing this.last 2 weeks i have rethought my thinking to having pd and i now ask for help when needed,be honest and truthful and ,that can be hard at moments but i think im doing alright.
Hi Janine.
Sorry this is such a late reply, but I really crash out when I go to bed, unlike you poor guys and then there is a lot to do first thing.
I'm sorry too that you're in pain, just like my o/h. He mentions joint pain often these days and I catch him holding his right arm a lot.
Just like you too, my o/h used to say that he was fine when people asked how he was but it drove me mad and finally he has come round to saying - not too bad or suchlike.
It's best to be upfront but not maudlin. There is power in honesty and a better self assurance. It's knowing how to get it right. O/h has got a little script ready in his head now. Brief and to the point. We worked it out together and have been pleased with the results.
One of his sisters'rang yesterday. He gave an assertive reply and lo and behold she didn't say, "Oh good," as she would if he'd said fine and rushed onto something else. Instead she listened properly. Result!
Take care today
JC
Sorry this is such a late reply, but I really crash out when I go to bed, unlike you poor guys and then there is a lot to do first thing.
I'm sorry too that you're in pain, just like my o/h. He mentions joint pain often these days and I catch him holding his right arm a lot.
Just like you too, my o/h used to say that he was fine when people asked how he was but it drove me mad and finally he has come round to saying - not too bad or suchlike.
It's best to be upfront but not maudlin. There is power in honesty and a better self assurance. It's knowing how to get it right. O/h has got a little script ready in his head now. Brief and to the point. We worked it out together and have been pleased with the results.
One of his sisters'rang yesterday. He gave an assertive reply and lo and behold she didn't say, "Oh good," as she would if he'd said fine and rushed onto something else. Instead she listened properly. Result!
Take care today
JC
HI JC
I'd be very interested to know what form the assertive reply took?
Lyn
I'd be very interested to know what form the assertive reply took?
Lyn
Hi Lyn P
Happy to oblige. Instead of the usual,"I'm fine," he said. "Not very good I'm sorry to say." As we always have our phone on speaker I heard the response. "Oh dear."
O/h then went on to describe exactly how he felt, told her in no uncertain terms that he wouldn't be doing one of the things she had previously suggested and why and a whole lot more about the difficulties of our daily lives.
It worked wonders.
Kind regards
JC
Happy to oblige. Instead of the usual,"I'm fine," he said. "Not very good I'm sorry to say." As we always have our phone on speaker I heard the response. "Oh dear."
O/h then went on to describe exactly how he felt, told her in no uncertain terms that he wouldn't be doing one of the things she had previously suggested and why and a whole lot more about the difficulties of our daily lives.
It worked wonders.
Kind regards
JC
I also find it difficult to decide whether to go down the"I'm fine" route or to tell it as it is. I think that I explain my circumstances, difficulties & feelings on a need to know basis. It doesn't always work - I find that a lot of people (including neuro consultants) are attuned to any positive statements and block out any negative ones. I once told my sister when she routinely asked how was I "I cannot answer that If I say I'm fine I'd be lying, if I say I'm not you will remember an important engagement" She tends not to ask anymore. Actually she tends not to 'phone anymore
Hello A/b
Yes I take your point. We make it a rule never to tell the medics things are fine for exactly the reason you describe. Rather shoot from the hip.
It does depend too who wants to know. You probably wouldn't go into detail with an acquaintance but hopefully with relatives and good friends you could be honest. I'm really sorry that didn't work for you. How alone that must make you feel!
I think we may be getting a bit militant, but it is working for us with my o/h's family and doesn't feel like such an upward struggle. It's hard enough coping with the 'thing' without pressure being heaped upon you from outside influences.
x JC
Yes I take your point. We make it a rule never to tell the medics things are fine for exactly the reason you describe. Rather shoot from the hip.
It does depend too who wants to know. You probably wouldn't go into detail with an acquaintance but hopefully with relatives and good friends you could be honest. I'm really sorry that didn't work for you. How alone that must make you feel!
I think we may be getting a bit militant, but it is working for us with my o/h's family and doesn't feel like such an upward struggle. It's hard enough coping with the 'thing' without pressure being heaped upon you from outside influences.
x JC
Hello all
My worst nightmare occurred on Sunday. I got ill, really ill, a recurrence of C Diff (first contracted in hosp)!! At 5pm I started feeling queasy and from 6pm - 11.30 am yesterday ... well I wont go into the gory details. The worst of it was over then but I was left weak and drained, unable even to sip water and couldn't do a thing.
It's always been a big fear of mine that I might get unwell and not be able to be there for my o/h.
Actually he coped magnificently. I was on sofa downstairs and he refused to leave me so laid beside me on a sun lounger mattress all night. He got up and down a lot to help me and keep the fire going, and from the floor that wasn't easy, hence he looked exhausted all day yest which concerned me a lot and is still excessively weary today.
Thankfully I'm now on my feet, albeit a bit wobbly and trying to rehydrate myself.
It's made me even more fearful for the future.
My worst nightmare occurred on Sunday. I got ill, really ill, a recurrence of C Diff (first contracted in hosp)!! At 5pm I started feeling queasy and from 6pm - 11.30 am yesterday ... well I wont go into the gory details. The worst of it was over then but I was left weak and drained, unable even to sip water and couldn't do a thing.
It's always been a big fear of mine that I might get unwell and not be able to be there for my o/h.
Actually he coped magnificently. I was on sofa downstairs and he refused to leave me so laid beside me on a sun lounger mattress all night. He got up and down a lot to help me and keep the fire going, and from the floor that wasn't easy, hence he looked exhausted all day yest which concerned me a lot and is still excessively weary today.
Thankfully I'm now on my feet, albeit a bit wobbly and trying to rehydrate myself.
It's made me even more fearful for the future.
JC, I am sorry that you have been unwell (sue the hospital!) You have highlighted a point that gave me pause for thought. Carers have their off days, ill days and fed-up days too. I for one will try to be less selfish, less demanding & more appreciative. (I am not implying that your o/h is selfish or demanding, just that I have recognised that I can be) Hope you are feeling much better
Hi,i need some help at the moment or good advice .in jan i was dx with pd after a dat scan and started medication straight away ,but last week when i was in hospital another consultant saw me and said that the scan was inconulsive and was,nt sure .i dont know which way to turn and im very confused and dont know which way to turn i have got 1 week for i see this consultant which had a different opinion,and took me of all my pd meds but i went back to one because of the tremours.
surly a consultant would have to be 100% sure before telling anyone they have parkinsons because the impact on their lives will change forever.i feel so alone with this dilema.
I can only suggest Janine that you put your concerns to the consultant as honestly & clearly as you did in your post. Really a week is not long to wait. I too have experience of the "have I/haven't I got PD" syndrome.I was diagnosed in March 2009 after an MRI scan ruled out other causees of my tremor. Medicated in Jan 2010, then the diagnosis was queried inOct 2010 and a DaT scan ordered which I earlier this month. My next appt with consultant is Aug 2011! So I do understand your dilema.
My understanding is that even a DaT scan does not offer 100% "proof" of PD, I think it is something like 97%. But it is the best we have got. As you have been allowed to reintroduce PD medication I think that you can assume that you are considered to have PD
I am sorry that I cannot give you a more helpful answer. Perhaps a chat with the helpline nurse might be an idea?
My understanding is that even a DaT scan does not offer 100% "proof" of PD, I think it is something like 97%. But it is the best we have got. As you have been allowed to reintroduce PD medication I think that you can assume that you are considered to have PD
I am sorry that I cannot give you a more helpful answer. Perhaps a chat with the helpline nurse might be an idea?
Every consultant's assessment is potentially different. A lot of it is down to his own interpretation of all the available data, and applying this to his own experience.
What SHOULD happen is that, say, two or three consultants should assess you separately, and they should then meet and compare notes. They would then come up with a joint conclusion, and ONLY THEN tell you the outcome.
What ACTUALLY happens is that each consultant gives you a different conclusion, and the patient is stuck not knowing which to believe. It's a shambles.
What SHOULD happen is that, say, two or three consultants should assess you separately, and they should then meet and compare notes. They would then come up with a joint conclusion, and ONLY THEN tell you the outcome.
What ACTUALLY happens is that each consultant gives you a different conclusion, and the patient is stuck not knowing which to believe. It's a shambles.
Thank-you ray and a.b for your response and i total agree in a dx and telling the patient has got to be properly handle correctly.see gp this morning and hopefully she would advice me what to do.im thinking of coming of my parkinsons drugs ,the only one im taking which i put myself back on was selegiline.i will have to wait on the gp decision this morning. may be im just mixed up and dont know what to do!
Usually the "experts" haven't got a clue either, so you won't be alone 
Good luck!
x
Good luck!
x
Dear Janine
I agree with all that Ray and AB have said, but my o/h and I have also recently been thrown into confusion.
In April this year after a DAT Scan we were told that o/h definately had p/d as there was not a drop of dopamine in his brain. This was by a locum consultant from Belgium, a P/s expert and in whom we had a lot of confidence.
He told us that o/h would be reviewed re an increase of meds at three monthly intervals. The poor deluded man must have thought that the NHS is conducted as well here as the health care services in Belgium.
In fact o/h saw the consultant here this month, not a p/d expert, yet a renowned neuro who suggested that o/h has LB/p/d and his written report is all about suggestion, nothing positive.
I've now come to realise that the key thing is to be referred to a neuro who specialises in p/d. A nurse friend warned me about this prior to o/h's dx. She wanted us to go to London but as I personally see four cons there and just going for the appt's is such a trial in every respect when you feel ghastly to start with we chose to go local.
I now regret that decision because I feel all at sea.
It might be a good idea Janine, for you to google p/d experts in your area. You are quite within you're rights to ask to be referred to one.
Ab. Thank you as ever for your kind thoughts.
I agree with all that Ray and AB have said, but my o/h and I have also recently been thrown into confusion.
In April this year after a DAT Scan we were told that o/h definately had p/d as there was not a drop of dopamine in his brain. This was by a locum consultant from Belgium, a P/s expert and in whom we had a lot of confidence.
He told us that o/h would be reviewed re an increase of meds at three monthly intervals. The poor deluded man must have thought that the NHS is conducted as well here as the health care services in Belgium.
In fact o/h saw the consultant here this month, not a p/d expert, yet a renowned neuro who suggested that o/h has LB/p/d and his written report is all about suggestion, nothing positive.
I've now come to realise that the key thing is to be referred to a neuro who specialises in p/d. A nurse friend warned me about this prior to o/h's dx. She wanted us to go to London but as I personally see four cons there and just going for the appt's is such a trial in every respect when you feel ghastly to start with we chose to go local.
I now regret that decision because I feel all at sea.
It might be a good idea Janine, for you to google p/d experts in your area. You are quite within you're rights to ask to be referred to one.
Ab. Thank you as ever for your kind thoughts.
hello....been having trouble with logging on here....when I get the time...
Just read your last few days posts, Janine, Anneb., and JC.
It sounds like its very frustrating dealing with all the medical people there in the UK. I've found that here...they are very forgetful (or busy?). My cpap machine for my breathing, was not ordered when it was supposed to be...now it will be 6 weeks late, by the time I get it. Sleep is very difficult, since I wake up realizing that I am not breathing, and struggle to catch my breath. They have done nothing regarding my tremors or muscle spasms (now seem to be spreading all over). They don't want to tackle that until my breathing is under control. The medical folks seem to care, and listen really well, but the follow up is poor. I know I am just at the beginning of this weary journey,but I will pray for us all....that we start to find the answers we need....
hope today is a better day for you all.....off to check games....then do my errands....
Just read your last few days posts, Janine, Anneb., and JC.
It sounds like its very frustrating dealing with all the medical people there in the UK. I've found that here...they are very forgetful (or busy?). My cpap machine for my breathing, was not ordered when it was supposed to be...now it will be 6 weeks late, by the time I get it. Sleep is very difficult, since I wake up realizing that I am not breathing, and struggle to catch my breath. They have done nothing regarding my tremors or muscle spasms (now seem to be spreading all over). They don't want to tackle that until my breathing is under control. The medical folks seem to care, and listen really well, but the follow up is poor. I know I am just at the beginning of this weary journey,but I will pray for us all....that we start to find the answers we need....
hope today is a better day for you all.....off to check games....then do my errands....
Hi all,
been to the gp this morning and told her about my thoughts on what was happening but gp insist i drop selegiline for afew days so no meds at all before i see this nurologist and see what he thinks,but i have just got in from work and im almost unable to funtion properely and me right leg feels is dragging a big weight round and i think i am going to have to take some kind of action to be able to funtion right.pd specialist i might google and see what comes up but i think i may have to travel and gp private.
been to the gp this morning and told her about my thoughts on what was happening but gp insist i drop selegiline for afew days so no meds at all before i see this nurologist and see what he thinks,but i have just got in from work and im almost unable to funtion properely and me right leg feels is dragging a big weight round and i think i am going to have to take some kind of action to be able to funtion right.pd specialist i might google and see what comes up but i think i may have to travel and gp private.
I am sorry you did not have much joy today Janine. I may be wrong, but my understanding is that when an NHS consultant is involved in the treatment of a patient then the patient's NHS GP is more or less obliged to follow the consultant's instructions. Maybe "going private" could be the route for you, even if just for an initial consultation. Kathy C posted about this under Treatments - Is it worth going private? The only risk might be that you come face to face with the self same consultant! Best wishes
Thanks annebernadette for your reply and support.
when i read though the replies and comments for your advice and support ,i would like to thankyou all .im very grateful .
Hello again Janine
Yesterday I got a telephone apt with our GP's. They are happy to refer o/h to a p/s specialist despite the fact that he is obviously in the care of the local neuro team.
It's worth a try, but if I could afford to go private I wouldn't hesitate for a second.
Kind regards
JC
Yesterday I got a telephone apt with our GP's. They are happy to refer o/h to a p/s specialist despite the fact that he is obviously in the care of the local neuro team.
It's worth a try, but if I could afford to go private I wouldn't hesitate for a second.
Kind regards
JC