NEED PADDING

LOSING WEIGHT, NOT FEELING GREAT!

UPDATE 

Hi there, just thought I’d share what’s been going on with me. Maybe someone has had similar, 

I had an appointment with my doctor yesterday morning, she has been keeping an eye on me as she and my family are quite concerned about my weight loss . I weigh 48 kilos(7st 8) now. In December I was 55.4 kilos . So I’ve lost just over 7kilos (1st 1) in a couple of months. I seemed to have lost my appetite & every time I was eating I was experiencing a lot of pain in my stomach,and a lot of wind. She prescribed me some Complan, all different flavours. But even they make me feel sick. So I’ve had all the blood tests possible,and they came back ok. Apart from my white cells, which were a bit elevated.  

I’m now waiting for a gastroscopy and a CT scan on my lower half (bowels etc) . Oh joy! Certainly not something I’m looking forward to……

Also while this is all going on, I’m changing my sinemet for Stanek/stalivo to help lengthen my on times as I have a very erratic tremor on both sides. I’m now up to my third week, I’ve replaced 3 of my sinemet, with the Stanek, & still taking 2 sinemet & my CR sinemet and I’ve felt nauseous,dizzy. etc., It has taken my tremors away for a bit longer, but unfortunately since I started taking it I have been experiencing dyskinesia in its place. My arms and leg are writhing, and moving uncontrollably. It’s even affecting my face and my mouth. 

On seeing me this morning, My doctor told me to contact my PD nurse straight away to tell her what is going on. I did this, she got back to me really quickly and is going to talk to my neurologist tomorrow about it. She seems to think I might have to stop taking them and try something else. But she would have to find out and will get back to me asap. 

I know its worrying my husband and my family, They are trying so hard to help me through this. But honestly, just them being there for me is all they can do……..

Shelley Edwards (c)

HOW I DO, WHAT I DO !!

WHAT DO I DO !!

What do I do when my body every day, is in so much pain?

What can I do? But cope, as I have done, over and over again 

When the tablets I take, aren’t taking my pain away

What do I do,? I just smile and say

‘Maybe they will find something to help me , One day’

What should I do?When my legs give way

Sit down!! I can hear you say

But when I sit down , I then can’t get up!!

What to do ? should I stay in bed

Then that’s it! I might as well be dead!!

What should I do?, When I start to trip or fall

Should I pray that something, Will break my fall

Or just close my eyes , and say ‘what the heck’

And Just hope & pray , I don’t break my neck !!!

What should I do when somebody knocks!!

Run to the Door , Now that would be a shock!!!

I wish I could run, But I can hardly walk

I get to the door Is somebody there!?

No .I took too long !!They’ve disappeared, into thin air!!

What should I do when I can’t sleep

I know what people say ! That I should count sheep

Why sheep? why not pigs,cows, or ducks, it’s only fair

I wonder who made that rule , do I really care ? 

What do I do , when I need to go out anywhere 

I take hours to get ready, to dress, make up, do my hair

Then just as I am about to go!!

I’m tired & in so much pain , who cares if I don’t show!!

No-one will miss me if I’m not there, 

Anyway, I’d rather be at home, sitting in my chair….

I’m sorry if this poem seems rather bleak!!

I’m not always like this , feeling so weak

This is just a part of me , that I needed to share

To anyone who’d listen , and anyone who would care 

I care , I always will…I love it when I can make someone smile .

Because It’s good for me to stop and chat , just for a while…..

Written by Shelley Edwards (c)