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!

Thursday, August 26, 2010

Joan here..."Day No. 13"


It has been many days since I have actually been alone in our suite. The very first time that I was alone, which was a couple of days ago, all the flood gates opened up and I just continually started talking and crying to my Ricki. It's like I am praying to God one minute and then to Rick the other. Then I think..."Well Rick is with God right now"....so I don't get too hard on myself on the dynamics of that.

I have started the sorting of the equipment with our occupational therapist Louise as of yesterday. She has been an absolute wonder in helping us correctly fit Rick to his equipment, ordering the right equipment and helping us in every other way imaginable. It is so bittersweet.

I am not crying as much but I do have times when I think about Rick and everything gets stirred up. When working with any of his equipment after awhile all of a sudden I feel an absolute energy drain. I get exhausted and have to stop. I think it is the emotion of grief or sorrow that is wanting my attention. So I stop and just rest for a bit and allow myself to think about the memories attached to that equipment.

Yesterday, Louise had to strip the power wheel chair as 4 different organizations had parts on it. As she stripped the parts all the memories came flooding in. The memory of the first day they unloaded the big, black, heavy, cold chair off the semi in Dec. 2008. I was horrified when I first saw it as Rick had just been in the manual wheel chair where he could push himself around and now this big black ugly monster was in front of us! It meant our new reality would be that he would for sure now never ever walk again. I was so angry at the time that I gave that chair an extra kick as was my ritual to each piece of new equipment when it arrived.

Low and behold...within a week or so after getting the chair...Rick was sitting in the chair and appreciating the fact he had power control and not having to expend energy to push himself. It was so much easier for him once he started using it...it was so fancy..it had a head rest, it could tilt and spin around and go fast! Before long we both embraced the freedom that it gave him. From that time on the memories we shared while he sat or napped in that chair became good ones. So I can't even imagine how I will feel when they pick it up on Friday. That chair was like a big huge favorite lounger that most of us have in our living rooms and hard to let go because of all the warm fuzzy comfort memories attached to it.

I still have emails, condolences, and cards coming in. I look forward to reading them each day as I have my ritual morning coffee. It is so hard to believe that my Rick is not here to share the events of the past days and plan our days together. I tell myself he is having coffee with me in the spirit.

When driving down the long barren road from Wpg to Elma yesterday I noticed how the trees solidly lined both the sides of the never ending highway that lay before me. You couldn't see anything but trees when you looked to the left or right. All you could see is the long winding road with no visible end in sight. That is my life right now. I have family and friends on either side of me and I am on this new road and I don't have any idea what lies ahead for me but I am on it and moving ahead. Not moving fast... but slowly moving in my being!