Rick and Joan here..."A good friend has passed'

We were saddened to hear tonight that our dear friend Ken Samson passed away today! We got to know Ken through the ALS Society. He has been living at the Brummit Feasby Hospice House in Winnipeg for some time now. Although Ken has not been able to speak since we got to know him his indomitable spirit, sense of humour and bravery shone threw.

This is a picture of Ken that catches that sense of courage, bravery and depth of spirit!

Our thoughts and prayers are with his wife Alice and family at this time! We will miss you Ken and you can now say "I am NOT living with ALS!".

Joan here..."My current reality"

As I tucked Rick into bed tonight my mind floated back to this picture I came across today of him and I. Floods of memories came back! We are still so in love. If someone would have told me 14 years ago that I would be caring for him full time 24/7 in this capacity I would have never believed I could ever even manage it. But here we are, 2 years later after diagnosis!....It amazes us even to this day how we love being together and how we can chit chat non stop even through all of this! We live in a bubble...a bubble of God's Grace!!!

Our night routine kinda goes like this. Joan, can you please move my left elbow just an inch or two to the left? Then can you just straighten my toes out one more time. Would you please straighten out the fingers on my right hand for me sweetheart? The list goes on and on. His toes and hands are curling up tight as the muscles die. He is totally unable to do anything at all for himself and is totally dependant on the mercy of whoever is near to him. He is totally reliant on the kindness, sensitivity, and love of others for his care. I can't even imagine how I would be if I were in his shoes.

I think what amazes me the most about my husband is his kindness and gentleness...he does not blame God in any way for any of this so he is not bitter or angry. I see the weakness and vulnerability first hand each day as he eagerly awaits for me, as I drag myself through the room , to bring him his first cup of coffee and urinal in the morning. He can no longer dial a phone or answer a phone call, type or write any longer on his own. We are just so thankful to God that he has his speech (his voice is changing daily) and his great big forgiving heart!

I spend a lot of my time crying and crying while looking at him as he sleeps and desperately tries to breath through his bipap machine. His breathing has once again gone down hill in the last couple of weeks. If only...if only...this would be a really bad dream and not our reality!

Rick and Joan here..."New ALS MB website"

Check out the new ALSMB website at http://www.alsmb.ca/!

Congratulations to the hard working teams at ALS MB and Tripwire Media for a job well done!!!

Rick here..."Shower humour!"

Okay...this broke me up!

For those of you who may not know Joan well she has a wild sense of humour! We spend a lot of our time laughing together.

She was showering me a couple of days ago which is quite a feat in itself as I am pretty much a quad at this point. Half way through the shower Joan placed the head of the hand held shower in my lap where I usually steady it while she shampoos me. My arms have deteriated to the point where I only have a bit of movement in my thumb. The shower head started to slip away from me and spray Joan. She immediately quips "Come on Rick, you have a thumb, use it!" We both broke out laughing until we almost cried. A merry heart does good like a medicine.

Moral of the story: So, just remember next time when you think you have nothing left....If you only have a thumb...use it! LOL

Rick here..."I am on the road again!"

The snow is gone (mostly) and I am finally able to get back outside again! It has been a looooooooooong winter!

Joan and I have been out for a few runs and I am learning the ins and outs of my sip and puff steering system. It is not as accurate as the old hand control but beats the "h" out of not driving at all!

I have only had one mishap...nearly hit the ditch...there is a setting where I sip three times to get the chair up to top speed then I steer it left or right by either softly sipping or softly puffing depending on which way you want to turn. Note to self---when panicking remember to sip softly not hard as that only make you go faster! Got to try out my emergency stop button and pleased to report it works great!

Please don't let the folks at HSC rehab hear about this one or they may not dial up my speed on my next visit. :) They currently have my top speed set on a slower learning mode-probably to save my life- The only thing is now Joan can walk faster than I can keep up with and is bored with waiting for me to catch up! When my top speed is restored I can leave her in the dust. lol!

Also a note to all my Whitemouth friends...am no longer able to return the friendly waves that I get as the darn arms don't lift anymore! Don't want you to think I am all stuck up or anything!
I can still nod and smile but you will have to slow down to catch it!

Joan here..."Tips...Boomerang Pillow & Nose Pad for Bipap & Itchy scalp"

Boomerang Pillow: Found this little gem at Walmart for $15.00. It is a boomerang shaped pillow- one piece- even comes with the pillowcase. Sears has it on sale for 24.99 right now reg $50.00. Great for holding up Rick head as his head keeps falling sideways while in bed. This pillow can be used to support back and between the legs all at the same time by repositioning it. Multi-purpose for sure!

Sore nose from Bipap mask: Our friends from the Sleep Disorder Centre in Winnipeg suggested we try the Sleep Comfort Care Gel Pad for the nose bridge when using the bi-pap machine. What a nose saver that turned out to be. It is made out of gel! Seals a great seal and prevents air loss as well as prevents skin breakdown! Rick had developed a horrible pressure sore on the bridge of his nose that we could not clear up. It had gotten to the point where every breath caused him such pain. The combination of the gel pad and the Watkins Salve did the job right away.

Cracked and itchy skin: We also discovered good old fashioned "Watkins Petro Carbo Salve" works miracles on the healing of the sore Rick had developed on his nose where the Bi-pap mask sits. It also works wonders on the cracked and dry patches on his skin. This is a very old fashioned remedy. Rick's dad remembers having it on the farm when he was a kid.

Itchy Scalp: Rick had developed an incredible itchy scalp and huge flakes of dandruff. After scrambling for help on the Internet I came across an old fashioned cure to get rid of all that extra shampoo and hair conditioner residue that had built up. It is Apple cider vinegar but I used Red Wine Vinegar and it worked great! Rick's hair went from greasy to really fluffy and no more itching! I have had to use this method a couple of times. I took and put some in a bowl and dabbed on the vinegar being careful not to let any run down his face. Then let it dry overnight! I then rinsed his hair out the next morning! The only downside is that Rick said" he smelled like a french fry!!!" Yum...Yum!!!! :)

What worked even better is T/Gel therapeutic shampoo by Neutrogena which we purchased at the drug store. Has a strong smell but very very effective.

Rick and Joan here..."Happy St. Patrick's Day!"

"Happy St. Patrick's Day!"

May you live all the days of your life.

We are heading out to enjoy a nice warm walk in the sun. May even convince Rick to wear his get up just for a laugh! :) He is feeling much better now.

We are believer's in God!!!! Despite what we have been told!!!

My husband is very sick right now. His mom and dad, bless their souls, are here helping me this weekend. They are in their 80's and truly love their oldest son. He has had a fever and is very nauseous and ill. Please do pray for him.

We are struggling just to get through a day never mind other things that are thrown our way. My beloved husband IS a man of God. His way is very non religious and does not preach at people. He lives it. He is kind, understanding and never lets others know anything much about the people who truly have said and done wicked and evil things about him. He trusts that God will show them and that he doesn't have to justify himself.

Our home is a home of peace and has the presence of God no matter what we have been told. Please do pray for Rick to be healed.

Rick here..."Chess champion in the making"

Our 7 year old granddaughter decided that it was time for grandpa to teach her how to play chess. She has taken it upon herself to check in with me each day for our daily chess lesson.

It is pretty interesting since I can't move my hands or arms and have to talk her through not only how the pieces move from her end but then she has to move mine as well.

She is a quick study and is already looking a move or two ahead...I may have created a monster. She certainly has the killer instinct...just working on the patience aspect of the game now!

Rick and Joan here..."Looking for Raffle Items"

Hi Everyone,
We are just getting the details in line for the 3rd Annual ALS Whitemouth Walk. This year we are looking at adding a raffle draw to the event. All proceeds will go to the ALS Society of MB.

So far as prizes we have a two night stay at Brerton Lake Resort (includes sauna & hot tub in the cabin). The cabin is also wheelchair accessible. They also have just added a very nice restaurant just seconds away.

We also have some items from the Whiteshell Chair Company. Just in the process of comfirming exactly what. These folks make all kinds of chairs, bar stools and etc. and ship them across Canada.

We are looking for some more items as prizes for the draw. So.................if you can donate an item to the draw or know of someone who would....please let us know as soon as possible.
Please email us at rfewster at mts.net if you can help asap. Thanks!

We are really hoping to make this year's walk the biggest yet! Once again Beausejour school will be joining in on the fun also. Last year we had over 500 students and others on the walk in our little town of 300 people!!!! Amazing!!!!