Welcome

This blog is about a new walk with my husband Rick & I since he was diagnosed with ALS (Amyotrophic Lateral Sclerosis) or Lou Gehrig's Disease or MND (Motor Neuron Disease) on February 1, 2008.

This blog was started as a way to keep our family and friends and anyone else interested in our battle with ALS updated.
So as you read this blog please keep us in your hearts and prayers.

The blog starts from the most current to the oldest entry. Rick has started to blog now also as of April 1,2008 so this site has become officially "our blog".

My dearest husband Rick passed away on August 13, 2010,
2 1/2 yrs after diagnosis. Now I have to learn how to walk in the courage, strength and bravery that he did in fighting this disease. He promised me he would be waiting for me in eternity on a park bench. Together Forever!

Saturday, July 18, 2009

Joan here..."We found a spot by the lake"

We found a cabin by a lake where we can actually go and stay for awhile. We just wanted some normal summer fun in our life. We never thought we would ever be able to go away alone again never mind even thinking of getting into a cabin that would work for Rick's needs. It has a wheel chair ramp, roll in shower (which is usually nearly impossible to find), wide door ways and access to a store/restaurant right next door. So within 48 hours of finding the place we were packed and I mean packed up! We had the van full and Jake had his truck full!
I missed taking a photo of Jake's truck leaving with all the equipment in it! What a sight! I know I am a heavy packer but wow...this really took the cake! It was actually quite comical the whole thing once I had gotten over the stress of getting everything ready to go. Pulling up to the cabin must of looked hilarious...first all my suitcases, boxes full of food and etc. then in comes the bed, the lift, the commode chair, bed table....we had it all!!!

The owners and staff were awesome with us! They had the regular bed taken out and set up all ours. We were so amazed! Where is this heaven of a place? Brereton Lake.

The real bonus besides getting away together alone for me was the enjoyment of a hot tub and sauna time each day right in the place! I desperately tried to get Rick as close as I could to the hot tub. The best I could do was get his feet to actually dip in! He enjoyed even doing just that!

We had a special visit from Elvis aka Nick who comes with hoyer lift experience. Who would have thought! I had two days break while he did all the heavy stuff!
We are planning on heading out there as much as possible this summer while Rick can still manage it.



Sunday, July 5, 2009

Joan here..."Rick with feet planted on the floor"


Rick was saying one day how he would like to sit and have his feet on the floor. I told him I could fix that really quick! So I put him in the lift and there he sat with his feet planted on the floor. He said it felt so good to do that again!
He usually dangles in mid air when in the sling. So now each day we take time for him to be able to do that. He has his arm dangling out of the sling out of choice for the moment as he leans back and enjoys his glass of wine and feet on the floor! That brought on a smile for the day!!!
The lift in the van needed some adjusting. Jake and his buddies helped him. Jake installed a stand alone battery for just the lift itself. Now I don't have to run the van to use the lift. He rewired all those corroded wires.

While they were out there I was dying to find out if the canopy on the side of the van actually worked! So the guys got it out and up! It will give Rick shade when outside of the van.
We are so grateful for all the numerous help all our kids have given us this past year! Because we live right here with Jake he usually gets the first call for help!

This past year the Whitemouth School posted some jobs for their students and each student had to apply for a position. Tia and her friend Angela were picked to visit Rick throughout the year.
During the course of their weekly visits the girls learned to play chess, learned some food nutrition and how to count calories for Rick's daily food intake, did some weeding in the flower bed as that was something Rick would have done, ran uptown with Rick to do errands, wiped down his wheelchair, played wii, and had the home care lady, Carol, teach them about range of motion exercises. She had them put on rubber gloves and did the toe wiggling one just to get a feel for the process. They were such great girls!!!

Friday, July 3, 2009

Joan here... A few more pics



We are into "party mode"!!!! I decorated the van as we cannot get into many houses...so........I figure you got to come to us!!!!!
Rick can't do alot of things thes days...but we are still doing!!!!






We are having trouble downloading right now....but here goes....this is the storm that took our gazebo away!!!!! Rick needs it because of the misquitos who love eating his ankles......we were so diappointed..as we were at a wonderful wedding and came home to no gazebo!!!!

Joan here...more pics...


This is the van looking to the back! I decided to decorate the van as Rick cannot always enter people's houses! It is a "Hawaii" theme a we always wanted to go there.....My dad said when he went it was the closest thing to Heaven!

It's me....misc pics



This is Rick doing his morning "thing". Shaver, toothbrush, commode chair and the works!

I hoyer him out of bed and then into the commode and then into his motorized chair so he can do his "thing".