struggling to cope
struggling to cope
Janine, forgive me but I can't remember when your apt with your consultant is due to stresses of my own. Have you seen him?
Hi jenni,
no heard nothing,only about the scan,i am struggling with the parkinson symtoms and discomort just dont know how much longer i can carry on with this,sorry to moan but its how i feel but i dont feel depressed which is strange.
just angry i have been left like this.
no heard nothing,only about the scan,i am struggling with the parkinson symtoms and discomort just dont know how much longer i can carry on with this,sorry to moan but its how i feel but i dont feel depressed which is strange.
just angry i have been left like this.
I do empathise with your plight and wish there was something I could physically do to help you.
O/h is in a similar position. We have secured a second opinion referral to a private P/d specialist. Now waiting for apt to come to dispute prior dx by non P/d specialist and get the Lewy Body dx thrown out.
There is a big problem with this. Didn't know there was a P/d spec on doorstep but is part of the same dept as one who gave incorrect dx.
Why in gods name were we not referred to this man in the first place?
Anyway Janine, I mentioned that because I know it's similar to your situation and I have to be very strong in this instance, difficult because like you I'm feeling wobbly at the moment and not quite myself. Something like you are going to face when you see the consultant.
We have to be strong at the time and fight our corners. I know you can do it Janine!
O/h is in a similar position. We have secured a second opinion referral to a private P/d specialist. Now waiting for apt to come to dispute prior dx by non P/d specialist and get the Lewy Body dx thrown out.
There is a big problem with this. Didn't know there was a P/d spec on doorstep but is part of the same dept as one who gave incorrect dx.
Why in gods name were we not referred to this man in the first place?
Anyway Janine, I mentioned that because I know it's similar to your situation and I have to be very strong in this instance, difficult because like you I'm feeling wobbly at the moment and not quite myself. Something like you are going to face when you see the consultant.
We have to be strong at the time and fight our corners. I know you can do it Janine!
Hello Janine and everyone.I used to feel like I was in a tunnel and i could not see the end. My feelings all over the place. 5yrs of wrong Dx and of being Dx 5yrs
I feel im 3/4 through that tunnel now but its been a long journey.There isn't enough emotional support out there for cares and sufferers I'm just at the minute attending the rehab unit for my mobility and for the first time in the 10 yrs i feel that someone is listening to me.The staff are fantastic and any problems are sorted straight away.Because I'm happier my ohs happier.So don't give up,don't walk on egg shells you can get through that tunnel. ANGEL4UX
I feel im 3/4 through that tunnel now but its been a long journey.There isn't enough emotional support out there for cares and sufferers I'm just at the minute attending the rehab unit for my mobility and for the first time in the 10 yrs i feel that someone is listening to me.The staff are fantastic and any problems are sorted straight away.Because I'm happier my ohs happier.So don't give up,don't walk on egg shells you can get through that tunnel. ANGEL4UX
Hi Angel
That was a kind and encouraging post. I'm glad that you have come through that tunnel, it's lovely to hear a happier tale.
You are right, there isn't enough support out there for sufferers or carers. At the moment I'm feeling wobbly because of outside pressures and really worrying for my o/h.
I'm meant to be the strong one and I usually am. He is not good at the moment I think because we have a virus and the p/d pills aren't working as well as they might. At least I really hope that's the reason and not that the pills don't help him at all any more. I can't shield him from the pressures either. Out of my control which can't be helping him one bit.
That was a kind and encouraging post. I'm glad that you have come through that tunnel, it's lovely to hear a happier tale.
You are right, there isn't enough support out there for sufferers or carers. At the moment I'm feeling wobbly because of outside pressures and really worrying for my o/h.
I'm meant to be the strong one and I usually am. He is not good at the moment I think because we have a virus and the p/d pills aren't working as well as they might. At least I really hope that's the reason and not that the pills don't help him at all any more. I can't shield him from the pressures either. Out of my control which can't be helping him one bit.
Thankyou angel and jenni for your kind and wonderful support,means alot .
Hi
i did,nt want to start a new topic so i thought this was still appropiate on what im saying.
tomorrow is a big day for me and o.h it seems what we both were fighting for what never coming round,seeing the right consultant and get right treatment etc was far off,beyond our reach almost,but now almoshere im afraid and nervous of what the future holds and the beginning of enough fight.nervous,anxious yes but also knowing that im going to be as a person and listened to by the right person is part of all this wait.
i have quite afew things going around in my head and one major one that im a fraid to think of.its so hard to grin and bear at times even the pain but im so dont feel calm at the moment.
i did,nt want to start a new topic so i thought this was still appropiate on what im saying.
tomorrow is a big day for me and o.h it seems what we both were fighting for what never coming round,seeing the right consultant and get right treatment etc was far off,beyond our reach almost,but now almoshere im afraid and nervous of what the future holds and the beginning of enough fight.nervous,anxious yes but also knowing that im going to be as a person and listened to by the right person is part of all this wait.
i have quite afew things going around in my head and one major one that im a fraid to think of.its so hard to grin and bear at times even the pain but im so dont feel calm at the moment.
Janine my heart goes out to you and our thoughts will be with you all day. Please let us know how it goes. I hope you can sleep tonight.
xx
xx
Same good wishes from me too.
thankyou so much,i just had to express my feelings and having someone to listen means alot.
thinkin of u jennie today ,good luck we all behind u x
Hope everything goes well Janine. Sometimes the smallest thing can make a difference. We see the PD nurse on Wednesday (at last) and hope for big changes!
thank-you pansy potter,hope everything goes well when you see the pd nurse
take care
take care
my feelings are all mixed up at the moment and my heart aches with some much pain.im the sort of person that would do anything for anyone even when my own troubles are constantly with me.
this is just a moment when i needed to say that.
this is just a moment when i needed to say that.
Hi Janine. Say what you want, you know we are all here for you and each other. The feelings we have do well up inside and need to overflow sometimes. Post, rant, scream at the moon (I do) but sometimes it does help.
Be here for a while. Take care xx
Be here for a while. Take care xx
Hello Janine. Only just caught this post. Pebble is right. Say what you want and we'll certainly be here for you xx
Sorry that you feel so c..p Janine, hope you start to feel better soon. We are here if you wanna chat. Take care
Glenchass
Glenchass
thankyou pebble,jenni and glenchass,
i did feel low last night after reading some distressing news and i just wanted to put down what i was feeling at the time.
i did feel low last night after reading some distressing news and i just wanted to put down what i was feeling at the time.