David Burge Updates

David Burge updates his journey with leukemia

Posts Tagged ‘pain

First week of school for Rachel. Hand Troubles for Dave.

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Rachel

Rachel finished her first week of school.

It has been a learning curve for all of us. She can see advantages to home education that she didn’t before. We can also see the advantages to “school”. She is happy with her decision and so are we.

Dave had  another interesting time at the Day Stay today. Basically his treatment was canceled today because of the 14 day series of injections he is on for the prevention of the clot in his leg. Fortunately the topic of the injections came up in conversation when it was mentioned by the nurse that one of the levels in his blood was high. Dave pointed that it might be due to the injections. The doctor then said he cannot have a lumbar puncture when on these injections (somehow the connection was not made earlier in the week when the treatment plan was made). We understand that doctors are human: we blame the system because seeing different doctors all the time does not help them or us. The doctor suggested that perhaps they could admit Dave to the hospital over the weekend, an idea that did not appeal at all. So he went home with the possibility that he could have the treatment over the weekend. Later we had a ring from the nurse to say that hospital protocol did not allow this for safety reasons. So he will just have the scheduled treatment on Tuesday and carry on from there.

Dave was very discouraged with his hands today (the wasted trip to Auckland not really helping). His energy levels are better so he tried to type. Basically he can’t. The pain levels after only a few words are high, his fingers have no strength and they will not do as they are told. His arms/hands ache all the time. He has tingling/numbness in his fingers. He can barely sign his name, never mind writing an article. This is a major discouragement. He can no longer drive and now he can’t write. He wonders what he will do even if he survives the BMT. Perhaps having physiotherapy would help: one article on demyelination said  “physiotherapy may improve muscle strength, function and mobility, and minimize the shrinkage of muscles and tendons and distortions of the joints.” Next week I will ask if this is an option. Perhaps even a consultation with a physio would help. She could guide us regarding what exercises could be done at home to prevent further loss of muscle strength.

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