It's so interesting the Lucky Mike started his thread "What would you do....." on January 21st which is the day my wonderful husband, Jesse, got his diagnosis. Some of you might remember I had posted back in January that we were handed a Big Detour Sign. This is it. We are dealing with exactly the questions Mike raised.

Jesse, being 70, and only hospitalized one day in his life (isolated for a measles rash with no other symptoms way back when he was in basic training) was diagnosed with ALS, Lou Gehrig's Disease. Like he told the doctor, "he's never been old before" so he didn't realize the weakness in the fingers of his left hand only was anything to be concerned about until he went to play poker with the guys at the RV park and he couldn't shuffle the cards. He had hand strength, no numbness or finger trembling but fine motor control in his left hand fingers was going. We were in California at the time so I researched highly rated neurologists in the area but all we're booked thru the end of February. Since we were headed back to our former home area in Cottonwood we booked an appointment there and had to cancel the Boon-docking Rally. The doc was wonderful and after a thorough exam he gently gave us the news and referred us to a top ALS specialist in San Diego. Saw him in February for a second consultation and he, of course, confirmed the diagnosis.

In the interim, since ALS is often rapidly progressing we bought the Class C Jamboree that I wrote about on the forum  thinking that it would be easier for us to travel in and for me to handle alone if it became necessary. It was an awesome rig but I missed our much loved Trilogy home. Turned out great for Jesse's sister because she came to visit and try it out and bought it and drove it back to Colorado which we had just bought it from and taken back to CA. 😄

So, on to Plan C, I enrolled in RVDrivingSchool.com and received wonderful lessons and training on driving our truck and pulling our big Trilogy. 

Then we went back to our former hometown for dentist, taxes, vet, etc. and on of our good friends told us that our single level home that we had just closed on from our sale last August was back on the market for sale by owner because of a death in the family. So over we went. It turns out the very lovely new owner's name is the same as my married name and her husband had been misdiagnosed with ALS 10 years prior. We immediately bonded. We have the right of first refusal and are now in the process of getting loan, etc. to buy it back.

We left our Subaru in my son's spare garage in the Tucson area a few days ago and are continuing to go East to the Rally stopping to see sights and relatives and friends along the way. Then we're heading North to see Jesse's son & his family near Boston and his daughter and her family in NH, then friends in Maine and eventually back west, all depending. This is how we choose to spend our time as long as we can continue to do so. But I quickly found I do need to know that I had a safe, easily manageable home that's wheelchair accessible with nearby friends and good doctors & hospital for when we need it. Our families are scattered all over and most in snow (Jesse's 4-letter word) country so we ruled that out. 

Jesse gave his blessings for this post to our family on this forum. We've told a few special people about it and they have been incredibly supportive. One even volunteered to drive our whole rig back to AZ if I needed to fly Jesse home! I'm a communicator (in case you hadn't noticed) and we have no secrets and don't feel this is anything to hide or pity. Jesse's feeling is he's had an incredible life and so many experiences and joy there's no reason to be upset. Many are diagnosed in their 30's or 40's and he was fortunate to make it to almost 71. He said when it progresses so far that he can't move around on his own I can just grease him up and slide him around. 😄 We have other laughs about this stupid, not-understood-by-doctors-disease with no known cure. Trust me I've done the research! 😜

Three weeks ago at the Multidisciplinary Clinic (pulmonologist; nutritionist; speech, occupational, & physical therapists; an ALS Organization representative, a VA representative - all of which we'll eventually need) to establish a baseline for future needs they told him he's in incredible shape and to go and enjoy your life and to come back in 3 months. We told them we'd be back in 6. Just three weeks later his right hand fingers are getting weaker and he's stumbling on occasion. Some PALS (people with ALS) plateau and we're hoping for that. 

So why am I sharing all this?

Because Jesse's volunteered all his adult life and helping others is important to him. Maybe someone on here is experiencing the same weakness or knows someone who is.

Because those of you who are sitting on the fence about living your dreams might want to rethink that IF you have options.

It turns out the in incidence of ALS is 50% higher in Vets than in the general population so the VA fast-tracks incredible support for PALS and you might know someone who needs that help.

Because we're going to continue this lifestyle as long as we can and still enjoy every single day now and down the line. 

Because we'll be meeting some of you at the Rally and we plan to learn, laugh, share and enjoy you all.

Because others on here are dealing with your own health issues publicly or privately and we support you all.

Because good insurance is SO important. 

Because we both had sone denial about how rapidly this could progress we're flexing, adapting and changing and managing our expectations on the fly. Important, often said, attributes for full-timers. 

Because at some point down the road you might want to stop and see us and share a glass of wine or a beer in Cottonwood but in the meantime, let's do it now and poke fun at each other. (Wait till you see me try to park!)

Sherry & Jesse