We're back in Cottonwood, AZ (in 100 some/often times plus) degree temps parked at Dead Horse Ranch State Park. Monday we move to a monthly site at a local park while we begin the adaptations on the house for Jesse's future needs. We we're put in touch with an architect in Tacoma who specializes in adaptive housing and more importantly in getting the paperwork thru the VA!
When the plans are final (early next week) we begin getting quotes for the modifications and have been looking at flooring and finishes. Jo, I wish I had you here to help with that, you did such a great job on the condo!
Today we had a couple of local movers move our things from our storage unit to the house. On the 1st we travel to Tucson pulling a U-Haul to pick up some furniture items we stored in my son's guest house and bring that back. One of the mover guys gave us his card so he'll unload. Former neighbors are going out of their way to welcome us back and it's heartwarming. We live in an HOA so word has traveled fast.
We have a full legal page and a half of To Do's that we're working our way through. And we've managed to check off quite a few in just two days but plenty more to go. Getting our baby washed and waxed tomorrow morning. Truck into the shop next week for service and mamos/blood work and check ups for me and check ups for Jesse. Sadie needs a bath and her nails trimmed and she cried and cried with joy to see some of her old friends. Paris the cat doesn't give a hoot! 😄
Ultimately we plan to park the Trilogy on our lot in Jojoba Hills SKP CoOp in California for our "second home" But we have no idea when that will be.
Our year has been fabulous and way too short. We are happy with how everything is working out and are so grateful for the friends we met (and others re-met) this year.
The offer stand to share some beer/wine food to Dreamers who will be passing thru. Jesses says he won't be truly handicapped until he can't hold a beer!
Sherry
BiggarView said
04:42 PM Jul 26, 2014
Sherry & Jesse, we have to admire your purpose and passion. Our meeting with you was inspiring for us and a great way be welcomed into this "family". We were glad we could assist you with Sadie during your Chicagoland visit. We learned a ton from you in the short time we visited with you at your lovely "Rolling Rest Home". We are glad the plans you are now making for the next chapter are progressing and hope all goes smoothly. Don't know when we will get an opportunity to pass your way, but know that if there is a way, we would welcome another chance to trade stories in person at the soonest possible date.
Jesse, we'll just have to figure out a BADAAS (beer automated delivery and administering system)(sorry had to keep it clean for the censors) for you. What Naval type doesn't love a good acronym.
Our warm thoughts, always.
Bill and Jodee said
05:31 PM Jul 26, 2014
Serendipity at it's best....having what you need most to welcome you home.
Even in these uncertain times, or maybe because of them, your calm resolve comes through in your post. Knowing what you need to get done, in what time frame, with what resources - all those things really help move things forward in the best possible way.
You and Jesse have been dealt a tough hand, and yet are blessed in so many ways. You continue to inspire me and remind me of what is truly important.
We will get to Tucson in the next 24 months - we'll bring the brew.
Jodee
SnowGypsy said
06:03 PM Jul 26, 2014
Wishing you the best and hope that settling in goes smoothly. We left AZ in the late 90's and I still remember the summer heat especially with the monsoons! Take it easy in the heat because it can catch up with you pretty quick.
Terry and Jo said
06:47 PM Jul 26, 2014
Taking a bit here from Jodee's post about being dealt a "not-so-wonderful hand," it is inspiring to many of us that you accept what has been dealt with grace and humility. Our prayers are for you and all of your family, and may the "inevitable" (if that is what it is) be a very long time in coming.
Terry and Jo
PIEERE said
08:10 PM Jul 26, 2014
Jesse & Sherry: Though you have been dealt a tough hand I am pleased to know you had some great travels and the RVing. I will never give up praying for you. Although we never met face to face its like I have. Don't ever give up!!!
NWescapee said
08:39 PM Jul 26, 2014
Jesse and Sherry - so happy to hear you made it back to Cottonwood safely. You guys have inspired us in so many ways and continue to with your attitude.
We will see you in late Oct / early Nov and hope to maybe talk you into being our Sedona tour guides!! Once we figure out our travel plans we'll email you the dates we'll be in your area. And of course, we know plans are subject to change.
And knowing that Jesse's favorite kind of beer is OPB (Other People's Beer) Dale said he'd bring a good supply!!
Camper Chronicles said
04:40 AM Jul 27, 2014
Jesse and Sherry,
Your truly inspirational . Very happy for you that you found a way to exit on your terms. Hope we get to visit in the future as we plan on spending most of our time out west. You should set yourselves up as and RV- Dreams West outpost :)
WestWardHo said
06:40 AM Jul 27, 2014
Thanks all for your warm support.
Brian, Jesse is very creative so I'll put him to work on designing a BADAAS system. You can be his consultant.
Jodee & Trace, ya'all come on down just don't do it in July or August!
Cathy, you're right about the monsoons. The blessing there is that it cools it down for a little while.
Pieere & Terry (and others) thanks for your prayers. Pieere we missed you twice going thru TN but knew that on our return trip through that you were off having a wonderful time w/your family.
Ruth & Dale, we'll leave the lights on for you.
Now I'm having fun thinking how we can give the few grumps fits in our HOA that reported us to the Property Manager for having our Trilogy parked more than 24 hours when we loaded up to go full time a year ago May. I'm imagining lots of our Dreamer friends with a huge variety of rigs coming thru, parking and hooking up to our water and electric, putting out slides and camping on our street. 😄😄😄😄 if you can handle a downhill slope you're welcome to it. Heh heh heh.
Sherry
Bill and Jodee said
11:46 AM Jul 27, 2014
I like the way you think......
NWescapee said
04:27 PM Jul 27, 2014
How much of a downhill slope should we plan for?? HeHe!!
WestWardHo said
09:01 AM Jul 28, 2014
Ruth, Hummm, don't know degree but we've had our slides out there w/out an issue. Not too sloped to sleep or have ****tails.
Sherry
on edit: too funny what auto edit did!
-- Edited by WestWardHo on Monday 28th of July 2014 09:02:13 AM
BiggarView said
09:14 AM Jul 28, 2014
Just watch out for the sliders.(edible kind) That slope means if they get away, could be along chase down the hill.
-- Edited by biggaRView on Tuesday 29th of July 2014 04:57:43 AM
The Restless Youngs said
07:47 PM Jul 28, 2014
You guys are an inspiration!! Hugs to you all!!!!
el Rojo and Pam said
10:03 PM Jul 28, 2014
Glad you made it back safe and sound. When can I get a reservation? A little slope never hurt.
DebbieM said
10:43 PM Jul 28, 2014
Your plans sound like they are working out nicely. We will definitely visit. We have in-laws and friends in Surprise and Wilhoit. We plan to be there next April. Good luck with your to-do list.
cheryls-other-half said
09:57 AM Jul 29, 2014
Sherry & Jesse, I hope when Cheryl's hip heals, we'll be able to strat seeing this great huge country in our BEAST (Bull and CoW).
Will definately make plans at some point to stop and meet you guys.
No idea when, but who knows....
dianneandsteve said
07:27 PM Jul 30, 2014
Glad things are falling into place for you guys. As others have said you guys are truly inspirational. With all of the issues you've had to deal with starting out in this lifestyle you guys have always put a positive spin on things. We would love to see you guys again so maybe our paths will cross again this winter.
Take care and good luck!
bjoyce said
09:18 PM Jul 30, 2014
I am glad we got a small amount of visiting in while you were in Mesa. We will probably get by Cottonwood again some day, then we can jabber some more.
NWescapee said
11:15 PM Jul 30, 2014
I'm seeing an RV Dreamer gathering in Cottonwood this winter!!!!!
bjoyce said
09:39 AM Jul 31, 2014
NWescapee wrote:
I'm seeing an RV Dreamer gathering in Cottonwood this winter!!!!!
Better timing is on your way north in early spring. It is too cold in the Cottonwood/Camp Verde area in true winter for most of us.
NWescapee said
12:58 PM Jul 31, 2014
I think our current plans are to travel thru Cottonwood as we leave Sacramento, heading to Tucson in late October. I could be persuaded to stop in the spring as well!
WestWardHo said
08:44 PM Aug 11, 2014
Yes, stop in spring, fall or early summer. Bill's right - winter can be cold here but mostly it's sunny. A friend picked Jesse to go to a meeting tonight with old friends from Yavapai County Sheriff's Search & Rescue group tonight.
Hard to believe just a year and a half ago he was out on arduous searches and today long walks tire him! But he can still walk and is planning customization of lightening bolts on his electric wheelchair (his friend here has dibs on flames so he had to compromise.) He's been asked to serve on the board of a startup Veteran focused ALS organization to help them work thru the VA system and is anxious to start giving back again. He's volunteered all his adult life as and EMT and firefighter in addition to working full time.
Still waiting on final plans for house modifications so we're still living in our Trilogy in a local campground so still lovin' the life. Then we get quotes from builders for modifications and then can get moving. It's nice to be able to go to the house to do laundry. I'm trying to figure out how I could do laundry every two weeks while on the road and now it's a load every day? Guess if it's available...
He's still my hero because while his hands don't work well at all (buttons, socks, cutting food, holding fork, lifting 1/2 gal of milk from fridge, holding coffee mug) he somehow managed to get into the sliding file drawer next to fireplace and repair sliding drawer that had pulled out two weeks ago. Maybe it's because Sadie was right there "helping" him!
We're doing fine. Hope our Dreamer friends will continue to stop by. We know of two couples in late October, keep on comin'. 😄 This is a great valley to visit with lots of interest.
Sherry
NWescapee said
10:42 PM Aug 11, 2014
Can't wait to see you guys in October, although I'm not sure we'll have time to fit everything in our schedule that you are planning, you are just giving us a reason to come back in the spring before we head north again!!
Jesse continues to amaze us with his positive attitude. You both continue to inspire us and we will come well prepped with beverages and so look forward to catching up over a few adult beverages. And we will be more than happy to play with Sadie and help wear her out for at least 30 minutes before she naps and recharges. I was just ordering prints to scrapbook and found the ones of Dale and Sadie "wrestling" over her toy, I think that puppy could easily outlast all 4 of us and still be ready to romp.
Jo And Craig said
06:07 AM Aug 12, 2014
Sherry, just wanted you to know we are thinking about you and Jess and wishing you the very best! Hope to see you both again some day!
The Hensons said
08:10 AM Aug 12, 2014
We enjoyed meeting you both this year and wish you well on your next leg of the journey. Continued prayers for you both.
rajmoore said
05:28 PM Aug 12, 2014
Judy and I so enjoyed meeting you and Jesse at the rally in TN. You both made us feel welcome! Know that you both have lots of prayers and love from us!
marianne57 said
07:32 PM Aug 15, 2014
Can't believe we had the privelege (and it truly was) of having you as neighbors at the spring rally. We are so glad we got to meet you and Jesse and very glad to hear that you had safe journeys and are settling back in. Your knowledge and experience will ALWAYS be beneficial to those of us just starting and we will use you for many answers to questions along the way...I'm sure. Our prayers will continue for both of you to make a smooth transition and look forward to what's ahead. Take care, and give Sadie love from Maggie. (ps....our new home arrived and we're picking up in September) Maggie said she wants to see Sadie in the travels :)
WestWardHo said
08:47 AM Aug 16, 2014
Ah Marianne, it was OUR pleasure to be neighbors with you, Barry and Maggie. You are such gentle, thoughtful, fun neighbors that anyone having the luck to have you as campground neighbors will benefit. We're sorry you had to get back to work early and couldn't stay 'till the last minute at the rally.
I'm so excited your new home will be picked up soon and we want to see pictures!
Sherry
WestWardHo said
09:28 AM Sep 14, 2014
It's now Mid-September and we're still waiting for builder estimates on the house remodel. Received one and awaiting the VA required 2nd. Then we submit both to the VA Specially Adapted Housing rep in Phoenix and wait for the VA to approve and allow us to go forward. We're so very fortunate as because Jesse's ALS is "service connected" the VA is paying for modifications. They will not allow us to pay for mods out of our own pocket and then reimburse us. It'll be a couple of more months before we're in the house.
I/we've learned the VA has regional offices and hospitals separately both for medical care and for benefits and we are in the one that is moving slowest. Three months to get the Aid and Attendance benefit Howard wrote about for his father and 8 weeks to get into VA Hospital for his first evaluation here. (Took only 3 days in NH!) The hospital is required for referrals for prosthetics (power wheelchair, Boyer lifts, special beds, vent systems, etc., etc.) we go tomorrow for the wheel chair eval. Then it will take about three more months to get it.
We've already rocked the boat significantly and are not above calling district or national offices and it's paying off. As my Dad used to say, "There's more than one way to skin a cat!" (Ohhh, hate that as we love cats!) Trust me, you don't want to get between care of MY and other Vet(s)!
Again, we're grateful for his wonderful health insurance as we can go outside the VA for specialist care. In fact we went to a top rated specialist in Phoenix on Friday and he may choose to get into a low risk clinical trial.
Our weather is now perfect - low 50's nights and 80-90 degree days. Great pool & sleeping weather! Jesse wants to do as much as he can as long as he can and he's still doing well in spite of somewhat rapid (to us) progression. Can still hold that beer!
Sadie is still taking obedience lessons and she is coming along. Didn't want her pulling Jesse off his feet - again.
Time to get ready to move our Trilogy to another park for a couple of months. We have decided to sell it and the truck once we're in the house.
Sherry
Bill and Jodee said
06:33 PM Sep 14, 2014
Glad to hear that things are coming together for you. Bureaucracy is frustrating but those benefits are such a blessing!
We are in triple digits this week in SoCal, and hating it - low last night was 76 Even an ice cold beer doesn't provide much relief!
Keep checking in
Jodee
Bobc said
07:29 PM Sep 14, 2014
You guys just seem to have the greatest attitude with every thing that is going on
Please continue to make the best of it and enjoy life to its fullest.
Best of luck to you and look forward to your future posts
WestWardHo said
07:55 PM Sep 14, 2014
Her BobC,
This morning we had to move campgrounds as someone was coming into out site. We were ready early, I had everything inside packed by nine while Jesse was in the shower. Got everything disconnected outside but couldn't turn that one stupid clear connection for sewer hoses. Called a friend as our CG wasn't that friendly. In the meantime drove a block away to overflow parking to get truck that had been parked there for a month. Wouldn't start. Back to get Jesse and had my jumpers. That worked. Connected up the trailer and retracted everything. Heard a strange continuing hum. After some investigation discovered it was Banks electronic braking system locking disc brakes on trailer. In their booklet they had an emergency number. Called it and was called right back. Took our friend thru many steps and finally after pulling wires under dash and disconnecting and reconnecting it worked. Yippee!! Pulled into our new campground about 7 miles away at 1:30 PM hot and tired.
Our friends say they've never have ever heard of so many problems for anyone! We laugh about it, what else can you do?
Sherry
bjoyce said
08:27 PM Sep 14, 2014
Sherry: My life experience says the Universe is telling you, "sell it". I know that is already your plan, but the Universe likes to pound its views into your head, hard.
WestWardHo said
06:12 AM Sep 15, 2014
Dear Bill,
I think you're right and I think you're being kind by not saying "get it thru your hard head"! 😄
Sherry
NWescapee said
12:26 PM Sep 15, 2014
So glad to see you are keeping your sense of humor about all this! Looking forward to seeing you guys in about 6 weeks or so.
WestWardHo said
05:58 PM Oct 3, 2014
So now October 3rd and we're still in our second campground in Cottonwood. We only have a 30 amp connection here which has been a challenge for AC when it's heated up here but because no work has started on the house YET - thank you regional VA office - we've had the house to go to so we have gone there frequently prepare dinner and we can cool off.
Jesse now has a loaner Power wheelchair until his custom fitted one arrives. It's in the garage at the house and he's taken it for evening strolls around the neighborhood. We've ordered our Mobility Van and are awaiting VA approval on that. Then I will be able to take him, his chair (and Sadie) anywhere. A power ramp comes out the side and his power wheelchair will roll right in and lock down in the passenger space in front.
But we've had a nightmare with the regional office concerning home modifications. Our architect would submit plans, DOM's (Description Of Materials), builder's estimates and the VA would come back with questions like: Brand of paint, color, cost per gallon or for "6 ft roll under vanity with tilt mirror and touch faucet with item numbers called out" we would get questions what manufacturer on vanity, cabinets faucet, etc. After faxing literally over 100 pages to the VA with more forms/details, answers, etc. I got REALLY mad and started emailing everyone we could think of from state advocates up the line to DC and up the VA chain to the top because this is the time an honorably discharged 20 year service vet with no drug or alcohol problems should be checking off his bucket list rather than expending his limited energy and 8 hours+ a day gathering forms, filling out forms, faxing making calls, faxing more and then finding out after the fact that it wasn't good enough! I know there are folks who take advantage and commit fraud but not here. The central office at headquarters in DC has taken over his file and we think it's been approved and now awaiting funding of escrow account so building can commence in 3-4 weeks. We might be in by Thanksgiving! Jesse now calls me his Dragon Lady.
We had a terrific visit with Bill and Linda yesterday, who have mentored us through so many upgrades to say nothing of DTV 😄 and offered loving friendship as you others here have. Ruth & Dale, we are SO looking forward to seeing you soon and we have our "costumes" ready!
We have found Angels in this forum in DC and at the local VA Hospital who have offered amazing guidance and loving support. Jesse remains cheerful and unembarrased- "it's not my fault I have ALS so why worry?"
Sherry
RV-Dreamers passing thru - we would love to see you.
marianne57 said
06:07 PM Oct 3, 2014
Wish we were already out Sherry! We'd love to see you both again, and so sorry you're going through all of this hassle. You have a strong will and that's what both of you need right now! You go girl and don't take their bureaucratic crap! We'll keep you in our prayers and tell Jesse hi and keep his great sense of humor! Take care and be strong! You'd make a great politician.....we could use a few! :)
bjoyce said
07:32 PM Oct 3, 2014
Long ago a person I respected said that "Get me a rock" is a power trip game for some people. The game is "get me a rock.", "No, that rock is too green", "No, that rock is too big", "No, that rock looks like the one someone else brought me last month", etc. You did well, you killed their power trip.
el Rojo and Pam said
08:39 PM Oct 3, 2014
Sorry to hear about the bureaucratic delays. Pam and I are headed your way. We hope to be there mid November. We will keep you posted. I've got a cold one for my buddy Jessie!
Pam and Red
BiggarView said
05:06 AM Oct 4, 2014
The whole "thank you for your service" platitude seems wholly inadequate when situations like this come up, and they seem to be coming up far too often.
One has to wonder how quickly they would move mountains if Jesse was one of their own.... wait a minute, Jesse IS one of their own. Sounds like, once a case is opened, an advocate should be appointed/assigned immediately to expedite the trecherous waters of bureaucratic legalese with knowledge on what's required. Less guesswork and more "git 'er dun". Anybody's arm we can twist on your behalf?
Sherry and Jesse... your spirit, determination and grace continue to be an inspiration for us.
Affection, always...
-- Edited by biggaRView on Sunday 5th of October 2014 10:23:11 AM
WestWardHo said
03:26 PM Oct 4, 2014
Bill Joyce love "your" rocks! So true.
Red, Jesse looks forward to hearing about your Alaska adventures over a cold one.
We spent last night in the local hospital ER. Jesse had a sudden one sided piercing headache (9 on a scale of 1-10) and woke me about 11:30. Got him to the ER by 11:45 with a BP of 227/92! They immediately double dosed him with morphine and anti nausea meds via IV. No history of headaches but intermittent mild ones in last week or so. Cat scan was clear as was spinal tap. YEAH! Final guess was migraine brought on by the ALS med he started 10 days prior. We were home by 4:30. We follow up on Monday with his Neuro.
After some sleep this morning he said sincerely, "I'm so lucky, I have such a good life!" Thats my guy.
Sherry
-- Edited by WestWardHo on Sunday 5th of October 2014 09:51:15 AM
NWescapee said
04:49 PM Oct 4, 2014
Can't wait to see you guys! So sorry to hear about last night's trip to the ER, glad to hear Jesse still has such a positive attitude.
Hugs!!!
WestWardHo said
09:54 AM Oct 5, 2014
Howard, Gene and Terry,
Woke up this morning realizing I had taken this thread in a political direction. I sincerely apologize to you and to our fellow dreamers. I have too much respect for this forum to be so unthinking so I went in and edited my own post.
Sherry
LeO said
09:15 PM Oct 14, 2014
Bless you Sherry, so glad to see your update and that so many things appear to be falling into place! Hope you'll keep posting; even while stationery in your S&B! You have touched many lives! God be with you both, as you navigate these "new/old waters"! Regards from Oregon, LeO
We're back in Cottonwood, AZ (in 100 some/often times plus) degree temps parked at Dead Horse Ranch State Park. Monday we move to a monthly site at a local park while we begin the adaptations on the house for Jesse's future needs. We we're put in touch with an architect in Tacoma who specializes in adaptive housing and more importantly in getting the paperwork thru the VA!
When the plans are final (early next week) we begin getting quotes for the modifications and have been looking at flooring and finishes. Jo, I wish I had you here to help with that, you did such a great job on the condo!
Today we had a couple of local movers move our things from our storage unit to the house. On the 1st we travel to Tucson pulling a U-Haul to pick up some furniture items we stored in my son's guest house and bring that back. One of the mover guys gave us his card so he'll unload. Former neighbors are going out of their way to welcome us back and it's heartwarming. We live in an HOA so word has traveled fast.
We have a full legal page and a half of To Do's that we're working our way through. And we've managed to check off quite a few in just two days but plenty more to go. Getting our baby washed and waxed tomorrow morning. Truck into the shop next week for service and mamos/blood work and check ups for me and check ups for Jesse. Sadie needs a bath and her nails trimmed and she cried and cried with joy to see some of her old friends. Paris the cat doesn't give a hoot! 😄
Ultimately we plan to park the Trilogy on our lot in Jojoba Hills SKP CoOp in California for our "second home" But we have no idea when that will be.
Our year has been fabulous and way too short. We are happy with how everything is working out and are so grateful for the friends we met (and others re-met) this year.
The offer stand to share some beer/wine food to Dreamers who will be passing thru. Jesses says he won't be truly handicapped until he can't hold a beer!
Sherry
Sherry & Jesse, we have to admire your purpose and passion. Our meeting with you was inspiring for us and a great way be welcomed into this "family". We were glad we could assist you with Sadie during your Chicagoland visit. We learned a ton from you in the short time we visited with you at your lovely "Rolling Rest Home". We are glad the plans you are now making for the next chapter are progressing and hope all goes smoothly. Don't know when we will get an opportunity to pass your way, but know that if there is a way, we would welcome another chance to trade stories in person at the soonest possible date.
Jesse, we'll just have to figure out a BADAAS (beer automated delivery and administering system)(sorry had to keep it clean for the censors) for you. What Naval type doesn't love a good acronym.
Our warm thoughts, always.
Even in these uncertain times, or maybe because of them, your calm resolve comes through in your post. Knowing what you need to get done, in what time frame, with what resources - all those things really help move things forward in the best possible way.
You and Jesse have been dealt a tough hand, and yet are blessed in so many ways. You continue to inspire me and remind me of what is truly important.
We will get to Tucson in the next 24 months - we'll bring the brew.
Jodee
Taking a bit here from Jodee's post about being dealt a "not-so-wonderful hand," it is inspiring to many of us that you accept what has been dealt with grace and humility. Our prayers are for you and all of your family, and may the "inevitable" (if that is what it is) be a very long time in coming.
Terry and Jo
We will see you in late Oct / early Nov and hope to maybe talk you into being our Sedona tour guides!! Once we figure out our travel plans we'll email you the dates we'll be in your area. And of course, we know plans are subject to change.
And knowing that Jesse's favorite kind of beer is OPB (Other People's Beer) Dale said he'd bring a good supply!!
Your truly inspirational . Very happy for you that you found a way to exit on your terms. Hope we get to visit in the future as we plan on spending most of our time out west. You should set yourselves up as and RV- Dreams West outpost :)
Brian, Jesse is very creative so I'll put him to work on designing a BADAAS system. You can be his consultant.
Jodee & Trace, ya'all come on down just don't do it in July or August!
Cathy, you're right about the monsoons. The blessing there is that it cools it down for a little while.
Pieere & Terry (and others) thanks for your prayers. Pieere we missed you twice going thru TN but knew that on our return trip through that you were off having a wonderful time w/your family.
Ruth & Dale, we'll leave the lights on for you.
Now I'm having fun thinking how we can give the few grumps fits in our HOA that reported us to the Property Manager for having our Trilogy parked more than 24 hours when we loaded up to go full time a year ago May. I'm imagining lots of our Dreamer friends with a huge variety of rigs coming thru, parking and hooking up to our water and electric, putting out slides and camping on our street. 😄😄😄😄 if you can handle a downhill slope you're welcome to it. Heh heh heh.
Sherry
Ruth, Hummm, don't know degree but we've had our slides out there w/out an issue. Not too sloped to sleep or have ****tails.
Sherry
on edit: too funny what auto edit did!
-- Edited by WestWardHo on Monday 28th of July 2014 09:02:13 AM
Just watch out for the sliders.(edible kind) That slope means if they get away, could be along chase down the hill.
-- Edited by biggaRView on Tuesday 29th of July 2014 04:57:43 AM
Your plans sound like they are working out nicely. We will definitely visit. We have in-laws and friends in Surprise and Wilhoit. We plan to be there next April. Good luck with your to-do list.
Sherry & Jesse, I hope when Cheryl's hip heals, we'll be able to strat seeing this great huge country in our BEAST (Bull and CoW).
Will definately make plans at some point to stop and meet you guys.
No idea when, but who knows....
Glad things are falling into place for you guys. As others have said you guys are truly inspirational. With all of the issues you've had to deal with starting out in this lifestyle you guys have always put a positive spin on things. We would love to see you guys again so maybe our paths will cross again this winter.
Take care and good luck!
Better timing is on your way north in early spring. It is too cold in the Cottonwood/Camp Verde area in true winter for most of us.
Hard to believe just a year and a half ago he was out on arduous searches and today long walks tire him! But he can still walk and is planning customization of lightening bolts on his electric wheelchair (his friend here has dibs on flames so he had to compromise.) He's been asked to serve on the board of a startup Veteran focused ALS organization to help them work thru the VA system and is anxious to start giving back again. He's volunteered all his adult life as and EMT and firefighter in addition to working full time.
Still waiting on final plans for house modifications so we're still living in our Trilogy in a local campground so still lovin' the life. Then we get quotes from builders for modifications and then can get moving. It's nice to be able to go to the house to do laundry. I'm trying to figure out how I could do laundry every two weeks while on the road and now it's a load every day? Guess if it's available...
He's still my hero because while his hands don't work well at all (buttons, socks, cutting food, holding fork, lifting 1/2 gal of milk from fridge, holding coffee mug) he somehow managed to get into the sliding file drawer next to fireplace and repair sliding drawer that had pulled out two weeks ago. Maybe it's because Sadie was right there "helping" him!
We're doing fine. Hope our Dreamer friends will continue to stop by. We know of two couples in late October, keep on comin'. 😄 This is a great valley to visit with lots of interest.
Sherry
Can't wait to see you guys in October, although I'm not sure we'll have time to fit everything in our schedule that you are planning, you are just giving us a reason to come back in the spring before we head north again!!
Jesse continues to amaze us with his positive attitude. You both continue to inspire us and we will come well prepped with beverages and so look forward to catching up over a few adult beverages. And we will be more than happy to play with Sadie and help wear her out for at least 30 minutes before she naps and recharges. I was just ordering prints to scrapbook and found the ones of Dale and Sadie "wrestling" over her toy, I think that puppy could easily outlast all 4 of us and still be ready to romp.
Sherry, just wanted you to know we are thinking about you and Jess and wishing you the very best! Hope to see you both again some day!
I'm so excited your new home will be picked up soon and we want to see pictures!
Sherry
I/we've learned the VA has regional offices and hospitals separately both for medical care and for benefits and we are in the one that is moving slowest. Three months to get the Aid and Attendance benefit Howard wrote about for his father and 8 weeks to get into VA Hospital for his first evaluation here. (Took only 3 days in NH!) The hospital is required for referrals for prosthetics (power wheelchair, Boyer lifts, special beds, vent systems, etc., etc.) we go tomorrow for the wheel chair eval. Then it will take about three more months to get it.
We've already rocked the boat significantly and are not above calling district or national offices and it's paying off. As my Dad used to say, "There's more than one way to skin a cat!" (Ohhh, hate that as we love cats!) Trust me, you don't want to get between care of MY and other Vet(s)!
Again, we're grateful for his wonderful health insurance as we can go outside the VA for specialist care. In fact we went to a top rated specialist in Phoenix on Friday and he may choose to get into a low risk clinical trial.
Our weather is now perfect - low 50's nights and 80-90 degree days. Great pool & sleeping weather! Jesse wants to do as much as he can as long as he can and he's still doing well in spite of somewhat rapid (to us) progression. Can still hold that beer!
Sadie is still taking obedience lessons and she is coming along. Didn't want her pulling Jesse off his feet - again.
Time to get ready to move our Trilogy to another park for a couple of months. We have decided to sell it and the truck once we're in the house.
Sherry
We are in triple digits this week in SoCal, and hating it - low last night was 76
Keep checking in
Jodee
Please continue to make the best of it and enjoy life to its fullest.
Best of luck to you and look forward to your future posts
This morning we had to move campgrounds as someone was coming into out site. We were ready early, I had everything inside packed by nine while Jesse was in the shower. Got everything disconnected outside but couldn't turn that one stupid clear connection for sewer hoses. Called a friend as our CG wasn't that friendly. In the meantime drove a block away to overflow parking to get truck that had been parked there for a month. Wouldn't start. Back to get Jesse and had my jumpers. That worked. Connected up the trailer and retracted everything. Heard a strange continuing hum. After some investigation discovered it was Banks electronic braking system locking disc brakes on trailer. In their booklet they had an emergency number. Called it and was called right back. Took our friend thru many steps and finally after pulling wires under dash and disconnecting and reconnecting it worked. Yippee!! Pulled into our new campground about 7 miles away at 1:30 PM hot and tired.
Our friends say they've never have ever heard of so many problems for anyone! We laugh about it, what else can you do?
Sherry
I think you're right and I think you're being kind by not saying "get it thru your hard head"! 😄
Sherry
Jesse now has a loaner Power wheelchair until his custom fitted one arrives. It's in the garage at the house and he's taken it for evening strolls around the neighborhood. We've ordered our Mobility Van and are awaiting VA approval on that. Then I will be able to take him, his chair (and Sadie) anywhere. A power ramp comes out the side and his power wheelchair will roll right in and lock down in the passenger space in front.
But we've had a nightmare with the regional office concerning home modifications. Our architect would submit plans, DOM's (Description Of Materials), builder's estimates and the VA would come back with questions like: Brand of paint, color, cost per gallon or for "6 ft roll under vanity with tilt mirror and touch faucet with item numbers called out" we would get questions what manufacturer on vanity, cabinets faucet, etc. After faxing literally over 100 pages to the VA with more forms/details, answers, etc. I got REALLY mad and started emailing everyone we could think of from state advocates up the line to DC and up the VA chain to the top because this is the time an honorably discharged 20 year service vet with no drug or alcohol problems should be checking off his bucket list rather than expending his limited energy and 8 hours+ a day gathering forms, filling out forms, faxing making calls, faxing more and then finding out after the fact that it wasn't good enough! I know there are folks who take advantage and commit fraud but not here. The central office at headquarters in DC has taken over his file and we think it's been approved and now awaiting funding of escrow account so building can commence in 3-4 weeks. We might be in by Thanksgiving! Jesse now calls me his Dragon Lady.
We had a terrific visit with Bill and Linda yesterday, who have mentored us through so many upgrades to say nothing of DTV 😄 and offered loving friendship as you others here have. Ruth & Dale, we are SO looking forward to seeing you soon and we have our "costumes" ready!
We have found Angels in this forum in DC and at the local VA Hospital who have offered amazing guidance and loving support. Jesse remains cheerful and unembarrased- "it's not my fault I have ALS so why worry?"
Sherry
RV-Dreamers passing thru - we would love to see you.
Wish we were already out Sherry! We'd love to see you both again, and so sorry you're going through all of this hassle. You have a strong will and that's what both of you need right now! You go girl and don't take their bureaucratic crap! We'll keep you in our prayers and tell Jesse hi and keep his great sense of humor! Take care and be strong! You'd make a great politician.....we could use a few! :)
Pam and Red
The whole "thank you for your service" platitude seems wholly inadequate when situations like this come up, and they seem to be coming up far too often.
One has to wonder how quickly they would move mountains if Jesse was one of their own.... wait a minute, Jesse IS one of their own.
Sounds like, once a case is opened, an advocate should be appointed/assigned immediately to expedite the trecherous waters of bureaucratic legalese with knowledge on what's required. Less guesswork and more "git 'er dun". Anybody's arm we can twist on your behalf?
Sherry and Jesse... your spirit, determination and grace continue to be an inspiration for us.
Affection, always...
-- Edited by biggaRView on Sunday 5th of October 2014 10:23:11 AM
Bill Joyce love "your" rocks! So true.
Red, Jesse looks forward to hearing about your Alaska adventures over a cold one.
We spent last night in the local hospital ER. Jesse had a sudden one sided piercing headache (9 on a scale of 1-10) and woke me about 11:30. Got him to the ER by 11:45 with a BP of 227/92! They immediately double dosed him with morphine and anti nausea meds via IV. No history of headaches but intermittent mild ones in last week or so. Cat scan was clear as was spinal tap. YEAH! Final guess was migraine brought on by the ALS med he started 10 days prior. We were home by 4:30. We follow up on Monday with his Neuro.
After some sleep this morning he said sincerely, "I'm so lucky, I have such a good life!" Thats my guy.
Sherry
-- Edited by WestWardHo on Sunday 5th of October 2014 09:51:15 AM
Hugs!!!
Woke up this morning realizing I had taken this thread in a political direction. I sincerely apologize to you and to our fellow dreamers. I have too much respect for this forum to be so unthinking so I went in and edited my own post.
Sherry
Bless you Sherry, so glad to see your update and that so many things appear to be falling into place! Hope you'll keep posting; even while stationery in your S&B! You have touched many lives! God be with you both, as you navigate these "new/old waters"! Regards from Oregon, LeO