Monday, January 17, 2005

get involved early

Neurologist appointments are always somewhat of a mixed bag from a caregiver’s perspective. Half of the time I think of them as next to useless the other half accepts that a neurologist is the key to other medical help. Physicians, nurses, etc. too often defer to “Patti’s Neurologist” before trying a new idea or treatment.


You can bang heads with the neurologist or you can work together. You CANNOT win banging heads. You have to find a way to work with the neurologist on their terms.


Neurology is too abstract and MS is too unique. The caregiver MUST become the bridge.


In retrospect it is NEVER too early to test that role. I admit I waited too long before I became involved in Patti's appointments.. 'Necessity' is too late. Currently progression of MS impairing Patti's cognitive and memory abilities prevent her from directing her own care. My role at appointments shifts more to Patti's advocate.


As you may have guessed Patti has a neurologist appointment this week. I prepare by spending several hours (maybe a day all total) in the immediate weeks before compiling notes, reviewing research, clinical trials, new meds, etc. Mainly now days working through websites for NMSS and MSSA. Then reduce it all into a half page summary of an agenda we want, with attached supporting documents. A neurologist may or may not agree. What is important is to go prepared and with a plan.


Learn from our mistakes. FIND a way to talk about it and get involved early.


  1. All I can say is "How do you do it?"

  2. Charley goes to every doctor appointment I have....and I mean every one even if it is not for MS.  He just wants to understand all this for himself and I feel blessed.


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