Friday, May 06, 2005


Basically the past year of transition has been followed by a year beginning with a sense of drifting. Home caregiving was an anchor in many ways.


Maybe for no reason except that I labeled it a “transitional year” the past 12 months had a focus. Yet home caregiving was intertwined with daily existence for so long its removal leaves behind a maze.


Now I find myself doing something and wondering why am I doing it that way? So many little and big details of daily living and planning evolved to accommodate home caregiving. Past the transition is uncharted water.


Recently three topics have kept my attention:



Over the last month or so I’ve raised this thought of the possibility of Patti returning to homecare with facility staff, and Patti’s doctors. They stare at me as if I might need admittance to a mental facility.


I’m always directed back to the universal medical opinions of Patti doctors, neurologists,and visiting homecare professionals that Patti should have been in a 24/7 care facility a couple years before I ever raised the white flag on homecare.


What I see that is positive in both Patti’s quality of life now and that I even have time in my life to think about it - is BECAUSE Patti is in 24/7 professional care.



Even the NMSS labels the success of such programs for MS as “mixed results”.  And ‘mixed results’ is not the kind of endorsement medical insurance invests thousands of dollars into for rehabilitation for a progressive problem. Optimally such rehabilitation is designed following a brain injury rather than a progressive disease. Patti’s neurologist and doctor were not optimistic.


So like many times before I create what I can. Learning whatever is available and customizing that for Patti. Bocce was a prime example of an experiment in home made cognitive rehab.  



Preliminary Results Are in for 16-Year Follow-Up of Betaseron Study

"To date, patients … in the pivotal trial are more likely to report continued ability to walk …”  “the mortality trend among patients in the placebo arm appearing to be threefold different than that of patients receiving Betaseron," The full report will include data on functions such as memory, attention, and reasoning, …"

This will always be a sore topic for me. Patti’s neurologist fought nobly and desperately to have her included in those original “pivotal” Betaseron trials. 


Berlex the drug manufacturer rejected her from the trials. They wanted people with the mildest and least noticeable MS symptoms in those original trials. They were stacking the deck for approval. Too much was at stake. Those original trials were as much about money as about MS. 


Once the drug was approved Patti got a letter from Berlex assigning her a lottery number and informing her how wonderfully Betaseron could help her slow progression. (Even though they had rejected her earlier when she was even less progressed.) The cruel twist of fate wasn’t done. Our medical insurance would not approve Betaseron because Patti had been rejected by Berlex for the Betaseron trials and that remained in her records.


Yes I know this is negative energy, I should instead be happy for those people Betaseron has helped.


  1. {{{{{{{{{{{{{Patrick}}}}}}}}}}}}}}}}

    What else could I say or do but offer a hug?


  2. .....what I hear is that Patti has adjusted but you haven't.  You don't feel as needed as before, although you are constantly involved in her medical, physical therapy, and emotional care.
    Letting go of her constant care is part of letting go of Patti and that is difficult.  You haven't lost focus you just need to re-adjust.
    I also hear anger because MAYBE Patti's progress could have been slowed.  You can't change that but  you can just see that Patti is comfortable and content where she is.
    This is a strengthening time for you and your daughter, time to grow together, bond for the future, and time just to relax and show Patti love and caring in an unstressful environment.  You know all of this--perhaps I just had to say it for my own situation, also.  Give her an extra big hug for Mother's Day!

  3. Oh Patrick, Analeighia says it perfectly so I can only offer you another big bear hug.



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