Rick and Joan here..."Our van lift trial run"

Here we are! Val took the pic. We survived! Our first van/lift experience. We did a trial run with the motorized wheel chair. The chair slipped and slid all over the driveway just getting to the lift. Winter snow and ice makes everything very difficult with wheel chairs and scooters. However, we did manage to get Rick up and down. Then we proceeded to give it a try with the scooter. We got him in and out, once again, with much trepidation, on both our parts!!! Rick had to trust me with the controls! Remember, I am the one who is NOT mechanical in any way!

There was NO way I was going to attempt this without Jake there supervising my first attempt at this. Jake very graciously answered my questions and walked both Rick and I through the process. I was on the verge of tears the whole way through. I am so glad Jake exercised such patience with me otherwise I could not have even attempted to do this. He is so mechanical and has absolutely no idea how people who are not live and exist in this world on a day today basis! :)

Rick here...Joan is too hard on herself! She did great...quite a stretch but she did great! I was very proud of her. I know how nervous...and I mean nervous she is about it all! She does have a way of rising to the occasion though! It was quite an adventure and I am sure we have many more ahead. A quick thank you to Jake for the lessons on operating the lift! Looks simple but to us is not.

Thanks again, Jake & Val, Grant & Colleen, and Gladwin for all your parts in getting the van up and running! We are forever grateful!!!

Rick and Joan here...Christmas Eve Carrollers!

We were snuggled by the fire tonight...a very cold Manitoba Christmas eve...when we heard the beautiful sound of Christmas carols being sung outside. We went to the door and were met by a group of young people from one of the local churches.

They were going door to door on a very very cold night singing their hearts out. We invited them in to warm up for a few minutes and were treated to several more wonderful carols right here in our own living room. We were very touched and it made a very difficult day so much better! What a memory thanks to all of them!

Merry Christmas and a Happy Healthy New Year to all!

Rick here...On Monday, yesterday, it was "My worst day yet!"

In the midst of all the joy we are experiencing with family and friends, I had my worst day yesterday since diagnosis. I hate to inject it in the midst of all the good things that have been happening but it is reality and it is what we are experiencing.

I woke up in the morning overcome with the most intense gut wrenching sadness that I have ever experienced! Joan heard me crying and held me as I sobbed from the depths of my being. I could not get past it. It went on for most of the day. Joan and I prayed for wisdom in what was going on. I have never felt so out of control emotionally!

Joan then spoke wisdom to me. What came to her as we prayed was the word "mourning". As soon as she said it, I felt released. I still cried for some time but I felt like I understood then what was going on. We prayed and talked through most of the day sharing God's word and what he says about mourning. In retrospect, this was probably way over due as I have tended to try and cope by denial, staying positive, and being strong! That only works for awhile. Joan told me "you don't always have to be strong" "it is okay to be sad, to cry and to just be yourself"! It released me. The thing is, I know all of this stuff, but it is sure a lot different when it is your body that is shutting down.

This is all part of the process but it is no fun going through it. This disease robs you by inches. It never stops and you always have the assurance that it will be worse tomorrow than it is today! I tend to hold it at arms length and then finally succumb to the reality of where I am at. I don't think this will ever change and I don't think I want it to. I just wanted to share this part of the journey. As my sweetheart says..."keep it real Rick!". lol

Now ask me how I am today? Today is a NEW day!

Joan here...."the beast"

Meet the "beast". Yep...here it is! Ready to go! (except I need lessons to operate the lift...) Remember, I am not the mechanical one!!! Also remember, I am the one who took how many trial runs just to wheel Rick in the wheel chair without him doing a face plant! So you can only imagine the challenge I am faced with in driving and operating this van! lol

We were blessed by being able to get this van. It belonged to a family whose mom suffered for years with ms. It has a few years on it but it is mechanically sound and has a great wheel chair lift in it! It means Rick will be able to still shop with me!!!! lol... and here he thought he had an out!!!

Much thanks to Jake, Grant & Gladwin for all the hard work you guys did to make it possible for us to get it on the road! This will increase Rick and my quality of life more than you can imagine. It is getting very difficult to move Rick around anywhere.

You can find us located at the end of the parking lot at any given shopping mall because there is no way...and I mean no way...I will be able to park or fit it into any normal size parking space!

Rick and Joan here...2 more days till Christmas!

Wow! Christmas is just a couple of days away. We are enjoying family and friends! We have had so much snow out here. No problems having a white Christmas!

We haven't blogged for awhile as we have been busy with family and friends. Our friend Mike so graciously delivered a Christmas tree which now stands all lit up on our back deck. Joan's hairdresser is now Rick's hairdresser. Because of the stair issue she agreed to come over here and cut his hair. Talk about going the extra mile!

We had our family Christmas dinner at the Whitemouth Hotel Restaurant. A big big thank you to Mike, Arlene & Kirsten for their awesome service and hospitality! We even enjoyed a surprise visit from Santa (Thanks Grayson)! We all came back here afterwards for a great time together. Wow! 9 grand kids and 5 adult children and partners. It made for a pretty fantastic time! We forgot to have a family pic taken!!!! agghhhhhhhhhhhh.............

We had a wonderful gathering at Joan's folks place. It was mixed with sadness and joy! I find it so hard at these gatherings as next time (if there is one) I will either not be able to attend or will be in an even more tragic state than I am. As it was...Joan had to park as close to the door as possible. Nick and Conrad were waiting for us to arrive to bring me in. Then Nick and David got to take me out at the end! All of Joan's family have been so gracious and helpful to us both in so many ways! I am truly blessed!

A big thank you to Jenn & Clif for completing the heating system in the suite. Now we can sleep with the windows open again ! lol Thanks Colleen and Ella & Remi for the fantastic lunch and visit. Thanks Jake & Val for all the snow clearing in keeping a pathway for me. Not to mention the never ending ongoing other stuff you take care of for us!

Today, my sister and husband from Ontario and my folks and Joan and I enjoyed a wonderful lunch at "Jennifer's" in Seven Sisters together. The food and service there is fantastic. Can you believe it...goat curry soup??? mmmmmm...delicious!!! Last time I had alligator soup and the time before I had tripe (Joan calls it cow stomach soup). Our kinda place!!! Not to mention their delicious chicken and ribs!!!

We all came back here afterwards and had a wonderful but very emotional time together.

Rick here...My new toy!

Well, here I am in recline mode in my new toy! The new power chair arrived today! A big thank you to Louise for expediting this. It is smaller than I supposed (which is a good thing)! It is quite maneuverable and quiet as can be. I haven't had a chance to try it on a straight away but according to manual it will go 8 mph. LOL! Yipee!!!

Anyhow, Joan and my first reaction was to have a cry as we do at every milestone we pass. But inside of 10 minutes I realized what a difference it will make in saving energy in my life. It is so much easier than the manual chair. I did not realize till I had this how much energy I expended just wheeling around our place.

It is very comfortable as well and we are so thankful to have it!

Bad news!!!

Joan and I received some really terrible news this evening. My Uncle Keith's wife - Aunt Christine - has been having some medical problems the last while. They have just received news that she has been diagnosed with ALS!
They have been such a source of help and encouragement for us as we have battled it, who would have thought that they would be next? Our thoughts and prayers are with them.
They live in Calgary, which has a great ALS Society also, so that is a blessing.
But what terrible news:(

Rick here - Instant Solution!!

Wow!! Are we impressed!!!
I dropped a note off to the principal at the school this morning detailing our concerns about last night and had a phone call back within the hour assuring us that this situation would NEVER happen again! Action had been taken and procedures adjusted!
We are so touched by the care and concern he expressed!!
Prior to Joan and I starting on this journey we had absolutely NO experience dealing with the disabled, mobility challenged,etc......and had no concept of the challenges that so many folks face in everyday life! I was absolutely oblivious to these things, as are most of us.

I had never given an inch of thought to the fact that a little 4 inch step could make a whole building inaccessible to someone....and how it makes you feel when you are the one who can't participate in a simple activity because of it!

Life lessons! It can happen to any of us....this time last year I could run up 2 steps at a time and now that 4 inch step keeps me back!
I cannot belive that I was so unaware and oblivious to problems that so many among us face!

Rick and Joan here...A tough night!!!

Yep!...you heard it right...a tough night! We were at our gdaugther's band concert and wow.... here it goes...
Got there and parked near the door...wow..we thought we had it made...wrong...
The main door (the wheel chair accessible one) was locked with a sign saying go to other door. We saw a student inside who must of recognized us...so she opened the door for us thankfully. That got us in....getting out was another matter.

After the concert we headed down the hall to the door we had come in and only to find there was an iron gate across the hallway locked with a chain....oops...wow!! so we headed back to another door to leave and got outside to find a set of stairs...not good with ALS!!!!!!!!!!! so I tried backing up the wheelchair through the door and wound up falling flat on my back....too embarrassing...and thankfully not breaking anything...after a couple of people picking me up off the floor. We headed back to the auditorium to try and find someone to let us out of the locked gate. The person came with us and tried numerous times to undo the lock but with no luck...we sat there in amazement and frustration...thank God there wasn't a fire or any other emergency....just imagine for a moment trying to leave an event and finding the only door that you could use chained shut...not a good feeling.

Anyways, he finally got the janitors attention and she unlocked the door. We could get through at that point. What we don't understand is firstly...this is a public institution and there is no FULL access to wheel chair accessibility.

No one thinks of these things we realize...but here we are...we have to!!!

Things to thing about....
We can not get into our local grocery store.
We can not get into our favorite hair salon.
We can not get into our local sundries store.
We can not get into our local insurance and Sears store.
We can not get into our local school for a band concert.

Life gets complicated fast when you have limited mobility. We had no idea ourselves until we have had to deal with it.

So....if you are out and about please check these things.....help someone else out!!!! Speak out to your local authorities about this....we are doing so as we can!!!! It is ALL about raising awareness....we realize that no one individual is trying not to help but it is easy to miss these things....so...............................for today...go for it!!!!!!!!!!!!!!

I was really pissed about all of this tonight...but I'm somewhat over it now....but will NEVER forget what happened to us tonight and will do what I can to help someone in the future not to have to go through this............I found my voice!!!!!!!!!!!!

Joan here...Jack fell down but didn't break his crown!

Rick has been falling more frequently lately. He fell outside while walking out to the car on Friday. I was horrified! He wouldn't let me help him up, he kept saying he was okay and he could get up on his own. He slowly maneuvered himself up the side of the door of the car and into the seat as I stood watching, dying by the moment!

The other nite he was getting into bed and plunked his butt on the edge of the bed. Unfortunately, he sat too close to the edge of the bed and slid right onto the floor. Horrified again I ran to help him.

Hmmmm...I found out with him laying on the bedroom floor that I was not too much help. I tried to lift him back on to the bed...well that didn't work! We got him on his knees one at a time and then I lifted each leg up for him. I asked him to tell me what to do. Then he told me to lift him from behind under his arms...well sounds pretty easy right???...hmm...I did just as he instructed but low and behold when I would lift him, it was like I was too short in arm length to get him up to the bed. He would slide down again and again and we would have to start the process all over again.

After the initial shock of it all.....we started laughing and laughing! To the point I could hardly exert any strength in lifting him. It took quite a few tries to finally get him back up on his feet...but we did it! We laid in bed afterwards and reflected at what had just taken place.
In all the sadness of the moment I was just so glad that we could experience the humorous side of it all!

Rick and Joan here...Out and About!

We spent the day with two of our grand daughters shopping in one of the busiest time of the year. What a hoot!!! We experienced some of the kindest care for Rick when everyone was up to their necks in busy!!!

We went to Canadian Tire and there the staff person informed us that there was not a scooter available at the moment so after a bit we decided with girls in tow to just leave. It is impossible for Rick to get around with out one these days. It is so hard to transport our scooter that it is more pain than gain. Anyways, to make a long story shorter.... We were standing on the outside of the store when the staff person came running out to inform us that one had come available! We were so amazed that she took the time to run out and get us in the middle of her Christmas Craziness. She is a gem!

Then we took the girls to Boston Pizza for lunch. I let him out at the front entrance and took off to go and park the vehicle. As I was driving away I could see a man approach him. Rick later told me he was having a hard time making his way up the 4" slope to the front entrance and the rough looking man saw him and asked if he needed a hand. He expertly grabbed Rick's arm and helped him up. Rick told me as he thanked him the man simply smiled and said...no troubles Bro!!! Rick was so touched. It was so evident by the way the man helped that he had had experience with the disabled. Never judge by a person's appearance. The simplest kindness can make all the difference in the world at the right moment. It sure did for Rick today!!! Tia witnessing the act of kindness later told us that it made her cry when she saw how good this man was to her grandpa!

Rick took turns sitting at the restaurant with one of the granddaughters while I would take the other to do their Christmas shopping for their friends, each other and mom and dad. Well.....Rick and Tia had a "making a memory experience". There was a table of challenged individuals sitting across from their table with their care workers. As they got up to leave one older gentleman who was shuffling on his way out accidentally caught his pant leg under his heel. End result- his pant dropped to his ankles! His care worker gasped in horror and leaped ahead to solve the problem. Tia, covering her eyes...immediately announced to grandpa...thank goodness he was wearing boxers!!!! Grandpa said "that is why God made belts and suspenders". Lol! Tia informed grandpa that he should not worry that she would make sure in the future that he would always be wearing a belt or suspenders! lol

They were both touched by how thoughtfully and quickly the caregivers in charge helped deal with such an embarrassing situation for the older gentleman. Rick had a hard time though as in his current situation of helplessness such things are not unimaginable for him.

Joan here...Lots of white fully stuff outside.

To give you an update on Rick...he now weighs approx. 162 lbs. his legs are very thin and not much muscle mass. He was officially measured for his motorized wheelchair yesterday. The occupational therapist that came out to do it was very helpful in discussing all kinds of aids available for Rick now and down the road. We have been so very pleased with the health care people who have come here to meet with us and help us with Rick. It will depend on how fast the papers get through the system that will determine when he will actually get the motorized chair. They are putting in right away for a tilt one due to the nature of the disease. The sooner he gets one the better. It will help to conserve his energy if he doesn't have to manually maneuver the wheelchair.

Every time, he meets with any of the health people he has such a bad night emotionally. Nothing to do with them personally but it is a reminder to him where things are and where they are heading. So it is stressful in its own way for us.

Nothing like talking about electric hospital bed being put in your suite down the road...then really thinking what that means....Rick being bedridden and me not being able to share a bed with him!!! Rick says he is going to ask if the hospital bed can come in a double size! I thought that was so sweet!

This morning Rick and I went to the car and it was completely snow covered. As I was brushing off all the snow the neighbours son came over and offered to have the drive way cleared. We were so amazed and thankful. He is the same man who called Rick earlier this week to see if he just wanted to go for a ride in the area. He is just like the guys Rick grew up with in Sperling and Rick feels at home with him.

Grant and Colleen and kids picked up "the beast" to get the final stages of it road worthy! So once we get it safetied you will see us coming for miles!!!

Last week I had a real bout of loneliness...I just wanted to go home! I thought about that for awhile what that really meant. I realized "home" to me at that moment in time was back to where Rick and I felt like we had normal lives. Where he wasn't sick. Where we could just get up and go and do and not even think about it. Back to where we had all kinds of plans together. So once Rick and I talked it all over, and of course, had a big cry and stopped feeling sorry for myself ...then I was able to pull it together again.

My heart breaks every day for my husband as I see him try and do things, the effort it takes for him to even get out of a chair, the wasting away of his body, the sadness and terror of what lies ahead. And how he doesn't want any of this either. And as strong as I want to be and am at times...I am still me and have my own feelings to deal and cope with. So every once and awhile I have my own little pity trips. Hopefully, they will always remain short trips! so I can focus on my husband!

The physiotherapist had to do a quick test on Rick with his scooter to see how he can drive it as part of the requirements for applying for a motorized wheelchair. Well.........Rick being the country boy that he is with all that driving of machinery growing up you can well imagine that he did loop-de-loos with his eyes closed! A part of me just ached seeing how it has come to this for him and how awful this must have been for him. We just can't believe this is happening!

Rick here...ALS ad on Youtube

The ALS Society of Canada has launched a new public service advertising campaign created by Lowe Roche, Toronto to raise awareness about Amyotrophic Lateral Sclerosis (ALS) and the ALS Society's efforts to fund research towards a cure for the disease.

Created by Lowe Roche on a pro bono basis, the 60-second television public service announcement, “Head and Shoulders” is composed of a montage of clips, each one focusing on a man with ALS in emotionally charged moments as his disease advances to different parts of his body. Set to the children’s song, “Head and Shoulders, Knees and Toes”, as the spot progresses, and his conditions worsen, the cheerful singing becomes a sad whisper.“We chose to create a spot that was musically and emotionally driven to raise awareness for ALS,” said Christina Yu, Vice President, Creative Director, Lowe Roche. “This song is one which everybody can relate to and we wanted to use it unconventionally to illustrate how this disease eventually affects every body part ALS, also known as Lou Gehrig’s disease, is a rapidly progressive and fatal neuromuscular disease that causes the degeneration of nerve cells in the brain and spinal cord. As the nerve cells die, people with ALS lose control of their muscles, which makes breathing, eating and even smiling almost impossible. Eighty per cent of those diagnosed will die within two to five years. There is no known cure or effective treatment of ALS.

Here is the link to the ad on youtube. http://www.youtube.com/watch?v=g0Q4kIx95aU

Rick here.- Remembrance Day in Whitemouth

Wow...were Joan and I impressed! Took in the Remembrance Day Service in Whitemouth today....and do they do it up right! The Museum Society here goes above and beyond!
The local Mounties in full red dress, Service members from 17th Wing in Wpg., Air Cadets from Beausejour , Vets, 4-H kids in abundance ( did I mention the largest 4-H club in Western Canada?) placing at least 35 wreaths, the local choir, the Last Post by trumpet, coffee and donuts afterwards from the Lions Club, etc!!!!
Made me feel like I was back in Sperling - except for the Mounties :)
The community spirit here is extra-ordinary....made us so proud to be Canadian!
Also a powerful reminder personally that whatever I may be going through with this disease pales by comparison with the sacrifice and suffering that so many Canadians have gone through for our sake to buy our freedom over the years!
Way to go Whitemouth!!!!

Rick here...a song with a lot of meaning to me right now!

One of my favorite songs...has a lot of meaning for me right now...Feel free to hum along :) my compliments to Kenny Rogers.
"On a warm summer's evenin' on a train bound for nowhere,I met up with the gambler; we were both too tired to sleep.

So we took turns a starin' out the window at the darkness'Til boredom overtook us, and he began to speak.

He said, "Son, I've made my life out of readin' people's faces,And knowin' what their cards were by the way they held their eyes.so if you don't mind my sayin', I can see you're out of aces.For a taste of your whiskey I'll give you some advice.

"So I handed him my bottle and he drank down my last swallow.Then he bummed a cigarette and asked me for a light.

And the night got deathly quiet, and his face lost all expression.Said, "If you're gonna play the game, boy, ya gotta learn to play it right.

You got to know when to hold 'em, know when to fold 'em,Know when to walk away and know when to run.

You never count your money when you're sittin' at the table.There'll be time enough for countin' when the dealin's done.

Ev'ry gambler knows that the secret to survivin'Is knowin' what to throw away and knowing what to keep.'Cause ev'ry hand's a winner and ev'ry hand's a loser,And the best that you can hope for is to die in your sleep.

"When he'd finished speakin', he turned back towards the window,Crushed out his cigarette and faded off to sleep.And somewhere in the darkness the gambler, he broke even. But in his final words I found an ace that I could keep.

You got to know when to hold 'em, know when to fold 'em, Know when to walk away and know when to run.You never count your money when you're sittin' at the table. There'll be time enough for countin' when the dealin's done."

It is kinda funny...when I saw my doc a couple of days ago...he said "We all get different cards, you just have to make the best of them and then at the end know when to fold them!" No wonder I like this guy.

Rick here...Okay okay I got it--- blog more :) I heard what you have been telling me!!!

I finally met with my new doctor here in Whitemouth today. He is a great guy-a really straight shooter which is what you need when you have ALS. You don't have a lot of time to screw around! The rate of progression of this thing isn't slowing down one bit! It is a steady and it seems quickening slide downhill. We spent time going over advanced health care directives, end of life issues, do not resuscitate (DNR) orders and etc. Pretty sobering stuff! It still seems so unreal! I don't think you ever get your head around this thing.

The message is clear though...time is of the essence! As I've said before...nothing clarifies your mind like knowing that you will be shot at dawn :)
It is funny...things that used to be important don't matter much anymore - and things I used to take for granted are now VERY important!
When you think of it, all of our days are numbered - it is just in my situation that I have a little more accurate time line to work with than most:)

Joan and Rick here...Monday is Uncle Vie's funeral

Our thoughts and prayers go out to Aunt Evelyn, Phylis, Bruce, Kim, Cindy and Sheila and all their family. We are happy to know that uncle is over his suffering but we are sad that he is gone.

Uncle Vie taught me how to drive years ago. He took me out on regular weekly lessons. He was exceptionally patient and kind with my erratic driving skills at the time. He always made me laugh in the process. On the last day of my lessons...I was so nervous about my test the next day that I asked him if he thought I would pass. He stopped and thought for a moment then looked at me and said...you should probably wear a really short skirt! That was uncle!!!!
For those of you who are are wondering ---did I pass the test! Yes, first time!

Rick and I also were so pleased that he and auntie and family joined us on the Whitemouth ALS walk this spring. Rick and uncle had a few good laughs that day...as usual!

Joan and Rick here...#10

We are so excited to announce that our daughter Jenn and husband Clif are having our 10th Grandchild!!! They are expecting for June!!! hmmmm my birthday, our grand daugther Georgia's birthday, and Clif's dad's birthday on the same day in the middle of the month !!!!!

I never would have thought Jenn of all people would be having 3 children. Growing up she was the baby in the family, the only girl...wow...you just never know in life!

Rick and I are so excited and thrilled...I just wish as a mom that I could be there more for her right now and in the upcoming months.

Today, Rick and I discussed what is happening with him again. Every day is a new day with ALS

He has agreed now that I will shampoo his hair, put on his socks, and towel dry him after a shower. He has realized that this would help him conserve his energy... never mind the side benefits...lol!!!

Rick here...tombstones & cemeteries

Well...Joan and I got our tombstone - or to be politically correct- 'memorial stone' done! We had actually talked about it for a few years and planned on getting it done but never got to it - and that was before we knew I was ill. I am glad we had talked about it back then - makes it a bit easier now. I am desperately trying to get through all of these things so that Joan will not have to be doing it on her own. There will be more than enough for her to deal with later.

I am really pleased with the stone ...I believe it really catches the essence of who we are. We thought about it a lot! Joan and I got a plot at the Sperling Cemetery from Dad 10 years ago...will be in the same family plot as a lot of Fewster's - my Great Grandparents, Grandparents and Dad & Mom (who hopefully they won't be there for a long time yet! )
A big thank you to the folks at Carman Granite for doing it so quickly. They worked a miracle and got it in before winter....told them I really wanted to see it from the top side if I could :)

When we went out to check it out for the first time we wandered around the cemetery for a bit...as we often do..( we go out there for a cold beer with Grandpa and a bunch of the others fairly often)...man...I know so many folks out there- a lot of old friends!
Kind of funny...growing up in a small town..many of my good friends, hunting & fishing partners and people who ' watched out for you as a teenager' , gave you hell if you screwed up, or covered your ass if you got caught doing something stupid, or pulled you out of a ditch and didn't tell your Dad :), etc. were 60 and 70 years old...age and status didn't matter...quality of character did..Growing up in Sperling was a real gift!

Got quite a charge out of seeing that one of my best friends growing up - Kent Cretton - has a stone set up as well...hope he doesn't need it for a loooonggggg time tho! Kind of funny...his is diagonally right across the cemetery from mine...we've got the corners covered Kent - kind of like shooting pool :) You were always good at corner shots! We used to shoot pool by the hour - halfers- a pool game was 25 cents - lose and it costs you 15 cents - win and its 10--if we had 25 cents each we could squeeze in 4 games...then if no one wanted the table we could usually play for free once we were out of money- thanks to some of the old guys who covered us. We walked many a mile collecting beer bottles to pay for our pool playing. I knew Kent's grandparents really well- used to go there for smoked tulibee for lunch with Kent as a kid...and Gib & Jean of course...Xmas wasn't Xmas if they did not stop in for a drink ...Kent was the inspiration and moving force behind 'Team Sperling' at the ALS walk in Whitemouth this past spring...thanks again...we still have a ' crop inspection' tour to do before its too cold! He and I used to ride out to the cemetery on our bikes and sit under the big pine tree by the tool shed....far as I know the pine was planted by Doc Martin ( another story) ....hmmmm...as I remember Kent & I were probably sneaking a pilfered smoke under there ....LOL. Fewster's and Cretton's have a lot of history together (as do all long time Sperling folks of course). I remember when Dad and Gib found poor Mrs Ribordy and Maurice out at their farm when she passed away...another story...and of course there were the bonspiels, hockey( the famous 'snakepit'), the pub, crop inspecting, ...hmmmm...tons of stories!!!!!! Corner Gas could easily have been written about Sperling but it would have been a LOT funnier - and much more touching and real!!!
Anyhow...more cemetery stuff later :)

Rick here...Wow....what a woman!

Well...we are here and getting settled...thanks to all for your help! We couldn't have done it without you!!!

My heroic wife has lifted, toted, sorted and hauled stuff to the point of total exhaustion! It breaks my heart to see her have to do all of this by herself! She started the day yesterday by hauling 3 - 50 lb bags of potatoes out of the truck and across the garage and then on to a full day of lifting and sorting boxes. That was always the stuff I did...now I can't carry 5 lbs up a 6inch stair....it is VERY hard on both of us....both physically and emotionally. She has to carry the weight of doing all the physical stuff- and I mean ALL of it...., deal with my daily deterioration and what we know lies ahead very soon and all the horrible pain that brings, help me with the most basic personal tasks, deal with having moved twice in a short time, start to adjust to a new community, and on and on! Those of you that know her understand that Joan is a vivacious woman of indomitable spirit, incredible energy, a tireless worker, fearless determination, generous beyond belief, and , oh yes...did I mention she has a touch of ' Burnell' stubbornness :)
I am so afraid for her though ...she pushes herself so very hard! I feel so very helpless when I watch what she is going through. I wish with all of my heart that I could somehow relieve some the of pain and anguish that all of this brings her.

When we sort through our stuff it is all memories - when Joan and I started out we started with nothing in the way of possessions...bought our first air bed and 2 cups and plates at Army Surplus across from the apartment we had 12 years ago:) Joan has a way of making the very best out of whatever we have.. whether much or little...it is a gift that she has!
As we sort the boxes every single thing...even the 'junk stuff' has memories. Things the kids and grand kids played with, gifts, mementos, etc. To us all of it is important because it is not just 'stuff'...it is memories!

We make 3 piles...the first one to give away...the second one for now ...and the third one for later when I am gone and Joan will have to set up on her own. We cry a lot when we pack the third one:( She often looks up at me, cries and says...you won't be with me when I unpack this..and then I cry too. This disease is so hard! Joan gave up so much when we got out of the house. We are so thankful for the kids opening their home to us cause otherwise I would soon be in a care home....but the horrible downside is that when I go then after a bit Joan will have to try and restart a life. Quite different than carrying on in the same home, neighborhood,etc as so many of our friends have sadly had to do. She willingly makes any sacrifice she can to make things better for me, and to insure that we are able to be together right to the end. She is the most selfless person I have ever met!

We are obviously not doing this cause we want to ....it would be different if we were 75 and downsizing...we wanted to have a home set up for fun with our grand kids ( 9 and still counting) , a place for family gatherings, etc.
This disease was not in the plan.
I love her with all of my heart!!! I think that this disease is harder on the spouse than it is on the person with it! The stress is beyond belief! On top of everything else Joan has been suffering greatly through all of this with a painful case of shingles...no doubt caused by the stress. Please pray for her!

Hopefully now I will be able to be more regular blogging as we are not running quite so hard.
I'll try and do a bit of catch up stuff too.

Joan here....We're offically here!

Congratulations to Rick's mom who just turned 80 years old!

It is almost exactly a week since I last posted. Since that last post. My sisters, brother in laws and mom came and helped us move out of the apartment. It has been a long week of trying to move boxes around and trying to find a spot for "the stuff". I still have a mountain of boxes piled in the garage that have to be gone through. My body is so sore from lifting! I haven't lifted so much in my life before. It is so strange to have Rick with me but unable to help with anything. I have been busy with the move and also in taking care of my husband. He needs help to get things etc so by the time night rolls around I am pretty tired! It is so discouraging for him also. So we both have been adjusting! We have to keep reminding ourselves that we are on the same team and we are not the enemy here it is the disease!

I found myself so exhausted and at one point when I walked past the wheelchair I just kicked it! Of course Rick wasn't around when I did that! I was just so frustrated at times! I am thankful that we have such an aid of course to make a way for Rick to get around the suite but I don't like what it reminds me of.

I haven't had too much time to think of the actual move right now because of just being plain old tired!

Our friend Dave spent three days here with us getting some things done in the suite. We were so happy to see him again!

Rick is having a very hard time this past week not being able to do things to help with the move. I woke him up again this morning as he was having really bad dreams again. This time he was laying in a hospital bed and the bed was laying on quick sand and slowly sucking him in. We both agreed that we still are in denial and don't even want to think about what is happening. It is just too painful!

On the bright side of things...Rick took his scooter up to the grocery store yesterday with little Kate driving! He had all kinds of people waving and stopping to talk to them. People know who we are but we don't always know who they are yet. Small towns are so much different than city life. You can run but you can't hide! :)

We are the proud owner of a 1980's van with an electric chair lift. It is so huge! I call it "the beast" or "the bus". Depending on the mood I am in. I will probably have to take special driving lessons to drive it. You will know what I mean if you ever read the first time out with Rick and his wheelchair. I feel sorry for my husband...he is such a patient man! I thank God for that!

Rick here...the terror of ALS

Well...a few thoughts on terror. Been doing a ton of thinking and talking with Joan about this. The terror that grips you with this thing has really little to do with death. I have faith and though there is grief to deal with there is really no terror concerning the hereafter.

The terror of AlS lies in the progressive loss of ability and function and the increasing speed at which it is happening. Right now I am only able to go a few feet with the cane alone on level ground...other than that it is the walker and scooter. More than 4 or 5 stairs are impossible without extreme effort. Being measured up for a power wheelchair in the next few days, so that is next. I have actually been able to deal with the loss of legs pretty well tho...I guess cause you see all kinds of folks dealing with that all the time.

The really scary thing for me is that my arms and hands are starting to go. The way it has worked with me is that first I have muscle twitching (fasiculations) in an area..say a leg or arm...followed later by cramping and loss of strength that just goes on and on...not fast but worse every day. Been experiencing that for some time now in my arms and hands,been starting to drop things, knock stuff over,etc. It is weird...your brain thinks you have lifted your hand 6 inches so you swing it over and discover as you knock over the coffee that it only went up 4 inches...makes a mess but so far at least I've missed the keyboard :)

The muscles in my stomach and chest have gone badly...leaves me with quite a little beer belly for the first time in my life :) The stomach muscles are the ones that push your diaphragm for breathing and coughing so it is not good though. When I try and cough now it is very difficult since there is no power behind it...not looking forward to colds that is for sure.

Been having some scary swallowing, choking things going on as well. Creates a gagging session that can go on for a while and leaves me pretty well unable to talk.

Been having the first cramps in my throat which is very weird too...it just kind of paralyses my throat muscles and makes it impossible to swallow or speak till it passes. Joan also noticed the first twitching that we have seen on my face this week....agghhhhh!

It is progressing on all fronts at once- some slower and some faster- but still all at once. And this will sadly soon be the good old days!! That is the terror of this beast.

When I compare how I am now to how I was at diagnosis Feb 1 this year( when I didn't even need a cane) ...and then extrapolate the same progression rate ahead another 8 months it is not a cheery thing:(

Joan here....Thanks Garth, Colleen and Grant & Jenn!

We are so thankful for the wonderful surprise of Rick's bro coming and building a deck so Rick can actually go in the backyard with his wheelchair now. Colleen and Grant supplied the awesome cedar to build it. Garth and Jake ever so carefully lined up the deck to the door threshold so Rick will have a smooth transition for his upcoming power wheel chair. We used to refer to it as an "electric" chair...but got corrected really quickly! lol

Rick is amazed at how wonderful the side arms and toilet extension that we installed around the toilet has helped him. This equipment was donated to us. To the uninitiated, a toilet extender, sits on top the toilet seat...kinda like a 6" thick potty seat. It lifts you up which is great for him....but whoa for me... I feel like I am having a mountain top experience when using it. Sadly, Rick is unable to get up from a regular toilet by himself anymore. He needs something to pull himself up with.

We have been trying to get ourselves moved from our apartment and emptying storage units , warehouse, etc. So we have been out of sight for awhile. We keep taking trips with Chad's van out to Whitemouth full of stuff. A slow process but I think that is what we needed right now. A fast move would have been just to hard emotionally. We are slowly letting go! We have been lingering and enjoying every second where we are at. We know when we move...we will never be back here again together. Jenn has been helping us with her trusty truck in moving a lot of our stuff also. Most of the stuff is just getting rearranged to different storage places as our new home can only take a bit of our belongings.

Last week, Rick and I were asked to speak and share on what we are going through at the 3 rd Annual ALS Conference held in Wpg. They had guest speakers from all over. A Winnipeg scientist who is working on a cure for ALS, a representative from ALS Canada and ALS Manitoba, Health Care providers, Professor from UofM speaking on end of life choices, Physicians, Nurses and some ALS clients. As I sat up front looking at the crowd I just could not believe this was happening to us! Here we were Rick and I sharing about ALS and how it has affected our lives to a group of professionals and etc. We have met so many other people there with so much pain also.

Tuesday 12:00 midnight we are officially out of here. I haven't even begun to pack a stitch of anything here in the suite. I have done everything to put it off! But my time has run out.

Rick here- finally

well...I'm baaccckkkk! Kind of!
Been a VERY tough few weeks and I have avoided blogging as it has been pretty grim in terms of trying to put anything down in a meaningful way. For a variety of reasons. I have made notes tho so may be putting a lot of stuff up now to catch up. I determined when I started this to be honest but I find that the honesty I feel that would most help people is set against my predisposition to put a positive spin on things. It creates quite a conflict. I always coped in life by sucking it up, working harder, going faster, doing whatever it took to make it work, sacrificing, etc. Sadly, with ALS, that approach does NOT work. Sooooo..here we go...

I have learned what anticipatory grief is...not pleasant at all....and I am insufferably positive so I can hardly imagine what a person more naturally given to sour thoughts goes thru!!

I am learning the art of receiving as opposed to giving - even very basic things.. Damn humbling to say the least! It is pretty hard to get used to kind little old ladies opening doors for you and your 5 year old grand kid lifting the box cause you can't....agggghhhhhhh! And these are the 'good old days' No one has to wipe my bottom yet but that is in the too near future. Good grief! This is a wicked disease!

Every moment of every day I look the tiger in the eye! The only few moments I can feel normal are in the night if I waken, don't move a muscle (cause if I do I cramp up) am snuggled to my sweetheart Joan and hold her. For a minute or two I can pretend that all is well and that I am not ill. The second I move, shift my weight or wiggle then it is right there again. I can't stand, move, raise a hand or turn over without fighting it. The weakness is pervasive - affecting every movement. The swallowing and choking issues have started as well....mild for now...but there none the less.
Anyhow...this is a start...more later.

Joan here...A ray of sunshine flutters into our day!

We have been busy re arranging all our "stuff". Takes forever to go through and decide what we will be needing in our new place. Jake and Val and family have pretty much exhausted themselves trying to get the suite done in time for us to move in at the end of the month.

Rick and I have been struggling with all the changes he is experiencing! I live just a second away from crying at any given time. I came down with shingles just recently...hmm...stress anyone???

Rick still insists on bringing me my cup of coffee each morning so we can sit in bed and talk and talk and talk. That has been our thing for years! Only now, I watch him struggle to pull himself out of bed and try and walk to get to the coffee pot. I end up crying each morning as I lay in bed and watch him go through the process just to bring me a cup of coffee. The realization of how he struggles just to do that and what yet lies ahead is heart wrenching.

Amidst all of the sadness and tears....a ray of sunshine flutters into our day! Our little grand daughter Katie announced to her grandpa Rick and I that she was giving him all her "tooth fairy" money she had received from loosing her first tooth. She was giving it to him so he could give it to the ALS so they could find a cure for him!!!! She had her money in hand and ready to give it all away!!! We were so amazed by her love and care for her grandpa!

Joan here....Thanks family for your love, help and support this weekend!

Rick and I were very surprised at the family that came out this weekend. Our wood is all cut, split and piled for the winter. The sheeting and insulating is all done so we have a place to move our junk for storage. Mom cooked and prepared meals for all of us. We had such a fun time all being together. Thanks everyone for all your love, help and support!!!!

Today, Rick has resided himself to the use of bed side rail and toilet hand rails to pull himself up with. What is so crazy about this disease is that if you look at him sitting on his scooter or in a chair he looks like he is in great shape. But when you actually see him try and do anything it is so shocking at the weakness in his body! He felt so helpless this weekend with everyone running around and doing things and he could not help. I must say though he enjoyed the pointing with his cane when it came to instructing the girls where to pile the wood etc. lol!!!

He stopped taking his Lithium two weeks ago and we have now discovered that he has a clearer brain and is feeling more settled. We thank God for that!

PS Forgot to mention that Nick was awesome at "Elvis on the Red". Thanks Nick! If you want to check him out www.nickakaelvis.com

Rick here...

Hi All...well......have not blogged for a while as I can't stand to...I committed to Joan that I would only blog until I can truthfully and it has been real hard! I am the worlds best at avoiding reality but it is not working anymore! Life is shit!
Been in a hell of a slump for the last 3 weeks....I am the worlds best optomist but the beast has been on top lately.

I can not believe how fast this is moving...that is all I can write right now!

Rick and Joan here...Do you got connections????

Hi there,

Some of you have asked... do we need help???
Yep, here it goes....

1. Anyone who can help hang osb board, insulation and vapor barrier for interior of garage...our future storage place.

2. Anyone who can build a deck....so Rick can go in the back yard from our suite in the fall and spring.

3. Anyone who can split wood...it is our heating source for the winter.

If you know of anyone who can help or be hired to do it do please let us know....all our leads have gone to a dead end.

Thanks!!!

Joan here...Rick promises to write soon!

Friendly reminder that the "Elvis on the Red Paddlewheel Queen cruise" is on next Friday night! For more info or tickets give Rick a call or email.

We are moving at the end of the month. Jake has the lift built and installed! We have milked every moment of living in the city to the fullest! Summer in the city has been awesome for us! It is so hard to think of moving again right now and especially knowing what awaits us down the road!

We just celebrated a wonderful 10th Anniversary in a Hawaiian Theme suite! My romantic husband had champagne, dinner and breakfast served in our room, and presented me with a beautiful diamond necklace. There seems to have been some confusion that we actually went to Hawaii for the weekend lol!!! We wish!!!

We really enjoyed ourselves at the Whitemouth Museum Heritage Day Church Service. Rick spoke so well as usual. I am so proud of him! They will be sending the offering taken to the ALS Society of MB.

Rick has been asked to do some reading in the school also. The school adopted him last spring and the students will be in contact with us throughout the school year. It is quite an amazing thing that they have chosen to be involved with us in that way.

We have had numerous people from the community drop off health care aids at the suite for Rick's use at some point. We are so moved by the care and support of the community.

Now...for what you really probably want to know...how is Rick really doing???
He has given up hand shavers as he has cut himself a few times and officially has resigned himself to an electric shaver. He says he actually can't believe how nice it shaves. The shaver is actually very light and is cordless. His walker is his prized companion now.

With the reality of his fingers and hands starting to not work normally at times it has ushered in a new sweep of loss and realization of what shortly lies ahead!
We do not have full nights of sleep. Rick wakes up each night from the terrible dreams he is experiencing as a result of his body changing before his eyes. His stomach muscles have really let go and for the first time in his life he can identify with a woman's pain of stomach muscles letting go after having children! lol He cannot cross his legs without having to lift his leg over the other one with his hands. He is noticing that at times he is having a harder time to swollow or cough. It means that those muscles are starting to go also. We spend many a night holding each other, praying, talking and comforting one another!

I can't even imagine anyone going through this if they did not believe that God is a good God! Otherwise they would be in such anger, hate and blame towards God for what is happening. We are both at peace with God just not with the disease itself! I hate day by day watching it destroy my husbands body and what it is doing to attack his soul! I am so thankful that we have the relationship that we do have. We can talk about everything...the good...the bad...and the ugly!

Thanks for remembering us in your prayers!

Joan here...Not a good week!

Wow...August 23rd already! This week has been once again a difficult week. I almost hesitate to write anything. Rick had an evaluation this week. He has been feeling for awhile that he is not doing very well. Every time I watch him try and walk I just quietly cry to myself. I cannot believe this is happening still. I guess I will never accept it! It is getting harder and harder to write anything down.

His cane will not carry him much further anymore. He will be using a good "old" walker to give him balance. :( it is hard for the both of us to accept this. Both his arms are not doing well. We know now it is only a matter of time before they are like his legs.

We received an email lately from a group from Whitemouth who are dedicating their offering this year to the ALS Society of MB and want Rick to accept it on their behalf. That is so kind and generous of them.

We will be staying in Wpg still for awhile. The washroom is not completed yet. The kids are doing the best they can.

Rick is really struggling right now! We both can't believe this is happening!

Fund Raiser info......Elvis...September 19th on the Paddle Queen.....Includes Dinner, Dance and Elvis...all for only $48.00 each ticket. Please let us know if you would like some tickets. We can really say from experience that the ALS Society of MB have been sooooo supportive and helpful to us....we really encourage everyone to come out and have a great evening of fun!!!!!

Joan here...River boat cruise with Elivs! Fundraiser for ALS Society MB. September 19th.

Hey everyone!!!! Mark your calendar...Fun evening ahead!!!! Special fund raising event on the Paddle Queen Riverboat on September 19th. Dinner and dance. Elvis is alive and well!!! Nick Drobot "tribute artist" http://www.nickakaelvis.com/ will be entertaining us for the evening. As soon as the tickets are available I will post the info or you can email me for the information on the tickets. Price for the evening will be very reasonable! It should be a blast! Nick performed in Whitemouth last week and he was awesome!!! He ended the evening with a bunch of people..or should I say women!!! lol screaming encore! He is also performing at the Elvis Fest in Gimili next weekend.

Rick and I have been enjoying every moment of life! We again are so grateful and would like to mention all the retail outlets, Home Depot, Revy, Walmart for their customer care of providing scooters! This enables Rick and I to roam their outlets. Sometimes we have to wait for one as obviously their are others with the same need.

We are spending more and more time in Whitemouth. Slowly, we are adjusting in our minds to where our new place of residence will be. Because we are such city slickers...there is an adjustment. The town people that we have meet at various functions etc are extremely friendly and awesome!!!

Rick gets through the day and doesn't have much to give beyond that. He desperately wants to be of help to Jake and Val as they continue with getting our place ready. He doesn't have much strength in his arms and legs so he has chosen to mow the lawn on the riding tractor as his contribution of doing something. He loves it! The only thing is that yesterday, I needed his help in the middle of him mowing. He stopped on a bit of a slope. When he went to get back on the mower again he could not! I watched in horror as he walked around and around the mower trying to pull himself up on the seat of the mower. He finally did it! I just stood there and cried!!! After that I was no good for nothing for the rest of the evening. We both were at lost for words!!! We spent a lot of time with tears running down our cheeks!

Thanks again to all of you for your love, prayers, help, and care. Thanks Jake and Val for your dedication to making a special place for Rick and I.

As I write this, I cannot contain the emotion and tears as I remember what took place last night. Rick was sitting in his wheel chair. Jake, Val and I were talking to him. Jake said to Rick "I really don't know how much you weigh and I don't even know if I could pick you up". So with that, Jake went over to Rick and picked him up and held him in his arms. I was so moved by the love, care and concern from Jake for his dad. He wanted to know if he could handle Rick's weight down the line. Rick is a very slim man and becoming slimmer each day but Jake wanted to be assured that he could pick Rick up. We all know down the road soon Rick will need some real hands on.

We apologize to everyone if we are scarce most of the time.

Joan here....ALS brings a new meaning to Belly Dancing!

We are enjoying each and every day going out for an evening walk together! The summer is going by so very fast! While we had our morning coffee we noticed that Rick's stomach is fasciculating unbelievably. I teased him that he brought a new meaning to belly dancing!

Tonight, my youngest sister walked with us to the Forks. We took turns pushing Rick as it is quite a hike from our place. There were two guys walking ahead of us playing musical instruments as we wound our way along the river. One was playing the mandolin and the other one the flute. They played Irish music the whole way as we walked behind them. It was so wonderful to hear them play as we walked. It was like a special gift to us.

My father passed away 17 years ago and so Rick never did get a chance to meet him. What is so strange is that Rick has had three dreams now where my dad comes and talks to him about things. When Rick describes to me what my dad says to him it is so incredible because that is exactly how my dad would have talked and expressed himself.

His foot cramping is getting worse and his fingers in his left hand are not working properly. It is just more reminders of where this thing is headed. It makes us even more determined to enjoy each moment we have together. We are so thankful for the friendship and care that people have extended to Rick. These people really have given him perspective on so many things that he is dealing with.

I am very proud of my husband and how he chooses to get through each day with such faith and courage despite what each inch of his body is screaming out to him.

Joan here...Still in Winnipeg till end of August.

Thanks for all your good wishes! For those of you who were wondering where we are even living these days...

I finally got a minute or two to just jot some thoughts down. It has been a busy summer. We have had a lot of company stay over which we do really enjoy. Rick and I decided it best to stay in the city until the end of August. This will give us all more time to get ready to move into our new place. We really enjoy the city so much and love to go for evening walks and dinners together so we are making the most of it while we can!

Jake and Val can't work any harder or faster with both having a full time job as well. They haven't even had a summer themselves. It has been a sacrifice to both them and their young girls this summer not to have holidays or outings as a family. We are hoping this will change really fast once we are into the suite.

As far as Rick is doing...the disease is never going the right way. He is having problems with dropping things. Yesterday, he was trying to help put dishes in the sink and dropped a glass. For both of us it puts us in an emotional downer as soon as something happens. It once again reminds us of what lies ahead. He walks slower and slower with his cane. He has to use handrails on the few stairs that he is able to climb otherwise he would not be able to get up them.

One of the things I still am not used to is getting ready to go out. I always allow extra time but it seems like it is never enough extra time to get to where we are going. Normally if the elevator is busy we could do stairs as an alternative but we can't do that anymore. Sometimes we wait a long time for the elevator. We took the kids to a movie today. They had to take Rick in a special elevator and it was a small one so the gkids and I had to walk up the stairs on our own. We waited in our seats till they brought him up. It is getting harder to be a couple and I find that very frustrating and lonely at times. We used to hold hands all the time when walking and now his scooter is going either to fast or too slow and making it difficult to be close.

He still has regular dreams of not being able to speak. He woke up the other morning after having another one of them and started practising to moan to see if he can't speak down the road, could he at least moan or make sounds to communicate. This is so all beyond us both!

Rick here...The last dance?

Besides the bad dreams...Each day is a challenge! On a different note...

Just a couple of seconds ago we had a loud knock on our door..."Security here!" We were in shock! What is going on??? here when we came in tonight with our groceries, wheelchair, etc. we left the keys in the door! Joan actually has the habit of putting the keys in the door and wheeling me in. It is easy to miss pulling the keys out after she has me in the apartment. One of the trusty security guards on our building noticed it on his rounds! All three of us had a good laugh!

Back to the challenges...had a great time at Josh and Nikki's wedding! What a fun night! For me though, it was quite bitter sweet. The sound man was great! Perfect music! Great location! lots of fun!!! and I can't dance with my sweetheart! :( Normally, Joan and I open the dance floor and close it at the end of the night! Sadly, no longer!!!

Thanks Naomi, for your gracious 30 second dance with your uncle! You were very kind to ask me. I was so honoured!

At the end of the night, I asked Joan for a slow, slow, slow, dance (you need to have ALS to know what slow dancing really means). We danced (not long), we kissed, we cried!!! My God...a few short months ago I could have never imagined this happening. Joan and I closed down the dance at the German Club with her folks last fall...danced for hours! Joan and I love dancing together!!!

Each day what I am dealing with becomes more real in an unbelieving way! Almost each and every day seems to bring with it a subtle loss of ability of some kind. Nothing seems to happen fast, yet each day is slightly harder.

Today, while trying to get some stuff picked up for our suite, we discovered the wonderful services of scooters at our local Canadian Tire, Rona, and Home Depot! We never realized that they even had such services. Now I can not shop with out them unless Joan pushes me in my chair throughout the store. No fun for either of us! We are so thankful for businesses who have agreed to provide such a service!!!

If they have a comment card...hey take a few minutes for me and people like me and let them know that it is much appreciated!!!

Joan here...Just scooting around!

As of today, Rick is an official scooter tooter! He picked his scooter up through the ALS Society! The scooter has been wonderful to get Rick and I out and about in the wonderful sun! The wheelchair is too difficult to push for any long distances. Using the scooter means he has legs to walk again for a distance!

We are so excited that the garage is up at the kids place now. That means we will be able to move some of our "stuff" into storage there and have a place to park all the vehicles...scooter, wheelchair, golf cart and of course our car! The kids got a great deal on a golf cart...another toy for Rick to scoot around in also. Too funny! This is all way beyond us in our thinking that is for sure!

Both Rick and I have emotionally raw days at times! He has been experiencing some really terrifying dreams which I usually wake up from all his moaning and then wake him up from them. One is he is laying on the sandy beach so he can enjoy the feel of the sand and be near the water. Because he can't move in his dreams when the tide starts to roll in he is paralyzed with fear that he won't be able to get up and move away and he will drown.

Another dream is he is sitting on a deck and enjoying the outdoors. No one is on the deck with him and he is totally paralyzed sitting in his wheel chair. A big black crow lands on his chest and starts to stare at his eyes. Rick lays there thinking that the crow will pluck out his eyes and then he will be blind along with everything else.

Joan here....We made some awesome memories!

Wow! We had a blast with little Katie. We laughed and laughed and laughed. She has her own little way about her. We saw the moutains, the animals and of course the airplane ride! As soon as we landed in Calgary without a moment's hesitation out it came loud for everyone one to hear..."now that was a smooth landing!". We all laughed and the stewardess took her to see the pilot and made sure that Kate told him what she thought of his landing!

There are too many incidents with her that were hilarious to even begin to write about. Amidst the humor and excitement we also faced once again some very emotional moments with Rick. We managed to arrange a tour on the icefields. We were met with so much favour. Rick, Kate and I basically had a private attendent at our side through the whole tour.

I watched my husband being lifted on a lift onto a small van who then took us to the larger truck with the rest of the tourists. From there he was lifted back up into that truck that took us up to the glacier. As I watched him going up high into this huge truck on the lift I just started to cry. We both still cannot believe this all!

So between Rick and Katie I came back pretty exhausted actually. More emotional than anything though. Everytime we went to see something we left not knowing if we would ever be back there together again! I cannot even imagine how Rick felt as he gazed at the moutains and the beautiful streams.

Joan here...Off we go again!

We started a little tradition 5 years ago. We decided to take each of our grandchildren for a trip with gr and gr just as they turned six years old. We ask them where they would love to go for a little trip with gr and gr. This year is little Kate's turn. For those of you who have never met her...She is so full of spunk...talks to everyone she meets...and snuggles to grandpa every chance she gets...oh yeah...and doesn't stop talking except to take a breath of air! When she has something new and you never know what....she starts her sentence with "Did you know???

Kate informed us that for her trip she wanted to go on an airplane ride, see mountains and animals! So, as best as we could try and accommodate her wishes we are heading to Calgary/Banff. This will be an incredibly interesting trip with her along.

Now, that I have the wheelchair thing figured out it should be relatively simpler to get around. She already knows that she is responsible for toting her own little bright pink suitcase complete with wheels and handles!

Her mom and dad avoided telling her the date of departure until this last few days to keep the excitement level under containment! She knew there was a trip coming but had no idea what month or what day!!! Well, you should have seen that little girl's face when her dad and mom told her! Outside of bouncing off the walls she pretty much did everything!!!

Rick and I were concerned about using the grand kids names on the blog. So one day when they were here and reading the blog I told them that I had not used their names because I didn't want to embarrass them. Both of the girls piped up and said "Grandma it's okay to use our names we really don't mind at all!!!" They were so proud to read their names in our blog!!!

So off we go!!!!

Rick and Joan here...Our deepest condolences to Shirley & sons.

We are so very sad to hear about the unexpected sudden passing of Shirley's husband Stephen. We met Shirley at our ALS meeting a few weeks ago. Our thoughts and prayers are with Shirley and her children and grandchildren at this time.

Joan here...Wow!!! Ladies...He is a keeper!!!

It is my birthday today....What a dream man!!! And I am so proud that I am married to him. I woke up to a wonderful cup of coffee...and....10 love letters...Rick presented me with one at a time...a ladies dream...his letters were filled with everything a gal wants to hear! I received a beautiful ring...3 diamonds...one for the past, present, and the future...went out for supper...hmmm....what can I say???? We cried a lot today!!!!

Joan here...

Rick has mentioned once again that he is not doing well. Every time he tells me that I brace myself for what is coming up next. He is so tired all the time. We have been trying to get a bit of low key time in this week. I walked into the kitchen tonight only to find him leaning on the kitchen counter with one hand holding himself up. He was trying to make a snack with the other hand. I asked him what was wrong.

He said that he can feel his back muscles are getting weaker and so he can't bend over and hold himself up with out holding on to something for support. He has to either be standing straight or laying down. So when he shaves he has to stand straight and not lean over the sink. He said his stomach muscles are going and all of a sudden he has this pot belly hanging there. I keep telling him now he knows how us ladies feel. lol

I have to keep an eye on him as he is very very cleaver at trying to do things in such a way that no one notices how he has to struggle to do things. He always tries to walk behind everyone so no one sees him walking. He doesn't want to eat soup now in front of anyone.

Rick and I would have loved to be able to help his folks with their upcoming move. It would be impossible physically for him. It is very painful for him to come to terms with that.

No matter what we are so very grateful for each new day that we have together. God is still good!!!

Joan here...Whew! Good to be home!

We have met some very wonderful and compassionate people on our trip. Despite the cloudy cool weather we had a really great time.

We drove down from Kelowna to Oliver with my sister and brother-in-law and toured some great wineries. We had a lot of laughs! They even got to share the "raspberry beer" that Rick loves so much! And to our amazement they had a live jazz band playing that night which made it even more fun!!! Rick said it broke his heart that we could not get up and dance the night away like we used to!

I'm not sure how we would have made it back to the airport on our own though without the help of our thoughtful and kind sister and brother-in-law. They took it upon themselves to help us out of the hotel and to the airport with all our "stuff". You can be very very sure that this girl will be learning how to travel very light in the future! There is no way I could have managed without their help!

We lucked out and had a lay over in Edmonton. This is where my nephew and his new bride met us for lunch at the airport. We were so thrilled to meet her!!! What a wonderful couple they are. They are starting out their new life together filled with so many dreams. Rick and I are so very happy for them!!!

Rick and I met some very wonderful people on the plane and in Kelowna. So, hi Jay, Judy and Helen. It was a delight to meet you! Everyone has their own story in life!

When we finally made it back up to our apartment tonight with all the "stuff", I realized we were laughing a lot again! I felt like we were back...not just back home but back to a happier place in our beings. I think we needed a break much more than we really knew!!!

If you get a chance read the book "I am Hutterite" by Mary-ann Kirkby. It is a true story about a girl who left the colony. It is a very well written book. The writer herself grew up in a colony just outside Portage, MB. We picked up our copy at the Virgin bookstore at the Wpg. Airport. Chapter also sells it.

Another good read "Stolen Innocence": My Story of Growing Up in a Polygamous Sect, Becoming a Teenage Bride, and Breaking Free of Warren Jeffs. Chapter also sells it.

Rick and Joan....Kelowna...did you say wine???

We are having a great time!!! Just a lot of adjustments to make...the first day we travelled was so very very hard!!! We did not know how much Rick can't do until now. Thanks so much Kim for arranging for the transfer chair...I could not have managed with out it!!!

We have had to avoid certain stops as they are not wheel chair friendly. I find that a lot of times I have to do things alone. I go to the gym alone each morning. Rick and I used to do this together.

The parking lot has too many slopes and so it was getting difficult to push Rick from the 2nd and 3 floor levels. No elevators. We have discovered the wonderful service of valet parking here.

We did go downtown a few times...and Rick was delighted to indulge in his "raspberry beer" awesome!! It is at Doc's. We had our memory lunch at Mission Hill yesterday.

It has been cloudy but not rainy so we have just keep going. We were at Penticton yesterday and had a great time just driving around.

We are so shocked at how things are slowing down for Rick and at how hard it is starting to get to do things...so sad!!! :( He is very frustrated and sad at times!!!

My sister and her husband are joining us this evening here...they have driven in from Vancouver.

We are just now awaiting for our vehicle to be delivered to the door.

Joan here....Off we go Ho Ho Ho!

Rick and I woke up this morning to the sun streaming in through our bedroom window. What a beautiful glorious day to head out on our trip! As we sat in bed having our morning coffee and talking (our usual). I noticed that Rick was opening and closing one of his hands and staring at it a lot. I asked him if his hands were giving him trouble. He said that he noticed that his left hand was "different" lately. We have noticed that both his hands do shake now a lot but this was something still different.

Tears began to stream down my face at that point. I can't imagine how Rick felt. Just plain sadness thinking where this will be leading soon. There is a saying..."you can run but you can't hide". Rick told me that he is so very happy and thankful that I am here by his side. We are just so happy we have each other. I relish each word he speaks and try to lock it in my memory so as to never forget! We both know we have one "h" of a ride ahead of us!

Rick mentioned that the thought of our plane crashing used to be a horrifying thought but on this morning it didn't seem such a bad thought anymore---except for the other poor folks on the plane that is! So with stiff upper lips we proceeded to discuss our trip knowing only full well that we need to enjoy every moment while we have it!

Fear of Packing...hmm...if anyone has this phobia you will know exactly the anguish that I am going through to get our "stuff" packed. I have packed so far 2 large , 1 medium, and one carry on suitcase. All of which are closed by standing on the suitcases to zip them up! We are only gone for 6 days with 2 of them travelling. Yikes!!! Rick just laughs.

Rick doesn't say a word about how I can't decide what to pack...hot clothes, cool clothes, and shoes...oh yeah....lots of shoes!!! His solution to my dilemma is very simple and easy to fix. He says "Joan, don't worry about it, it's okay, just get another suitcase". The joke is on me though these days. He used to be the one to lug these things all around. Guess who is doing that now??? I thought about that as I packed and ended up actually putting some clothes back into the closet. That put some real perspective into the packing.

It will be our first trip with Rick and I and "Ineeda". Tia informed us that the "Ineeda" actually stood for "I need a cure for ALS", not "I need a million dollars" as I previously had written. For those of you who don't know, the grandgirls named Rick's wheelchair "Ineeda" and his cane "Max".

Some more reality hit this morning as I began to lug the suitcases to the door, hmm, 3 heavy suitcase, heavy carry on, a wheelchair and cane. Our travelling has definitely taken on a different look and feel. It is hard to describe what goes on internally during one of these moments. Looking at the pile of luggage standing at the door right now, I sure hope the cab that takes us to the airport comes with a very very big trunk!

Rick and Joan here....It's a boy!!!

Just got the news a few minutes ago........We are grandparents again! No. 9. We are so thrilled....little Remi Jorge born to Roger and Ella May 28th , at 12:02 am. 7lbs 4 0z, 21 inches long. This is so exciting!!!! We are off to the hospital first thing in the morning to hug and squeeze this little miracle!!!!!

Rick here...You can’t tell where the roses bloom!

Today was a very emotional, shitty day! I woke up feeling very, very stressed. Dying sucks! We have our 9th grandchild coming any moment, my wife lies beside me twitching in her dreams and snoring (okay ---this is where the violins are suppose to start playing…and here I am typing this for Rick –not fair! The snoring part that is!!!)

All I can think of as I see the sun streaming through the window is how much I want to be here for Joan, the kids, the grandkids, for mom and dad and for me. God this is hard! I know the medical realities; I feel the changes in my body. I just don’t want this to happen. It is a tough day…tomorrow will be better, I trust.

I found out that Dunn-rite, Sperling Welding, and many others from the Sperling area , and even one of our competitors in our industry donated to the ALS walk. I was overwhelmed that people who I have never given anything to donated to this cause on my behalf. It is so damn humbling for me!!! I am so thankful!

We went out for a stroll and supper in my wheel chair tonight. We came in to the restaurant outdoor patio area and a chair was in the way. A lady noticed it and jumped up and came over and cleared the chair away so we could get to a table. Small kindnesses mean the world when you are especially in a spot like I am in right now. I had forgotten my cane and was making my way from our table to the bathroom without it. (slow, slightly stumbling, damn sad) and this biker looking guy stopped and held the door for me for about a minute till I got there…I thanked him, and he smiled and said “no problem, bro”. Little did he know how much dignity that gave me at that moment! You can’t tell where the roses bloom!

Appearances don’t matter a damn! That is what growing up in a small town has taught me. The measure of a person is not based on their net worth or appearance but on their character and heart! That is my heritage of being raised in Sperling! My friends from Sperling have proved that!!

While sitting at the Pony Corral, on St. Mary’s Ave. with Joan tonight having supper,
I looked over and saw the bluest sky and the grayest buildings and started to cry. I thought Heaven must be wonderful…look how beautiful the earth is…there is a God!

I also realized that I am not a writer. I am a narrator. I need a mic so I can just speak into it. Otherwise I have to think too much to be happy with what I am writing. I guess when I talk; I feel like I can correct it or elaborate on it in the next sentence. Writing is just too damn precise. Precision was never my strong point. I am more of a shot gun aficionado than a marksman. Kind of funny that my Dad, my brother Garth, and my son Daniel are all marksmen…kind of think Grandpa Fewster and Grandpa Watson were shot gun guys themselves. That may be only my impression because I got along with them so well...but then again I might be the odd ball. Lol They say characteristics jump a generation. So who knows?

We have found that on the hardest days often we experience the most unexpected mercies from the most unexpected people. A young man saw us moving towards the elevator as he came off…the elevator door completely closed…he saw us coming…he stopped and turned around and went out of his way to push the elevator up button and held the door open while Joan pushed me on. We have found that a lot of the young people from the other countries have much compassion and respect for the disadvantaged and old. (HELL that is me now!)

Anyhow…I think I am entering into a new level of blogging in terms of being able to express my inner heart. Something happened to me at the walk…maybe a realization of what really makes a friend, I am not sure, but at any rate something really has happened to me.

I told Joan that I don’t want to die!
I don’t.
I am not afraid to. I just don’t want to now or anytime soon! This whole thing is just so damn hard!!!
Anyhow….more later…
Rick

"Team Rick" & "Team Sperling"

Rick and Joan here...ALS Walk a success!

It was a fantastic day! Sunny and warm to start off with.

We want to thank all our family, friends and the Whitemouth School students and teachers who participated in the walk in person and in spirit!

A special thank you to Diana and Sharon from the ALS Society, Jennifer from the Whitemouth school who coordinated the walk, Lorraine Forester who launched the whole idea, Kyla who organized "Team Rick", Kent and gang for "Team Sperling", Lorna for the "Team Rick" hats, Winnipeg Outfitters for the "Team Rick" tshirts, Dunnrite Foods for their sponsorship and prizes, Jake and Val for opening their home to all and the folks of Whitemouth.

The day was a tremendous success with the ALS Society raising over $13,000! Our granddaughter Tia won a prize for raising the most amount of the students.

The day started out with family and friends coming from all over. Stroller after stroller after stroller lined the sidewalks. lol We joked that we could have been called "Team Stroller".

For us there were so many variety of emotions of the day. We experienced such great joy in seeing people come out especially on the weekday and when Rick's old school mates showed up as a surprise to him "Team Sperling" wow!!! Then as we walked with everyone down the streets it was like what are we doing here...it just doesn't seem real sometimes!

Rick here....

I don't know how Joan and Kent did it. They kept me completely in the dark about the existence of "Team Sperling". I looked up and saw all these purple tshirts pouring out of a big van. I thought "that is neat there is another team here and I wonder who they are". Joan ran ahead of me and I heard her say you must be Kent. I am not often caught for words but when I saw all my old friends...most of whom I have not seen for 30 or 35 years. I lost it!!!

Some of these folks I had not seen since grade 8. I choked back the tears and tried to figure out who was who. I was completely overwhelmed! I was humbled and honoured all at the same time! What an incredible surprise and what an incredible group! What an incredible town!!!

Well...needless to say after the walk we retired to the good old Whitemouth Hotel to catch up on 35 years. It turned into a few hours. We laughed...and laughed...and told stories and laughed some more! What a time!!! We then moved the party over to the suite where we will be staying and spent most of the afternoon laughing and laughing and telling stories and did I say laughing!!!

A few highlights...seems the gang had picked up a big box of doughnuts on the way out to Whitemouth. As they parked the van right in front of the local RCMP detachment which is across from the school it only seemed right that the doughnut box be autographed and left on the front step of the cop shop!!! A short time later several of the guys got their picture taken with one of the officers. Quite a joke seeing that we spent a lot of our time in our teenage years avoiding those guys! Someone joked that it must be different to not have the cops taking the pictures! lol

Anyhow, it was one of the most memorable afternoons of my life! A big THANK YOU to Kent, Don, Rob, Don, Glenn, Gordie, Anne and Fritz, and Jill. I also want to thank Ruth and Jean out in Carmen for their help in the fund raising.

Joan here...I want to thank "Team Sperling" also for really making me feel welcome and accepted. Mercifully they kept all the "Rick" stories quite decent!!! :) All that laughing was so good for the soul!!! Thanks!!!

"Team Sperling"