Each year
brings its own adventure, challenges and ambiance so looking at this year so
far it is the recent loss of my valued father-in-law Joe, an equally recent mis-adventure with my knee and the interesting weather forecast for this Saturday, day of the ride.
Joe Turner's death at 95 will not affect my ride Saturday except perhaps during a few of those mind emptying times grunting with effort into the wind I might reflect on some of the laid-back quality times I had with him. Genial and friendly but with the ability to rise with some passion on a topic or two Joe and I enjoyed sharing humor and friendship. While it is OK he's gone to be with his childhood and lifelong sweetheart Margaret I'll still not like the void he's left in Susan's and my life. But then such is life.
About the same time of Joe's death I was out fooling with our somewhat derelict 34' motor home in preparation of selling it as a fixer-upper (as a vacation cabin or limited local RV it still has some potential, or so I suggest to potential buyers. ;-) ). Perched up on the edge of the driver's seat I was attempting a dismount when my left foot slipped off the saddle-sized metal stirrup foot step and my body plunged down to the arms-length of my grip on steering wheel and door strap, leaving my right leg in a 180 degree bend at the knee supporting way too much of my body weight. Good news was I didn't free fall 6' onto a disordered pile of wood but bad news was my knee did not enjoy the quick-force burden of my body on it. I did disengage myself only feeling the average amount of foolish and to my surprise aside from a little twingyness in the joint I thought I had once again, skated. But of course later as I levered myself up from the couch, surprise, a really sharp pain across the top edge of the patella suggested the connection tissue between patella and thigh muscle might have been just a tad overextended with my less than agile gymnastics move. Mmm. In the days since my knee has reminded me all is not forgiven yet. We'll see what 23 miles has to "say".
The weather forecast this morning for Saturday suggests if I am wise and hurry I can beat not only the 91 degrees high for the day but also the 30% chance of rain, both occurring around Noon. The forecasted wind of 10mph should be my friend as through the hours of my rectangular routed map is seems to be trying to stay at my back. I'll take it! :-) But we'll see. Murphy's Laws may apply.
So tomorrow we roll the trailer once again to Lake Solano campgrounds, Friday we will help mark the courses and Saturday I'll do the ride while Susan SAG's and takes pictures, and then after lunch we will socialize for a short time at the post-ride micro-brewery nearby before hooking up to return home in time for me to spend the night with Brianne.
From the note I emailed to my supporters on 5/16,
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To give you a bit of an update since last year:
-
Brianne’s quality of life has not changed and is
almost as low as life can get I’m afraid, but she is stable and still in her
apartment. She has few visitors but would love more! 760 Laguna Dr., Rohnert
Park, phone 585-6112. Call to schedule a visit only please. The telephone is
not her friend these days.
-
We are trying a mild untested treatment that
came my way through FARA and FAPG connections. No trial approvals or big
studies, just something that worked a bit for a Spanish dad of a FA’er. Not
expecting much and not seeing much so far.
-
This should be a great watershed year for FA
research! Follow with me on http://www.curefa.org/pipeline
. Look for details below the graph.
o RTA-408
will finish the Phase III trial late this year and have results and FDA approval
decision early next year.
o TAK-831
will complete their Phase II trial this year and we’ll know how strong the drug
may be for FA. 65 enrollees.
o Going
into Phase II testing because of the positive results from Phase I!
§ MIN-102
§ Dimethyl
fumarate
§ Resveratrol
§ Nicotinamide
o 5(!)
gene therapy companies competing to get into phase I testing!
o And
FINALLY a phase I stem cell trial coming this year!
Every year I am amazed at the level of research
activity for this little known orphan disorder! How can we have 11 treatment
possibilities in clinical trial this year?? One because we’ve captured the
imagination of the researchers through FARA’s work and two much of this work
will impact ALS, Huntington’s, Parkinson’s, MS and even perhaps Alzheimer’s.
If you would like to continue to support me in pushing this
research to its needed conclusion I invite you to
-
Go to https://secure2.convio.net/fara/site/TR/Events/General?px=1001704&pg=personal&fr_id=1541
for a credit card donation
Or
-
Send me a check made out to “FARA” and
memo-noted “2019 RA NorCal – Paul Konanz. 1921 Alice Dr., Penngrove CA 94951
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You can find Brianne at https://secure2.convio.net/fara/site/TR/Events/General?px=1002797&pg=personal&fr_id=1541 if you would like to support her Virtual Rider fundraising effort.
I thank you all for "following" this blog each year and for being personally close to us! Many Hugs!
