Rick here..."Body, Soul and Spirit update"

This is where I am at right now in my body... (Warning...graphic content ahead!)
We are trying to make things more "shi**y". lol! Constipation has become a real problem as ALS has weakened the necessary muscles. This is one of those things that you take so for granted until it is not working right. I have had a few very difficult days in the last couple of weeks. I am regularly injected in my feeding tube with APO-Lactulose to kick it all along. Never mind the cups of prune juice. Thankfully, I actually like the stuff! Despite all this help we have had to resort to good old...oh no!!!!...suppositories! Guess who gets to administer them???? Thanks sweetheart!!!

My arms and hands are weakening at a frightening rate! I can't even lift the blanket to get my hands from underneath it. We are in the process of setting up an appointment with the HSC to start working on an assistive communication system as typing has become so terribly difficult! Thankfully, my voice is still very audible and clear. I do have cracking and hoarsness at times.

My breathing continues to decline but the bipap machine has made such a big difference. I not only use it all night but am trying to get in as much day time as I can with it also.

When I am hoyered into my wheelchair my butt (what is left of it) pancakes out really bad so placing me comfortably in the wheelchair has become more of a challenge.

I am not in a great deal of pain to speak of but I am constantly uncomfortable, sometimes almost to the point of tears. You can not imagine the torture of cramping up, and only needing to move your foot a half inch to get relief but not being able to do it yourself. Never mind the endless times I need to scratch and can't myself.

The feeding tube is working out really well. Joan, Val, Mom and Dad have easily mastered the whole procedure. A plus to the tube is that it makes taking bad tasting medicine a breeze!

This is where I am at right now in my soul (mind, will and emotions)...
I think one of the most difficult parts of this whole thing is the incredible vulnerability that I experience every moment of every day. I depend on Joan and our care team for my every physical need, for my comfort, and for my well being. I had a particularly hard time last week when we were dealing with my first time with the constipation problem.

I found myself at one point hanging in the hoyer sling with a potty beneath me and poor Joan standing by wiping and wiping as I barely made progress. Just enough to need cleaning each time but not enough to bring relief. I watched my sweetheart selflessly up to her elbows in you know what trying to keep me comfortable and clean and I just lost it! I started to cry from the depths of my soul. The helplessness I felt and the burden I created for her just overwhelmed me! My sweetheart cradled my head in her arms and assured me that it was alright. That no matter how it seemed right now I was still her "same old Ricki". She knew that not being able to wipe my own butt had been one of my major fears. Joan then came to my rescue with a couple of her humorous comments that changed my tears to laughter! She said "So this is what it means for better or worse?" I assured her that it had been written in the fine print!

Dealing with ALS seems to produce either tears or laughter...there is not much in between!

This is where I am at right now in my spirit...
Despite my circumstances I am experiencing the "peace that passes all understanding". I know with all of my heart that God is not the author of all of this. HE is there to take me through it. We are so thankful for the prayers from all of you. We have experienced amazing love, care and support from all avenues that we have been in contact with in regards to my care. Your prayers are working! As my body continues to fade I am becoming more aware of the strength of my inner man. I guess you can sum it up though this way as I have said many times before...I have no doubt about where I am going when I leave this body...I just don't want to go now!!!!!

My only sorrow is facing the separation from my sweetheart and other loved ones way before my time! At times this seems too much to bare! There are lots of tears in the middle of the night about this. My uncle Keith shared something with us awhile back. He said "Great grief is the price you pay for great love!" I have great grief! That is when I throw myself on HIS grace to take me through this valley!

PS...Just for those who are thinking...how can Rick type this??? He is not.....Joan is!!!!!