Joan here...What a small world we live in!

Our oldest granddaughter was telling us that they were going to have a fund raiser for ALS at their school in Whitemouth the other day. Can you believe that? way out there? Anyway, story gets even more interesting...today my cousin sent us an email telling us about a fund raiser for a woman she knew from Whitemouth who had passed away from ALS. The lady was a school teacher there. She passed away last fall. We are moving there May1st and here there is already an ALS walk scheduled for May. Hmmmm....small world.

So if anyone is interested in going on the walk, Friday, registration starts at 10:30 May 23 from the Whitemouth School or donating to the walk...just let us know....Rick (in his wheelchair as he wouldn't be able to walk very far) and I are planning to make our first ALS fundraiser walk IN Whitemouth! Unreal!!!

Will update with more details soon.

Joan here...Showers of kindness!

Every year my mom's side of the family hosts a "Grandma's Tea". It is done in memory of my grandmother. She loved drinking tea but it had to be out of a tea cup. So over the years we all got a tea cup from her. So when we go to the tea everyone brings their tea cup and her favorite food dishes that she enjoyed. They also have a silent auction and raise money for all kinds of things.

To our shock and amazement Rick and I were presented with the proceeds from the event. We are just so overwhelmed by the kindess and love from our family and friends.

Rick's fasciculations have been steadily increasing in his hands between the pointer and thumb and his hands shake more.

My cousin was trained as a reflexologist. She came over with her specialty chair, training books and etc. She worked on Rick's feet last night and will be training me how to do that so no matter where Rick and I are I can give him a treatment. It really helped to relax him and put him to sleep.

To the person who wanted to remain "anonymous"...your casserole and soup was absolutely delicious!!!

Thanks so much!

Joan here...Moving date April 30th!

Well, it is a GO!......we will be packing our bags as possession date is May 1st. Congratulations Sheila and Dave and little Amy!!! We are so happy it is you guys that we will be handing over our keys to. Thank God that we are working with a couple who want this to happen smooth, peaceful and fast! What a fantastic testimony of how people can work together!!!! You guys (what the kids say) rock!!!!!

Joan here...Our home has sold!

Wow! what a night...what can we say??? Our home is sold to a very wonderful and loving couple. Our hope is that they will be so very happy together as we are living here! This is such an incredible hard thing for us to do. To know we will be packing up and leaving here soon. All things in their seasons. Oh...and by the way....all prayers for us are gratefully accepted!!!!

Joan here...Getting ready to sell!

This is so hard for both Rick and I. We keep changing our minds at how much we want to list the house for. The reason is and the truth is both of us don't want to move! We love the little nest both of us made together. The plants we picked out to plant in the garden. The colour of sheets we picked for the beds. The colour of paint on the walls. Oh yeah...and the extra goodies in the bathrooms for anyone sleeping over. Our home is an extension of ourselves and wanting to make others feel loved, special and welcome here.

The real estate agent has called us twice now and upped his version of our listing! Hey, maybe if we wait a few more months it will really be worth it??? Anyways, everyone is just trying to do their best for us and we are so greatful...but nobody can take the pain away of all of this.

Our goal...is to have a place where Rick will be given the best care that we could possible arrange for and be able to have an income to pay the bills also. Our son and daughter in law have given us a one bedroom suite within the walls of their own home to enable us to live there without having to worry about hydro, heating and etc. They gave us a place to live so I will not have to work right now and be able to spend every waking moment with my husband. Because of their own medical knowledge I will have the extra help I will need down the road. They knew that I would not want to ever leave him alone. The only way was for us to sell and move in with them. We are so deeply touched that they understood the level of commitment and love Rick and I have for each other.

There will be a point where he will not be able to be alone with anyone who does not have their CPR training. I believe Jake is at the level now of being able to train anyone who will need that. There are so many things we have to be aware of ahead of time. We are constantly told to plan ahead...be prepared....and yet we are desiring to walk in faith in God but also have seen where people just stick their heads in the sand and do nothing!

It is unreal how our mind works. During the day Rick will not let his mind think about the possible outcome of this...but at night when he is sleeping he is dreaming about moving his wheel chair with only a straw from his mouth because nothing else is working. Talk about terror! but from all that we understand and read...unless we experience an absolute miracle that is exactly the future of this thing. I just keep thanking God that Rick and I are so close and love each other so much. I can't imagine not having someone to share this with and walk through this with and not be really connected.

Joan here...A Night Away!

We were given a night and dinner away by one of our nieces. We couldn't believe how thoughtful she was. We ended up being given an upgraded room with walk in glass shower, plasma T.V., individually controlled mattress, duvets and etc. We figured out that we were the first ones to ever sleep in this room. As it was just renovated. Oh, yeah---the view of the city was awesome! Stayed on the 26th floor. It was so nice to get away from looking at the house and what still needs doing as we get it ready for sale.

On our way home, we stopped at a very nice bistro for lunch. Went to the bathroom...yeah..I know too much detail!!! All of a sudden, I found myself thinking of how Rick and I would be able to manage such an outing down the road once he would be in a wheel chair. It is amazing how our minds work! I have to start adjusting my thinking to all kinds of things. Something so basic as going to the bathroom could be a real achievement for us down the road. He will be needing help....does that mean I take him to the woman's or the men's washroom? Interesting trying to figure some of the little stuff before needed but I have to allow myself to go there in my thinking no matter how silly or painful it can be! I guess alot of this is coming to terms with what is ahead for us. Shock and denial are slowly fading and having to face things is slowly becoming a reality.

Joan here...Started Taking Lithium Carbonate today.

Rick's GP wrote out a prescription for his Lithium treatment today. We are really hoping it will slow down or stop the progression of the symptoms he is experiencing. Because it is such a new approach to ALS no one has the long lasting proof of this really working. Every ALS person is a test bunny when taking this.

Rick asked his GP if he has ever treated an ALS patient before. He said "No, you are my first one.", and Rick said "Well, I have never had ALS before either. So, I guess we will learn together!" His GP told him to bring in the Handicap Permit Application and he would fill it out for him. He has been such an awesome GP!!!

Rick has not been experiencing any side effects from the Rilutek he has been taking todate. We are very encouraged by that.

We have had some really sad days though! And on the brighter side have had some really wonderful days!!! People have been so kind to us. I have been adjusting to having to do more and more on my own. Rick just doesn't have the ability to help me with the packing and getting the house ready for sale. I feel so helpless as I don't have much upper arm strength myself and I am so dependent on others helping us. Very humbling! I know this is just the begininng of it all. That makes me sad.

Yesterday morning Rick had a very difficult time as he was heading out the door. He stopped and turned around and told me that! So, I told him that neither he or I could change how he was feeling and that only God can help us now. This whole ALS thing is way bigger than both of us that is for sure. We both held each other and prayed. In my mind's eye I saw a pair of wings flying upwards carrying something. I prayed according to seeing the wings lifting what I believe was our cares from us for the day. Rick called back later on that morning and said he was having one of the best days he has had for awhile. We both thanked God for his faithfulness and for anwering our prayer.

Joan here...Grandchildren know how to make us smile!

Just when you think things are bleak and joyless like on a day like today when Rick got his wheelchair delivered then pops up a sweet little granddaughter with a comment "Grandpa you have such yellow teeth!". Rick and I looked at each other and burst out laughing. Our older granddaughter chimes in and says "You can't say that. That is not polite!" Without a moment's hesitation the little one chimes in again and says "Thats what Mommy tells me about my teeth!" Well, we laughed and laughed about that one for some time. Needless to say Grandpa will be fixing those yellow teeth!

Joan here...Started Rilutek/Riluzole

Rick got a call yesterday, March 13, 2007 from the Neuro that his prescription for Rilutek (check the link for more info) just came in. So he started taking it last night. It is supposed to at best slow down the disease maybe by 3 months. He contacted his GP today with the information for Lithium (for more info on this drug see the link) which by the few tests done has appeared to have slowed down some of the ALS symptoms according to the users on the different forums. Hopefully, he will get the prescription for the Lithium next week.

He also had his first wheel chair delivered today! We are horrified about the thought but know we will be using it now when we go to the malls as he gets very tired walking. The thing is so ugly and very heavy. Yet, it is suppose to be the newer lighter version. I know Rick and I have to start looking at the cane, the wheel chair etc. as our support friend not our enemy but boy is it hard to do that!!!! :( We are so very thankful for the ALS Society and the staff at Deer Lodge Hospital who worked with us this past month for making sure he had one on the way before he has to use it all the time.

On the positive side, we were shocked as the wheelchair they sent was actually a brand new lighter version! And came with a black leather seat!!! We were so thankful that the lady went out of her way for us and Rick has the best. It will make it easier for me to handle getting it in and out of the car. I still can't believe I am even writing this as it seems like this is all happening to someone else---not us!

Joan here...Can this really be happening to us?

On February 1, 2008 we opened our eyes and just stared at each other. Today was THE day! We had the very first appointment with Rick's neurologist this morning. The neurologist had made the appointment on his day off so Rick could get in a soon as possible. We couldn't believe that he would do that especially now a days the way our health care system is working. Rick and I looked at each other with disbelief of it all as we held each other and then prayed together.

We have such an openess and honesty about how we are feeling. We both knew we needed God's strength to get us through this next few hours and what may lay ahead. My husband brought us our usual morning cup of coffee in bed. We sat in bed drinking our cup of coffee and talking about all the "mightbes,maybes and maybenots" then we would go back to the usual "what is the weather like today? or do you have the clothes you are wanting to wear picked out?" All I kept thinking was I sure hope today we will finally know what is wrong with Rick. It was like a dark cloud over both of us always wondering and not knowing for sure.

Our wonderful GP for years retired earlier this year. We finally found a new one that we both had confidence in and so Rick went to see him in December 2007. He told Rick then that he thought he may have a progressive neurological muscle disease. The GP then said he would make an appointment with a Neurologist. To make a long story short----Rick decided to talk to the ALS society. They immediately informed him to ask his GP to specifically ask for a certain Neuro who specializes in ALS cases.

We both were on the internet checking out the symptoms that his body kept manifesting and we both kept coming to the dreaded and most feared ALS. We both just didn't want to go there or give it any space in our thinking at all....especially now this morning.

As I stood by the neurologist watching the little tv screen as he probed Rick's muscles on his legs, arms and back I kept thinking---this cannot be real! this cannot be happening to us! The machine was making all kinds of loud noises and I knew it was not good. His muscles in his legs and arms have been fasciculating (fluttering, moving) more and more.

We both knew something was not right for the past six months for sure. He was always so tired. His muscles on his upper leg were twitching or fluttering. He attributed it all to getting older. I began to think that I had worn the poor guy out by all my projects! Our standard joke was that I kept telling him I married a younger man than me so he could keep up to me!

At the end of the EMG (electromyography , a special recording technique that detects electrical activity in muscles) and NCT (nerve conduction test), reviewing the GP's report, MRI's, blood tests and questions and the Babinski test. **See the video**(Which is a test where you run an pointed object on the soul of your feet and yes, Rick's toes moved upward!) Not a good thing!!! Rick asked the Neuro for a prognosis knowing that the Neuro only knows so much himself but we needed to know! The neuro was very kind to us in how he dealt with us. Rick has ALS to our horror!!! It is a fatal disease. We were and are still in shock and disbelief as you can well imagine! It appears to be quite agressive so he was not too hopeful in giving us much time. Rick and I both know that God is bigger than all this!!!!

We walked out of the Neuro's office holding hands and in shock! We were surrounded by people the whole way down the elevator and not until we reached our car in the parking lot were we finally alone. We both hopped into the car as fast as we could and shut the door and looked at each other and started to cry. We just couldn't believe the words we just heard. My head was reeling with what are we going to do?....oh no! we will need to talk to our kids and families, we will have to hurry and sell the house as it will no longer be suitable for Rick, how will we take care of the business and the thoughts just kept coming and coming and rolling around in my head.

Finally, I took a deep breath and stopped myself and looked at my husband who was just handed down a death sentence. All I could see was the fear, terror and disbelief in his eyes! He is the most loving, kind, gentle and wonderful man I could have ever married! How could this be happening to him? to us? to our families? I put my arms around him and we both cried and cried. I finally looked up at him and said "I am sure glad we like each other". We both burst out laughing.

We decided that we would go straight to his parents house to talk to them. We were in an emotional stupor that is for sure. I drove the car telling Rick he was in no condition to drive. Can you imagine that? as if I was in a spot of emotional stability or something at that moment!

All I can remember about the drive is that at one point Rick asked for me to pull over onto the shoulder of the road so he could just catch a breath. I did just that and we both stopped and gave a big sigh and both started to really cry and hold each other once again. I can't even imagine the thoughts going through his mind at that point. I know I was in complete and utter shock. The word that describes it best is the dreaded overused word ---sureal!

Rick's folks are in their late seventies and we were so worried about just telling them over the phone that is why we decided to go and see them in person. They knew of the appointment with the Neuro this morning. As you can imagine they were so very heart broken for their oldest son when we told them. Rick and I always thought we would be there to care for our parents in their older age. So now we began to think about that and started crying again.

It is already March 13th now so I will try and catch up on what has all happened since that dreadful day of diagnosis as I begin this journey of blogging.