Joan here again..."A major melt down!"

I definitely had a major melt down this past week! Anger, tears and lots of feeling sorry for myself! The realization of more losses can be overwhelming at times. Rick is withdrawing and it is so very frightening to me. We are at a spot right now that is very emotional and physical all at the same time. Rick can barely sit up on his own. Sitting in the wheelchair he looks pretty okay. He always "talks the talk" and "sits and smiles". We do try and snuggle in the hospital bed as much as we can. At night he wakes me up a couple times a night so I can push his back up so he can sit up and take a whiz.

We are at the place where it won't be long that this will not work. I spent the day shopping and looking for deals on men's night disposable underwear and some specialty pants that snap up the back. I think of all the things so far that I have experienced ( I know there is much more coming) but this has been a hard one. I know this is hard for him also but as a wife and lover to him this has it's own challenges! I don't even want to type this but I have determined to be honest right from the start so that is why I have even written this.

On the bright side, we actually got our passports this week! I had mine years ago when I went to Mexico with my daughter on missions but Rick has never had his. I really wanted him to have a passport just for the sake of him having had one. Where are we going? No idea! But hey...we did it! We got our passports! Rick cannot actually stay in a motel as his needs are too numerous. So it will have to be a day trip...so I will guess...Grand Forks here we come!

So for all of you lovers out there...while you can....snuggle, hug, touch and kiss all you can and while you can!

Joan here..."Everyone asks how am I doing?"

Well, how am I really, really doing? That is what people have asked me from time to time. I am not sure if you really want to know the answer. Please don't read further if you really don't want to know.

First of all, I am so very grateful that we have a place to live in...please understand that! Our kids have been most gracious and kind. It is not about them. It is just about me! I take the full blame of everything.

I went from a 4 bedroom home and a 4 bedroom bath to a place that is not my own. I now live in a space that I don't have a kitchen sink. I DO have a sink with water in a utility closet (which I am eternally grateful for) but no drain. When I do my dishes, or Rick brushes his teeth, or I wash the floor, or I have the "honey bucket" to empty I climb up a step ladder to get rid of the excess stuff. I keep asking myself...am I being so selfish or unkind or demanding to want more than that?

At times I find it all so all overwhelming! I am a few years away from 60 and I climb a step ladder to empty my dish water and "honey bucket". Do I feel sorry for myself...yep...lately I really do! I honestly don't know of too many women in my life who would do that every day for 8 months. I slipped yesterday on the lift and had what they call an "awha moment" (I am a slow learner) but thankfully am okay.

My emotional state of mind is not too good right now. I do cry a lot!

People parish because they have NO vision in life. That is how I am feeling right now.

Rick is concerned if I write things down and tell people how I really feel....it will upset too many people. I said " I don't care...this is how I am feeling!: He says..."well giver er then" and spins away in his wheel chair. He doesn't like to rock anyones boat what so ever!!!

All my life I am concerned at offending people, hurting people, or denying my own person at the expense of protecting others. So some of you can really really hate me or you will really really try to understand that I am not trying to be hurtful...I cannot believe that this is happening in our life. I wake up each day taking care of my husband and by the time I have a chance to even shower or comb my hair it is 1:00 in the afternoon. For every pound he has lost I have gained 10 I am sure! You women out there know what I am talking about!

I am trying to balance being nice and kind to being really honest about how I am feeling and doing right now. I do feel the pressure of just being "nice" and let the water run off my back! Unfortunately for me I have always said how I feel even if people can't handle it.

The reason I write this down is because people often say ....why didn't you say something! Well...I am right now....

Rick and Joan here..."Carillon News...Elma"

First of all we forgot to mention some thank yous! The awesome caps donated from cousin Lorna and the t-shirts honoring Aunt Christine that were donated by Rick's sister Marsha.

This is a copy of what was written in the Carillon News in regards to the 2009 ALS Whitemouth Walk.

"ALS Walk a great success"

Approx. 400 people decided to brave the weather for our second annual Walk for ALS in Whitemouth on Friday, May 15.
Whitemouth School and Beausejour Early Years Schools as well as friends and family members of people living with ALS got together to take on the very big task of surpassing last year's fund raising total of over $12,000. A big task on the sunniest of days, the weather was not planning on working with us.
Our day began with speeches from walk coordinator, Jennifer Staerk, executive director of the ALS society Diana Rasmussen, Rick Fewster, a local fellow living with ALS, and Rick's 11 year old granddaughter Tia K.
Shortly thereafter in a fine mist, everyone set out in their white "Walk for ALS" t-shirts on the designated route around town. Partway into the walk, the rain became heavier, so the students became faster, never losing their enthusiasm.
Upon returning to school, the walkers enjoyed their hotdog lunch prepared and swerved by the Whitemouth Combined 4H Club and the Whitemouth Lions Club. All proceeds from the hotdog sales went straight to the ALS Society, as all the food was donated by local businesses.
Before the day of our walk, one of our students, 7 year old Katie K, took it upon herself to have a garage sale to raise money for ALS. Katie, Rick's granddaughter, raised over $1,000 to give to the ALS Society.
When all was said and done, we are overwhelmed and proud to say our walk took in $13,500 and counting. Thank you so much to everyone who donated, walked and helped put on this very special event"

Rick and I just cried when we read that both Tia and Katie were mentioned for their special efforts in this year's ALS Walk.

We once again would like to thank all the business sponsors, families, friends and community for making this year such a success despite the weather. We know some day all your efforts will result in finding a cure for this horrible disease!

Rick and Joan here..."More about the ALS Whitemouth School 2009 Walk"

Well where do we start! There are so many people who came together to help make our 2nd Annual Whitemouth ALS Walk a success despite the wet and cold weather! Thankfully the snow flurries held off till later on that day.

Special thanks to Jennifer Staerk from Whitemouth School for her tireless work in making this all happen. Thanks to all the teachers
and students from Whitemouth & Beausejour for their enthusiastic support. It was quite an experience to see the students walking in the rain, never complaining and so committed to the cause.


Special thanks to Diana, Sharon and Brian from ALS MB who helped so much with the walk and showed up with tshirts for all the participants. We laughed that the sea of white shirts in the auditorium reminded us of the old Wpg. jets days.

We were honoured to have my mom and dad who were able to attend this year. My sister Shirley was also able to fly out from Chatham to join us for the walk this year along with so many other family and friends. Your support means the world to us.
This year's walk was particularily poignant for my family as my Uncle Keith's wife- Aunt Christine lost her battle with ALS a few months ago. We were walking in her honour as well in memory of Louise Lamaga a former Whitemouth teacher. Her daughter Lorraine initiated the first Whitemouth Walk last year.

"Team Rick" was out in force again. With the wet spring and the fact that the walk is held on a week day made it tough for a lot of folks to make it in person. We want to thank our friends and family who were thinking of us during the walk. We felt you there in spirit.

The local Lions Club along with the 4 H Club BQued and served nearly 500 hot dogs! Thanks to all of the sponsors for their generous donations of money and prizes and food and water.

Whitemouth Hotel, First Stop Grocers, Beausejour Coop, CJ's Service, Blainey Enterprises, Whitemouth Home Hardware, DunRite Foods, and all the retail outlets that put out donation boxes. We apologize if we have missed anyone.

This year once again was so emotional for us. We are humbled by the outpouring of support, care and compassion that we have personally received and for all the support to ALS Society of MB.

We will never find a cure for this disease if we don't raise the money for the research of this horrible disease. Thank you everyone!!!!

Rick and Joan here..." Okay...Okay...we just couldn't wait to share Tia's speech today!"

A quick note....Rick...nor I...nor Tia's parents knew that she was going to address the student assembly with over 400 present! Quite a way to start your public speaking career. She told us afterwards that she was just shaking! It didn't show. We were all so shocked and crying at the time we asked her for the written copy of her speech to let it all sink in. Once again...we all can make a difference in people's lives no matter how young or old we are....Here it is....

ALS Speech…. By Tia

Is everyone in your house healthy? When you get sick does your cold or flu go away?
I am Tia K. and I know first hand about a sickness that does not go away.
My grandparents are Rick and Joan and my grandpa has ALS.

Last year my grandpa and grandma moved into our house. When grandpa moved in he was walking with a cane. We made a bedroom upstairs for them and we got a special elevator to take him up and down.

Our garage got turned into a suite for my grandparents. It is very nice having my grandparents around. I get to visit them whenever I want. They come to my school to see my band and Christmas concerts. We made a special bathroom so grandpa wouldn’t have to step so high to get into a bathtub. The sink is built so his wheelchair will fit underneath it. There is a drain in the middle of the floor because there is no edges on the shower stall.

Grandpa has trouble walking so he has a wheelchair named Max. He can drive it to get the mail. Now he can even go to the grocery store. I like it that the store made a ramp so we can go on shopping errands together.

My grandpa can’t get into a normal vehicle anymore. They bought “the beast” for driving to appointments and farther trips. It is a big grey van that has a lift for hoisting grandpa and his wheelchair. It is like driving a bus. Grandpa can stay in his wheelchair and it locks into place. If you ever see them driving in town…make sure you wave!

My grandpa can’t sleep in a regular bed anymore because it is to hard to move over. He has a hospital bed with a trapeze over top so he can pull himself over. When grandpa can’t move himself anymore we have a Hoyer lift for moving him. It is like a crane for lifting him. My grandpa may have more trouble doing things soon. The ALS Society has a lot of equipment that can make things easier for him and us.

ALS affects everyone, not just the one who has it. My grandma works really hard to make things easier for grandpa. My dad did an amazing job changing our house for them. My mom usually cooks so that grandma and grandpa can do other fun stuff. My sister and I try to visit to check up on them. Many other family members help out in ways to numerous to mention. Without the help of family and friends things would be a lot harder for grandpa.

Lets give the helpers a round of applause…and an applause for the brave heart himself…Rick!

You are walking to help other people have easier lives and to raise money for research to cure this horrible disease. For this I want to thank you!

Rick and Joan here..."The ALS Whitemouth School Walk"

Yes, it rained.....nearly snowed....but wow!!! so much to say!!! waiting for the pics...so we can share what all transpired. We wound up with nearly 500 people on our walk. Teachers, students, family & friends came out despite the weather.

To wet your appetite we had an incredible surprise. Our grand daughter, Tia, went and gave a talk about her grand father and ALS in front of everyone! We cried so much that we had to ask her for the written speech as we missed some of it as we were all so surprised. Her mom and dad didn't even know she was going to do that. She made us so proud! Pics and her speech to follow on a later blog. (get a kleenex ready)

To wet your appetite a bit more....we will talk about the Lion's Club, the 4 H club, the fantastic schools of Whitemouth & Beausejour Middle School, the local business sponsorships, family and community donations and support from their presence, to financial, to donation of hats and t shirts!

To show you the latest hoyered person.

Despite the weather...we (means everyone not us) have raised over $12,000.00 for the ALS Society of MB...and money is still coming in....thank you everyone for your generosity...we are still trying to beat last year's total and we are nearly there!

We are all Manitoba Tough for sure!!!

Thanks again everyone!!!!!

Rick and Joan here...Rain, or snow???? Yep.....snow! but Katie's ALS Fundraiser Garage Sale goes on....yippeeeeee!!!!!

Our six yr old grand daughter had a dream last winter that she wanted to have a garage sale to raise money for ALS to help find a cure for the disease, and help supply equipment to ALS patients.

She won the hearts of us all when she persisted even this Spring that she still wanted to go ahead with it. Her big sister Tia who tirelessly worked on the day of the sale, Dad and Mom who supported their little girl's dream, family and friends came along side to make this happen!

On the day of the sale...it SNOWED!!! There she sat shivering away and sitting at the table with her sister in their winter clothes. She was selling her lemonade as a garage sale has to have lemonade! Never could we have imagined how her goal of $100.00 would be exceeded! We decided that there would be NO prices on anything but that people could pay what they deemed fair. Hot Dogs, coffee, lemonade and some hot chili were also available.


Katie had so much support from the community, friends and family!


Everyone opened their hearts and wallets to make the day more of a sucess than any one of us could have imagined!


When the dust cleared and a very tired bunch of us added it all up we found that over $1,000.00 had been raised and the money will be all going to the ALS Society of MB. WOW!!!!! We are so proud of our grand girls who both withstood the cold and worked so hard to make this happen!!!!

Rick and Joan here..."Beausejour School Assembly"

Yesterday, we had the honour of visiting our neighbours down the road in Beausejour. Grades 3-6 all assembled in the gym. They will be joining us at the Whitemouth School ALS Walk Friday, May 15th along with family, friends, neighbours and all who can make it.

It sounds like 85 kids, teachers, and helpers will be coming from Beausejour. We are so thrilled that the two schools are working together on this. It is all to help anyone anywhere in MB who is diagnosed with ALS.

We were received with open arms from people who have never met us before. The teachers have done a great job in preparing the students for our visit. It has amazed Rick and I how the students in our schools have been so respectful, compassionate and full of thoughtful questions! We always tell the students and teachers they can ask us "anything"...and we mean it! But it always amazes us what some of the questions are.

Joan has this thing where when someone asks her her age...she always says....why do you ask as you know a woman is just going to lie about her age! lol.... Anyways, sure enough she was asked by a student how old she was! This time when she asked the student why the question....the student replied that "she was worried if ALS strikes at age 55 on average, after Rick is gone, might you get ALS as well?" Wow!

We are pretty straight forward with the students about life expectancy, future loss of abilities, like speech, swallowing, holding ones head up, use of arms etc. We do that because we are preparing them for the next time they will see Rick we don't want them to be afraid of him.

Both Rick and I wish we would have had the oportunity as students growing up to have had the experience to meet someone with a terminal disease and talk openly about it with us! Education is not just reading, writing and arithmetic. We hope in some small way that we not only educate about ALS but life lessons as well. As a result of the students questions in these last two assemblies we have talked about everything from dying, to loss of speech, feeding tubes, being afraid, feeling helpless, being angry, finding a cure, and on and on.

We have a dream that perhaps some of the students may be inspired to go into medicine, science, health care, make so much money and donate, or even invent some equipment that will somehow save someone in the future from suffering! We want to inspire not just explain about a disease!!!

Thank you to the principal, all the teachers and of course the students in Beausejour for a wonderful time! See you at the walk!!!!

Rick and Joan..."Whitemouth School Assembly 2009"

On your mark...get set...GO! Rick and Val driving some of the equipment to the Whitemouth School Assembly 2009 with only minutes to spare. I kept flooding "the beast" and it wouldn't start. A story for another day.

Rick says"the best pic missing is Joan running along the side of us in her high heels taking the pics." What a woman!!!

This is us at Whitemouth School Assembly in May 2008. Just a year ago. Rick could still walk with only a cane. Rick was just diagnosed in Feb. a couple of months ago before this assembly.
We think the kids were quite affected by the progression of the illness...we sure have been!

This is us today at the Whitemouth School Assembly for 2009. Rick in a motorized wheelchair full time and sleeping in a hospital bed. We decided to bring a whole lot of equipment that Rick has used and is no longer adequate as well as a couple of pieces that are his life line as of right now! We wanted the kids to see the progression and quantity of equipment that ALS demands. So the school sent over some strong students to pick up a load of equipment and helped us to get it over to the school.

They had a contest where the students tried to guess the value of the different pieces of equipment. They will announce the winners Monday. They are a competitive bunch! :) Winners win a pail of ice cream and ice cream cones for the class!

Our personal thanks to Principal Craig, all the dedicated teachers, and of course the fantastic students who so patiently and respectfully sat through it all! Monday.....Beausejour School here we come!!!! Thanks guys!!!!!