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!

Monday, May 12, 2008

Joan Here...The Mall Crawl

Well, we finally did it! Put Rick into the wheelchair for our first official trip to the mall. Talk about an eye opener!!! Two of our little grand daughters went along for the trip.

Try getting the wheel chair maneuvered in the elevator plus two kids plus do all that before the door closes...All I can say is poor Rick...he spent his time staring straight ahead at the elevator door with his back to us all. There wasn't enough time or room to turn the chair around before we were ready to get out.

As I pushed the wheelchair down the sidewalk I soon discovered some of the obstacles for a chair that we don't notice when just walking. My first discovery was the crack and unevenness of the sidewalk where I hit it straight on...and yeah...Rick almost went flying out again as I came to a dead stop hitting the raised part of the crack!!! After that I had to keep looking ahead for them. Next was looking for a sloping end of the sidewalk so I could change sidewalks.

When crossing the cross walk all Rick said he could see were the headlights of the cars staring straight at him. Just a bit scary I would think. Once we got to the mall, the gkids wanted to ride the escalator of course. So, I ended up parking grandpa at the end of the stairs and I rode up and down with the girls while he watched the fun.

The mall has three stories so I soon discovered the need for knowing where the elevators were located. Things we just don't usually even think about. At least I never did before. As I pushed Rick around in the chair I began feeling sadder and sadder and more tired as we went. I emotionally tanked as I realized that this is our normal now when we go to the mall not just a trial run here. Rick does not have the strength to walk from our apartment and through the mall any longer even with the help of his cane. Both he and I experienced a real eye opening time again.

The little girls were oblivious to our sadness and emotional time as they ran to and fro enjoying all the wonderful things the mall had to offer. One of the girls was pushing Rick. They squealed with glee as they spotted the custom jewellery shop and asked it they could go and check it out. We agreed wholeheartedly! In a split second off then went running into the shop. Meanwhile leaving poor grandpa sitting in his chair in the middle of the mall outside of the shop abandoned. Rick and I started laughing as they were so excited to shop that they forgot about him. I kept teasing him that it was a good thing I was there to pick up the slack! lol

Another revelation was trying to maneuver the chair in the food court full of people. Then Rick sitting at chair height trying to see the menu etc. He said he felt like a little kid...always looking upwards. And having to reach up to counter height to pay the cashier.

I thought I had our time all figured out and even had left extra time to get back to the apartment for my next appointment. As hard as I tried to move things along I kept meeting new obstacles in the process that I had not even thought about. The little girls were very helpful and trying desperately to help us along.

We ended up coming back with me pushing the chair as fast as I could manage and Rick loaded up like a pack mule with "stuff" on his lap, "stuff" hanging from the handles of the chair. It really looked quite the site that is for sure.

I can say I truly learned things the hard way on Saturday's excursion. By the time I got to my hair appointment, a good half hour late, I sat in the chair and basically had an emotional outburst. My poor hairdresser! I was emotionally and physically exhausted at this point.

All of us did survive and I know this is only one small little bitty episode in many to come. Rick keeps telling me soon this will all be the "good old days"!