We had the privilege of having grades 1-6 students and teachers come over to our place today to check out some of the equipment that I use each day. The kids were great. We showed them how the hospital bed, hoyer lift, shower commode chair etc all work.
The teachers and students were all such good sports!!! Special thanks to the brave volunteers who offered to get hoyered, tilted back in chairs etc.
The fund raising kick off for the school for the Whitemouth ALS Walk is this Friday and the actual walk being on May 15th Friday.
We are speaking at the assembly in Whitemouth on Friday and Beausejour on Monday.
Tuesday, April 28, 2009
Thursday, April 23, 2009
Rick and Joan here..."Talking to the school kids"
Yesterday, we had a fantastic experience.
We dropped by the Whitemouth School for a quick 10 minute meeting with Jennifer who is co ordinating the ALS Whitemouth walk on May 15th.
Jennifer invited me to read "My Grandpa has ALS" to the grades 1 - 3. What should have taken 15 minutes wound up taking a whole period. The students had so many questions! And when kids that age have questions ... there are no holds barred. We talked about everything from wheelchairs, feeding tubes, loss of speech and on and on. These kids are sharp!
Joan and I once again realized what a gift it is to have great teachers. We don't know how these teachers do it. Rick says it is like trying to herd cats! (although, we must say for the hour we were with the kids they were quiet, well behaved, and very respectful). What a group!
Tia, Katie and Grandpa Rick went to several businesses in town to hand out ALS posters and coin donation boxes. The girls were great-quite the little sales women. The community support here is beyond belief. We have come to be friends with so many caring people in a very short time.
Katie's (who is six) is getting all geared up for her "garage sale for ALS on the 9th of May, Saturday".
We dropped by the Whitemouth School for a quick 10 minute meeting with Jennifer who is co ordinating the ALS Whitemouth walk on May 15th.
Jennifer invited me to read "My Grandpa has ALS" to the grades 1 - 3. What should have taken 15 minutes wound up taking a whole period. The students had so many questions! And when kids that age have questions ... there are no holds barred. We talked about everything from wheelchairs, feeding tubes, loss of speech and on and on. These kids are sharp!
Joan and I once again realized what a gift it is to have great teachers. We don't know how these teachers do it. Rick says it is like trying to herd cats! (although, we must say for the hour we were with the kids they were quiet, well behaved, and very respectful). What a group!
Tia, Katie and Grandpa Rick went to several businesses in town to hand out ALS posters and coin donation boxes. The girls were great-quite the little sales women. The community support here is beyond belief. We have come to be friends with so many caring people in a very short time.
Katie's (who is six) is getting all geared up for her "garage sale for ALS on the 9th of May, Saturday".
Tuesday, April 14, 2009
Rick and Joan here..."You haven't lived till you have been Hoyered!"
The best way to know how our day goes is to experience a bit of it! Our nephew Conrad got "Hoyered" today! What a great sport he was! We are all learning through this.
Joan here....
Rick is looking good! To look at him sitting in his chair you would not think anything too much is wrong with him. Today, our oldest granddaughter told me that Grandpa Rick is looking like he has lost a lot of weight and is looking very thin. She told me with teary eyes that she is very worried about him. Yep! That is exactly how I feel also.
It breaks my heart every time I see him try and turn himself over in bed, or even try to move a few inches over in his chair to find a comfortable spot. He doesn't complain or say very much about his discomfort as he knows there is not too much anyone can really do for it. He recently told me that he has decided that is how it is now and that he needs to get used to being uncomfortable etc.
Today, I found some men's active sports wear that is somewhat slippery and I am hoping that will help make it easier for him to pull himself up or turn himself over in bed when he needs it. Rick's life is very simple these days. He no longer goes up on the upper level with his wheelchair unless he is being pushed in the commode chair for a shower. I start our day with emptying the night bucket and with bringing him a basin full of water, mirror, shaver and toiletries each morning along with our traditional cup of coffee. Then I bring him all his clothes for the day. I put on his underwear, pants, and socks. His feet curl and swell a lot so putting on shoes has been more difficult. He is wearing a few size larger in shoes. He no longer can pull up his own pants. He tries to roll over from one side to the other to try and help me. He has to use the trapeze to pull himself up far enough in bed so he can lay down to sleep. At night I wake up every hour almost to check and see if his feet are covered or if he needs anything. He can not reach down to pull up the covers over himself. Once dressed then I transfer him over to the commode chair so he can do his business. I have discovered the wonder of the use of plastic bags in this process. I have tried to develop all kinds of little routines and systems to make everything run smooth as it can for both of us.
Rick needs everything handy and in arms reach now. The room has to be more empty so he can get around with out running into stuff. One thing about Rick is that he is so thankful, kind and polite. He is always thanking me for taking care of these things for him. It is as you can imagine very humiliating for him but he presses forward and exhibits such a gratitude for any care he receives.
We are struggling very much with not being able to snuggle the way we used too. The hospital bed is very restrictive. I spend most of my time being very very tired and sad. I try to keep each day as normal as I can but at times it can be so very overwhelming for both of us.
We are so grateful for the kindnesses we have received.
A big day was on Saturday when we headed over to the grocery store where Rick usually sits in the van waiting for me to shop as he can not get in the store. Low and behold, the store owners built an absolutely perfectly accessible ramp. Rick was officially the first one to use it. Wow! we can do our grocery shopping together. We are so thankful to the store owners for having the ramp built!
Each day is a new day and we look to God and are thankful for the day we have together. I believe each day God is giving me the creativity and know how in dealing with each new challenge that pop ups.
A few days ago Rick and I were heading out on errands. I drove the van onto the street and he drove his wheelchair out onto the driveway to get loaded onto the van but this time down the chair sunk! Well, you can imagine, 350 lbs of chair plus his body weight! No one was around at the time to help. There was no way I could even attempt to lift him and the chair out of the mess. I was overwhelmed for the first few minutes! Then I got the idea to go and get the commode chair and transfer him out of the motorized wheelchair. Upon doing so...I then could wiggle the chair somewhat and get it unstuck. In the meantime I am sure it looked somewhat comical to any onlooker. Rick sitting in the middle of the driveway in a commode chair and me madly trying to get the other one free. We did it and away we went! We don't get anywhere "fast" these days!
It breaks my heart every time I see him try and turn himself over in bed, or even try to move a few inches over in his chair to find a comfortable spot. He doesn't complain or say very much about his discomfort as he knows there is not too much anyone can really do for it. He recently told me that he has decided that is how it is now and that he needs to get used to being uncomfortable etc.
Today, I found some men's active sports wear that is somewhat slippery and I am hoping that will help make it easier for him to pull himself up or turn himself over in bed when he needs it. Rick's life is very simple these days. He no longer goes up on the upper level with his wheelchair unless he is being pushed in the commode chair for a shower. I start our day with emptying the night bucket and with bringing him a basin full of water, mirror, shaver and toiletries each morning along with our traditional cup of coffee. Then I bring him all his clothes for the day. I put on his underwear, pants, and socks. His feet curl and swell a lot so putting on shoes has been more difficult. He is wearing a few size larger in shoes. He no longer can pull up his own pants. He tries to roll over from one side to the other to try and help me. He has to use the trapeze to pull himself up far enough in bed so he can lay down to sleep. At night I wake up every hour almost to check and see if his feet are covered or if he needs anything. He can not reach down to pull up the covers over himself. Once dressed then I transfer him over to the commode chair so he can do his business. I have discovered the wonder of the use of plastic bags in this process. I have tried to develop all kinds of little routines and systems to make everything run smooth as it can for both of us.
Rick needs everything handy and in arms reach now. The room has to be more empty so he can get around with out running into stuff. One thing about Rick is that he is so thankful, kind and polite. He is always thanking me for taking care of these things for him. It is as you can imagine very humiliating for him but he presses forward and exhibits such a gratitude for any care he receives.
We are struggling very much with not being able to snuggle the way we used too. The hospital bed is very restrictive. I spend most of my time being very very tired and sad. I try to keep each day as normal as I can but at times it can be so very overwhelming for both of us.
We are so grateful for the kindnesses we have received.
A big day was on Saturday when we headed over to the grocery store where Rick usually sits in the van waiting for me to shop as he can not get in the store. Low and behold, the store owners built an absolutely perfectly accessible ramp. Rick was officially the first one to use it. Wow! we can do our grocery shopping together. We are so thankful to the store owners for having the ramp built!
Each day is a new day and we look to God and are thankful for the day we have together. I believe each day God is giving me the creativity and know how in dealing with each new challenge that pop ups.
A few days ago Rick and I were heading out on errands. I drove the van onto the street and he drove his wheelchair out onto the driveway to get loaded onto the van but this time down the chair sunk! Well, you can imagine, 350 lbs of chair plus his body weight! No one was around at the time to help. There was no way I could even attempt to lift him and the chair out of the mess. I was overwhelmed for the first few minutes! Then I got the idea to go and get the commode chair and transfer him out of the motorized wheelchair. Upon doing so...I then could wiggle the chair somewhat and get it unstuck. In the meantime I am sure it looked somewhat comical to any onlooker. Rick sitting in the middle of the driveway in a commode chair and me madly trying to get the other one free. We did it and away we went! We don't get anywhere "fast" these days!
Saturday, April 11, 2009
Rick and Joan here..."A wonderful evening"
We had a wonderful visit from a youth group from a local church the other evening. It was so wonderful to meet a very lively and enthusiastic group of young people.
Thanks to everyone for coming and visiting with us!
Saturday, April 4, 2009
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