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