Welcome

This blog is about a new walk with my husband Rick & I since he was diagnosed with ALS (Amyotrophic Lateral Sclerosis) or Lou Gehrig's Disease or MND (Motor Neuron Disease) on February 1, 2008.

This blog was started as a way to keep our family and friends and anyone else interested in our battle with ALS updated.
So as you read this blog please keep us in your hearts and prayers.

The blog starts from the most current to the oldest entry. Rick has started to blog now also as of April 1,2008 so this site has become officially "our blog".

My dearest husband Rick passed away on August 13, 2010,
2 1/2 yrs after diagnosis. Now I have to learn how to walk in the courage, strength and bravery that he did in fighting this disease. He promised me he would be waiting for me in eternity on a park bench. Together Forever!

Wednesday, June 25, 2008

Joan here....We made some awesome memories!

Wow! We had a blast with little Katie. We laughed and laughed and laughed. She has her own little way about her. We saw the moutains, the animals and of course the airplane ride! As soon as we landed in Calgary without a moment's hesitation out it came loud for everyone one to hear..."now that was a smooth landing!". We all laughed and the stewardess took her to see the pilot and made sure that Kate told him what she thought of his landing!

There are too many incidents with her that were hilarious to even begin to write about. Amidst the humor and excitement we also faced once again some very emotional moments with Rick. We managed to arrange a tour on the icefields. We were met with so much favour. Rick, Kate and I basically had a private attendent at our side through the whole tour.

I watched my husband being lifted on a lift onto a small van who then took us to the larger truck with the rest of the tourists. From there he was lifted back up into that truck that took us up to the glacier. As I watched him going up high into this huge truck on the lift I just started to cry. We both still cannot believe this all!

So between Rick and Katie I came back pretty exhausted actually. More emotional than anything though. Everytime we went to see something we left not knowing if we would ever be back there together again! I cannot even imagine how Rick felt as he gazed at the moutains and the beautiful streams.

Wednesday, June 18, 2008

Joan here...Off we go again!

We started a little tradition 5 years ago. We decided to take each of our grandchildren for a trip with gr and gr just as they turned six years old. We ask them where they would love to go for a little trip with gr and gr. This year is little Kate's turn. For those of you who have never met her...She is so full of spunk...talks to everyone she meets...and snuggles to grandpa every chance she gets...oh yeah...and doesn't stop talking except to take a breath of air! When she has something new and you never know what....she starts her sentence with "Did you know???

Kate informed us that for her trip she wanted to go on an airplane ride, see mountains and animals! So, as best as we could try and accommodate her wishes we are heading to Calgary/Banff. This will be an incredibly interesting trip with her along.

Now, that I have the wheelchair thing figured out it should be relatively simpler to get around. She already knows that she is responsible for toting her own little bright pink suitcase complete with wheels and handles!

Her mom and dad avoided telling her the date of departure until this last few days to keep the excitement level under containment! She knew there was a trip coming but had no idea what month or what day!!! Well, you should have seen that little girl's face when her dad and mom told her! Outside of bouncing off the walls she pretty much did everything!!!

Rick and I were concerned about using the grand kids names on the blog. So one day when they were here and reading the blog I told them that I had not used their names because I didn't want to embarrass them. Both of the girls piped up and said "Grandma it's okay to use our names we really don't mind at all!!!" They were so proud to read their names in our blog!!!

So off we go!!!!

Monday, June 16, 2008

Rick and Joan here...Our deepest condolences to Shirley & sons.

We are so very sad to hear about the unexpected sudden passing of Shirley's husband Stephen. We met Shirley at our ALS meeting a few weeks ago. Our thoughts and prayers are with Shirley and her children and grandchildren at this time.

Saturday, June 14, 2008

Joan here...Wow!!! Ladies...He is a keeper!!!

It is my birthday today....What a dream man!!! And I am so proud that I am married to him. I woke up to a wonderful cup of coffee...and....10 love letters...Rick presented me with one at a time...a ladies dream...his letters were filled with everything a gal wants to hear! I received a beautiful ring...3 diamonds...one for the past, present, and the future...went out for supper...hmmm....what can I say???? We cried a lot today!!!!

Friday, June 13, 2008

Joan here...

Rick has mentioned once again that he is not doing well. Every time he tells me that I brace myself for what is coming up next. He is so tired all the time. We have been trying to get a bit of low key time in this week. I walked into the kitchen tonight only to find him leaning on the kitchen counter with one hand holding himself up. He was trying to make a snack with the other hand. I asked him what was wrong.

He said that he can feel his back muscles are getting weaker and so he can't bend over and hold himself up with out holding on to something for support. He has to either be standing straight or laying down. So when he shaves he has to stand straight and not lean over the sink. He said his stomach muscles are going and all of a sudden he has this pot belly hanging there. I keep telling him now he knows how us ladies feel. lol

I have to keep an eye on him as he is very very cleaver at trying to do things in such a way that no one notices how he has to struggle to do things. He always tries to walk behind everyone so no one sees him walking. He doesn't want to eat soup now in front of anyone.

Rick and I would have loved to be able to help his folks with their upcoming move. It would be impossible physically for him. It is very painful for him to come to terms with that.

No matter what we are so very grateful for each new day that we have together. God is still good!!!

Saturday, June 7, 2008

Joan here...Whew! Good to be home!

We have met some very wonderful and compassionate people on our trip. Despite the cloudy cool weather we had a really great time.

We drove down from Kelowna to Oliver with my sister and brother-in-law and toured some great wineries. We had a lot of laughs! They even got to share the "raspberry beer" that Rick loves so much! And to our amazement they had a live jazz band playing that night which made it even more fun!!! Rick said it broke his heart that we could not get up and dance the night away like we used to!

I'm not sure how we would have made it back to the airport on our own though without the help of our thoughtful and kind sister and brother-in-law. They took it upon themselves to help us out of the hotel and to the airport with all our "stuff". You can be very very sure that this girl will be learning how to travel very light in the future! There is no way I could have managed without their help!

We lucked out and had a lay over in Edmonton. This is where my nephew and his new bride met us for lunch at the airport. We were so thrilled to meet her!!! What a wonderful couple they are. They are starting out their new life together filled with so many dreams. Rick and I are so very happy for them!!!

Rick and I met some very wonderful people on the plane and in Kelowna. So, hi Jay, Judy and Helen. It was a delight to meet you! Everyone has their own story in life!

When we finally made it back up to our apartment tonight with all the "stuff", I realized we were laughing a lot again! I felt like we were back...not just back home but back to a happier place in our beings. I think we needed a break much more than we really knew!!!

If you get a chance read the book "I am Hutterite" by Mary-ann Kirkby. It is a true story about a girl who left the colony. It is a very well written book. The writer herself grew up in a colony just outside Portage, MB. We picked up our copy at the Virgin bookstore at the Wpg. Airport. Chapter also sells it.

Another good read "Stolen Innocence": My Story of Growing Up in a Polygamous Sect, Becoming a Teenage Bride, and Breaking Free of Warren Jeffs. Chapter also sells it.

Thursday, June 5, 2008

Rick and Joan....Kelowna...did you say wine???

We are having a great time!!! Just a lot of adjustments to make...the first day we travelled was so very very hard!!! We did not know how much Rick can't do until now. Thanks so much Kim for arranging for the transfer chair...I could not have managed with out it!!!

We have had to avoid certain stops as they are not wheel chair friendly. I find that a lot of times I have to do things alone. I go to the gym alone each morning. Rick and I used to do this together.

The parking lot has too many slopes and so it was getting difficult to push Rick from the 2nd and 3 floor levels. No elevators. We have discovered the wonderful service of valet parking here.

We did go downtown a few times...and Rick was delighted to indulge in his "raspberry beer" awesome!! It is at Doc's. We had our memory lunch at Mission Hill yesterday.

It has been cloudy but not rainy so we have just keep going. We were at Penticton yesterday and had a great time just driving around.

We are so shocked at how things are slowing down for Rick and at how hard it is starting to get to do things...so sad!!! :( He is very frustrated and sad at times!!!

My sister and her husband are joining us this evening here...they have driven in from Vancouver.

We are just now awaiting for our vehicle to be delivered to the door.

Monday, June 2, 2008

Joan here....Off we go Ho Ho Ho!

Rick and I woke up this morning to the sun streaming in through our bedroom window. What a beautiful glorious day to head out on our trip! As we sat in bed having our morning coffee and talking (our usual). I noticed that Rick was opening and closing one of his hands and staring at it a lot. I asked him if his hands were giving him trouble. He said that he noticed that his left hand was "different" lately. We have noticed that both his hands do shake now a lot but this was something still different.

Tears began to stream down my face at that point. I can't imagine how Rick felt. Just plain sadness thinking where this will be leading soon. There is a saying..."you can run but you can't hide". Rick told me that he is so very happy and thankful that I am here by his side. We are just so happy we have each other. I relish each word he speaks and try to lock it in my memory so as to never forget! We both know we have one "h" of a ride ahead of us!

Rick mentioned that the thought of our plane crashing used to be a horrifying thought but on this morning it didn't seem such a bad thought anymore---except for the other poor folks on the plane that is! So with stiff upper lips we proceeded to discuss our trip knowing only full well that we need to enjoy every moment while we have it!

Fear of Packing...hmm...if anyone has this phobia you will know exactly the anguish that I am going through to get our "stuff" packed. I have packed so far 2 large , 1 medium, and one carry on suitcase. All of which are closed by standing on the suitcases to zip them up! We are only gone for 6 days with 2 of them travelling. Yikes!!! Rick just laughs.

Rick doesn't say a word about how I can't decide what to pack...hot clothes, cool clothes, and shoes...oh yeah....lots of shoes!!! His solution to my dilemma is very simple and easy to fix. He says "Joan, don't worry about it, it's okay, just get another suitcase". The joke is on me though these days. He used to be the one to lug these things all around. Guess who is doing that now??? I thought about that as I packed and ended up actually putting some clothes back into the closet. That put some real perspective into the packing.

It will be our first trip with Rick and I and "Ineeda". Tia informed us that the "Ineeda" actually stood for "I need a cure for ALS", not "I need a million dollars" as I previously had written. For those of you who don't know, the grandgirls named Rick's wheelchair "Ineeda" and his cane "Max".

Some more reality hit this morning as I began to lug the suitcases to the door, hmm, 3 heavy suitcase, heavy carry on, a wheelchair and cane. Our travelling has definitely taken on a different look and feel. It is hard to describe what goes on internally during one of these moments. Looking at the pile of luggage standing at the door right now, I sure hope the cab that takes us to the airport comes with a very very big trunk!