ANOTHER ONE BITES THE DUST

Hello, most of you who know me, know I’ve been on the Apomorphine infusion pump and Apomorphine injections for the last three months.

If I may I’d like to take you back to the feeling I had when I had my Apo response test.

When it worked. I couldn’t believe my luck. It was like a miracle. It was my light at the end of my tunnel.

My body and limbs were finally getting a well deserved rest, what more could I ask. I understood it wouldn’t be easy, but I was prepared and willing to have the treatment.

My husband was on this journey with me, it couldn’t have been easy for him as he had to inject me, learn how to set up the pump, make sure it was put in correctly every day. Finding places to put it was a problem, as my fat store is low.

When I say it hasn’t been easy, it really hasn’t.

It has been three months of needles, infusion pumps, injections, sickness, nodules, soreness, tears, bruises , not being able to go out , feeling poorly, unwell.

You have probably guessed by now I’ve had to stop the Apomorphine infusion pump treatment, I’m devastated as you can imagine, but after talking it over with the Apomorphine nurse yesterday, it was really the only option.

I would like to say, because I have had to stop, it doesn’t mean that it wouldn’t work for you. We are all different.

This is the first day without it. We have spoken in length about where I go from here and I have now got to increase my medication accordingly and have been given the option to have injections for the really bad times.

Thank you all so very much for your support and kindness. I truly appreciate it ❤️

WHEN I FELT I WAS DROWNING IN A REALLY BIG SEA, APO CAME ALONG AND RESCUED ME……

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)