On Saturday, September 26th we are participating in the 16th Annual Napa Valley Event to Defeat ALS, but this year it is with a twist. The ride will be virtual. We are disappointed not to see everyone this year, but it would not be safe for our PALS (persons with ALS) so we are going with the flow. We will still be raising funds for the ALS Association, which provides care services; funds global, cutting-edge research; and supports important public policy initiatives.
As most of you know, Miles was diagnosed with a type of ALS 6 years ago. He is still doing quite well given his condition, but progression has slowed Miles a bit more this year. He had a surgery last year to implant a device into his abdomen to give him micro doses of many of his medications. Taking far fewer pills now is quite an improvement. Initially, after the surgery, Miles felt much more fluid in his movements which was great. Unfortunately, the pandemic has left its mark on Miles. He has not been able to have his body work or his home health care provider which means he is currently less mobile. Sadly, this means no more Segway for him. Miles had his first massage in 3 months on Tues and he immediately got on the tread mill and walked 1/8 of a mile and he was thrilled. It is the little things in life that bring him pleasure.
As for verbal skills, Miles has a new device to speak for him that he rarely uses. He prefers taking his time to talk, or text to talk apps, but the ‘talk machine’ is there if he needs it. Those of us who are around him most can understand what he wants to communicate, and we can also translate for the rest.
At home Miles is remarkably busy in his new ‘shop’. He is moving out of his shop of 30+ years and is paring it down to fit on our side yard. He is in the shop for hours every day, keeping himself active and engaged.
Now for the ride…We'd love to have you part of team (S)Miles if possible, this year. This team is such a boost for all of the McConnell/Breens and we love everyone who has joined with us. If you cannot be part of the team but you would like to support me and Miles, you can donate below. Raising awareness of the urgency to find treatments and a cure is our goal. We know that this year (especially) we all have different goals and different charities we want to support. With the pandemic, unemployment and protests we understand if your goals this year go beyond Team (s)Miles. 2020 will never be forgotten for any of us.
We are happy to report that Last year Team (s)Miles raised over $100,000 for the bike ride and we hope to do it again. All your support means so much to Miles, Spence, Jay and me and you are all so appreciated.
We send you love and (s)Miles,
Dubie, Miles, Spencer and Jay