Rick and Joan here..."Our van lift trial run"

Here we are! Val took the pic. We survived! Our first van/lift experience. We did a trial run with the motorized wheel chair. The chair slipped and slid all over the driveway just getting to the lift. Winter snow and ice makes everything very difficult with wheel chairs and scooters. However, we did manage to get Rick up and down. Then we proceeded to give it a try with the scooter. We got him in and out, once again, with much trepidation, on both our parts!!! Rick had to trust me with the controls! Remember, I am the one who is NOT mechanical in any way!

There was NO way I was going to attempt this without Jake there supervising my first attempt at this. Jake very graciously answered my questions and walked both Rick and I through the process. I was on the verge of tears the whole way through. I am so glad Jake exercised such patience with me otherwise I could not have even attempted to do this. He is so mechanical and has absolutely no idea how people who are not live and exist in this world on a day today basis! :)

Rick here...Joan is too hard on herself! She did great...quite a stretch but she did great! I was very proud of her. I know how nervous...and I mean nervous she is about it all! She does have a way of rising to the occasion though! It was quite an adventure and I am sure we have many more ahead. A quick thank you to Jake for the lessons on operating the lift! Looks simple but to us is not.

Thanks again, Jake & Val, Grant & Colleen, and Gladwin for all your parts in getting the van up and running! We are forever grateful!!!

Rick and Joan here...Christmas Eve Carrollers!

We were snuggled by the fire tonight...a very cold Manitoba Christmas eve...when we heard the beautiful sound of Christmas carols being sung outside. We went to the door and were met by a group of young people from one of the local churches.

They were going door to door on a very very cold night singing their hearts out. We invited them in to warm up for a few minutes and were treated to several more wonderful carols right here in our own living room. We were very touched and it made a very difficult day so much better! What a memory thanks to all of them!

Merry Christmas and a Happy Healthy New Year to all!

Rick here...On Monday, yesterday, it was "My worst day yet!"

In the midst of all the joy we are experiencing with family and friends, I had my worst day yesterday since diagnosis. I hate to inject it in the midst of all the good things that have been happening but it is reality and it is what we are experiencing.

I woke up in the morning overcome with the most intense gut wrenching sadness that I have ever experienced! Joan heard me crying and held me as I sobbed from the depths of my being. I could not get past it. It went on for most of the day. Joan and I prayed for wisdom in what was going on. I have never felt so out of control emotionally!

Joan then spoke wisdom to me. What came to her as we prayed was the word "mourning". As soon as she said it, I felt released. I still cried for some time but I felt like I understood then what was going on. We prayed and talked through most of the day sharing God's word and what he says about mourning. In retrospect, this was probably way over due as I have tended to try and cope by denial, staying positive, and being strong! That only works for awhile. Joan told me "you don't always have to be strong" "it is okay to be sad, to cry and to just be yourself"! It released me. The thing is, I know all of this stuff, but it is sure a lot different when it is your body that is shutting down.

This is all part of the process but it is no fun going through it. This disease robs you by inches. It never stops and you always have the assurance that it will be worse tomorrow than it is today! I tend to hold it at arms length and then finally succumb to the reality of where I am at. I don't think this will ever change and I don't think I want it to. I just wanted to share this part of the journey. As my sweetheart says..."keep it real Rick!". lol

Now ask me how I am today? Today is a NEW day!

Joan here...."the beast"

Meet the "beast". Yep...here it is! Ready to go! (except I need lessons to operate the lift...) Remember, I am not the mechanical one!!! Also remember, I am the one who took how many trial runs just to wheel Rick in the wheel chair without him doing a face plant! So you can only imagine the challenge I am faced with in driving and operating this van! lol

We were blessed by being able to get this van. It belonged to a family whose mom suffered for years with ms. It has a few years on it but it is mechanically sound and has a great wheel chair lift in it! It means Rick will be able to still shop with me!!!! lol... and here he thought he had an out!!!

Much thanks to Jake, Grant & Gladwin for all the hard work you guys did to make it possible for us to get it on the road! This will increase Rick and my quality of life more than you can imagine. It is getting very difficult to move Rick around anywhere.

You can find us located at the end of the parking lot at any given shopping mall because there is no way...and I mean no way...I will be able to park or fit it into any normal size parking space!

Rick and Joan here...2 more days till Christmas!

Wow! Christmas is just a couple of days away. We are enjoying family and friends! We have had so much snow out here. No problems having a white Christmas!

We haven't blogged for awhile as we have been busy with family and friends. Our friend Mike so graciously delivered a Christmas tree which now stands all lit up on our back deck. Joan's hairdresser is now Rick's hairdresser. Because of the stair issue she agreed to come over here and cut his hair. Talk about going the extra mile!

We had our family Christmas dinner at the Whitemouth Hotel Restaurant. A big big thank you to Mike, Arlene & Kirsten for their awesome service and hospitality! We even enjoyed a surprise visit from Santa (Thanks Grayson)! We all came back here afterwards for a great time together. Wow! 9 grand kids and 5 adult children and partners. It made for a pretty fantastic time! We forgot to have a family pic taken!!!! agghhhhhhhhhhhh.............

We had a wonderful gathering at Joan's folks place. It was mixed with sadness and joy! I find it so hard at these gatherings as next time (if there is one) I will either not be able to attend or will be in an even more tragic state than I am. As it was...Joan had to park as close to the door as possible. Nick and Conrad were waiting for us to arrive to bring me in. Then Nick and David got to take me out at the end! All of Joan's family have been so gracious and helpful to us both in so many ways! I am truly blessed!

A big thank you to Jenn & Clif for completing the heating system in the suite. Now we can sleep with the windows open again ! lol Thanks Colleen and Ella & Remi for the fantastic lunch and visit. Thanks Jake & Val for all the snow clearing in keeping a pathway for me. Not to mention the never ending ongoing other stuff you take care of for us!

Today, my sister and husband from Ontario and my folks and Joan and I enjoyed a wonderful lunch at "Jennifer's" in Seven Sisters together. The food and service there is fantastic. Can you believe it...goat curry soup??? mmmmmm...delicious!!! Last time I had alligator soup and the time before I had tripe (Joan calls it cow stomach soup). Our kinda place!!! Not to mention their delicious chicken and ribs!!!

We all came back here afterwards and had a wonderful but very emotional time together.

Rick here...My new toy!

Well, here I am in recline mode in my new toy! The new power chair arrived today! A big thank you to Louise for expediting this. It is smaller than I supposed (which is a good thing)! It is quite maneuverable and quiet as can be. I haven't had a chance to try it on a straight away but according to manual it will go 8 mph. LOL! Yipee!!!

Anyhow, Joan and my first reaction was to have a cry as we do at every milestone we pass. But inside of 10 minutes I realized what a difference it will make in saving energy in my life. It is so much easier than the manual chair. I did not realize till I had this how much energy I expended just wheeling around our place.

It is very comfortable as well and we are so thankful to have it!

Bad news!!!

Joan and I received some really terrible news this evening. My Uncle Keith's wife - Aunt Christine - has been having some medical problems the last while. They have just received news that she has been diagnosed with ALS!
They have been such a source of help and encouragement for us as we have battled it, who would have thought that they would be next? Our thoughts and prayers are with them.
They live in Calgary, which has a great ALS Society also, so that is a blessing.
But what terrible news:(

Rick here - Instant Solution!!

Wow!! Are we impressed!!!
I dropped a note off to the principal at the school this morning detailing our concerns about last night and had a phone call back within the hour assuring us that this situation would NEVER happen again! Action had been taken and procedures adjusted!
We are so touched by the care and concern he expressed!!
Prior to Joan and I starting on this journey we had absolutely NO experience dealing with the disabled, mobility challenged,etc......and had no concept of the challenges that so many folks face in everyday life! I was absolutely oblivious to these things, as are most of us.

I had never given an inch of thought to the fact that a little 4 inch step could make a whole building inaccessible to someone....and how it makes you feel when you are the one who can't participate in a simple activity because of it!

Life lessons! It can happen to any of us....this time last year I could run up 2 steps at a time and now that 4 inch step keeps me back!
I cannot belive that I was so unaware and oblivious to problems that so many among us face!

Rick and Joan here...A tough night!!!

Yep!...you heard it right...a tough night! We were at our gdaugther's band concert and wow.... here it goes...
Got there and parked near the door...wow..we thought we had it made...wrong...
The main door (the wheel chair accessible one) was locked with a sign saying go to other door. We saw a student inside who must of recognized us...so she opened the door for us thankfully. That got us in....getting out was another matter.

After the concert we headed down the hall to the door we had come in and only to find there was an iron gate across the hallway locked with a chain....oops...wow!! so we headed back to another door to leave and got outside to find a set of stairs...not good with ALS!!!!!!!!!!! so I tried backing up the wheelchair through the door and wound up falling flat on my back....too embarrassing...and thankfully not breaking anything...after a couple of people picking me up off the floor. We headed back to the auditorium to try and find someone to let us out of the locked gate. The person came with us and tried numerous times to undo the lock but with no luck...we sat there in amazement and frustration...thank God there wasn't a fire or any other emergency....just imagine for a moment trying to leave an event and finding the only door that you could use chained shut...not a good feeling.

Anyways, he finally got the janitors attention and she unlocked the door. We could get through at that point. What we don't understand is firstly...this is a public institution and there is no FULL access to wheel chair accessibility.

No one thinks of these things we realize...but here we are...we have to!!!

Things to thing about....
We can not get into our local grocery store.
We can not get into our favorite hair salon.
We can not get into our local sundries store.
We can not get into our local insurance and Sears store.
We can not get into our local school for a band concert.

Life gets complicated fast when you have limited mobility. We had no idea ourselves until we have had to deal with it.

So....if you are out and about please check these things.....help someone else out!!!! Speak out to your local authorities about this....we are doing so as we can!!!! It is ALL about raising awareness....we realize that no one individual is trying not to help but it is easy to miss these things....so...............................for today...go for it!!!!!!!!!!!!!!

I was really pissed about all of this tonight...but I'm somewhat over it now....but will NEVER forget what happened to us tonight and will do what I can to help someone in the future not to have to go through this............I found my voice!!!!!!!!!!!!

Joan here...Jack fell down but didn't break his crown!

Rick has been falling more frequently lately. He fell outside while walking out to the car on Friday. I was horrified! He wouldn't let me help him up, he kept saying he was okay and he could get up on his own. He slowly maneuvered himself up the side of the door of the car and into the seat as I stood watching, dying by the moment!

The other nite he was getting into bed and plunked his butt on the edge of the bed. Unfortunately, he sat too close to the edge of the bed and slid right onto the floor. Horrified again I ran to help him.

Hmmmm...I found out with him laying on the bedroom floor that I was not too much help. I tried to lift him back on to the bed...well that didn't work! We got him on his knees one at a time and then I lifted each leg up for him. I asked him to tell me what to do. Then he told me to lift him from behind under his arms...well sounds pretty easy right???...hmm...I did just as he instructed but low and behold when I would lift him, it was like I was too short in arm length to get him up to the bed. He would slide down again and again and we would have to start the process all over again.

After the initial shock of it all.....we started laughing and laughing! To the point I could hardly exert any strength in lifting him. It took quite a few tries to finally get him back up on his feet...but we did it! We laid in bed afterwards and reflected at what had just taken place.
In all the sadness of the moment I was just so glad that we could experience the humorous side of it all!