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!

Tuesday, November 10, 2009

Rick and Joan here..."We are home!!!!"











A huge thank you to all our new friends on the 6th floor (GH 6) at the Health Science Centre Hospital. Everyone there went above and beyond to help us through a very difficult and emotional time!!! Thanks so much for all your kindnesses, care and professionalism. We felt like welcomed guests to a 5* hotel... Special thanks to our Dr. Janice...You are ALL the best!!!!

Rick went into the hospital with an "inny" and came out with an "inny and an outie!" I have told him he was always so special!!! lol The feeding tube was placed about 6" above his navel. It allows him to eat both by his mouth and have supplement feedings through the tube. He won't be so tired having to chew all his food now. We are hoping that he will be able to gain some weight now!
We were in for 5 days. A huge thank you also to our families for their visits, phone calls, support, flowers, cards and special drawings by our grandchildren! Thanks Val for spending a night standing guard over Rick while I had a long needed sleep in a real bed! My sis and husband arranged for a wonderful massage for me also. It felt so great after having slept in a lazy boy for 4 nights by Rick's bed. We came home today packed with some homemade soup and food mom put together for us also.

The "Peg" tube (Percutaneous Endoscopic Gastrostomy) that was installed allows Rick to get his nutrition by liquid supplement while he can still eat only the foods that he really wants to eat!!! ie...meat!!! NO more salads if he doesn't want to eat it!!! lol
Yes, for those of you who are wondering....once again....I did the traditional kick the feeding pole thingy...wishing we would never have to need such a thing....but then proceeded to get it set up to do Rick's supplement feeding for the first time at home! ( as noted in our previous blogs... A traditional thing I have done since the very beginning was...to kick the new piece of equipement but then embracing it's ability to make Rick's life easier!"
I spent time in the hospital learning to do the "peg feedings" and I got taught in cough assist techniques. The rest of the time I spent just taking care of my man. They talk about some women being "high maintenance women" but yikes...I am married to a "high maintenance man!!!" As I type this he is being fed for the first time here by the "peg".