First I have to say it has been a while since I posted very much. It was not till a lady emailed me to check that I was ok that I realised i had been quite quiet. This wheelchair life is a bit of a roller coaster and although I set off at the beginning of 2016 with all these goals I wanted to achieve it has not been so easy.
Firstly I got the scripts and started the protocol from Dr Delanium in Paris. I started off with just the Vitamin E and Pentoxifyline but felt very sick while taking them and tired. I stopped and had a break for a while and then introduced them one at a time. Sadly the Pentoxifyline made me feel very nauseous and I vomited later in the day. I had a chat with my Radiation oncologist as to what I should do as the Pentoxifyline is really the main medication in the mix in that it thins the blood and maybe allows more blood to get to the damaged nerves. Some people only use these two medications. My RO felt as I did that without the Pentoxifyline the protocol would be incomplete. There was no guarantee that it would help me and it will be a while for trial results to be available. I made the decision to discontinue the protocol, which was disappointing as it had felt good to have some hope that things could improve if only a little.
Next was my new wheelchair and working toward independence. The new chair is great, as I wrote in “Welcome the Joker,” but it is so light and so different to my old chair that I have had to learn to redo everything ie my transfers. These are now all going ok having got used to the permanent foot plate and lighter chair. However my kerbs and gutters are still a challenge and I have managed to tip out of the chair twice. Fortunately my husband was with me to help me back into chair. I seem to not have the right technique and now feel quite anxious when out and about. This chair is very sensitive to any lumps or bumps in its path and I need to perfect balancing on the back wheels to get over these. I have decided to return to rehab for an intensive “how to use the wheelchair course!” My old chair did not allow for a lot of the tricks my new chair will do so I did not learn these skills. The only problem is there is a long wait to be able to do this so once again patience is needed. Patience is something I should have perfected by now but I just find all this waiting very frustrating. Once I am able to return to rehab I want to work more on my upper body strength too as this will make life easier. Getting from the floor into my chair would be great but maybe I am just to old to have the strength to do this!!!
My other goal was starting the Facebook page. This is going very well and I have been amazed at the response. We are still a very small group but that is nice as it feels more intimate and we can get to know each other. It is amazing as people join from across the world how our stories are all so similar, plus the relief at finding others who understand is a great. We are trying as a group to build some awareness of RILP by putting feelers out on social media, to journalists and a radio show. Will keep you updated as to how that goes. https://www.facebook.com/groups/RadiationInducedLumbarPlexopathy/
I think that is all for now. I will try to post a little more often but time seems to fly bye… I can’t believe it is April already!!
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