WAKING UP, WITH A FRIGHT !

HERE WE GO AGAIN

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)

NO ESCAPEES

NOT A GOOD WAY TO SPEND A SUNDAY MORNING

Gastroscopy Appointment 
Today I went to the hospital to have a procedure, that I haven’t experienced before. I’ve had quite a few procedures in the past but never a gastroscopy. I had an early appointment, which was good, it allowed me to take my first medication of the day. I’d also had nothing to eat for 6 hours & after taking my medication, I wasn’t allowed any water. Which concerned me, as I suffer with a dry mouth. 
When we arrived at the gastroenterology unit. I’m so glad my husband was with me, as there was a consent form to fill in. I couldn’t possibly have filled it in , my tremors were really bad and I also had dyskinesia. 
We were then taken through by a nurse, who completed the form. The nurse then attempted to take my blood pressure & oxygen levels. After a couple of attempts he recorded my blood pressure but my oxygen level was causing a bit of concern, it wouldn’t register. He put it on both hands, different fingers but still no level to record. So he then proceeded to place it on both ears . That didn’t work either. My husband put it on his finger and it recorded his level straight away. I was beginning to think I had died! He went and got another machine to see if that would work, and hey presto, my oxygen level was recorded. 
We then had to wait to be taken through to the room where the procedure would happen. The consultant came through and talked me through what it entailed and what could go wrong. I must say if I could have run, I would have! But as I was sitting there in a wheelchair and knowing that I couldn’t walk, let alone run. I agreed to have the anaesthetic spray on my throat, so that I could leave after the procedure. 
I was taken through and helped on the bed by a lovely nurse , who was there to hold my hand. And guide me through what I had to do.
I was laying on my left side, my tremors were really bad. The nurse put the blood pressure monitor on my right arm and the oxygen thing on my finger. I did try to mention that it wasn’t a good idea to put it on that arm as it doesn’t work and it just squeezes until it cuts off my blood supply. But that fell on deaf ears. Oh I also forgot to say I had to take my dentures out before all this. So maybe she didn’t understand what I was saying. 
She sprayed the anaesthetic into my throat, she said it would taste awful, but I didn’t think so. I guess my taste is not that good. Then I had a mouthpiece that I had to bite onto, the consultant then started feeding the camera down my throat, he said it would make me cough and gag as it passed down my throat.. I did cough a bit but it was ok. I was trying hard to breathe through my nose and do what the nurse was telling me to do. I was still having extreme tremors, My whole body was shaking as well as my arms and legs. As the scope was being fed through my stomach, he then said he was going to inflate my stomach with air which was uncomfortable, but as this was happening my blood supply was being cut off on my arm, I couldn’t speak so I started tapping the nurses hand and my arm, thank goodness she turned it off!!
After taking numerous biopsies, he took the camera out. I can honestly say, I was so glad it was over. They then tried to take my blood pressure, it recorded 258/ , they said it was really high. I tried to say again that it’s probably because of my tremors and that I actually have a low blood pressure. But it fell on deaf ears again. Maybe they couldn’t understand me, as I didn’t have my teeth in. Lol.
They then took me to a recovery area. I had quite a bad pain down my chest, and this time when they checked my blood pressure. They put it on my left arm and lo and behold, my blood pressure was low. I guess they did listen, in the end. 
The consultant then came over and explained what had been done. They had found a nodule in my stomach. So he said I would have to have this procedure done again but with an ultrasound. EUS. I can honestly say I really don’t want to have to go through this all again. But I guess, as my husband says, it’s got to be done. So I’m just going to have to get on with it…….

Written by Shelley Edwards (c)

HOPING AND PRAYING 🙏🙏🙏

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)

THE SECRETS IN THE SKY

THE STIFFNESS I DREAD !!!

In the morning, when I’m laying in my bed

If I wasn’t breathing, you might think I was dead

I’m not joking, believe me, what I say is true

My limbs and body are so stiff, I really can’t move

It’s like Riga mortis has set in, and it’s here to stay

It’s only the pain that lets me know that I’m still alive today

I try for an hour to get up and out of my bed

Sometimes it’s longer. It’s beginning to fill me with dread

Finally I manage to get up, I’m very slow when I walk

I hate being so slow, so I guess it’s good that I can still talk

It’s even hard picking a cup up & holding a drink in my hand

It really hurts, I’m really not sure, people would understand

Then I take six pills and I have to wait a while

Then gradually as they kick in. I can begin to smile

Ok , I still have pain, and I’m still not feeling that well

But I’m grateful to be up, fighting, staying strong, even though it’s hell!

Written by Shelley Edwards (c)

WHEN LIFE KICKS ME IN THE BUTT !!!