Rick and Joan here..."Beausejour Early Years School"

Thanks Martin for getting us to BEYS safely and on time!

We had a wonderful time once again with the students and staff this afternoon!

We are always still amazed at how wonderful the students welcome us!

We showed the two new dvd's on ALS and kids sat quiet as mice until they were over then burst into applause when they were done. It really brought tears to our eyes! About 2/3 rds of the kids had been there last year for our presentation and you could tell they were affected by the way the illness has progressed. We had a very long question and answer period afterwards and again we were amazed at what insightful and pertinent questions the students asked.

After the presentation was over the students formed a long line and filed by Joan and I to say hi and and to give me a high five! Many offered words of encouragement, care and thanking us for coming!

Thanks so much to the teachers, staff and students who made a way for us to come and visit your school once again this year!

Joan here..." ALS Educational & Sponsorship Video links"

The ALS Educational Video and Sponsorhip Video that Rick and I happen to be a part of is now available on line on the ALS Manitoba Website.

http://alsmb.ca/index.php?page=default_templates (18 min video)

http://alsmb.ca/index.php?page=support (3 min video)

Special thanks for your kind note Carrie from TN. Rick and I both have enjoyed getting feedback from those of you who have been reading our blog. In these videos you can see first hand how we go about some of our daily routine in caring for Rick. Hope this gives you a bit more information to help you Carrie in the wonderful work you are doing with your ALS patients. If you personally would like to contact us please email us at rfewster@mts.net

Rick and Joan here..."Little Cash has arrived!"

I just started to cry this morning when Jenn called to tell Rick and I that our 10th Grandchild was born today! He weighed in at 7 lbs 14 oz, 20" long born at 8:33 am this morning! We now have 5 grandgirls and 5 grandsons and 2 more on the way! Wow!!!!

It is so nice to have good news!!!! and this sure was great news!!! We officially have 2 quiver fulls of grandchildren!!!

As a bonus I got to spend all afternoon at the hospital with Cash's mom and his two big sisters and son-in-law as well! He is a very peaceful baby! It was so wonderful to hold him! I took lots of pics and film to bring back to Rick so he could enjoy Cash as well!

Joan here..."A few links and updates on Rick"

http://www.alsindependence.com/Two%20Great%20Walks%20%20for%20ALS.pdf

http://alsmb.ca/uploads/Pdfs/Tia%20%20Katies%20Garage%20Sale.pdf

These links refer to the latest fundraising articles written on Tia & Katie's Garage Sale, Whitemouth & Reynolds School Walk for ALS.

Update on how Rick is doing health wise.
He is on comfort care. He is officially taking medication that tricks the brain into thinking it is getting enough air so he can relax especially when we are going to move him, get him dressed, showered or fed. He is on the bipap all day except to eat and shower. Yesterday, was our first day using the medication and he couldn't believe how it relaxed his breathing so he could eat and shower without a great struggle.

We have been enjoying the really warm weather.
His skin seems to be so sensitive to the sun and turns red really quick. We are not sure if it is just a reaction to possibly the quinine he takes for cramping or not.
Just driving out on the yard is so bumpy and jarring for him. The sip and puff doesn't work for him on uneven surfaces and with his bipap on it is a bit too much for him so I am the one who drives the wheelchair for him.

We are trying to soak in as much of the sun rays as possible. He sat on the deck while I worked with some flowers and cutting down last years old growth on the rose bushes. It was something he and I always loved doing together. I was so happy that he took some enjoyment in just the newness of the planting season. I like the finished product but he always enjoyed the nurturing of the plants. So he kept me hopping with instructions how to do things the right way. It just must be so incredibly hard for him to watch me struggling to do things he so enjoyed doing! Now, he just sits in his chair trying to stay in the shade and away from all flying creatures! Now that is going to be an interesting task....keeping the bugs away from him! Especially living in MB!

Rick and Joan here..."Whitemouth and Reynolds Schools Walk"

Whitemouth School Walk Friday May 14th.... Beautiful sunny Manitoba Day!!!! Once again we don't show the pics of the students...there were alot of them!!!!

Thanks so much to all the students, staff, family and friends, Lions Club, our homecare workers, Whitemouth for your generosity and participation in this years walk! Special thanks to our dear Uncle Keith - Calgary, Bill and Shirley Pipke - Chattham for coming so far to join us in this event!

Together we were able to raise approx. 10,000.00 for the ALS Society, which means people like me get to receive equipment and help in dealing with this terrible disease. Never mind the research that will happen to try and find a cure!!!

Thanks to all the people who bought and sold the raffle tickets. The lucky winners were....Del Fewster ( wow...a cousin), Mary Ash (Nick Drobot aka Elvis's mom), M. Gross and Val Larkin.

The day was a great success....sunshine and all!!!! Special thanks to the Lions Club for the donation and hot dog bq!!! Diana, Brian & Sharon ALS Society, Special thanks to our coorporate sponsors...

Blaney's Enterprises, Hair by Amber ,Whitemouth Hotel, Horizon Insurance, Conroy's Collision, CJ's Service, Sunova Credit Union, Whitemouth Pharmacy, Whitemouth Dental Clinic, Hilltop Bakery, First Stop Grocers, Whiteshell Chairs, Brereton Lake Resort, Kent at Dunn-Rite Foods (Wpg) , Kyla Tyndall.

We are so overwhelmed by the tremendous support of the Whitemouth School Students, community,our friends and family.

A special presentation at the walk was made to our very own Jennifer Staerk who not only organized the walk but also organized the BQ and other festivities. She was recognized by Diana Rasmussen for winning The ALS Society Volunteer of the Year Award last year. We can be so proud of her accomplishments in winning this award.

Our grandaughter Tia and her friend Brook made a presentation to the school assembly about ALS. Our little grandaugther Katie also made a special report on their garage sale efforts.

Tripwire Media was on hand to record this special event...Thanks Doug!!!

All we can say is.........thank you........thank you.........and again thank you!!!!!!!

Reynolds School Walk / Prawda MB May 18th Tuesday

Hey...another MB beautiful sunny day....beats last year's rain and sleet!!! This enthusiastic bunch of students raised $1200.00. Small school but as we said before really big hearts! Rick could not be there because of transportation issues.

I had the honour of being there and walking with the students as they went ahead to help defeat ALS!!!! I was so touched by all the hi fives, and hugs that I received by the students. I was continually asked "how is Rick doing?". I was treated like an old friend to all the students and staff. I was even led by a young student to the lunch room just to make sure I knew where to go when lunch was served. Matthew made sure I had a flower he had especially picked for me to give to Rick. Jasmine made sure I was never alone and was looked after. What more could a person ask for????

We are so touched by these kids....who said "Nowadays....these kids?????" Thank you students, staff and everyone in the Reynolds School who made this day possible!!!!!

Whitemouth School & Reynolds School you have forever touched both Rick and myself in a way you will never know with your love, compassion and support!!!!

Students you have the opportunity to change our world for the good and we really believe you will...you have already demonstrated to us both you have it in you!!!!!! God Bless all of you!!!!!

Rick and Joan here..."one more sleep till the ALS Walk in Whitemouth"

We are so excited that tomorrow is the 3rd Annual ALS Walk in Whitemouth. Thanks to everyone for your support in coming out to the walk tomorrow, donations, buying raffle tickets, supporting Katie & Tia's Garage sale and for all the hard work that goes on behind the scenes to make this such a successful event.


We are honoured to have special guests this year, Uncle Keith from Calgary & Rick's sister Shirley and her husband Bill coming in from Chattham, ON to joining us this year as well as other family and friends!


If you haven't had a chance to donate yet and would like to help out you can do so on line at http://www.als.ca/events/mysite.aspx?fid=4004

Rick and Joan here..."A Broda Chair???"

What is a Broda chair???? We didn't know either. Actually, it is kind of like a chaise lounge on wheels. It reclines and has an adjustable leg rest on it. The sides have adjustable pads to help hold you upright. As my upper body strength has deteriorated I find myself leaning over to the left all the time. It was getting so uncomfortable as well as taking a lot of energy to try and sit up straight. This chair solves that problem by holding me upright. We will be using this when I am inside as it is not an outdoor chair. My wheelchair is what will keep me being able to cruise outside.

It was a bitter pill to swallow as you can see from the pic I look pretty much like a complete invalid in it, especially when I combine it with the bipap mask and the feeding tube. Hey, wait a minute I am an invalid!!!!! When we got it I asked Joan to give it an extra kick for me and then we thanked God not only for the chair but for the Health Care System we enjoy and all the caring hardworking people in it that makes equipment like this one available to us.

To be honest, as the equipment continues to multiply and as I get more dependent on all of these different apparatuses to keep going it is very tempting to get depressed. Instead, I choose to approach it in a different way. We came upon this phrase on another ALS site and it really sums up the attitude that you need to take to keep fighting this disease. The new equipment is not a sign that I am getting closer to the end, it is a sign that I have new tools to continue the fight.

Rick and Joan here..."Katie and Tia's ALS 2nd Fundraising Garage Sale"

Wow - Katie and Tia surpassed last year's fantastic total and raised an unbelievable $1,631.00 for ALS MB!!!!!! The success of this event was a combination of an amazing amount of hard work by Katie and Tia not to mention a few 18 hour days put in behind the scenes by their parents Jake and Val, along with Kathy & Jade, Roger and Kathy & Nick and Colleen for all the clean up, and Blair for handling all the tables. Thanks so much to all the folks who so generously donated items for the sale. A big thank you to all the generous folks who came to buy "stuff" and support the cause. None of the items in our sale have a price tag...you pay what you feel is fair. Many people stopped in today just to give a cash donation. You are all so amazing!!!!

We were overwhelmed by how many folks when they heard about the sale came and dropped off items. We are talking friends, neighbours, home care workers, coworkers of Jake and Val, handi van driver Martin and on and on!!!!!

Tia and Katie worked the sale from 7:30 am until everything was put away! Tia even bqued hotdogs! We found out the way to keep Katie posted all day...get a till!!!

Val early this morning hanging balloons, making coffee, moving tables, hanging and making signs, driving around at 7:00 am putting up signs, unpacking and setting out all the stash and much much much more!!!!

Kathy, Brian's granddaughter (don't want to misspell her name)Jan and Brian & Jade.

This year we even had sun all day!!! no snow!!!!

Rick and I spent the day visiting with family and friends.




The garage sale threatened to turn into a party when Nick a.k.a Elvis made a surprise visit. He wowed a group in the handivan who had stopped by to offer their support and he later wandered down to the care home to do a couple of songs.

Thanks again to everyone who was involved in the ALS fundraising garage sale!!!!

Check out this link to the ALS MB site for more about the Katie and Tia's ALS Fundraising Garage Sale http://www.alsmb.ca/

Rick and Joan here..."Reynolds School Kickoff"

We arrived at the Reynolds School with a bunch of the students looking out the front door and eagerly awaiting in the gym to welcome us!

Once again we will not be posting any pics of the students due to safety issues.

Here is a pic of us with some of the staff. We are so absolutely amazed at how each school has its own personality! What a lovely school Reynolds School is with really attentive students. The staff and students greeted us with such warm welcomes! It was very special for us to be there as this is the area that Louise Lamaga lived and also taught from. The students walk each year in her memory. Louise lost the battle to ALS in 2007. The students are all familiar with the devestation that ALS leaves in peoples lives.

Once again after the dvd presentation we were amazed at the insightful questions that the staff and students asked us. When asking the students if they know of anyone in a wheelchair we have been so amazed at the amount of hands that go up each time. Growing up both Rick and I weren't around people in wheelchairs. These students have such an awareness of handicapped people! The kids loved Rick doing tricks in his chair! Tilting way back till nearly horizontal, and they loved the sip and puff hands free system on his chair. He even complied to the request to show them how fast his chair goes across the gym floor!

Special thanks to little Jasmine for standing watch at the door!!! Thanks Reynold School for opening your school and your hearts to us!!! Your school may be small in size but it is sure big in heart!!!!

Our handi----dandy----van driver Martin....always treats us so awesome!!! He has become a friend to both of us.

When in Hadishville we were told we are not to leave the area until we stop at the infamous spot "Sophie's Restaurant". Well!!!! we did as we were advised ...awesome...awesome...place... home cooked meals...and desserts to die for! You have to try the Heavenly Hadishville dessert!!! It is such a quaint and wonderful place. We were greeted with open arms and wonderful service. We were sent home with a bag of complimentary mini loaves of bread to enjoy. We hear they serve awesome pizza every Friday!!!! They are just a couple of minutes off the No. 1 Hwy on Hwy 11 and well worth the stop. They are open 7 days a week and to boot they are licensed! When at Sophie's do say hi to "Pat" from us and say you heard about them from Rick and Joan. Their website is http://www.sophies4food.com/.

Rick and Joan here..."On the lighter side!"

We had a bit of an adventure after we finished the presentation at the Whitemouth School on Friday. We had a great time at the school and so decided to make our way a couple of blocks uptown to the Whitemouth Hotel for a late lunch. It was raining lightly but threatening to get much worse. A few hundred yards from our destination the wheel chair started to go slower and slower and slower....Yikes!!! We were almost out of power.

The possibility of me sitting in the wheelchair in the pouring rain on the middle of a sidewalk on main street while poor Joan went looking for a very long extension cord for the wheelchair charger reduced us both to fits of laughter. Our faithful wheelchair limped along and like a faithful old horse got us to our destination before it died. Joan had to push it up the door way ramp as it was too weak to get up there.

Our good friend Kirsten lent Joan her car to go and make an emergency run to get the charger. So we ate lunch, charged the wheelchair and had a few beverages before making our way home! We felt like movie stars on the way home as every kid we passed from 6-18 who had been at the rally gave us great big waves!!!! All and all a pretty successful day!

Another thing that appealed to my twisted sense of humor that made us laugh was that our next door neighbour got a different car---a great big hearse! I joked with a few folks that it is not everybody who has a terminal disease that gets to have a hearse parked across the back lane ready and waiting! lol

Anyways, if you are driving up our street and see a hearse parked up near the house don't panic! I intend to be around for awhile yet!!!

Rick and Joan here..."Thanks again Whitemouth School"

Here is Rick and I speaking to the Whitemouth School staff and students.

First of all, I did not post any pics any of the students in the rally on purpose because of all kinds of school safety rules.

Our day started by scurrying around and getting Rick ready. Then it started to pour rain!

As we were walking through the rain a few blocks to the Whitemouth School for the 3rd Annual ALS Walk kickoff presentation we were both in anticipation of how it would turn out this year. The first time we met with the students in 2008 Rick was just using his cane...the kids have been on this journey with us from the start so they are very aware each year of the changes in Rick's condition.

We were greeted by many of the school staff and student body with cheery hellos etc. The ALS Society has finished their ALS Educational Dvd which includes Rick and I so we were really pleased to be able to use it for our presentation. This is the day where the students are handed out their pledge sheets.

A special thanks to Doug at Tripwire Media Group who produced this dvd. They have done a wonderful job of putting it all together!

After the dvd was shown the students burst into spontaneous applause! We were so pleased that they really embraced the content of the presentation. The nearly 300 students and staff were all gathered together in the auditorium for the presentation. After the dvd was shown the floor was opened to question and answer period. Once again to our amazement the students asked and asked and asked questions. The questions were so thoughtful and pertinent. We were amazed again at the frankness and perceptiveness that the students showed. The questions ranged from "what is the worst thing about ALS?" to "Are you afraid of dying?" and anything in between.

Joan and I have always been real open especially at the schools so that no question is out of bounds! We really feel it is important that we get out there and be transparent about the challenges of living with ALS.

Special thanks to Jennifer Staerk who coordinated the rally, principal Jeff Whitford for opening the school to us, the teachers, and of course all the students of Whitemouth School!

We are looking forward to meeting the students next week on the 5th of May at Reynolds School!

We can't wait for the Whitemouth School Walk Friday May 14th......

Also take note...ALS commercial starts airing on May 10th on CTV Winnipeg.