2019 RV-Dreams Spring Educational Rally - April 8 - 14, 2019 - Pahrump, Nevada - Registration opens in mid-September

Members Login
Username 
 
Password 
    Remember Me  
Post Info TOPIC: Reposting this because I suspect it got buried and we'll be meeting many at the Spring Rally


RV-Dreams Family Member

Status: Offline
Posts: 1627
Date:
Reposting this because I suspect it got buried and we'll be meeting many at the Spring Rally


 


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 






__________________

I don't know where I'm going but I'm on my way. - Carl Segan

Our "Rolling Rest Home" 2013 Trilogy 3650RL dragged by a 2005 GMC Sierra 4x4 Diesel Dually -SOLD

2015 Casita Spirit Deluxe 17 on the way.

Kids: Paris (AKA Kitty)  & Sadie



RV-Dreams Family Member

Status: Offline
Posts: 2951
Date:

Al-tho I wont be there Sherry & Jess......I send Big hugs!!!

__________________

 1998 ...Harney Renegade DP  class A

rers1@mail.com

 

My Service dog and life partner " Nikki"......Klee Kia Miniature Husky....(she Runs the ship!!)

We are not lost in the Woods.....Just Extreme boondocking!!!!!!



RV-Dreams Family Member

Status: Offline
Posts: 337
Date:

Like Lucky Mike, we won't be at the up-coming Rally. (We attended the 2011 Hershey, Pa rally)
I always enjoy reading your posts on the forum. Sending another big hug to you both! Pat and Charlie K

__________________

CK PK
2011 Ford F 350 Dually    2011 Carriage Cameo 37CKSLS
Retired early 2011



RV-Dreams Family Member

Status: Offline
Posts: 289
Date:

I, as some of the others will not be there, hugs for you. God Bless you, may all of your plans work out for you, if you ever need help you know where to ask.

Flyone



__________________

Team Cockrum:
2001, F250 Diesel, 2012 33 FT. CrossRoads Cruiser Fifth Wheel



RV-Dreams Family Member

Status: Offline
Posts: 1356
Date:

What can I say in a moment like this??? I won't; I'll just send along some more hugs and prayers!!! If you happen to be coming east by the way of the Music City; I'm about 30 miles east of there just off I-40. Just before I turned on the puter' I was thinking; why does my brain think I'm a younger man and my body let's my mind know that isn't true!!

I'm so happy that you both have the opportunity to been able to explore the RV lifestyle; many never do. I know I enjoyed my travels and I won't give up the DREAM that I might be able to do it again. You know where I am!!!



__________________

Life is too short. Live it Now!

Currently at Shady Acres RV Park   Lebanon; Tennessee

http://1Irishrover.blogspot.com

 



RV-Dreams Family Member

Status: Offline
Posts: 911
Date:

Two more virtual hugs from Pam and I. Looks like we won't make the Spring Rally. We didn't sign up early enough to make the list. Hopefully our paths will cross so we can meet in person.

Red

__________________

Full timing since 2/27/14.

Silverado HD 3500 4X4 Dually.

Momentum 380 by Grand Design.



RV-Dreams Family Member

Status: Offline
Posts: 204
Date:

Sherry, thank you for sharing your story. You and Jesse are truly an inspiration to us all. Ben and I very much look forward to meeting you at the rally and feel honored and touched by knowing you on this forum. Thoughts and hugs are with you both.

__________________

Jo & Ben

2014 Arctic Fox 32-5M  5th wheel pulled by a 2014 Ford F350 DRW

photo IMG_0781_zpsb4f463cb.jpg



RV-Dreams Family Member

Status: Offline
Posts: 75
Date:

So sorry for all the unexpected detours but glad that you have each other and a great outlook to keep moving forward as long as possible! We won't be at the Spring rally but will have all of you in mind and hope you have a great time! Sherry - Good luck with the driving (forwards and backwards and I hope our paths will cross for that glass of wine in the near future! In the meantime know that you are both in our thoughts and prayers!

__________________

Dwight, Vicki, and Mocha

'97 Damon Ultrasport



RV-Dreams Family Member

Status: Offline
Posts: 604
Date:

Sherry,

I cannot wait to meet you and Jesse in person and be able to give you both a REAL hug! Thank you so much for sharing your story. I am sure your positive outlook will serve you well during this time. I am truly sorry that you will be going through this, but glad you have each other and US to lean on for support!

Tell Jesse he will be in our prayers! (and YOU TOO!)

Kelly and Bill

Also, still can't wait to try those pineapple coconut bars you are making!

__________________

Bill & Kelly - with Callie along the ride.  

2011 Ford F350 Diesel Dually 4x4 

2014 Heartland Landmark, Grand Canyon 

"All those who wander are not lost" Tolkien

 BLOG:  http://bkamericanodyssey.com/



RV-Dreams Family Member

Status: Offline
Posts: 925
Date:

I read your post and two things came to mind. First good for you for keeping the dream alive and doing it your way!!! Second I am in awe of your positive attitudes, giving sprint, and overall positivity in the face of challenge....makes me feel a little whiny for worrying about my relatively little stuff. Can't wait to meet you :)

__________________

 Trace 

Ford F350 Super Duty 4x2.  Open Range 386FLR

Follow our journey at www.camperchronicles.com

 



RV-Dreams Family Member

Status: Offline
Posts: 1627
Date:

Thanks for your kind words and thanks all! See you at the Rally!

Sherry and Jesse
PS home loan approved!

__________________

I don't know where I'm going but I'm on my way. - Carl Segan

Our "Rolling Rest Home" 2013 Trilogy 3650RL dragged by a 2005 GMC Sierra 4x4 Diesel Dually -SOLD

2015 Casita Spirit Deluxe 17 on the way.

Kids: Paris (AKA Kitty)  & Sadie



RV-Dreams Family Member

Status: Offline
Posts: 1989
Date:

A very brave post to say, "Do it while you can."

Lord willing we will see you at the Rally and again on the west coast.  As we say, "It's only Arizona." 

We're both so looking forward to seeing you again and some other very special people as well.

B & L



__________________

Bill & Linda
2014 New Horizons Majestic F37RLTSS 96

2016 RAM 5500HD \ 4-Wheel Drive \ Link Air Ride
Classy Chassis RV Hauler Bed Conversion \ Aux Fuel Tank 



RV-Dreams Family Member

Status: Offline
Posts: 1593
Date:

Sherry & Jesse, your story is touching and gives credence to the idea... "dream it, do it".  While ALS is a mystery to doctors, so is the intangible power of goodwill.  One just cannot help but feel better, stronger and more will to live each moment to the fullest when friends and family rally around to support you. 

You give us more strength to attain our dream and for that, we thank you.

We add our positive thoughts for you to the chorus.

 

 



__________________

Brian, Cindi & Josie (our fur baby)



RV-Dreams Family Member

Status: Offline
Posts: 1627
Date:

Finally, the home we sold that closed August 8 of last year finally closed today as we are buying it back. Whoo Hoo! I'd have to check the papers but I think we opened escrow early April. Hopefully this gives hope for you folks waiting for yours to close - it does happen. We'll be back in the house sometime in early August almost a year to the date from when we closed last but over a year that we have been on the road. (We left May 3, 2013.)

What a fabulous year we've had, the places we've gone, the things we learned, the FRIENDS we made and old friends and family visited. We're finishing up a month+ long visit in New Hampshire (fabulous summer!) to visit Jesse's daughter and family. What wonderful people they are and how much fun we've had! While here I think I've eaten about 10 lobster rolls, laughed, sipped lots of wine - Hatch Green Chili Wine in NM - (beer for Jesse) laughed, toured many New England small towns laughed, saw a Billy Joel Concert and enjoyed the local history (SO MUCH!) & local cuisine and laughed some more and along the way met many wonderful RV-Dreamers.

We recommend this are of the country to anyone planning a visit. We recommend just not passing thru but staying a while and exploring. It's so beautiful and interesting. Salem Witches, Boston Harbor, Revolutionary War Hero Graves, Marblehead home of the US Navy, Civil War hero graves, old buildings, strong families, great values, straw boaters and seersucker suits.

We're leaving soon, one more stop in Connecticut to see a cousin then headed to Cottonwood, AZ (August ugh!) to oversee adaptation of our home. The VA Specialty Adapted Housing expert reviewed the home a couple of weeks ago and we're awaiting his report.

I'll be doing all or most of the driving home. Jesse's hands aren't working well at all and he's falling at least once a week none too serious at this point and there are other small issues. He suspects some people may think he's being abused from his scrapes on his elbows and knees, but he is determined to do as much as he can as long as he can and wouldn't think to whine or complain. I'm amazed at how many little things I depended on him for and at how cheerful yet realistic he remains.

We're good so far, we've been blessed. We loved this crazy year on the road and who knows after we're settled in AZ we hope to take small trips. Right now we plan to park our Trilogy on our lot at Jojoba Hills in CA and use it for our second home. We are adapting our plans every single week as things change & enjoying almost every moment, which is a good mantra for all us RVers!

Sherry & Jesse


__________________

I don't know where I'm going but I'm on my way. - Carl Segan

Our "Rolling Rest Home" 2013 Trilogy 3650RL dragged by a 2005 GMC Sierra 4x4 Diesel Dually -SOLD

2015 Casita Spirit Deluxe 17 on the way.

Kids: Paris (AKA Kitty)  & Sadie



RV-Dreams Family Member

Status: Offline
Posts: 1989
Date:

Very glad to hear this paperwork is behind you.

Yes, Whoo Hoo!

We might just be by this fall.  Plans in the works.

Bill and Linda



__________________

Bill & Linda
2014 New Horizons Majestic F37RLTSS 96

2016 RAM 5500HD \ 4-Wheel Drive \ Link Air Ride
Classy Chassis RV Hauler Bed Conversion \ Aux Fuel Tank 



RV-Dreams Family Member

Status: Offline
Posts: 171
Date:

What an inspiration of strength you and Jesse are. You warm my heart. Always remember as you travel down this rocky road that you have more friends than you know that are here for you.
I wish that I had the courage that you have to learn how to drive this thing of ours. I know how important is for both to be able to handle the driving. You have given me new motivation to learn.
Hugs to you both, Ann

__________________

Life is a Journey 

Hank & Ann

Maggie and Weezie

2005 36 CK3 Mobile Suites 5th Wheel

2012 Ford F350 DRW 4x4 Lariat



RV-Dreams Family Member

Status: Offline
Posts: 1593
Date:

Glad to hear the house has worked out for you both. You have inspired Cindi to take on the daunting task of being co-driver of our future rig. You both gave us a first glimpse in person of the RV-Dreams community and you and Jesse are truly great ambassadors of the "family" we have come into.  

Here's to your continued adventures. Our thoughts are with you both. 

Brian, Cindi and "Sadie pal" Josie



__________________

Brian, Cindi & Josie (our fur baby)



RV-Dreams Family Member

Status: Offline
Posts: 251
Date:

Thanks for the update; think of you guys often... Glad everything is falling into place with your move and it really sounds like you had a fantastic year on the road! Hope to connect with you guys again soon!! Hugs to you and Jesse!!

__________________

Cori & Greg Young...and Hobie, too

(formerly "byseaandbyland")

2008 45' Country Coach Allure

2015 GMC Sierra 1500

www.therestlessyoungs.com

www.rvsolarsolutions.com

TRY%20logo.png

Page 1 of 1  sorted by
Quick Reply

Please log in to post quick replies.

Tweet this page Post to Digg Post to Del.icio.us