ONE STEP FORWARD & ONE STEP BACK

THE APO & ME

I never thought that this day would ever come.

Where my Shuffling, Shaking and Stiffness would almost be gone.

I really can’t believe it, it’s as though someone has blessed me, for sure.

I know it’s only masking my symptoms and that it’s not a cure.

But I’ll take it for now and make the most of my life, the very best that I can.

It’s made me feel brighter, and I’m so happy, I really, really am.

My body & limbs can now breathe and rest, Which they haven’t done for 8 years now.

I’m so thankful to have this Apomorphine Infusion pump & injections, My thoughts are Holy Cow!

Ok, I maybe sore from having the injections & infusion needles every day.

I’ve still got my pain, but I can’t complain, And I wouldn’t, anyway.

My husband has been giving me injections & the infusion, every day.

He’s been my rock, I’m so lucky to have him. I know he’ll be with me, all the way.

It’s as though my body and soul has been given a light so bright.

My little grandsons smile, when he saw me still, Absolutely filled me with delight.

I can’t express, what it means to me, to just be able to drink a cup of tea.

Without shaking and spilling it, on the floor or all over me.

To be able to eat a meal, for it to, not end up on the floor.

Now I can finish my meal and enjoy eating it all the more.

To be able to clean my teeth, and put my makeup on, before I go out.

It’s Amazing, It’s Wonderful, It’s A Miracle, I just want to Shout Out.

Thank you, all my family & friends who have been there, for me.

I love you all, from the bottom of my heart, Thank you all so much, for caring about me.

Written By Shelley Edwards (C)

LIGHT AT THE END OF THE TUNNEL

LIGHT AT THE END OF THE TUNNEL 
Just a few days ago, I was in a hospital bed having an Apomorphine Test. 

If I may , I’d like to take you back, just over a year, when I was put on the gold standard drug for Parkinson’s, Sinemet, I was told by my neurologist at the time that I may get relief from my tremors, which were in both sides. I was given anti sickness medication to help with the nausea. 

At first, I’d been increased gradually to 5x 125mg and 1x CR 125mg. I was finally getting some relief from my tremors, shuffling & stiffness. I suppose I was getting about an hour between meds. To me, it was a blessing. It was heaven just to have that time for my body to breathe. 

Then six to eight months down the road, I started to lose my time. It was getting shorter & shorter. I started getting about 20 minutes between medications. Sometimes I didn’t get anytime at all. I was feeling awful. My muscles in my arms and legs were stiff and painful. My off times were much much longer than my on times. 

My sleep was virtually nonexistent, I’ve not slept at all well , for many years. But it was getting much worse. The pain I was getting with muscle spasms in my legs and the fact that I couldn’t stay in bed. Because I was so uncomfortable. If I did go back to bed and have an hours sleep, I would wake up and not be able to move. It was though my body had gone into Riga-mortis. 

I’ve always been quite strong and tough. I have always been able to cope somehow. But I guess even I have to say it really got hard for me. 

I was having trouble coping daily. I started to get angry, moody, then followed sadness. I would cry at the most stupid times. I would also break down in front of my family. Which was something I never did. I would always keep my crying times private, away from the world. 

I hope you are still with me. As I’d like to tell you all about my Apomorphine Test. 

It was last Thursday, I was told to stop taking my medication in the morning, so I was off , during the test. 

I’m now on 9 Sinemet, one of which is a CR. 

So Thursday morning I took a Sinemet at 5am then one at 7 and one at nine. 

I needed those to get ready for my appointment. 

My husband helped me into the car at noon as my appointment was at 1pm. I’m so glad he was there, my legs were hardly moving, I was having trouble walking. My tremors were really bad and my muscles in my arms & legs were so painful. I realised on Thursday morning how bad my Parkinson’s is. Also how much the Sinemet, actually was helping me with. This was frightening. As you can probably imagine. 

When we arrived at the hospital, my husband had to literally, pick me up and transfer me to my wheelchair. My legs had totally gone. They were useless. 

We arrived at the day unit and I was transferred to the bed. 

My Apo Nurse and Neurology nurse, arrived. 

We discussed what would be happening. The nurse would have liked me to walk & do a few things to see what I was like before and after. But that was something that had to be forgone. As I couldn’t walk. And with my tremors, she couldn’t even take my blood pressure. 

She gave me just 2mg of the Apomorphine in an injection, and we waited. It must have been 20 minutes. She added another 1mg. All of a sudden my tremors were gone. But I started to feel as though I was going to pass out. So they laid me down. I started to feel better. So I sat up and managed to walk a few steps. My legs were still not right. I couldn’t lift my feet. But I was ok. 

I sat back in my wheelchair, I couldn’t believe what had just happened. It was a success. Ok this injection only lasted for about 40 minutes. But it worked. 

It couldn’t have come at a better time for me. 

I’ve been home now since Thursday late afternoon. 

My husband and daughter have been giving me injections, when I go off.

I’m having about 8 injections a day. It’s not been easy, as we have been trying to find some fat to put the injections in. I’ve lost quite a bit of weight lately. Due to the tremors being so fierce and having so many off times. 

I would have to have more but I have been going without after 6.30pm. As I feel I really need a rest from the injections.

I have the Apo Nurse coming in Thursday morning, to check up on me. 

I’m not sure if she will do the infusion pump on Thursday or whether she will wait till the end of the month. 

I’m hoping she will do the infusion, as I’m feeling rather sore. 

I will keep you updated. 

Thank you for reading my experience with the Apomorphine Test. 

I am here if you want to ask any questions. 

Me and my husband on leaving the hospital, were so happy, as we can both now see a light at the end of the tunnel. 

I hope this helps spread awareness that there may not be a cure for Parkinson’s, but there is something out there to help. It might not be for everyone. Anything is worth a try. 
Shelley Edwards (c)

IT WORKED!!!

PARKINSONS YOU STINK !!!