We spent the day with two of our grand daughters shopping in one of the busiest time of the year. What a hoot!!! We experienced some of the kindest care for Rick when everyone was up to their necks in busy!!!
We went to Canadian Tire and there the staff person informed us that there was not a scooter available at the moment so after a bit we decided with girls in tow to just leave. It is impossible for Rick to get around with out one these days. It is so hard to transport our scooter that it is more pain than gain. Anyways, to make a long story shorter.... We were standing on the outside of the store when the staff person came running out to inform us that one had come available! We were so amazed that she took the time to run out and get us in the middle of her Christmas Craziness. She is a gem!
Then we took the girls to Boston Pizza for lunch. I let him out at the front entrance and took off to go and park the vehicle. As I was driving away I could see a man approach him. Rick later told me he was having a hard time making his way up the 4" slope to the front entrance and the rough looking man saw him and asked if he needed a hand. He expertly grabbed Rick's arm and helped him up. Rick told me as he thanked him the man simply smiled and said...no troubles Bro!!! Rick was so touched. It was so evident by the way the man helped that he had had experience with the disabled. Never judge by a person's appearance. The simplest kindness can make all the difference in the world at the right moment. It sure did for Rick today!!! Tia witnessing the act of kindness later told us that it made her cry when she saw how good this man was to her grandpa!
Rick took turns sitting at the restaurant with one of the granddaughters while I would take the other to do their Christmas shopping for their friends, each other and mom and dad. Well.....Rick and Tia had a "making a memory experience". There was a table of challenged individuals sitting across from their table with their care workers. As they got up to leave one older gentleman who was shuffling on his way out accidentally caught his pant leg under his heel. End result- his pant dropped to his ankles! His care worker gasped in horror and leaped ahead to solve the problem. Tia, covering her eyes...immediately announced to grandpa...thank goodness he was wearing boxers!!!! Grandpa said "that is why God made belts and suspenders". Lol! Tia informed grandpa that he should not worry that she would make sure in the future that he would always be wearing a belt or suspenders! lol
They were both touched by how thoughtfully and quickly the caregivers in charge helped deal with such an embarrassing situation for the older gentleman. Rick had a hard time though as in his current situation of helplessness such things are not unimaginable for him.
Friday, November 28, 2008
Thursday, November 27, 2008
Joan here...Lots of white fully stuff outside.
To give you an update on Rick...he now weighs approx. 162 lbs. his legs are very thin and not much muscle mass. He was officially measured for his motorized wheelchair yesterday. The occupational therapist that came out to do it was very helpful in discussing all kinds of aids available for Rick now and down the road. We have been so very pleased with the health care people who have come here to meet with us and help us with Rick. It will depend on how fast the papers get through the system that will determine when he will actually get the motorized chair. They are putting in right away for a tilt one due to the nature of the disease. The sooner he gets one the better. It will help to conserve his energy if he doesn't have to manually maneuver the wheelchair.
Every time, he meets with any of the health people he has such a bad night emotionally. Nothing to do with them personally but it is a reminder to him where things are and where they are heading. So it is stressful in its own way for us.
Nothing like talking about electric hospital bed being put in your suite down the road...then really thinking what that means....Rick being bedridden and me not being able to share a bed with him!!! Rick says he is going to ask if the hospital bed can come in a double size! I thought that was so sweet!
This morning Rick and I went to the car and it was completely snow covered. As I was brushing off all the snow the neighbours son came over and offered to have the drive way cleared. We were so amazed and thankful. He is the same man who called Rick earlier this week to see if he just wanted to go for a ride in the area. He is just like the guys Rick grew up with in Sperling and Rick feels at home with him.
Grant and Colleen and kids picked up "the beast" to get the final stages of it road worthy! So once we get it safetied you will see us coming for miles!!!
Last week I had a real bout of loneliness...I just wanted to go home! I thought about that for awhile what that really meant. I realized "home" to me at that moment in time was back to where Rick and I felt like we had normal lives. Where he wasn't sick. Where we could just get up and go and do and not even think about it. Back to where we had all kinds of plans together. So once Rick and I talked it all over, and of course, had a big cry and stopped feeling sorry for myself ...then I was able to pull it together again.
My heart breaks every day for my husband as I see him try and do things, the effort it takes for him to even get out of a chair, the wasting away of his body, the sadness and terror of what lies ahead. And how he doesn't want any of this either. And as strong as I want to be and am at times...I am still me and have my own feelings to deal and cope with. So every once and awhile I have my own little pity trips. Hopefully, they will always remain short trips! so I can focus on my husband!
The physiotherapist had to do a quick test on Rick with his scooter to see how he can drive it as part of the requirements for applying for a motorized wheelchair. Well.........Rick being the country boy that he is with all that driving of machinery growing up you can well imagine that he did loop-de-loos with his eyes closed! A part of me just ached seeing how it has come to this for him and how awful this must have been for him. We just can't believe this is happening!
Every time, he meets with any of the health people he has such a bad night emotionally. Nothing to do with them personally but it is a reminder to him where things are and where they are heading. So it is stressful in its own way for us.
Nothing like talking about electric hospital bed being put in your suite down the road...then really thinking what that means....Rick being bedridden and me not being able to share a bed with him!!! Rick says he is going to ask if the hospital bed can come in a double size! I thought that was so sweet!
This morning Rick and I went to the car and it was completely snow covered. As I was brushing off all the snow the neighbours son came over and offered to have the drive way cleared. We were so amazed and thankful. He is the same man who called Rick earlier this week to see if he just wanted to go for a ride in the area. He is just like the guys Rick grew up with in Sperling and Rick feels at home with him.
Grant and Colleen and kids picked up "the beast" to get the final stages of it road worthy! So once we get it safetied you will see us coming for miles!!!
Last week I had a real bout of loneliness...I just wanted to go home! I thought about that for awhile what that really meant. I realized "home" to me at that moment in time was back to where Rick and I felt like we had normal lives. Where he wasn't sick. Where we could just get up and go and do and not even think about it. Back to where we had all kinds of plans together. So once Rick and I talked it all over, and of course, had a big cry and stopped feeling sorry for myself ...then I was able to pull it together again.
My heart breaks every day for my husband as I see him try and do things, the effort it takes for him to even get out of a chair, the wasting away of his body, the sadness and terror of what lies ahead. And how he doesn't want any of this either. And as strong as I want to be and am at times...I am still me and have my own feelings to deal and cope with. So every once and awhile I have my own little pity trips. Hopefully, they will always remain short trips! so I can focus on my husband!
The physiotherapist had to do a quick test on Rick with his scooter to see how he can drive it as part of the requirements for applying for a motorized wheelchair. Well.........Rick being the country boy that he is with all that driving of machinery growing up you can well imagine that he did loop-de-loos with his eyes closed! A part of me just ached seeing how it has come to this for him and how awful this must have been for him. We just can't believe this is happening!
Wednesday, November 19, 2008
Rick here...ALS ad on Youtube
The ALS Society of Canada has launched a new public service advertising campaign created by Lowe Roche, Toronto to raise awareness about Amyotrophic Lateral Sclerosis (ALS) and the ALS Society's efforts to fund research towards a cure for the disease.
Created by Lowe Roche on a pro bono basis, the 60-second television public service announcement, “Head and Shoulders” is composed of a montage of clips, each one focusing on a man with ALS in emotionally charged moments as his disease advances to different parts of his body. Set to the children’s song, “Head and Shoulders, Knees and Toes”, as the spot progresses, and his conditions worsen, the cheerful singing becomes a sad whisper.“We chose to create a spot that was musically and emotionally driven to raise awareness for ALS,” said Christina Yu, Vice President, Creative Director, Lowe Roche. “This song is one which everybody can relate to and we wanted to use it unconventionally to illustrate how this disease eventually affects every body part ALS, also known as Lou Gehrig’s disease, is a rapidly progressive and fatal neuromuscular disease that causes the degeneration of nerve cells in the brain and spinal cord. As the nerve cells die, people with ALS lose control of their muscles, which makes breathing, eating and even smiling almost impossible. Eighty per cent of those diagnosed will die within two to five years. There is no known cure or effective treatment of ALS.
Here is the link to the ad on youtube. http://www.youtube.com/watch?v=g0Q4kIx95aU
Created by Lowe Roche on a pro bono basis, the 60-second television public service announcement, “Head and Shoulders” is composed of a montage of clips, each one focusing on a man with ALS in emotionally charged moments as his disease advances to different parts of his body. Set to the children’s song, “Head and Shoulders, Knees and Toes”, as the spot progresses, and his conditions worsen, the cheerful singing becomes a sad whisper.“We chose to create a spot that was musically and emotionally driven to raise awareness for ALS,” said Christina Yu, Vice President, Creative Director, Lowe Roche. “This song is one which everybody can relate to and we wanted to use it unconventionally to illustrate how this disease eventually affects every body part ALS, also known as Lou Gehrig’s disease, is a rapidly progressive and fatal neuromuscular disease that causes the degeneration of nerve cells in the brain and spinal cord. As the nerve cells die, people with ALS lose control of their muscles, which makes breathing, eating and even smiling almost impossible. Eighty per cent of those diagnosed will die within two to five years. There is no known cure or effective treatment of ALS.
Here is the link to the ad on youtube. http://www.youtube.com/watch?v=g0Q4kIx95aU
Tuesday, November 11, 2008
Rick here.- Remembrance Day in Whitemouth
Wow...were Joan and I impressed! Took in the Remembrance Day Service in Whitemouth today....and do they do it up right! The Museum Society here goes above and beyond!
The local Mounties in full red dress, Service members from 17th Wing in Wpg., Air Cadets from Beausejour , Vets, 4-H kids in abundance ( did I mention the largest 4-H club in Western Canada?) placing at least 35 wreaths, the local choir, the Last Post by trumpet, coffee and donuts afterwards from the Lions Club, etc!!!!
Made me feel like I was back in Sperling - except for the Mounties :)
The community spirit here is extra-ordinary....made us so proud to be Canadian!
Also a powerful reminder personally that whatever I may be going through with this disease pales by comparison with the sacrifice and suffering that so many Canadians have gone through for our sake to buy our freedom over the years!
Way to go Whitemouth!!!!
The local Mounties in full red dress, Service members from 17th Wing in Wpg., Air Cadets from Beausejour , Vets, 4-H kids in abundance ( did I mention the largest 4-H club in Western Canada?) placing at least 35 wreaths, the local choir, the Last Post by trumpet, coffee and donuts afterwards from the Lions Club, etc!!!!
Made me feel like I was back in Sperling - except for the Mounties :)
The community spirit here is extra-ordinary....made us so proud to be Canadian!
Also a powerful reminder personally that whatever I may be going through with this disease pales by comparison with the sacrifice and suffering that so many Canadians have gone through for our sake to buy our freedom over the years!
Way to go Whitemouth!!!!
Friday, November 7, 2008
Rick here...a song with a lot of meaning to me right now!
One of my favorite songs...has a lot of meaning for me right now...Feel free to hum along :) my compliments to Kenny Rogers.
"On a warm summer's evenin' on a train bound for nowhere,I met up with the gambler; we were both too tired to sleep.
So we took turns a starin' out the window at the darkness'Til boredom overtook us, and he began to speak.
He said, "Son, I've made my life out of readin' people's faces,And knowin' what their cards were by the way they held their eyes.so if you don't mind my sayin', I can see you're out of aces.For a taste of your whiskey I'll give you some advice.
"So I handed him my bottle and he drank down my last swallow.Then he bummed a cigarette and asked me for a light.
And the night got deathly quiet, and his face lost all expression.Said, "If you're gonna play the game, boy, ya gotta learn to play it right.
You got to know when to hold 'em, know when to fold 'em,Know when to walk away and know when to run.
You never count your money when you're sittin' at the table.There'll be time enough for countin' when the dealin's done.
Ev'ry gambler knows that the secret to survivin'Is knowin' what to throw away and knowing what to keep.'Cause ev'ry hand's a winner and ev'ry hand's a loser,And the best that you can hope for is to die in your sleep.
"When he'd finished speakin', he turned back towards the window,Crushed out his cigarette and faded off to sleep.And somewhere in the darkness the gambler, he broke even. But in his final words I found an ace that I could keep.
You got to know when to hold 'em, know when to fold 'em, Know when to walk away and know when to run.You never count your money when you're sittin' at the table. There'll be time enough for countin' when the dealin's done."
It is kinda funny...when I saw my doc a couple of days ago...he said "We all get different cards, you just have to make the best of them and then at the end know when to fold them!" No wonder I like this guy.
"On a warm summer's evenin' on a train bound for nowhere,I met up with the gambler; we were both too tired to sleep.
So we took turns a starin' out the window at the darkness'Til boredom overtook us, and he began to speak.
He said, "Son, I've made my life out of readin' people's faces,And knowin' what their cards were by the way they held their eyes.so if you don't mind my sayin', I can see you're out of aces.For a taste of your whiskey I'll give you some advice.
"So I handed him my bottle and he drank down my last swallow.Then he bummed a cigarette and asked me for a light.
And the night got deathly quiet, and his face lost all expression.Said, "If you're gonna play the game, boy, ya gotta learn to play it right.
You got to know when to hold 'em, know when to fold 'em,Know when to walk away and know when to run.
You never count your money when you're sittin' at the table.There'll be time enough for countin' when the dealin's done.
Ev'ry gambler knows that the secret to survivin'Is knowin' what to throw away and knowing what to keep.'Cause ev'ry hand's a winner and ev'ry hand's a loser,And the best that you can hope for is to die in your sleep.
"When he'd finished speakin', he turned back towards the window,Crushed out his cigarette and faded off to sleep.And somewhere in the darkness the gambler, he broke even. But in his final words I found an ace that I could keep.
You got to know when to hold 'em, know when to fold 'em, Know when to walk away and know when to run.You never count your money when you're sittin' at the table. There'll be time enough for countin' when the dealin's done."
It is kinda funny...when I saw my doc a couple of days ago...he said "We all get different cards, you just have to make the best of them and then at the end know when to fold them!" No wonder I like this guy.
Thursday, November 6, 2008
Rick here...Okay okay I got it--- blog more :) I heard what you have been telling me!!!
I finally met with my new doctor here in Whitemouth today. He is a great guy-a really straight shooter which is what you need when you have ALS. You don't have a lot of time to screw around! The rate of progression of this thing isn't slowing down one bit! It is a steady and it seems quickening slide downhill. We spent time going over advanced health care directives, end of life issues, do not resuscitate (DNR) orders and etc. Pretty sobering stuff! It still seems so unreal! I don't think you ever get your head around this thing.
The message is clear though...time is of the essence! As I've said before...nothing clarifies your mind like knowing that you will be shot at dawn :)
It is funny...things that used to be important don't matter much anymore - and things I used to take for granted are now VERY important!
When you think of it, all of our days are numbered - it is just in my situation that I have a little more accurate time line to work with than most:)
The message is clear though...time is of the essence! As I've said before...nothing clarifies your mind like knowing that you will be shot at dawn :)
It is funny...things that used to be important don't matter much anymore - and things I used to take for granted are now VERY important!
When you think of it, all of our days are numbered - it is just in my situation that I have a little more accurate time line to work with than most:)
Sunday, November 2, 2008
Joan and Rick here...Monday is Uncle Vie's funeral
Our thoughts and prayers go out to Aunt Evelyn, Phylis, Bruce, Kim, Cindy and Sheila and all their family. We are happy to know that uncle is over his suffering but we are sad that he is gone.
Uncle Vie taught me how to drive years ago. He took me out on regular weekly lessons. He was exceptionally patient and kind with my erratic driving skills at the time. He always made me laugh in the process. On the last day of my lessons...I was so nervous about my test the next day that I asked him if he thought I would pass. He stopped and thought for a moment then looked at me and said...you should probably wear a really short skirt! That was uncle!!!!
For those of you who are are wondering ---did I pass the test! Yes, first time!
Rick and I also were so pleased that he and auntie and family joined us on the Whitemouth ALS walk this spring. Rick and uncle had a few good laughs that day...as usual!
Uncle Vie taught me how to drive years ago. He took me out on regular weekly lessons. He was exceptionally patient and kind with my erratic driving skills at the time. He always made me laugh in the process. On the last day of my lessons...I was so nervous about my test the next day that I asked him if he thought I would pass. He stopped and thought for a moment then looked at me and said...you should probably wear a really short skirt! That was uncle!!!!
For those of you who are are wondering ---did I pass the test! Yes, first time!
Rick and I also were so pleased that he and auntie and family joined us on the Whitemouth ALS walk this spring. Rick and uncle had a few good laughs that day...as usual!
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