• Welcome! It’s great to see you. Our forum members are people, maybe like yourself, who experience mental health difficulties or who have had them at some point in their life.

    If you'd like to talk with people who know what it's like

Do I stay or do I go?

G

gnasher

New member
Founding Member
Joined
Apr 8, 2008
Messages
4
Hi

I've recently been offered more therapy after a break of six months and have to decide whether to accept and go back into hosp or go it alone and tell them to get stuffed.

In Aug 07 I was hospitalised after a stroke on my left side which caused left sided paralysis including reduced swallow reflex and speech. I have been told that I def have a right parietal infarct and have seen the MRI and other test results. While in hosp I then had a right sided weakness episode which I was also told was a stroke, and then DVT after a leg scan (routine), which left me completely helpless. Some months later and by a different Dr I am told this was not a stroke as tests proved otherwise. All together I was in hosp. then rehab, for a little over 3 months. Prior to this I was working part time, running a household, keeping fit (running), walking the dog and generally leading a busy life.

In March this year I was still having appointments with physio, OT, Neuro, psychologist, and haematology, as no cause for the original stroke has ever been found. At physio they let slip that a meeting had been held in my absence (WHAT?) and that a diagnosis of CD was being bandied about.

I never heard of it before. At the next psychology appt I asked about it and he said that, yes I probably had some psychological issues that were making the situation worse. First I heard of it because up to that point he was saying that my positive, upbeat outlook on life was helping me to improve all the time!

From then I have seen physio only once to tell me that no more appts would be offered. I have not seen psychologist, no appts offered, or OT, ditto, and neurologist has told me that too. That leaves me in a wheelchair, housebound (ramps not forth-coming), non-weight bearing, one handed, and with a catheter. I have some movement in my legs but not much flexibility and that will only get worse, without physio, over time. My symptoms do not fluctuate or change unless you count late nights and over pushing myself.

Now, six months later they want me to go into rehab once more for four weeks intensive therapy. I would appreciate your comments, good or bad. I don't know whether to accept this offer or not. On the one hand I want to continue to improve as much as I can, on the other hand I feel that accepting indicates that I accept their diagnosis and I'm not sure that I do. Also I really don't want to go back to hosp cos if this is CD then that's the only thing I can think of that may have caused this.

Add to that the four children I also need to consider who have already been considerably upset by the complete upheaval to their lives.

What do you think?

All comments are valid.

Sorry for the waffle.

Thanks x
 
T

Twylight

Guest
Yes, I would try the four week therapy, and then make a decision as to wether I accept the diagnosis ?
 
G

gnasher

New member
Founding Member
Joined
Apr 8, 2008
Messages
4
"Yes, I would try the four week therapy, and then make a decision as to wether I accept the diagnosis ? "

...I know this is the sensible thing to do but I'm scared. It's a risk. I could get worse. I've made a lot of progress in a year. I don't want to go back to where I was.

But I know I have to try it.

Just scared.
 
C

CSF

Member
Joined
Aug 6, 2008
Messages
6
Location
UK
go for it

Yes - much better to give the therapy a go at hospital - a specialist 4 week programme is much better than piecemeal community care where the resources and expertise is not in place for CD. It will be tough but go to be worth a try!

I think too much is made of accepting the diagnosis - forget its name your goal is to maximise your independence to walk, talk as best you can (this is just the same if you had any disease based condition, stroke, MS, or parkinsons - the name is irrelevant my CD and your CD is real and causes real physical symptoms you are not making it up (its only the less informed medical staff that take such a wrong view) - the only difference with CD is the tests and scans are not advanced enough yet to fully understand all the brain and especially the DISSASSOCIATION BETWEEN SUBCONSCIOUS MIND and BODY.

You cannot control your dreams when sleeping - just same with CD except if lucky you can work hard on trying to re train self to walk and talk consciously

I haven't got back what I lost with conversational speech and walking still slow, spasms in back and other symptoms - even after a hospital programme - but far better for it than before

good luck :unsure::p:grouphug:
 
M

mcintyre

Active member
Founding Member
Joined
Mar 31, 2008
Messages
32
I fully agree with what the others have said - go for it!! I would dearly love to be given such an opportunity as so far I have been offered no treatment whatsoever other than anti depressants.
 
Top