Dear listener/reader,
I doubt if my absense caused much of a stir on the range but there are a
handfull of gentle people I would like to thank publically..dave and
naomi...joanne and don,.....anne o's,margaret t., naomi and ted n.,and last
but certainly not least,camilla f.I suspect that I have left some one off
this list but I hope that they are of a forgiving mood.
And now down to less serious business.As of this hour,some 79 hours 11 min
and 37 seconds [but who is counting?],the operation appears to have been a
success. I'm no longer trying to unlock my dystonic right foot, no longer
driven to ground by my wild dyskinesias, no longer forced to walk on
clenched toes, or forced to not go for a walk because my feet disagreed on
which way to go,nor miss another meal because of my tremors THERE ARE
BETTER TIMES AHEAD!I was out of the hospital 24 hours after the auger
reached the gray matter.
The video project went well as well[ah well] I had 4 people involved in
the "shoot". In the operating room itself we had two manned cameras, one
unmanned and a still photographer.The hospital staff was wonderful. Only
one staffer refused us permission to shoot her time with me.The surgeon was
most gracious.The nurses were a riot....often "complaining" about not
knowing they were going to be "stars"
or else they would have worn makeup!..... Also I was better able to adjust
some of my goals for this program. For example it can be a real advocacy
for future in-patients. I brought my own medications and took them on my
own schedule,............. my own shower cap...........Strange that they
wouldn't have shower caps on a ward where a half of the patient population
have their stiches showing..... I also made the rounds of the "sights";
"The nutrition center" the "lounge" area and of course the Nurses station
where I made my needs known to not only my key nurse but to others; helping
them to know what I expected from them and what I would be giving in
return. This is said without any arrogrance; just a statement of fact.This
advocacy can be done on an outpatient basis as well. . We have about
8-10 hours in the "can" and I will be viewing some of the film on
Monday.Hopefully we will have something together within a few day and then
we can begin filling in.We will have film on the before and after,the
surgery,the MRI, the CAT scan,blood taking,the skilled nursing care,
conversations about how a chronic illness influences relationships between
"The Patient" and his family,friends, coworkers etc and how my primary care
folks [my neurologist,primary care physician, insurance company case
manager] view this as well as the P,R people at MGH etc. I WOULD LOVE TO
HEAR FROM YOU TO KNOW WHAT YOU MIGHT CONSIDER HELPFUL AS WE PULL THIS
PROJECT TOGETHER.MORE TO FOLLOW........and again,thanks for your support.
My very best
George [log in to unmask]
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