A Glitch in my Program

So, the side effect was a BIG problem. It just kept getting worse instead of fading and I had to ring Dr Krause and make an appointment to see him. I went last Tuesday but the programmer he had was old and incompatible with my device. He could only turn down the setting with my programmer which was a relief. I felt a bit dumb as I hadn’t thought of doing that myself. Anyway, I also met the physio and I have been put on the waiting list for some rehab.

I went back again on Friday and Dr Krause had a new programmer that worked. The setting he had hoped to use was a no go as my face twitched up on the left side. The setting we settled on is okay but I am still not 100% comfortable. I think I’ll ask him for a new setting next year if things don’t feel better by then.

This device is hard work as it is frustrating to want better but have to settle for mediocre.

- Martha

On Again

I went and had my device switched on(?) again on Thursday. I have a slight side effect on my left side that will slowly fade away. It is not as bad as last time but it is still a pain. They could not tell me if I was on or off in the past 6 months.

They have discovered that people with Cerebral Palsy cannot tolerate vast changes in their device as their GPI goes into shock. So now I have to incrementally put up the setting slowly by 0.1 or 0.2 every week or fortnight. I don’t think I am going to like that very much if I get side effects from it and feel as tired as I do.

Yesterday I tried standing up behind the lounge. It was really hard to do as my body would not respond – I couldn’t get my right (good) leg to move even. It was really scary and frustrating. I was doing better before DBS. I think it has to do with the brain repairing itself after having the device turned on or incremented. In the long run it will be better. I did notice a reduction in twitching though so I guess that’s good.

Anyway, I’ll just have to be patient I think and see what happens next.

- Martha

Another 3 months are over

I have finished another 3 months of my trial. This three months went very quickly as I had a few other things that kept me busy and that I looked forward to. I was also free of pain and so I wasn’t restricted by it.

Last week I noticed that the place where my device has been implanted doesn’t hurt anymore. It has obviously healed on the inside as well as the outside.

Last Thursday I went and did the 2 ½ hour psychology test which leaves you feeling quite spent in the head. I also said bye to Wanping who I will probably not see again as I don’t think I have anymore psychology tests to do. The following day I backed it up with the video taping and OT & PT consult. I felt very worn out and sore on Friday afternoon.

This Thursday I am seeing Dr Mahant who will turn my device ‘on?’ again I think. I am rather nervous because of the side effect it caused last time but I am hopeful it will be okay.

Then I hope to start rehab soon and see some progress.

- Martha

Cleaning out the Cupboards

Yesterday I cleaned out my part in the wardrobe which led to cleaning out the kitchen cupboard because I needed a plastic bag from there and it was untidy. Then I had to tidy up the bathroom cupboard because I wanted to put things away in there and when I opened the door I saw it was a bit messy.

Now I know why people don’t tidy up because of the chain reaction cleaning takes on. But I feel less chaotic and at peace because of it.

I am glad I did the cleaning as I have 4 bags of clothes to give away and more room to buy new items.

I love shopping!!

- Martha

Run4Fun

Today I went on a 10km fun run with Peter Slade. Peter pushed all the way, most of the way on the 2 back wheels. We finished it in 1 hour and 5 minutes. Peter was very fast and was pretty buggered at the end I think.

I plan to run it on my feet some day – if not next year, then the year after.

I just finished reading “The Brain that Changes Itself” by Norman Doige. There are a few rehab programs that can teach your brain to work your affected side to behaved better and even teach you to walk. I think that once I have my device set properly rehab will be easier and I think anything is possible!

Tonight on Sunday Night there was a little boy with CP who was running a 4km Run – is that al coincidence or what?

I just need to be patient and take up opportunities.

- Martha

Anger

I have had a problem with feeling really angry lately and I can’t say it’s a nice feeling. It makes me feel very tired and sad. It infiltrates into all my relationships and clouds my day. Anger is a secondary emotion brought about by other emotions such as fear and helplessness.

I have felt helpless about things happening in my life around me especially when I can see that things are not being done properly and that this could lead to more trouble or pain, which then sets the ‘fear’ emotion off.

I keep telling myself that these are other peoples decisions that they will have to live with in the end. They are decisions I cannot persuade. Ultimately God is in control!

- Martha

High Tea

Andrew had his 40th birthday party on Saturday and it was awesome.
We decorated the back veranda with curtains and matching tables and chairs. Kathryn from Tealightful Tea Parties did the rest. She brought the silverware and crockery and also the food and the serving stands. I only had to supply the Champaign and the cake. Everyone had a magical time. Towards the end of the day it rained and we had to pack up in record time as the rain blew in. People still hung around and we cut the cake.

The set up was everything I wanted and I’m glad it was nice for Andrew. I wanted to make it special for him as he is always soo good to me..

I would highly recommend a High Tea Party!

- Martha