Joan here..How the "same old" brings security.

We have a guest room in our home that our grandchildren have dubbed "the princess room". I can't even remember how and when that even all started. Rick and I have always enjoyed the excitement on their faces when they announce that they want to go up to "the princess room" and watch their videos and eat their popcorn. The grand kids have been doing this since each of them were very small. The room consists of a king bed, microwave, tv, bar fridge, fireplace and their own bathroom. Rick and I have always got such a kick out of seeing their little wee bodies laying on this huge bed with their very own large bowl of popcorn tucked in beside them watching their videos!

Earlier last week I went around marking the wall coverings, furniture etc. in the house that were to be moved with green tape. Well, when one of our little grand girls came over and discovered all the green tape on the furniture in the house she was horrified! She knew there was change coming but did not like to see the green tape all over. Then when she finally announced that she wanted to go up to "the princess room" to watch her video my heart broke! I knew that the room was no longer the same as she always knew it to be!

When we got upstairs she discovered the mattress from the king bed was gone and only the frame was standing. Green tape was hanging everywhere and most of the smaller furniture was gone. She surveyed the room and informed me of each thing that was missing. I suggested we make a little spot for her at the foot of the bed seeing the mattress was gone. No way would she hear of that! She had to be in the middle of the bed like she always did when she came over. I ended up taking the small padded bench chair and putting it inside of the bed frame with pillows and blankets so she could sit there and watch her videos like she always did!

She then said to me "Grandma I love this princess room!" and I said "I know you do and I do too". She then proceeded to watch her video for awhile and then said "Grandma, I know that the little girl that is moving here in "the princess room" will LOVE this room!" By then our little 2 year old grandson joined us in the room and piped up and said "Grandma we need our popcorn!". I started to laugh. Nothing would deter these grand kids from having their tradition when they came to grandma's house. As much as there has been and will be change for Rick and I there is also much change for our little grand kids.

I write this knowing tomorrow the kids are coming to help us move. Rick is fast asleep right now. He told me today that his legs are really giving him trouble. Our life, as we have known it, here in this home will be over. We will be starting a new chapter in our life. This probably sounds funny but Rick and I went through the house room by room tonight. We reminisced over everything. I finished packing today and our master bedroom is now completely empty except for the two large bath towels that I kept back so we could have our last bath in our big tub! So here was Rick and I sitting in our tub in a completely empty room! Tomorrow morning we plan to have our last shower together in our big shower. These are some of the pleasures that we have always enjoyed and looked so forward to!

Joan here...Hmm what can I say?

Yesterday we met some people with ALS and some people who are caregivers of those with ALS. It was a stressful time for both Rick and I. Reality check. We were both not to anxious to be put in that situation. The last time Rick saw others with ALS he had nightmares for two weeks after. We did not know what to expect this time.

We did discover though that everyone has their own unique way of dealing with this thing. We met some wonderful people. Some people are in denial and refuse any kind of help. They act angry and bitter because I think they do not know how to cope. I really believe they are scared of what lies ahead. And some people I believe are just in plain old shock! What Rick and I have experienced, (I can only speak of us so far), is that if we stand together as a team, as partners, as one, we seem to be able to make decisions in peace and harmony. Rick has to see me as on "his team" and I have to see him on "my team",we are partners, we are here for each other. I believe that is what has made us so united and peaceful through some of these initial trying times. I just pray for each of the couples and families dealing with this disease that they too find that place of peace, the peace that passes all understanding, oneness, unity, and "team spirit". United we stand....divided we fall!

What a day....
Rick and I arranged for the purchase of a transfer chair...which means to me an even lighter chair than what I thought we had already! Hey... only 19 lbs...one bag of potatoes...I can handle that! We will keep that one in the trunk of the car and the other one for the house. We are so thankful for the people who have invented these things!
We drove out to Whitemouth today in the drizzle and cold of the day. It is suppose to be just about May not March. We drove in Rick's dad's truck as we borrowed it to move stuff this week. As we drove down the highway it was so incredibly magical. The truck has a spot where I could sit right next to Rick and really snuggle with him. He drove with his arm around me the whole way. We kept looking at each other and talking and talking and expressing how wonderful this was that we could be together! I wanted this to never end!!!

We finally went in and got our new mail box for Whitemouth. Box 77. Love those easy numbers. We need simple in our lives these days.

Oh yeah...yesterday morning we decided over our morning coffee to get a furnished apartment just for the month to ease up on Jake and Val some. They have been working around the clock. We then went around looking for some furnished apartments. Found two available for the 1st of the month. Looks like we will be taking the apartment in the apartment block that we first were together in. It is smack downtown. Talk about making a full circle. It is a very modest furnished apartment. We took that one over the other one even though it was not as nice because it was so comforting to go to a place that we were both familiar with and have so many wonderful memories there. Creatures of habit! Needers of security!

The sad part was though when we walked into the apartment I fell apart and started crying...it was like a home away from home for us right now in the midst of a storm! If you saw our house right now you would understand what I mean. I am sure the rental lady thought I had lost it...hey...I did!!! It is funny how we humans grasp for things that make us feel secure when our world is upside down. Our families have been so generous and have offered us to stay with them which we are so grateful for but right now...for us we needed our own place. We have so much work to catch up on and things to plan.

We are so looking forward to moving to Whitemouth and getting settled down! We look forward to meeting many new people also. And it is so close to the lake where Rick loves to spend time. For those of you who don't really know my husband he loves to fish....and I love to eat the fish!!! We always have this big discussion when we catch the fish...he says it is too small to keep...and I say there no such thing as a fish too small that we can't eat it! I am sure it goes back to my growing up days when each winter my dad would buy a huge potato sack of fish. On Sundays dad would do the cooking and would make us fish (when in stock) with his special home made fries. It was the time when he would let us eat and eat until we would bust! He was always inventing new dips for those homemade fries. We had ketchup fries way before they even were on the market. So to me if you catch a fish it was meant to eat... not throw back!

Not only does Rick love to fish...but he loves to feed the birds!!! He is such a kind man. He hauls big bags of bird seed regularly home from the store to put in our feeders in the back yard and out at the lake. The irony of it is in our neighbourhood most of our neighbours have cats! So I am sure you get the picture ...the cats love our yard!!! Lots of birds!!! It got so bad last summer that we got a notice from the human society because someone complained that we need to take care of the scruffy looking cat that we have! Needless to say we were not impressed as we were spending all our time trying to shoo the neighbours cats out of our yard!!!

For those of you who enjoy the numbers...here are some for you....
our new telephone number in part (don't want to advertise it over the net) is 2808 our anniversary is 2808...and our new apartment no is 508...we thought that was interesting? but hey how does box 77 get into the mix??? I guess for variety....lol!

I will close by saying once again thank you to all you wonderful, caring and loving people! It may not be Rick nor I that can be in a position to help you out in your time of need but I do know this...there will be someone there for you!!!

Rick here...just plain talking!

Joan is doing a fantastic job in saying much of what is going on in our lives!

Every day has its own challenges. This disease is like a slippery slide...nothing seems to happen real fast yet its progress is inexorable, never stopping. You really notice the change when you go to do something normal that you haven't done for awhile and find that you can't anymore. It is getting so anything physical at all is very very hard. My body is tired all the time. It in plain words really pisses me off!!! Thank God for family and friends who have come along side to help us with everything. We have such wonderful support!

I find myself incredibly emotional at times. Emotional swings can be a symptom of ALS. I am not sure if this is the case or if it is just a natural reaction to what I am facing, the things I will miss, etc. I find myself not being able to concentrate on one thing very long. My mind jumps all over the place. Probably a result of stress! Mind you...long periods of intense concentration have never been my strong point! lol

Anyways, enjoy your day, hug those you love and laugh a lot! That is what I will be doing!

Joan here...with two empty sheds!

It has been a few days since I have written anything because I am very busy with packing...mostly throwing out and sorting "stuff"!

Rick and I have been trying to squeeze in a few rides in between everything. It has been so beautiful outside. One of our favorite things to do is to go on long rides and talk and talk and talk. Every time we drive somewhere on the highway he always says how much he loves the prairies! He checks out the fields as we drive. He spent a lot of time driving equipment on the fields on their farm growing up. We have been going up and down to Whitemouth and even got in a drive to Portage La Prairie in on the weekend.

Some of our children and nephew came on Saturday to help us move. I have been finding it a bit stressful with having to make the decisions on the spot where and what goes here and there.

We spent some time with the grand kids in the middle of the outside move. It was so beautiful and warm outside. Rick and I are drinking in every moment we can sit in the backyard.

I looked out our kitchen window the other day and there he was sitting on the bench in front of the fountain. I could see him looking all over the yard from flower bed to flower bed. He then started crying. I went out and put my arms around him and sat on the bench with him. I asked him what was making him so sad at that moment. He said that every where he looked it is so full of memories. Memories of how we picked out that special plant together. How we decided where we were going to put it. How each tree and bush and plant held so many memories for him. So, we both just sat and held each other and cried. We both agreed though that it was the right time that we leave here as he can feel his body getting weaker each day.

His hands are shaking a lot and we discovered that he can't hold soup in a plastic spoon to eat. We have been using paper plates and plastic cutlery lately to make life simpler. So I have to be more attentive in making sure he has a larger metal spoon. Little things that remind us of how this disease is progressing. It was heart breaking for Rick to discover that. Eventually he will not be able to eat by himself so this is the first step towards that end. I told him that I would take care of him and make sure that I would feed him and if he was really lucky I would even play airplane! He looked at me and we both burst out laughing! Humor is like medicine to the soul!

Joan here...Rick and I are just so thankful to everyone!!!

Once again Rick and I are so thankful for all the caring, loving and thoughtful family, friends and neighbors in our life! They are so generous, kind and supportive in so many ways. From receiving donations for the ALS walk, to people helping to get the suite ready, to old friends of Rick's past getting a hold of him and planning a special day with him to reminisce, offering to help pack and move us, to meals, to getting his feet massaged (reflexology), to receiving supplements, to helping us getting our house ready, to receiving the gift of a week in Kelowna in a luxury condo, to receiving emails from those far away, to getting tips on where to find the right equipment for Rick. Rick is so thrilled about going back to Kelowna. Never mind to mention the fact that that is where he discovered in a quaint little brew pub the "specialty Raspberry beer" that he loves!!! It is all so overwhelming but so comforting to receive all that love, care, encouraging words, and the hugs. The list just goes on and on and on. So once again THANK YOU ALL!!!!

Special thanks to Uncle V and Aunt E for your special visit today. Your kindness, support and the first hand knowledge you shared about your experience in dealing with ALS patients. It really meant alot!!!! Oh yeah, Uncle V...you better show up so you and Rick can have that race at the ALS walk. Hmm...come to think of it. Aunt E and I will be having the race pushing you guys! What is wrong with this picture???

My husband's quote for the day....(Rick always makes me laugh when he comes up with these things...he says most of them come from when he was growing up and hanging around his grandfathers, his dad and their buddies.)

This is today's...."I had no shoes and felt bad till I met a man who had no feet!" You can't argue with that one that is for sure!

PS Just thought about...I better really get some practising in on pushing that wheelchair especially if Rick is going to go on a fast ride! :)

Joan here...Now the packing begins!

Just learned how to use the spell check feature on the blog. So from here on in I have no excuse for spelling errors. LOL

This weekend we spent some time with family. It has been a difficult time emotionally again. Once again, we realized that not only are we having a hard time with all of this...but so are they! There is no easy answer to all of this. We just need to walk the walk together! If we can all talk, laugh and cry together through all of this step by step I believe we can all find healing along the way!

Now the packing begins!!!

Joan here...It's Friday

Today is Friday, glad it is the end of the week. Rick and I will have the weekend together. The appraisal on the house came through today which met all our expectations! So that is a relief for all of us. So it is all bitter sweet!!! Happy to sell....so very very very sad to close the chapter on this book in leaving our home! We have built us a little nest for ourselves. We made sure we built a double shower, double sink, huge double tub....because we do everything together! That is us!!! We talk on the phone every minute that we are not together...we talk about the kids, our grandkids, our families, our work, and what we are going to plant in our garden this year, what we are going to cook for supper..and the list goes on and on. In 12 years we have not stopped talking!!! It is like we just don't have enough time together!

My dearest husband and I had another reality check yesterday evening. He went to bq some steaks...hey why not aye??? steak every night if he wants!!! And of course the tank was empty. He refused any help for anything so off he went. Later on, he admitted once the deed was done that he could not even carry one bq tank. He had to drag it from the car on the ground to the bq. I was so devastated. How does one watch their loved one disintegrate in front of their very own eyes and not be in anguish of their soul?

On the lighter side, we have had a wonderful phone call from Lorraine the daughter who lost her mom from ALS. She is organizing the walk in Whitemouth in memory of her mother and who we are privileged in joining in to spread the word and helping to raise the funds to find the cure for it! She has an incredible story of how her mom went through much pain, agony and stress to even be diagnosed. We have come to realize once again that Rick experienced a miracle in how he was directed to the right neurologist at the right time! If it was not for that, Rick too would have been going to the same neurologist as her own mother did. Anyone, who has had a loved one afflicted with this ALS does not want to see anyone else go through this.

Rick and I have been asked to speak to the students of the Whitemouth School about ALS at their ALS kick off in early May. We feel so very honored at being asked but so humbled in what can we really even can say!

As I write this, Rick's only brother, Garth, who took some of his holiday time, is busy out at Whitemouth along with Jake taping and etc. trying to get our new suite ready for us! No one will ever know how much this means to us!

Thank you everyone once again for all your love, kindness, and support. It may not ever be Rick and I that can repay you for all of this but we truly know and believe in our hearts...there will always be someone to help you in your time of need!

Joan here...Rick has to increase Lithium Dosage

A quote from Abraham Lincoln which goes something like this, “The good thing about the future is it only comes one day at a time”. That is how Rick and I have to look at all of this otherwise it is going to be too overwhelming. We have been receiving emails from all over. Everyone is being so encouraging!

Rick received a call from his GP about his Lithium level. It is too low so he has to take a larger dosage of it and have his blood level tested again next week until they can reach the desired level of lithium. Levels should be at .4-.8 but was only.18.

Rick here...No wonder Jesus said "Suffer the little children to come unto me!"

You want heart break...innocence...honesty....trust a little child!

One of our little granddaughters ---5 yrs. old. approached me privately the other day. In her hand she was holding a little Canadian Flag on a stick. She said "Grandpa, I know that you are sick. And I know that you are going to die in 5 years (hmmm???--apparently something stuck in the 2-5 year life expectancy chat) anyhow, she handed me the flag with tears in her eyes and said "Grandpa, I want to give this to you so you will remember me!" She then hugged me with all her heart! My God! talk about a melt your heart moment!!!

Then, a moment later she said "Hey, Grandpa, Do you know what?.... I will be 10 years old then!" (5 + 5= 10) She is a math whiz! Off she went to play and all was well! She is working thru it!

One of my great fears is how all the 8 + one on the way grandkids will handle all of this! I think God used this one to give me confidence. I have such wonderful memories of all four of my grandparents that a major source of pain for me is that I won't be here as they grow older. I so much wanted to be there for them!

Okay....that's it...I am losing it!!! More later.....
Rick

Rick here......AAAAGGGGHHHHHHHH!!!!!!!

AAAGGGGHHHHH was the sound I made as Joan took me for my first outside ride in the new wheelchair! We decided we needed to get this thing figured out before it is the only way I can get around. What a riot! ( Actually...Joan says she was worried about going on the ALS walk and not sure about how to push me in the chair)

I had an emotional and kind of tough day...hmmmm...wait a minute...they are all like that!

Anyhow...we decided to go for my first trip outside the confines of the garage so we got all set up and off we went. Jokingly I told Joan...I'm not going to tie up in the seatbelt...GOOD THING!

We hit the bottom of the driveway under speed...a 6" drop...no big thing if you hit it staight on....a hell of a deal if you hit it at an angle!!! Guess how we did it???? Barely missed sitting in 8" of water :)

I came flying out of the chair...Joan screaming " I'm sooooo sorry....I told you I'd be no good at this " and both of us hoping the neighbors weren't watching....( I still have some pride left)

We both crumpled over laughing ourselves crazy!!!!! Boy..did I need that laughing time!!!!

It even gets better....as we came around the far end of the bay I said..."Hey Hon...I'll try doing this myself "....at the time we we were going full speed. Obedient wife that she is ...she let me go....oops....wound up on the curb and into the next guys lawn...looked like one of those old 'Laugh - In' episodes where the guy kept crashing his tricycle...resulted in more uncontolled laughter!!!! I am sure it made a big impression on the 12 year old kid that was walking by on the way home from school!!! Hope we don't have the cops at the door tonite investigating ' cripple abuse'!!!

Anyhow....a big thank you to Craig who has sent us a large supply of food supplements ....Thank You!!!!!

Also much thanks to all who are fundraising and donating to the ALS walk in May. Joan has done a couple of updates on the site so it may be offline for a day or so. Just found out that there has been a gracious donation of hats for 'Team Rick' on the walk...thanks!!! My sister Marsha says "we will have the most strollers on our team for sure!!!!!!!!!!" Guess thats what happens when you have 8 grandkids and one on the way!!!!

If you are planning to join us on the walk please let Kyla know so we can have hats and T-shirts for you...email her at biosciencebaby@hotmail.com

Rick

Joan here...Excited about the ALS Walk on Friday,May 23rd, 2008

We are so thrilled at the way the support for this walk has been coming in. Everyone is working so hard to get the word out about it. It is the very first ALS event that I think any of us have participated in at least I know for Rick and I for sure. Hey, we didn't even really know what ALS really was. We heard about Lou Gehrig's disease but that was for a famous baseball guy years ago not for anyone in our family.

And here we are right now, every day staring it right in the face! We can't run or hide from it. Everytime Rick falls, everytime he tries to climb the stairs, everytime he tries to get up from a chair, from the toilet, out of bed, getting his pants on in the morning. Yep, it is right here!

We just don't want to ever ever ever have anyone else go through this in their life! So if by going on walks and taking pledges, getting donations is going to help to get rid of this thing...we are all walking or whatever it takes!

It is so sad to come to realize that Rick and I always haved loved going on walks together and here we are going to go on this walk and he won't be able to do it on his own two feet! I can't even imagine how he feels inside knowing he will have to be pushed in a wheel chair! As I write this I am so devastated and I can hardly type for the tears! This is all a very bad dream no it is the worst nightmare I have ever had!

Tonight he told me that he can feel that his legs have taken another turn. He can feel that they are even more weaker than before. He goes to bed exhausted every night. I can not believe how ALS affects the body by always keeping his muscles moving day and night and he never gets rest even while he sleeps. As the muscles die other muscles kick in and try to do the work of the atrophied muscles. As a result simple things become a huge effort and Rick is tired from doing even basic things.

I can't let my mind wander to what is ahead or I will freak out! Rick says it feels like his mind is trying to think three things at once...which we all know is impossible...but that is how out of control he feels right now. Thoughts going in all directions as we can't even imagine. This I know....he wants to live a long and a full life! And that is what we all want for him also. I am so glad that both Rick and I know we are not alone!

Hey- Rick here!

Well...I have jumped into blogging. Joan has done a fantastic job of getting this set up and letting you all know how things are going. She has finally nudged me over the edge and here I am :)

I have not come to terms with any of this. Trying though. I have been living in a cloud for two months now to the day. As I was diagnosed on Feb. 1, 2008.
As you can imagine - this has been a real kick in the guts for us! All my grandparents lived into their 90's, Mom and Dad are going strong and I always thought that if I was careful crossing the street I had a pretty good shot at a long, long life!

I have determined to be frank about the reality of what we are going through in hopes that down the line it will help someone. Joan and I have read alot of fluff and we really just want to be down right frank and open.

I have been accused of being an eternal optomist (and I guess I am) but I intend to try and be very honest about this walk that we are on with out candy coating anything. It is so important that people understand what ALS is and what it does.

I also want to leave a record of my thoughts and feelings and experiences as we travel down this road. As the old saying goes ' nothing clarifies your thinking like knowing that you are going to be shot at dawn!'

First, above all else...it must be clear where I stand with God in this. My theology is fairly simple....good things come from God...bad things don't!!! The only place that God's perfect will is done is in heaven and there is no sickness, pain or poverty there!!! That is why Jesus said...pray that his will be done on earth as it is in heaven!!
Heaven is real! But so is our life down here. I believe in healing but I also know that healing does not always come.

Reminds me of a joke....an angel appears to a man and says...I have good news and bad...what do you want first? The guy says...give me the good news first. The angel says...well...the good news is you are going to heaven - the bad news is that you are going now!!!

That is kind of how I feel. I know where I am going...the incredible pain is about leaving your loved ones behind and of having to face what will probably be a pretty nasty way to go.

Anyhow.....now that I have started blogging the floodgates will open, I am sure.
Rick

Joan here...One of those moments...

Rick woke up to one of his reoccurring dreams of sitting in a motorized wheelchair. Not being able to hold up his own head or speak. He was sitting there in the chair with a straw thing in his mouth to tap on the key board. He said it was so real and so terrifying! We sat together having our morning coffee and just talked and talked. This evening all of a sudden he disappeared. After awhile I called out to him but he didn't answer. I remembered that I heard a door close earlier so I decided to go and check and see if he was okay.

I am getting more edgy about him and stairs these days. So, I opened the door from the kitchen into the garage and here he was...sitting in his wheel chair trying to steer it around. It caught me so off guard. I just stopped and looked at him and then asked if he was okay. He said he just never really took any time to sit in it before and steer it around. My heart just sank to see him sitting in it and driving it around the garage...but I understood. I took a deep breath and looked at him and said "Hey, I have never really sat in one of these either before. Let me see if I can even steer it" Now that was a sight. I steered that chair like I drive....bumping things as I drove all over the place. We both started laughing!

Rick and I want to both blog on here. So he is building himself up to start soon.