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!!!!

Rick and Joan here...Finally back to blogging!

You can tell by our blogging or lack thereof that we escaped to the lake again. What a fantastic month we had visiting with family and friends!

You can see by the pic how Rick was enjoying the moment!

We have made a lot of memories!!!

We are posting a few pics with a few stories to hightlight some of the times we had this summer.