Rick here..."The good and the bad"

We always dread going in for the ALS Clinic day...not because of the people...they are truly amazing and helpful!!!! We see communication , nutritional, pulmonary, occupational, physio specialits, social workers and our special Dr. Casey. Sadly though it usually results in us having to face once again the inevitable decline in ability and function. Not like we don't know it is happening but it just makes it more official and in my face for a reality check.

The bad news is...my FVC (breathing capacity) has declined from 46% of expected normal capacity in September to 28% now. The bottom line is that ALS is killing the muscles that enable me to breath. When I started out at diagnosis I was actually at 125% of expected normal capacity...well above average! At least I like to think I was above average!!! (Joan put that in) :)

They tell me that the numbers aren't everything....which is true....but when it is your body that can't get the breath like it used to...it is hard to convince otherwise. I am faithful using my bipap and LVR and believe it has truly helped me so far! Mercifully, I have avoided any chest colds (mostly because no germ has the nerve to enter the "Clorox" zone that Joan has created around me!!! )Thanks sweetheart!!!

The good news...is that the tube feeding is doing its job and my weight loss has stabilized...I sit at 141 lbs right now. Down from 178 lbs at diagnosis but at least stable.

At this point-when I look that tiger in the eye-it is all about how long the breathing will hold out. That basically tells you how long you will last unless something unexpected gets you first. But hey....let us believe in miracles!!!!

Rick and Joan here..."Sip and Puff"

A couple of years ago if someone told me I would have a "sip and puff", I would have thought it meant a cold beer and a good cigar!!! Little did I know this would later mean in my life....

My wheelchair is being set up in a couple of weeks with a "sip and puff" system that will allow me to drive by blowing or sucking a straw type tube in front of me. Thank God for technology and people driven to help others in need!!!! Wow!!! Thanks to the gang at the HSC Engineering Rehab Dept. for brain storming and coming up with solutions to my hands not being able to operate my wheelchair or tv remote, etc.

They will also be setting up a sip and puff system to enable me to raise and lower my hospital bed, change tv channels, operate the phone and call for help!

The other big thing is that I got to test a head mouse along with a voice activated software that will make it possible for me to be able to communicate when I can no longer type and speak.

It looks pretty cool but will be no where near as efficient as my current system...lol (Joan typing while I speak)!
Thanks to the gang at the HSC Engineering Rehab Dept. for brain storming and coming up with solutions to my hands not being able to operate my wheelchair or tv remote, etc.

Who would have thought that our own province has such wonderful and amazing people in places. From the ALS Society, the ALS clinic at the Deer Lodge Hopsital , Health Science Centre, Home care, Palliative Care, Engineering and Rehab, Whitemouth Handi Transit, and on and on.

Special thanks to our friend Doug at www.tripwiremedia.com who came and filmed and document this journey once again!

Rick and Joan here..."ALS boys club"

Thanks to all the staff at the Brummit Feasby House (ALS Hospice House). As usual, you folks made our three days in Wpg. as easy as possible! Thanks for all your tips and help aids that will make our days easier! Oh yeah...and especially thanks for the laughs as well!!!!

Here are a couple of pics of the guys, Brian M, Ken S, Brian C, and myself watching a football game together and also one of Rick and Brian using their LVR's (Lung Volume Recruitment)units with Patrick assisting. We have made a lot of very special friends through this journey! There were some awesome gals there also just not in the pic! Thanks Judy, Lori, Bebe, Trish, and we apologize but can't remember the other lady's name.

Rick and Joan here..."CBS Special tomorrow night on ALS!"

Hi everyone……if you can check out this special Thursday…tomorrow night on CBS. You’ll have to look up the channel for MTS, Shaw but it is on channel 282 on Bell express view.
Live for the Moment – CBS Special January 28th, 8/7c

LOS ANGELES, Jan. 15 (UPI) -- "Survivor" host Jeff Probst is set to star in a U.S. reality special about a man with Lou Gehrig's disease trying to live his life to the fullest, CBS said.
The one-hour program "Live for the Moment" is to be broadcast Jan. 28 on the network.
Probst takes Roger Childs, a family man diagnosed with amyotrophic lateral sclerosis, "on a series of adventures, creating family memories and sharing powerful life lessons," CBS said in a news release. "The inspirational way in which Roger lives his life just might change the way viewers live theirs."
"There is nothing like this on television right now: great adventure and powerful life lessons. I think we are all yearning for something more, something that will inspire," Probst said. "Future episodes might include someone who survived a plane crash or maybe a professional athlete who suffered a life-changing injury."
ALS is a fatal neurodegenerative disease affecting motor nerves and voluntary muscles.

Rick and Joan here..."Yeah!!!Another addition to our care team!"

We were so delighted to have our yourngest son spend the night here. He slept on the sofa near his dad and I got to sleep upstairs and not have to worry about Rick's care.

Daniel is officially added to his dad's care team as he can now, do the tube feeding, hoyer lift, operate the bipap, execute the transfer of his father to the wheelchair and commode chair. He aided in the showering, enema administrating, feeding, range of motion exercises (which I might add...he is a natural at) dressing, urnial administration and personal care processes ie shaving, brushing teeth and etc.

It is so hard to believe our youngest son is a "man" and no longer our "little" boy!

Joan here..."Rick is sleeping January away!"

While I type this Rick is sound asleep. This morning's routine has been very hard on him. We have been trying to adhere to the three day bowel regime that is now in place. He spends more and more time on the bipap. We are heading into Wpg on Sunday and will be back Wednesday for a stint at the ALS Clinic for another assessment and the Health Science Centre "communication dept" for some more communication assistive equipment.

Just the thought of having to pack everything up and even to remember everything he will need for the three day excursion is so very stressful for me. The ride into Wpg in itself will be a real stressful time for Rick. Physcially it is very hard for him to bounce around in the vehichle. He has not been out of the house since the beginning of December. Emotionally, is another thing, just for him to have to deal with his helplessness physcially and to now be presented with more equipment that will be necessary for him. Staring the tiger in the eye once again!

Rick is aware that it is time to get some equipment in place to ensure that he can communicate as long as he can with us all. As I have mentioned before I am presently his "voice activated" equipment when it comes to typing. He really struggles just to scribble a crude look a like of his signature. We are nearing his two year date from diagnosis and that in itself is another date to deal with.

I have become the official urinal and enema Queen. I even get to aim and wipe for him. Not a job that I ever thought I would be adding to my portfolio. :)

I was going through a lot of pics last night and enjoying the memories of them. I put together a file of misc pics on our screen saver so Rick could take a glance at them during the course of the day. We both enjoy reliving our special moments together!

One of my many many favorites that I have is the pic of Rick and I dancing together. It jogs many memories of he and I dancing together alone in our apartment, house, backyard, down town TO on one of the busiest street corners and yes even one day he grabbed my hand and started dancing with me in the middle of St. Vital Shopping Centre! It was so romantic and Rick was never one bit shy in doing this...that always amazed me!

It is so interesting and fascinating how just one picture can evoke so many delicious memories! I have coated my heart with those precious memories and moments. Now back to this moment, my reality, where I will go and take care of a hundred little things to make Rick's life just a bit more comfortable for him if possible. Today is a new day with it's own special memories that I will cherish forever!

Joan here..."Happy Birthday to Rick!"

Here are some pics....We are so grateful to have another birthday together! We are also so thankful to all those who made a point of coming over, phoning and emailing their birthday wishes to Rick. You all made it a very special birthday for him!!!

Joan and Rick here..."In response to K's comment"

We are very intrigued with the "Smart Nav" reference you so kindly mentioned. We are very interested in checking out this program. We would like to email you directly about it. Please contact us through our personal email rfewster@mts.net. Wow!...11 years...way to go K!!!

Joan here..."A New Year and learning New things!"

Happy New Year to everyone!

This is a pic of Rick laying in bed and using his new laptop that our son gave him. As you can see Rick is laying there with his bi-pap on, hospital table that can tilt and hold the laptop on, tv remote on one side and telephone connected to an ear set on the other side!

It is very difficult for Rick to type anymore so....Rick came across a program that was developed in England and it is a FREE one that allows you to type on the computer by only moving the mouse. It is called "Dasher". Once you learn the program it can be adapted to a head mouse or even Eye Gaze. He says his brain hurts right now trying to get it all figured out. Thanks to the developers of "Dasher" who have made it possible for handicapped individuals to use their software at no cost! http://www.inference.phy.cam.ac.uk/dasher/

Joan here...."Basket storage for the foot of the hospital bed"

Another little helpful tip that was discovered out of necessity! I kept running around looking for the rubber gloves, Kleenex box, the wipes, etc. Every counter around me has so much stuff on them. These items I really needed handy at all times. I moaned to Jeanette one of our homecare ladies how I needed something to solve this problem. She just looked at me and said "a basket or something hanging at the foot of the bed would be a good use of the space".

Took me half a second to see the wisdom in that idea and and off I went to get an over the door clothes hanger holder and a plastic basket that I had kicking around in the garage. Cost $2.00. May not be the prettiest looking but works like a charm!!!! Yeah...Jeannette!!!