Rick and Joan here..."It's New Year's Eve and Family Birthdays Galore!!!"

Happy 80th Birthday Dad Fewster.....Happy 78 Birthday Mom Beck...Happy Birthday sister Carol...Happy Birthday cousin Mathew!!!!!!!!

Wow!!! New Year's Eve in our family is one great big birthday party! Rick and I have so many family members who share birthdays!!! Check the pics!!!

Rick's dad Wendal 80th

Joan's Mom Joyce 78th

Joan's sister Carol (she would never forgive me if I said the age!!!!l0l )

Our cousin Matthew (don't have a clue...just know he is old enough!!!)

They all share New Year's Eve as a birthday! Never mind the other duplicates of birthdays and names throughout the year!!!!

Joan here..." A very quiet Christmas"

We have had a very quiet and reflective Christmas Day. Lots of falling snow and very picturesque. We were treated once again to some angel sounding carollers on Christmas eve!

Afterwards we sat near the toasty warm wood burning fireplace, with all the Christmas lights beaming out the window, and we began to talk about all our previous Christmases. How we always tried to go all out for this time of the year! We have always enjoyed spending that time with family and friends.

We were remembering how he would try and play Santa for the gkids. One of our last memories of him being able to do that was two Christmases ago. This picture shows him standing outside our house coming in with gifts for the gkids. (Santa is a bit on the skinny side (Rick says). What you don't see in the pic are all the little smiling cheering faces on the other side of the window as they watched Santa moving up and down the street heading to our house! There was joy in remembering those special moments but sadness in thinking we will never have them again. Each Christmas that we have together has become even more precious than ever!

On Christmas day this year we were invited to our neighbors (Jake and Val) for a wonderfully cooked brunch. We then retired back to our suite for a much needed nap after all that food. Then later on that evening our neighbors (Jake and Val) brought us a complete Christmas dinner with all the trimmings! It was so wonderful of them to share this time with us. Rick was so tired from the day that I ended up feeding him his much desired dark turkey meat and dressing from his bedside.

Rick and Joan here..."Merry Christmas!"

This past week has been a very focused week on me getting on a bowel routine. We did it! Thanks to all the meds, advice of the professionals! :)

As we eat our traditional foods this evening, we realized how things have changed from last year. This year I could no longer stand and I can no longer feed myself, I can no longer hold my wine glass up to make the traditional toast or wrap my arms around my wife.

BUT...I can still talk, I can still eat and drink even though with help, and I can certainly be thankful for the blessings that are mine! Joan and I have just had to rethink how we do things...in fact how we do everything here! But we are doing!!!!......

This is a pic of me toasting my sweetheart! I am married to the most compassionate, caring and selfless woman in the world! I can't believe how she handles the stress and outright hard physical labour that looking after me entails. She is my angel! Christmas has always been a very special time for us. And this one even more so!

We want to wish all of you, near and far, a very Merry Christmas and pray "that the peace that passes all understanding" would be yours this Christmas season and New Year!

Joan here..."We got our first dreaded ambulance ride over with!"

This past Saturday, December 12th started out to be an awesome time with my side of the family getting together here. My siblings had arranged to come with a Christmas dinner with all the trimmings!!!! We had an awesome time all of us together!

We had a wonderful surprise visit from a dear friend of Rick and mine---silly puppy! He joined us all. We have known him since he was a pup! He's the guy in the pic with the fancy earrings. lol.... We all enjoyed the incredible companionship, food and fun. There is never a dull moment when he is around that is for sure!

Later that evening after everyone had left our life got really interesting...

We have been posting that Rick was experiencing difficulties with constipation this past while.

We tried everything we think known to man to try and clear this up but to no available. I gave him one more enema and to no avail. He was in increasing pain and discomfort.

Jake and Val encouraged us just to take him into the hospital. My mind flipped into seeing myself driving the van in the middle of the cold night. Trying to get Rick loaded into the van etc. As my mind was rumbling with all these thoughts I mentioned to the kids about the van. Jake looked at me and cut through the fog really I was experiencing and said "mom just call the ambulance!".

I can't believe how a person can go into shock emotionally and get so numb within minutes. The thought of Rick being taken to the hospital by ambulance was almost too much. It was something I always thought would be in the far far distance. Not now! Val placed the call as Jake and I scurried to pack up Rick's bi-pap, and all the other necessary things I though he may need.

Lesson learned...have all this stuff prepacked and organized ahead of time.

This was all happening after a full day of company, trying to bring comfort to Rick physically,not much sleep from the night before and now having to get myself organized enough to give the ambulance drivers all the necessary info etc. Thank goodness we have an E.R.I.C. kit all filled out with the health care directive etc. on the fridge. Then last week I got into my organizing mode and printed out my own form called "Rick's Daily Log".

In there I list all the meds, what he eats, description of Bms, and any other notes of what has happened in the day in regards to his care. I am regularly asked what has he eaten, what drugs is he taking and etc. So this "log binder" has turned out to be a god send as I don't have to try and remember all of it. My mind just went blank under the stress of the moment. So...I just handed the day's log to the ambulance driver with all the meds etc. and away we went to the hospital.

Riding in that ambulance really affected both of us in terms of what is coming down the pipe here and it is staring us right in the face. The ambulance staff were so amazing also and helped make a stressful time bearable!

Now for the hospital part....Pinawa Hospital was the lucky place chosen to have to deal with the mess!!! lol We had a lot of humorous moments throughout the process of this 48 hour ordeal! We know in future the nursing staff can say when they meet Rick with all honesty "I know that asshole!" LOL...(that was Rick's input of a comment here). In reality, Rick's muscles are affected from the ALS and that is what is causing the problem.

We were once again met with incredible kindness, support and professionalism from start to finish. What a group of angels! They especially made my stay with Rick through it all so comfortable for me! They treated us with above all, dignity and such amazing compassion! The doctors, nurses, health care aides, and staff we felt were there for us. They have an amazing team with great morale!

At the rate Rick and I are going we will have toured all of Manitoba's hospitals! We will have to put together a who's who in Manitoba Hospitals. Kind of like the Manitoba Tourist guide!!!

Hospital details from Rick's very personal perspective to follow! I am not convinced it will be actually legal to post such info! :) It may need to be censored as to "content"!

Joan here..."My baby is napping"

I thought I would sneak a pic of Rick as he was having a nap. He has been very tired lately and isn't up out of his bed much during the day. Our constipation issues have taken a tole on him.

It is sooooo very cold out and he can't get around outside with his wheelchair because of the snow. We are afraid he will get stuck.

Thanks for all your emails and encouraging words to us! It means so very much!

Rick and Joan here..."ALS MB tv commercial"

We just found out that Tripwire Media has posted the 30 sec. tv commercial for the ALS Society of MB on their website. Rick and I, Jake & Val and girls are on the commercial as well as other individuals who are living with ALS.
Please click on this link for the tv commercial...
http//www.tripwiremedia.com/featured-video

Please let Doug at Tripwire Media know what you think of their work. You can email him at
doug@tripwiremedia.com

Rick here..."Body, Soul and Spirit update"

This is where I am at right now in my body... (Warning...graphic content ahead!)
We are trying to make things more "shi**y". lol! Constipation has become a real problem as ALS has weakened the necessary muscles. This is one of those things that you take so for granted until it is not working right. I have had a few very difficult days in the last couple of weeks. I am regularly injected in my feeding tube with APO-Lactulose to kick it all along. Never mind the cups of prune juice. Thankfully, I actually like the stuff! Despite all this help we have had to resort to good old...oh no!!!!...suppositories! Guess who gets to administer them???? Thanks sweetheart!!!

My arms and hands are weakening at a frightening rate! I can't even lift the blanket to get my hands from underneath it. We are in the process of setting up an appointment with the HSC to start working on an assistive communication system as typing has become so terribly difficult! Thankfully, my voice is still very audible and clear. I do have cracking and hoarsness at times.

My breathing continues to decline but the bipap machine has made such a big difference. I not only use it all night but am trying to get in as much day time as I can with it also.

When I am hoyered into my wheelchair my butt (what is left of it) pancakes out really bad so placing me comfortably in the wheelchair has become more of a challenge.

I am not in a great deal of pain to speak of but I am constantly uncomfortable, sometimes almost to the point of tears. You can not imagine the torture of cramping up, and only needing to move your foot a half inch to get relief but not being able to do it yourself. Never mind the endless times I need to scratch and can't myself.

The feeding tube is working out really well. Joan, Val, Mom and Dad have easily mastered the whole procedure. A plus to the tube is that it makes taking bad tasting medicine a breeze!

This is where I am at right now in my soul (mind, will and emotions)...
I think one of the most difficult parts of this whole thing is the incredible vulnerability that I experience every moment of every day. I depend on Joan and our care team for my every physical need, for my comfort, and for my well being. I had a particularly hard time last week when we were dealing with my first time with the constipation problem.

I found myself at one point hanging in the hoyer sling with a potty beneath me and poor Joan standing by wiping and wiping as I barely made progress. Just enough to need cleaning each time but not enough to bring relief. I watched my sweetheart selflessly up to her elbows in you know what trying to keep me comfortable and clean and I just lost it! I started to cry from the depths of my soul. The helplessness I felt and the burden I created for her just overwhelmed me! My sweetheart cradled my head in her arms and assured me that it was alright. That no matter how it seemed right now I was still her "same old Ricki". She knew that not being able to wipe my own butt had been one of my major fears. Joan then came to my rescue with a couple of her humorous comments that changed my tears to laughter! She said "So this is what it means for better or worse?" I assured her that it had been written in the fine print!

Dealing with ALS seems to produce either tears or laughter...there is not much in between!

This is where I am at right now in my spirit...
Despite my circumstances I am experiencing the "peace that passes all understanding". I know with all of my heart that God is not the author of all of this. HE is there to take me through it. We are so thankful for the prayers from all of you. We have experienced amazing love, care and support from all avenues that we have been in contact with in regards to my care. Your prayers are working! As my body continues to fade I am becoming more aware of the strength of my inner man. I guess you can sum it up though this way as I have said many times before...I have no doubt about where I am going when I leave this body...I just don't want to go now!!!!!

My only sorrow is facing the separation from my sweetheart and other loved ones way before my time! At times this seems too much to bare! There are lots of tears in the middle of the night about this. My uncle Keith shared something with us awhile back. He said "Great grief is the price you pay for great love!" I have great grief! That is when I throw myself on HIS grace to take me through this valley!

PS...Just for those who are thinking...how can Rick type this??? He is not.....Joan is!!!!!

Joan here..."Phone adapter and electric blanket to the rescue"

Rick's arms are so very weak and holding up a telephone was getting nearly impossible so our brother-in-law, Roger solved the problem. He came up with a very light headset that just hangs over Rick's ear and plugs into our portable phone.

Rick's cold feet were getting to be a challenge also. My sister Kathy came to the rescue with an electric blanket that is light weight but nice and warm.

Seemingly little things can make such a huge difference in Rick's comfort. The warming of the feet makes his joints even more supple when doing range of motion exercises. He is getting those done on his arms, hands, feet and legs now.

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

The bad news...

My arms and hands have been getting weaker and weaker and I can no longer hold anything in my hands even my favorite beverage. Believe it or not I am actually reduced to sipping my LAB Lite through a straw! ARGHHHHHH!

Wait a minute...on the other hand...

The good news is...

I CAN still drink Lab lite through a straw!

I suppose it all comes down to perspective. Is your glass half empty or is it half full????? The crazy part of ALS is that while you grieve the loss of daily simple capabilities you also have to realize that in no time it will be much worse.

My advice of the day to all...cherish your loved ones, squeeze the joy from every moment and live each day as though it was your last! Don't sweat the small stuff and realize that most of the things that drive us crazy from day to day are nothing but SMALL stuff!

Joan here..."A few comfort things for Rick"

He is fast asleep right now! Which is a very good thing as he has uncomfortable nights.

Rick's mom found the foam pillow when we went shopping for some really soft little micro blankets to prop up his legs.

We also discovered placing our camping cot beside the hospital bed once it was lowered to as low as it could go gave us a chance to hold hands and lie beside each other!!! It was driving us crazy that we couldn't sleep by each other.

The foam pillow works as an awesome support that is both firm and soft for his now turning in toes and feet. It has brought him much relief and I don't have to get up as much at night to straighten them up for him. We both win! The little micro blankets $8.00 with extra short and extra soft surface make it so very comfortable to prop up legs, arms and even place in the wheelchair beside his legs so the legs won't rub on any metal.

Rick and Joan here..."Mom and Dad to the rescue!"

Here are a few pics of the folks learning the ins and outs of the "peg feeding", "peg cleaning" and the "showering routine". Check out Dad's rolled up pants and shower shoes!!! Mom and Dad swooped in and stayed for us over the weekend to help with my care. Thanks so much guys!

As you can see there is a lot involved now in my care. Takes a team of people.

My bro and two nephews put up our deck Christmas lights this weekend. We are enjoying looking at them! Thanks guys for that and the special meat treat!!!

Rick here..."A new Pegger perspective and I don't mean WinniPEG"

A little info on the "PEG surgery"... (Percutaneous Endoscopic Gastrostomy) that I just had. From a "pegger's perspective".

Well, it was quite a rush. I was on a waiting list for the first available spot they could fit me in for my peg tube. It finally got done last Friday. This is how my process worked.

I was wheeled into the operating room. The procedure is done with your head and chest elevated about 30 degrees. The first thing they did was spray the back of my throat and mouth with a freezing agent. They then tied my hands to the side of the stretcher...I suggested that they must have not wanted my help! lol They then put a plastic mouth piece with a hole in the centre of it in my mouth to clamp down on.

You then get a little shot of happy juice---not enough to put you right out but rather to fog you up real good. A camera is then inserted down your throat into your stomach via your mouth. It is a pretty weird feeling as you are trying to breath and gag at the same time. It goes surprisingly well though and there was no sense of panic at all!

The doctor scopes out the stomach with the camera then they dim the lights in the room and shine a very bright light out the camera end. It is maneuvered around so that the light shines out the front of your belly. A small incision is made and they reach in and pull out the plastic tube that they have fed down the camera cable. The tube is about the size of a gas line.

They secure the line from the inside and outside with a couple of plastic fittings called "bolsters". Really a glorified plastic washer. That is all that there is to it. The whole thing took about 20 minutes. Once the op was done they put on my bipap and up I went back to my room.

After the operation:
Now for the fun part...getting emotionally and psychologically used to the darn thing! It sticks out of my stomach about 6" above my navel and is a foot long with a two headed plastic adapter at the end for feeding and flushing! Not as scary as that seems! Check photos on previous blog entry for the photo shoot. lol

They run water to flush the lines to make sure everything is okay for the first time. As I watched the very first injecting of fluid it was pretty strange. There is no sensation when being fed through the tube. I watched the liquid go in and waited. Nothing happened...no pain...no sensation...kinda anti climatic actually!

I can still eat and drink as usual. We use the tube feed each evening to top up my calories for the day. Later on when my swallowing is more affected this will be the only way that I will be able to take nourishment, fluid and of course meds. The reason for the rush in getting my tube was because my breathing has gotten so much worse. Once your breathing deteriorates to a certain point it is not safe to operate on you so we wanted to get this behind us.

The big part of the peg is the work involved for your loved one to do the feeding and clean up of equipment afterwards. Joan has mastered it through much fear and trembling of the unknown. She was so scared of letting in air into my belly. It doesn't work that way what you have to be careful of is stomach contents slipping back out the tube. A tip: Remember to bend the tube when inserting or removing the feeding tube line! Ask us how come we know???? lol

Rick and Joan here..."We are home!!!!"

A huge thank you to all our new friends on the 6th floor (GH 6) at the Health Science Centre Hospital. Everyone there went above and beyond to help us through a very difficult and emotional time!!! Thanks so much for all your kindnesses, care and professionalism. We felt like welcomed guests to a 5* hotel... Special thanks to our Dr. Janice...You are ALL the best!!!!

Rick went into the hospital with an "inny" and came out with an "inny and an outie!" I have told him he was always so special!!! lol The feeding tube was placed about 6" above his navel. It allows him to eat both by his mouth and have supplement feedings through the tube. He won't be so tired having to chew all his food now. We are hoping that he will be able to gain some weight now!

We were in for 5 days. A huge thank you also to our families for their visits, phone calls, support, flowers, cards and special drawings by our grandchildren! Thanks Val for spending a night standing guard over Rick while I had a long needed sleep in a real bed! My sis and husband arranged for a wonderful massage for me also. It felt so great after having slept in a lazy boy for 4 nights by Rick's bed. We came home today packed with some homemade soup and food mom put together for us also.

The "Peg" tube (Percutaneous Endoscopic Gastrostomy) that was installed allows Rick to get his nutrition by liquid supplement while he can still eat only the foods that he really wants to eat!!! ie...meat!!! NO more salads if he doesn't want to eat it!!! lol

Yes, for those of you who are wondering....once again....I did the traditional kick the feeding pole thingy...wishing we would never have to need such a thing....but then proceeded to get it set up to do Rick's supplement feeding for the first time at home! ( as noted in our previous blogs... A traditional thing I have done since the very beginning was...to kick the new piece of equipement but then embracing it's ability to make Rick's life easier!"

I spent time in the hospital learning to do the "peg feedings" and I got taught in cough assist techniques. The rest of the time I spent just taking care of my man. They talk about some women being "high maintenance women" but yikes...I am married to a "high maintenance man!!!" As I type this he is being fed for the first time here by the "peg".

Rick and Joan here..."Feeding Tube here we come!"

We just got the call tonight Rick is going to have his feeding tube operation tomorrow morning at the HSC. We are off tonight to stay at the Brummit Feasby House. So as you can imagine there is a lot of flurry and packing happening right now!!! So keep us in your prayers!

Rick and Joan here..."We are enjoying everything possible!"

Rick and his crew!!! What a bunch!!! We had a blast!!!! Neighbours popped in all evening!!!! We had about 60 kids come by.....we have lots of goodies left over...so you are welcome to come by and get some!!!

Joan here..."A Ghostly Pair"

We were at a surprise get-to-gether for my sis's bday and we all showed up as ghosts. A little tricky to hide a wheelchair but we did it!

It was a "BOO-rthday Party!

A sheet makes a great costume to cover a wheelchair. We topped it up with a hat and necktie to bring a little character to the ghosts and whalla....

Rick and Joan here..."Leg support strap for wheelchair"

Back view

Front view

Many many many thanks to Rob for making Rick's wheelchair leg support strap! It really makes a difference to his comfort especially when he tilts his chair back.

It was made out of two strips of nylon webbing sewed together with Velcro stitched onto the back. It is adjustable and easy to take on and off.

It is one of those things that is nearly impossible to find. We really appreciate it!

Rick and Joan here...."Finishing touches to being filmed"

The film crew was back out today to finish up the footage that was needed for the projects that are underway with ALS Manitoba. We are so amazed at how the ALS Society of MB are trying to bring awareness to the public of this devastating disease.

Doug at Tripwire Media Group is doing the production work. He is fantastic! A real professional with a really big heart! So....if you need any kind of filming or video work...or to kick up your website...give him a call... here is a sample of the film promo he did for the ALS Brummit Feasby Hospice House recently...Tripwire Media presents.... http://vimeo.com/6990868 (check out this video presentation, if you have any trouble with it breaking up copy and paste the address into your browser).

When Rick and I come to the city if there is a room available we often stay at the house the night before our appointments or special events. It is a God send...The two guys featured in this video are both men that Rick and I have met and love dearly!!! Please take a second no matter where you live and send off an email to Doug and let him know that you saw this on our site... doug@tripwiremedia.com (He truly has a heart for us ALSers!!!!)

The pic is a sample pic of the camera action that took place this aft. Jake and Val were interviewed as well as Tia and Katie were part of the lights, camera and action! We are so proud of how they were willing participants to help bring awareness about ALS.

Joan here..."A Day at the Spa in house"

As I watched Julie working with Rick on his range of motion exercises after his morning shower I had a moment. Outside of the ALS, it was like he was having an in house "Day at the Spa!".

We all laughed about it! Next he gets his breakfast made to order and then he is up and away for the day!

Rick and Joan here..."A nice surprise and retro fitting pants"

Rick and I were so pleasantly surprised today once again by the kindness we have received!
A good friend of ours, Mike, had mentioned he would deliver some 2x4's for our much needed wood stands for the winter. We arrived home to not only find the wood here but he had gone ahead and cut and assembled the racks for us. Wow!!!!!!

It might seem a small thing to some but it sure is not when you are in a position like ours! It brought tears to both our eyes!!! There is hardly a day that goes by where we do not experience an unexpected kindness from someone. Thanks Mike!!!

Rick needed some more open back pants and some wheel chair pads. I bought the first two pair of open backed pants from Golden Wear in Wpg. http://www.goldenwearclothing.com/ I decided this time around I would just try and retro fit some of his old pants!!! I borrowed Val's sewing machine as mine is in storage somewhere in never never land! I took out the back ends out of some of his pants and made him some pretty snazzy wheel chair compatible seatless trousers!!!!

For the uninitiated ....if you can't move and you spend your day in the wheelchair you need pants that can slide on from the front and then just tucked in around you. Less material to cause wrinkling and abrasion on the backside. The other huge advantage is that the person does not have to be lifted up to get dressed.

Rick and Joan here...."We found it!!!! A slipper that works for a winter boot"

This is our solution to keep Rick's feet warm this winter inside and out! A regular closed shoe no longer works as his toes curl under and then you can't straigthen them out in a regular shoe. We don't have to worry about getting them wet as he no longer walks. We just needed something easy and warm for him!!!!

Our daughter-in-law found these for Rick in the Sears Wish Book! We ordered them and wow.....our solution for a winter boot/slipper that can work for both!
The slipper/boot opens wide open from the top and is adjustable using the velcro flaps. Made out of a heavy felt and a firm sole. The adjustable flaps allow for changes during the day as the feet swell. What is so wonderful is that they are also a closed toe so no air gets in.

We purchased them in a larger size so we could add warmer socks for outdoor use when travelling. These would work great for lots of folks dealing with diabilities not just ALS. You don't have to worry about toes curling you just have to open the slipper wide open and place the foot straight down on the sole and then velcro close.

K. 'Doctor' closed-back slipper
Save: $5
Price: $44.99 Until Jan. 10
Item Number: 672 583 609 A
blackK-L MEN'S FOAMTREADS WOOL SLIPPERS wool uppers
self-adhesive strap for a snug fit
Nylex lining and padded insoles
rubber outsoles

Joan here..."My baby is napping!"

Here is my sweetie after a shower and shave and all sitting in his chair! I put on the bi pap and he was out cold in a couple of minutes!!! Wow!!! Thanks to all the medical staff at the Health Science Centre who got us all up and running. I am sure it will give Rick an incredible boost in quality of life for right now!!!

Once he wakes up we are going to take in the beautiful afternoon. I have some patio stuff to put away for the winter and get rid of the ugly looking frost bitten plants that are still on the deck.

Joan here..."Rick's new nighttime look!"

Well it is done...Rick's is officially fitted for a bi-pap machine!

Another piece of equipment for me to master!!! oh yeah!! and clean!!!

Today, was not a good day for me at all. I have come to realize that every time there is a piece of equipment added to our daily routine I first get so angry about it. I know it means helping Rick to have an easier time but for me it just means more work somehow! Another loss of sorts!

I am ready for an ALS break about right now! Sleeping at the ALS hospice is always a challenge for us. It is a great help and service to us ALSers but it is also physiologically challenging for us. It is a face front reminder of what is down the road.

Karen was so awesome today in showing me how the equipment works. I am so truly amazed at the wonderful people that are out there helping us. It is not their fault that I have to do some personal adjusting each time.

As I write this Rick is bi-paping!!! lol...he really had a hard time to let me hook him up to it tonight as he knows how hard it was for me just to even bring another piece of equipment back! Never mind how he looks in it!

I was so encouraged tonight that his bro and parents called to see how it went today...it was sooooo stressful on all fronts!!!!

Rick and Joan here...."The curtains have closed and the lights are dimmed!"

Wow...what a day!!!! We had the film crew out today along with Brian from the ALS Society from early till late! They are an incredible bunch of guys!!!!!

They were taking a variety of shots so they will have footage so it can be used in a number of proposed upcoming video projects ranging from...instructional videos for healthcare professionals to short video clips for people dealing with ALS and perhaps even for a commercial.

They also interviewed two of our granddaughters concerning their ALS Fund raising efforts. They were some what shy! But did an awesome job!!!

They followed us through the day....good and bad! :) including Joan getting me hoyered out of bed unto the commode chair and then up to the bathroom and showering. Joan laughed that it was quite different having men in the shower with us instead of women...(homecare workers). Not to fear they were discreet as could be but to be honest it was pretty damn intimidating!

They took shots of Joan getting me dressed, brushing my teeth, shaving me and combing my hair...my daily routine.

They then asked what we did for enjoyment. Because it was just after lunch...we told them...that we like to go the the local Whitemouth Hotel for a sandwhich and beverage from time to time. That sounded good to them so off we all went!!! They got pics of Joan using the van lift and driving "the beast". Into the hotel we marched complete with cameras, light stands, cables, mics and etc. We had given the hotel about a 15 min notice so they had a fire going in the patio and gave us that space to use for the 2 hour interview. Thanks guys!!! It all worked out great!!!!

It seemed like all my shots were back ended ones as I was pushing Rick in the hoyer lift and up the lift. I asked them to be kind about that!!! lol....so here is hoping!!!!

Joan and I decided from the start of this journey to be as transparent and forthright about the challenges as we could be. Our hope is that some of what took place today may help awareness and educate people about this terrible disease.

Here is looking up and onward!!!

PS I don't think Jon and Kate plus 8 have anything to worry about from us after today!!! lol

Joan here..."Lights, Camera & Action!"

We are so impressed that our small town of Whitemouth has a fantastic pharmacy/dental centre. We took advantage of their services today. It was quite an experience for Rick as he had to have his dental work done leaning back in his wheelchair. The staff were so accommodating to both of us. I stood by him through it all and watched for any bulging eyes!!! lol

What we did learn today though was...I have a new job added to my list... Tooth brusher and flosser! Because Rick's arms don't have much strength he was only brushing the front of his teeth. He got busted!!!!

I couldn't sleep tonight so I decided to get up and go snuggle with Rick for awhile. It was just one of those sad times as I laid beside him watching him sleep. I tried to put my arms around him but he is so bony that I am scared to hurt him by the weight of my arm laying over his chest.

Today, is the day where we go through our daily routine with the filming guys. Rick & I get to have guys in the shower with us this time! :) We committed ourselves right from the beginning of diagnose that we would try and be as open and honest about going through this in order that others may in some small way be helped to understand, be encouraged, and educated about this disease. We have appreciated reading up on any practical information on the disease that others before us have left. It has helped us to cope from time to time as we went through each new loss and wondering what was next.

All in all, Rick and I have always had a strong faith base and that has been our foundation through this all. We continually experience an inner strength rise up within our being when we are so overcome with sadness and fear. We have not forgotten to have fun together!!! We try and find humor and enjoy a laugh along the way! I am very proud of how my husband wakes up each morning and stares that ugly tiger in the eye!!!! He choses each day to look at life with joy and optimism despite the challenges he faces for that day!

Rick and Joan here..." Lots to be Thankful for!"

Rick and I were so thankful for the wonderful Thanksgiving supper my folks and siblings brought out for us today. They arrived with EVERYTHING!!! Bags and boxes of food!!!! I had to take a pic of all the stuff on the counters they brought in with them. We couldn't believe what they all hauled in. They were determined I would not have to cook or do any dishes or cleanup!

They truly made this day a special one for us. As you know we can't go to anyone's homes for gatherings anymore so unless it happens here...it doesn't happen at all!

They spent the day with us. Lots of food,laughs and memories!!! You really made us feel loved and very special today by thinking of us in this way! We know it took time to shop, cook and drive all this way!!!!

Joan here..." A driving we will go...A driving we will go"

I had a brain wave to take Rick for a ride on the back roads up here to enjoy the last beautiful look at falltime. Little did I know at the time that exactly 7 days later we would have 6" of snow.

Rick usually rides in the back of the beast bouncing around with little ability to see out the windows. I wanted him and I to experience a bit of normal where we both could sit by each other and that he could actually see out all sides of the truck.

I was determined to get him into our car but that was impossible! Too low!

Jake came along and suggested we try putting Rick in his truck as it is higher off the ground. Rick was so apprehensive about it all as he is so volunerable physically and sure doesn't want to get hurt in anyway. He also worries that Jake would hurt himself when lifting him. Rick forgets that he doesn't weigh very much right now. Rick needs support on both sides of him so he doesn't fall sideways.

Jake picked him up and put him in the passenger side of the truck. We hooked up his seatbelt and away we went. Wow!!!! Such an ordinary thing like jumping in a vehicle and driving away became this incredible wonder for us!!!!

I drove all around the back roads and up to Pinawa and Lac Du Bonnet and had a wonderful time. We chatted and held hands non stop. Usually, when Rick sits in the van it is so noisy that we have to yell to hear one another. We stopped for some take out food. Just having Rick sit in a regular seat was such a treat for the both of us. We didn't want to come back to have Rick be put back into the wheelchair again! We felt normal for the couple of hours as we travelled along!!!

Joan here...."A very stressful week"

We have had a busy week. Home Care is coming in for a couple of hours every morning. They are absolutely terrific people! It is just so stressful to have strangers in our space and it is so difficult for me to hand over some of my duties to them. It is like giving your baby over to a stranger!!! I feel like I am abandoning Rick for some strange reason. It is like it should be ME doing everything not a stranger. There is so much guilt to deal with!!!!

It really hit me the other morning when the home care lady shaved Rick...NO NO NO!!! Rick and I always had a Saturday morning thing going where I would razor shave him and he would paint my toe nails and he would bring me coffee and we would spend a leisurely time together. We did that for years together and now....

I know in my head I have to let go but my heart just is having a hard time! It makes me feel like I am such a failure and abandoning him when I don't take care of all his personal needs.

One of the other hardest things was to show a home care worker how I go about showering my husband. I can't even describe how it was for me to do that. Just picture this....
Rick, me and a home care worker in the bathroom together. A private and intimate time usually between just Rick and I! Rick and I always showered together! I had such a hard time with it all. I rolled him in the commode chair into the shower...and quickly flung the towel off of him and threw a wash cloth over the special parts!! :) as if they really cared!!! but Rick and I did. Rick is a very private person. I just so wanted to preserve his dignity or better yet his privacy...but all in all...we came naked into this world and we are heading out that way when all is said and done...just not so soon...we all want to be old and senile when this is happening.

We have had two different home care workers in this week and two new ones next week. So each time there is a new one I go over the routine with them. It is very emotionally stressful!

Rick and I can't begin to even express how wonderful everyone has been with us. They are trying to be so sensitive and caring to both of us!!!! We are so incredibly thankful and grateful. The adjustment is on our part.

We found out today 2 things....

1. We are going to be filmed based on "a day in the life of an ALS person" for a documentary on Wednesday this coming week. So we are going to be film stars!!! lol!!!

2. Rick is going into the Health Science Centre Friday to be fitted for his Bipap machine.

Today, was an unusually difficult day emotionally for myself. I was so full of anger about everything.

I am so thankful that my family decided to bring Thanksgiving to our place as Rick can't get into anyone's home. My family has been so incredibly sensitive that way. They are each bringing a dish so I don't have to cook. That allows us not to be left out of the family gatherings.

Rick here..."You know you trust someone when..."

Okay- it was one of those moments. Mom and Dad were over for the weekend to look after me for a couple of days and give Joan a much needed rest. Mom and Dad are quite a team. They hoyer me, dress me, feed me and empty my urinal bottle! Which leads me to the story.

As my hands and arms have gotten weaker the dreaded day finally came. I was sitting in my wheelchair and had to pee badly! (might have had something to do with the fact dad and I had a couple of beverages! lol) Anyways, to accomplish this routine bodily function it is necessary for me to hold the bottle in one hand, pull the elastic waistband of my track pants down with the other while somehow aiming accurately and shooting slightly uphill...sounds easy...till you try it!

On this particular occasion my arms were too weak and far gone to pull it off! Time was of the essence and I knew I would never make the deadline if I took the time to get hoyered out etc. When I realized my dreaded predicament I hollered for Dad to come and help. Within seconds we decided the only solution was for him to run for a pair of scissors and cut the front of my pants open.

Now, you have to picture this...two grown men, one in a wheelchair squirming from pressure, this nearly 80 year old man, wielding a pair of large scissors while trying to cut open the front of the crotch of my pants---both of us laughing uncontrollably. Mom sitting there staring out the window trying to keep a straight face and not quite sure what these two maniacs were up to!

Mission was accomplished successfully...I told dad "You know you trust someone when you let them loose with a big pair of scissors aimed at your crotch!"

All in all, we made another memory! Thanks dad you saved me again!!!

ps I am now using specialty wheelchair designed pants that allow quick access without a pair of scissors! lol Remember kids...safety first!!!!

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

Our seven year old granddaughter and I have a heart to heart talk every couple of days. She pops up on my bed and bears her soul! All the latest of her cares and anxieties she does tell me!

I once heard that if you were going to tell a secret to someone...tell a dying man! I guess it works!

Anyhow, we had our little chat and then she says " Grandpa, I wish there was no such thing as ALS!" I replied...me too! She then said "Grandpa, I wish that ALS was extinct!" I was impressed as I had not heard her use that word before.

She looked off into space contemplating for a moment then said, "Grandpa, I have been thinking...I guess ALS is going to make YOU extinct!!!" I managed to keep a straight face till she left then told Joan. We just about peed ourselves laughing! I loved watching her work through the logic of the situation and the new word.

This same granddaughter went for a hair cut recently only to have the hairdresser package up her fallen locks. She very proudly presented them to me in an envelope with a big grin as I had teased her saying "if she didn't want her hair grandpa sure could use it!" All these grand kids of ours sure bring us so much joy!

Rick here..."Elvis on the Red - ALS Fundraiser"

Our very own Nick aka Elvis pulled off his best performance yet!

The 2nd annual ALS Fundraising Cruise on the Red River was a huge success! It was a perfect evening with entertainment, food and weather!

Thanks Nick for your support in so many ways!!!!

http://www.youtube.com/watch?v=oJMYWhaGvzo (Taken from his performance at the Gimili Elvis Fest)

http://www.youtube.com/watch?v=LW3Vx4VAiSQ
http://www.nickakaelvis.com/

Rick here..."Back home and to reality!"

Here I am with my latest new toy! A mechanical arm that helps me lift my food and drink to my mouth. It is an energy saver! The arms are really going fast now! I am in terror that soon I will not even be able to lift a can of beer! :(

We got back from the lake and started a series of doctor appointments.

The toughest was the respiratory specialist who informed me that my FVC (forced vital capacity) which is a measurement of your breathing ability was way down. Normal is considered 100%. At diagnosis mine was at 125% last spring it had dropped to 85% and now it sits at 46%!

This means...that I will be using a bipap machine to help me breath at night and as much as I can handle it during the day. They are also fast tracking me to get my feeding tube installed before my breathing get so bad that they can't do the operation. It will mean a week at Health Science Centre. I will still be able to eat by mouth but they want me to start using the tube for extra nutrition as I am down to 145 lbs. I started at 175 lbs. Joan calls me her "skinny ass husband".

We knew this was all coming down the road but we certainly didn't think this fast. So the road is getting rockier!

I sit today not being able to cut my own food, only using very light cups or plastic glasses 1/2 full.

I am unable to lift my hands over my head. I brush my hair and teeth only by supporting my arms on the arms of the wheelchair. I can't sit up or roll over in bed. Where I am put I have to stay! I was enrolled offically in the palliative care program last month. They have been great!

I now have a circulating air mattress to prevent bed sores as I can't move on my own. It also helps with the sweating and itching that I experienced quite severely before the new mattress.

Luckily, I still have my voice and am swollowing not bad but chewing is so very tiring. My hand dexterity is not bad yet but the strength is gone. My hand strength sits at 20%. Joan cuts all my food up for me. I am a 24/7 caregiving project! It is no longer safe for me to be on my own!

We have homecare now scheduled to start coming in and helping Joan 5 mornings a week.

Rick here..."Thanks Everyone for the great summer"

I just wanted to thank all the folks who helped to make my time at the lake so memorable and so much fun!

Starting with Joan, who lifted, haul, organized, cooked, cleaned, hoyered and a million other things to make this happen. She is one in a million!!!

Thanks to all our kids and grandkids who made the treak up! Also, my folks, and Joan and my brother and sisters as well as all our friends!

We had many laughs and tears together as a family!

A special thank you to Jake and Val, and Greg and the gang at Brerton Lake for all their help in hauling hospital bed, hoyer lift, commode chair, etc. etc. all up to make this trip possible. Even palliative care made sure I received my special circulating air mattress before I left. We have had so very much support! It was indeed a trip of a lifetime for me!

Rick here..." My last boat adventure"

So................I decided that the pontoon boat was so much fun that Joan and I would give it a run on our own. The gang at Brerton Lake Resort managed to get me loaded and my wheelchair even fit behind the steering counsole.

The only thing I didn't bargin on was how weak my arms have gotten!

After about a 100 yards out into the lake they were shot! Guess who got her first lesson in captaining a pontoon boat....my sweetheart! Way to go Joan!!!

This woman never ceases to amaze me with her versatility, good spirits and sense of adventure, although this one might have pushed the sense of adventure a touch closer to the edge than she prefers! :)

Rick and Joan here..."A hoyering we will go..."

Mom and dad came up to the lake for a few days and decided they were going to get in on the action! Both mom and dad learned to hoyer me. What an accomplishment for them both!

We even got a pic of mom giving dad a test ride. Now that is called trust!

Rick here..."Old friends"

My old Sperling buddy Kent really surprised us with a pontoon boat trip on Bereton Lake. What an awesome time we had!!!

He lined us up with some of his other friends...

Thanks to all the Reimer clan for all their hospitality and help. They loaded me onto the pontoon off their dock along with their father Jake. A great time was had by all!

Kent and I ended the day with a few drinks and a few tears as well! Thanks Kent!!!!! Joan and I will always remember what you did for us that day!!!!