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!

Friday, July 25, 2008

Joan here...Still in Winnipeg till end of August.

Thanks for all your good wishes! For those of you who were wondering where we are even living these days...

I finally got a minute or two to just jot some thoughts down. It has been a busy summer. We have had a lot of company stay over which we do really enjoy. Rick and I decided it best to stay in the city until the end of August. This will give us all more time to get ready to move into our new place. We really enjoy the city so much and love to go for evening walks and dinners together so we are making the most of it while we can!

Jake and Val can't work any harder or faster with both having a full time job as well. They haven't even had a summer themselves. It has been a sacrifice to both them and their young girls this summer not to have holidays or outings as a family. We are hoping this will change really fast once we are into the suite.

As far as Rick is doing...the disease is never going the right way. He is having problems with dropping things. Yesterday, he was trying to help put dishes in the sink and dropped a glass. For both of us it puts us in an emotional downer as soon as something happens. It once again reminds us of what lies ahead. He walks slower and slower with his cane. He has to use handrails on the few stairs that he is able to climb otherwise he would not be able to get up them.

One of the things I still am not used to is getting ready to go out. I always allow extra time but it seems like it is never enough extra time to get to where we are going. Normally if the elevator is busy we could do stairs as an alternative but we can't do that anymore. Sometimes we wait a long time for the elevator. We took the kids to a movie today. They had to take Rick in a special elevator and it was a small one so the gkids and I had to walk up the stairs on our own. We waited in our seats till they brought him up. It is getting harder to be a couple and I find that very frustrating and lonely at times. We used to hold hands all the time when walking and now his scooter is going either to fast or too slow and making it difficult to be close.

He still has regular dreams of not being able to speak. He woke up the other morning after having another one of them and started practising to moan to see if he can't speak down the road, could he at least moan or make sounds to communicate. This is so all beyond us both!