Rick here..."A letter from Katie"

At the end of a particular difficult day there was a little knock at the door and our granddaughter Katie came bounding up the stairs with this letter. She came over to my bed and leaned on her elbows which is a sign that we are going to have our heart to heart talk. She said "Grandpa mom and dad have been talking to me and I know that you are not doing very good. They said if I have anything that I want to tell you that I should do it now so I put it in a letter for you. As she turned to go she looked over her shoulder and said "and grandpa I want you to know that EVERYTHING in that letter is true!" Then off she skipped to bed. What a gift!

(Typed as she printed it spelling and all. It now sits framed in our suite and forever in our hearts)

"grandpa with out you the sun would't glow.
Your the one who keeps the earth spinning.
Your the one who keeps the flowers from wilting.
When I'm feeling down you cheer me up with love!
Without you I wouldn't have lernt: chess, fishing,reading,riding my tricycle, how to face my fears.
Your the other half of my heart.
Your the day light of my day.
Your smile is as bright as as sun glow.
your the one who inspired me to be a musician.
If you weren't here I wouldn't have been to banff.
Your a wonderfull grandpa I couldn't have asked for better.
You touch my heart and you always will no matter what.
your the one who told me to never give up.
Your the one who went through all that trouble to build that playhouse."

Joan here...."The Joy of the Lord is my strength".

Over this past 2 1/2 years we have had many people say to us..."I do not know how you two do it!" I found this little ornamental stone cross at the $1.00 store one day and it says it all..."The Joy of the Lord is MY strength". It sits on the little stand by Rick's hospital bed and every time I go to put water or clean the hated bipap machine I am reminded of where I need to focus and it lifts my spirits.

I just returned the manual wheelchair this am. As I was pushing it down the street heading to the post office I felt like I was walking a walk of memories of when we got this first wheelchair and places I pushed Rick in this chair. Remembering how angry I was when I first saw it and how I gave it a quick kick, how I nearly tipped Rick into the puddle of water at the end of our driveway in our first test run...on and on the memories came as I pushed this empty chair. It was so bittersweet!

We have been so busy with getting Rick's meds and bipap machine increased, doctors, health care providers and etc. We have been noticing changes every couple of days in his breathing and comfort level. So with every change there are a lot of adjusting to do in every area.

Our software specialist nephew, David purchased a piece of new technology head gear that reads brain signals. So we will write more on that once we receive it. I keep teasing Rick he will have to watch what he is thinking because we will all see it on the computer screen! :)

We just cancelled out trip to Wpg to visit the Health Science Centre for a meeting with his respirologist Dr. Janice. He just is not up to that length of bouncing around in a van. I am afraid his travelling days are over. They do have a Tele Health System situated in various areas in MB. Who would have thought....Whitemouth has one!

We have been amazingly treated and taken care of by the Health Care System in our area. NEHA has been amazing with sending us incredible people to deal with Rick's care. We have an absolutely wonderful Dr. Spence, Cheryl Palliative Care, Laura Home Care, Alva Registered Nurse, and our home care workers, Carol, Jeannette, Julie and Debbie. Never mind our fantastic OT Louise!

Lets not forgot the most incredible one of all is my husband Rick who has kept his joy and thankful heart through all of this. What he deals with each day is above and beyond what I know I could ever endure with such grace and thankfulness of heart that he always has! He is moved and hauled around by mostly us ladies. He depends upon us to be quick on our toes and keep him hooked up to his bipap machine at all times while transferring him. This becomes especially important when we keep having these summer storms and the power goes out. It takes a bit of strategizing each day before we start the transferring and hoyering process. He sits or lays for 24 hours a day without moving anything but his head.

Rick depends on us for his food (feeding tube feeding) and for a couple of teaspoonfuls of reg food every once and awhile as a treat, his 1/2 cup of morning coffee, meds, his complete toileting, even steering his wheelchair now, positioning him, scratching an itch, reading to him, changing channels now on the tv as the sip and puff is no longer useful, everything he needs he is at the complete mercy of whoever is his caregiver for the hour is. We are his hands and feet! I am so proud of him! As our doctor told me...."He is a brave man!!!!" Thanks for keeping us both in your prayers especially during this more bumpy part of the journey!

Rick and Joan here...What months....no we got weeks???

Well...we are here...what does that mean....what happened to months.....we are talking weeks....
We have breathing issues......unreal!!!!
I thought we would change the issue of breathing by meds....I found out that I will never change the breathing issues....
Rick and I are so grateful...we have been in consultation with our respirologist and palliative care as we try to increase the variety of meds available to us to try and keep me from struggling to breath. I am pretty much a prisoner of the breathing mask now as I am only able to remove it for a few min of a time and that is what is at the help of some very strong meds.
I thank God that I am able to speak all though with not much volume....
Each day never mind week...things are changing for me......

Sadly, the slow slippery slide of this disease is picking up at incredible speed this last few weeks!!!

Joan and I are fighters and we will never give up!

Rick and Joan here..."Rick's mom and dad"

Rick's folks are amazing! They are both in their 80's and they come every two weeks when it works for them to spend time with their oldest son. This should be a time in their life where they are foot loose and care free but unfortunately, have not had this luxury this past while.

Rick and I have many cherished memories of going to Wisconsin Dells, New Foundland, & Vancouver Island with them.

We had so very many laughs with them in our travels. We were with Doreen & Wendal shooting pool , getting "Screeched in", going into the mines under the ocean on Bell Island, Doreen almost falling into the ocean as she touched the ocean for the first time in New Foundland.

Watched them take off in a helicopter, hearing about the not so famous "House on the Rock" from Wendal (which we drove a few hours for him to see as we thought it would be right up his alley! lol) them witnessing my first attempt to book a motel on line and finding out what you see on line was not what was there for us when we arrived in Wisconsin Dells.

Witnessing how Doreen would spot and point out the whales way out in the ocean before any of us on our whale watching tour even got a glimpse they were there. Out of the blue, being invited into a house boat on the Victoria Island Harbour to get THE tour of a home that was featured in a magazine. Watching them ride away on the rickashaw as they headed out for a evening dinner. Watching Wendal and Doreen have an artist draw a pic of them on the harbour. Having the most exquisite dinner for my birthday with the wine paring experience. One of the weird things was touring through the Titanic Exhibit with them in Victoria. We were all given tickets to board the ship with real life names of people and occupations. At the end we found out who lived through the Titanic. Wendal, Doreen and I lived through it but Rick was one of the ones to perish. Rick and I often look back at that moment and go "wow, that was so weird!".

It was so important for Rick to go with them to the Atlantic Ocean and to the Pacific Ocean. We experienced "Mile 0 to Mile 0" in Canada. These are all so many memories that are fresh in Rick's mind about his folks never mind when they come here and take care of him!

Kudos to you Wendal and Doreen!!!

Rick here..."Me and my urn!"

Now that we have internet once again....we are back.....Joan and I started this blog as a way to keep family and friends up to date on how things were going so we wouldn't have to individually contact people each time there were changes. If they had questions they could initiate contact with us. This left it up to who ever wanted to know anything they could read our blog for themselves. We determined from the start to be as vulnerable and transparent as we could be in sharing our perspectives, our victories, our defeats, our fears, our hurts and our triumphs. After all....it is our story. There have been a couple of unexpected rewards for us. We have made friends with people all over the world. And have also found that blogging helps in confronting and dealing with the life issues, good and bad, that we have had to face fighting ALS.

What it boils down to especially now is I am face to face with death in the near future. As I shared in the previous blog I am an incurable optimist but also a realist. Outside of a miracle given the rate of decline of my breathing ability death knocks at my door. I am fighting the good fight and I am certainly not given up but would be a fool to deny what lies ahead. I have found that it takes a lot of intellectual and emotional fearlessness to confront these things head on when you are actually in this situation. Taking into consideration that any one of us could not be here tomorrow it is just in my situation it is obvious in the way my vitals are declining that it is no longer theory but very practical and real.

ALS affects every body so differently. In my case, I am so thankful that I have not lost my ability to speak. In saying that, there have been tonal changes and I am dealing with hoarseness and stubborn flem in the mornings that I have a hard time clearing to be able to speak. My actual ability to form words has not yet been affected. What does happen though as my lungs have become weak we have noticed this last while that I don't have the air to force out in order to create sounds. I actually speak more loudly with the bipap on as it forces air into my lungs so I have something to speak with. I have noticed that after a while I actually start to talk in a loud whisper. I know this is the beginning of my voice no longer being able to project audibly.

No one knows the future but given the rate of decline of my breathing and the degree of speech capability that I now only have I still hope to be able to speak even though in just a whisper to the end of this journey. That is a tremendous blessing and as many with ALS can attest to!

Having lost a couple of friends recently that we got to know through the ALS Society it has prompted me to finish up some of the details concerning my passing. Joan and I went ahead and got our memorial stone picked out and placed at the Sperling Cemetery quite some time ago. That in itself was an emotional feat! Some of these kinds of things are a whole lot easier to do when your demise is way down the road then it is when you know that you have limited time. It takes an incredible amount of emotional reserve to take care of these things.

I am determined to take charge of these areas so that Joan is not left to deal with them on her own at the point of being at the peak of grieving. I was honoured to have been given a hand crafted burial urn for my ashes from a dear friend of my Uncle Keith. I love it! but have to admit it is quite a mind warp and an emotional experience laying immobile in my hospital bed looking across the room at it and thinking hmmmmmm my earthly remains are going to be in there soon. Very weird! After awhile of having coming to terms with it we now have it safely packed away until needed.

I am looking after some of the other details as far as choosing a funeral home and deciding on things like whether to have a viewing first or not, details of a memorial service, writing my obituary, choice of songs and several other details. I am in the process of thinking about having a traditional funeral or even not having a funeral at all.

With all of this it stirs emotions deep deep into my being. I guess this is all part of the grieving process and dealing with the transition of my passing from this life to the next and letting go. I know that I am going to go to heaven but I just don't want to go anytime soon! For me, each day means so much as I see the sand in the hour glass running out! I believe eternity awaits all of us but I am determined to squeeze the best out of every day that I have left for I will not walk on this earth again as I now know it. Hey come to think of it....I can't walk on it now! :)

Before you write me off as just being morbid you have to realize that I would bet nearly 100% of people with a terminal illness that have the luxury of having a rough idea of their time left go through the process I have described. I have simply found it easier to embrace the reality of my situation rather than avoid it. Another example of things people think about but rarely speak about is the whole issue of suicide when facing a terminal illness with no hope of a cure and every certainty of hellish suffering.

In the early stages of the illness I dealt with those choices as well. I have known of some ALS sufferers who did chose to end it all earlier. I do not judge them and believe it actually takes great courage to make that choice. It is just that for me that was not an option. I wanted to squeeze the best that I could out of every minute that I have. The irony of this illness is that when you have the ability to end it yourself you still have enough quality of life left to want to hang in there. By the time the quality of life is gone you are no longer able to pull the plug. To me it is important to go down these different paths in my thinking and not to be afraid of speaking about them and letting people understand your decisions and choices.

"Even though I walk through the valley of the shadow of death I will fear no evil for YOU are with me!"

Rick here..."Honey want to go quading?"

In our part of the country if someone says "Do you want to go quading? It means a couple of fun filled hours ripping up and down woodland trails, splashing through swamps on an all terrain vehicle. It hit me the other day, that when I ask Joan to go quading it means "taking her quadriplegic husband out for a walk in the power chair with her steering the chair". lol This pic was taken at one of my favorite spots in Whitemouth on the old town bridge. It is a very pretty spot.

I have been trying to come to terms with the reality that I am essentially now a quadriplegic. My mind has still not got wrapped around the reality of my physical condition. I am still the same person inside even though I can no longer, walk, eat, go to the bathroom myself, lift a hand, and scratch an itch, never mind scratch anything else. I can feel everything even down to the mosquito that would land on my foot. I look at my legs and arms and try to move them with the same success you would look at a chair and try to mentally pull it out from a table. It just doesn't work!

One of the hardest things has been developing the mental toughness to deal with the constant itches, cramps and discomfort and pain that being immobile brings. Joan has been fantastic in trying to keep me comfortable. But there is only so much any one person can do. With ALS you just have to draw on your reserves to get through it.

When I was healthy and I thought about "me" it was all inclusive. My legs, my arms, my mind. Everything was just one big entity. As my body continues to give out I have found that "me" has nothing to do with my body. But instead, is a spiritual being who simply uses this body to get around on earth. I knew all of this as I am sure you do theoretically but I know it now as a truth not a theory. A good analogy would be a driver in a car. The car lets you get around but it is not the driver! Same goes with us in our bodies. At some point or other the car gives out and the driver steps out of it and walks away. Again these are concepts I have always acknowledged but now am learning about at a whole different level.

This last number of months as my chest muscles have continued to weaken and breathing has become so very hard even with my meds and bipap. It forces me to confront my own longevity in a much more direct way. When your legs and arms weaken and give out it is very hard but you can compensate by adapting how you do things by using things like the power chair or simply by not doing somethings at all. Breathing is not like that. As your breathing gets tougher and tougher you have to face your mortality in a whole different way. It is no longer theoretical. The bipap machine has been a God send and has actually extended my life by months. I know that without it I would have been gone already.

We are now using meds 24/7 to help trick my brain into thinking I am getting enough oxygen. We will continue to increase the dosages as needed to provide me some degree of comfort but you can only go so far with that as well. This brings a relief from the struggling and anxiety of trying to breath. But I must confront and deal with the fact that we can only go so long like this before even that won't work any longer. I have personally chosen not to go with a tracheotomy at the time that my lung muscles completely give out. This is a very personal decision and everyone is different. In my case, I feel that it would extent the pain and suffering past the point that I would be able to deal with. It would also put an unimaginable burden on my loved ones. I might have a different perspective on this procedure if there were any hope of a recovery but at this point with ALS there just is none. I made this decision very early on after diagnosis and much study and practical experience have only reinforced it my mind that for me this is the right choice.

As you know, I am an incredible optimist but also a realist. I guess growing up on the farm at Sperling built that into me. My reality is that if everything goes right I will be lucky to have a very few months left barring any kind of chest infections which could take me out in a matter of days. Each day is precious and the things that really matter become very clear. Like the old saying goes "Nothing clarifies your thinking more than to know that you will be shot at sunrise!".

Joan here..." Happy Canada Day/Hail/Homecare"

Rick thought he would get in on some of the "Canada Day" action even though he spent it in bed! Cute cap "EH!!

Yesterday, we were hit with a big storm and lots of rain and hail. The hail was the size of a loonie in places.

Rick says he loves watching the storms and the weather. Must be the Sperling roots at work here! We love using the intellicast weather radar system on internet to tract these storm cells.


We had our very first homecare 24/7 overnight respite here. Jake and Val took care of all the feedings and meds that needed to be administered so this could happen. Rick's mom and dad have been so faithful to have been doing this throughout this past year to give me a break. If either one of them would get sick...I would not have their back up so Rick and I have been working on putting this in place.

For any of you who have walked the ALS journey you will understand what a danger care giver burnout can be. It sneaks up on you so you have to stay ahead of it if at all possible.

We are so fortunate to have the homecare team that we do! Just wished they were allowed to do some of the basic care that ALS unfortunately prohibits them from doing under normal care.

We just can't leave Rick alone at any time at all without someone here who I have trained. Homecare can't do regular feedings, tube feedings, administering meds due to the nature of the ALS disease. There has to be one of us available to do those things.

I found out it takes quite a little bit of organization and scheduling for me to have a day off with Homecare here. Because Rick's folks and Jake and Val have been here learning step by step along the way with me they can come in and just get updated. But for anyone else they have to be trained first as you can't just jump in and take care of someone with ALS if you don't know the way of the disease.

We are in the process of having our respirologist put together a protocol for the ambulances in the area to have on file. So if our address comes up they already have all the info on file. Palliative Care suggested that we do this to eliminate any confusion. For example...if you don't know ALS and he is having trouble breathing you would assume you would just give him oxygen...well that could actually cause him more problems!

I have made a list of what should be done in case of an emergency now posted on our fridge along with the ERIC kit and Advanced Care directives and phone numbers. This should eliminate some last minute flurry should we need an ambulance. Rick has to have the bipap with him at all times....even in an ambulance. His bipap has it's own personal settings so where he goes it goes! This is all gone beyond being simple!

Joan here..."We are still here...just haven't had internet for a week!"

Sorry to have worried you folks out there. We had quite a week!!!! One evening around 11:00 pm at night the hydro wires from the pole to the house started arcing and caught on fire right at the house connection. You can imagine the flurry. It is right outside the door from our living area. Rick's folks were at our place giving me a break and here they are watching this happening with Rick laying in his hospital bed. My days away have been turning out to be on the disastrous side.

Jake's experience as a fire fighter sure paid off. Within minutes everything was put out. Hydro was off for an hour and a half only due to Rick's condition they made a special trip to fix it all. Gladwin showed up with a generator to get Rick's air mattress hooked up as he had laid there for awhile with no air in it. Very frightening as the hospital bed wouldn't work either . Jake moved Rick's wheelchair with adrenaline power over to where they could hook Rick up for air. Home care and the rest of us learned how to crank in a hurry. So we have spent the week with a lot of things out. Rick is right now gleefully in a hospital bed that is once again electric! Homecare zipped around as fast as they could to get us a replacement bed which we are so incredibly thankful for!!!!

As far as the internet access we are hoping in the next few days the routers will be in and installed. I am using my sister's computer to type this. Rick and I have really felt isolated this past week with no internet etc.

We were so thankful Jake and Val were home to immediately deal with the hydro/fire situation. IF it would have been any later in the evening it could have been too late for everyone in the house...not a pretty thought!

My days off have been quite stressful that is for sure...the fire last Friday....and today when I left in the am I took out two cars with me!!!! Not proud of it...I still can't believe I backed into the homecare worker's car and really damaged it as well as Val's car. I couldn't just hit one of her doors no.....to make matters even worse...I had to back up and smack both the doors!!!! I am really thankful they have forgiving hearts that is for sure. Rick and I always joked as it was always him hitting something and denting the car so for me to do this was a real hit to my driving pride never mind my record! Can you say STRESS anyone???

Besides all this fun, this week has been a week getting Rick's meds full time in place on a different level. That is stressful in itself! He takes alauded for long term relief and 10 min before he eats or dresses or gets moved he gets other meds to get him through. He only has his mask off for minutes at a time even with all the meds. He keeps asking for the bipap after a couple of minutes of being off it. So stress was the key word for this past week that is for sure.

He continues to be in good spirits despite the discomfort of his challenges for the day. So for that we are so thankful and never mind the fact that everyone is safe!!!!