News from the doctors Feb 18, 2011

We’ve been asking questions, seeing Doctors over the years and wondering how to understand why my balance and other physical disabilities are progressively going downhill at the same time that the MRI images of the tumor continue to show no significant changes. We go the answer in the form of choices: take some drugs for side effects for the rest of your life, radiation of the tumor (with risks of making some physical symptoms worse, but possibly stabilizing symptoms and killing some of the tumor ), or do nothing and there will be the continued gradual decline in performance.

Also put into the mix that Melinda and I have been talking about being proactive on the home front. There is going to be a likely need (plan for a year my physical therapist says. I take the time line with a grain of salt), regardless of time line, best to be ready and then a transition to wheel chair if needed, is not such a crisis. It has major implications that have large price tags. Finances are probably going to be an issue and tension.

Some things to think about:

• Home- Need to be in an ADA wheelchair accessible home.
  • Bathroom that is accessible
  • Entrance and doors that are wheelchair accessible
  • Room for small office and one for foster care as well as one on main level for us
• Transportation- Move from scooter to power wheel chair and eventually have a vehicle with a ramp or hitch on back.

   

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