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, March 28, 2009

Joan here...THE bed is here!


Jake and Val set up Rick's bed for us. The equipment came in some pretty large cardboard boxes and were extremely heavy.
The bed came at a very good time even though we don't like the idea of it! Anything that helps making Rick's mobility and comfort better is becoming a real God send to us!

We did our usual kick, kick and kick thing and then proceeded to be very thankful for all the people who deligently worked to get the bed out to us quickly and to Jake and Val for the setting up of the equipment.

Rick needs help to pull himself up in the bed so the trapeze bar was a really big help to him.
It was a very emotionally trying day as we all went about to set up everything. The little girls were so encouraging despite how we were feeling inside. Tia and Katie hopped up and wanted to sit by grandpa in his new bed. Tia said she really liked the bed better than the chair because now she could sit close to grandpa again! Katie decided that the hospital tray would make it much easier to play cards and chess now with grandpa.

Rick and I did manage to snuggle in the bed last night for the most part! We are such snugglers that we were determined not to let equipment seperate us.

Friday, March 20, 2009

Rick and Joan here..."my hospital bed draweth nigh!"

Yes, we caught "it"! We finally are up and about again after a horrible week of this wicked flu that is going around. We are not completely back up to speed but getting there at last! So you can imagine Joan...sick and all...trying to help Rick sick and all! That was not a pretty pic! We did have a lot of talking time as we were laying there side by side through it all!

Just found out today that my hospital bed drawth nigh and will arrive early next week. Another milestone to face for both Joan and I. It is getting increasingly hard for me to turn over and get out of bed by myself. My feet need propping up at night so they don't fall forward and cramp up. To turn over I have to grab a pj leg. Then lift my leg and flip it over. Joan says it is actually flopping it over! (Another thing I had to overcome...wearing pj's...those were for old men...oh yeah...I forgot...I am one!!!!.). The bed will make things so much easier for me physically.

Joan has tried everything possible to keep our place as nonclinical looking as possible but it is getting pretty tough to do so now. The hospital bed will have to be set up in the middle of our main living area as we need access to it with the hoyer lift etc. Sooooo...we have done another of our many furniture shuffles to make room. Jake hung our tv up so we won't use the badly needed floor space for it.

Joan here...Ladies, you can relate to this one...how do you make a hoyer lift and sling not so obvious in the middle of your living area? and how do you make a commode chair blend into your bath decor? I do not want Rick to feel like he is living in a hospital despite all the equipment!

Rick here again...Joan and I will just have to get creative as to how to snuggle in a single hospital bed...hmm...a few ideas come to mind. :)

We had an incredible wonderful time last weekend with mom and dad. Jake took us all on a tour of his workplace. Fascinating! My folks spent the night and we enjoyed a bud, spud and steak supper at our local watering hole.

The weekend before that we had all of our 5 kids and the nine grand kids at one point or another over the weekend come over. What a fantastic time. We do power wheel chair rides and can't wait for the snow to go so I can hit the road with them! Come on Spring!

PS...Joan here....and yes...the bed gets a few extra hard kicks!!! Might have to put on my steel toed boots for that one!!!

Wednesday, March 4, 2009

Joan here...I have been Hoyered!


The Hoyer lift has arrived. Rick and I figured we would post a pic of the lift as most of us don't even know what it is. (Thankfully!)

The Hoyer is a portable (kind of) hydraulic lift that allows someone to be picked up in a fabric sling and lifted up from a wheel chair, bed, or worst case scenario...the floor! Rick says it is kind of like an engine hoist.

Today I was trained to use it. Hmmmm...another piece of equipment that I have had to learn about!!! The best way to understand how it works is to be lifted in it. I was hoyered!!!! As I sat in the sling I started to cry. This is all so very hard. Thanks Diane and Louise for all your help, patience and compassion!

When the lift was delivered...I did my usual kick the thing once. Then looked up to heaven and thanked God for the technology that is in place to make our life easier on the day to day basis.

The MB Health Care System may have its own share of problems but they have been an incredible blessing to us. We don't know what we would have done without the equipment that they have also made available along with the ALS Society.

Rick has progressed to the point now where he is finding it very very difficult to pull himself up and get out of bed. The transferring from bed to chair, chair to shower chair, commode, and etc. is becomming increasingly more difficult for him. Hence the need for the Hoyer Lift!

Much to our frustration and sadness, the next item down the road shortly will be the hospital bed. We just have to say the word and one will be here in a couple of weeks. You can only imagine how we feel about that one! :( Especially as we are such notorious snugglers!!! The hospital beds don't come in double sizes!!!

Today, our thoughts are especially with Uncle Keith and family. It was Aunt Christine's funeral today.