Wow...August 23rd already! This week has been once again a difficult week. I almost hesitate to write anything. Rick had an evaluation this week. He has been feeling for awhile that he is not doing very well. Every time I watch him try and walk I just quietly cry to myself. I cannot believe this is happening still. I guess I will never accept it! It is getting harder and harder to write anything down.
His cane will not carry him much further anymore. He will be using a good "old" walker to give him balance. :( it is hard for the both of us to accept this. Both his arms are not doing well. We know now it is only a matter of time before they are like his legs.
We received an email lately from a group from Whitemouth who are dedicating their offering this year to the ALS Society of MB and want Rick to accept it on their behalf. That is so kind and generous of them.
We will be staying in Wpg still for awhile. The washroom is not completed yet. The kids are doing the best they can.
Rick is really struggling right now! We both can't believe this is happening!
Fund Raiser info......Elvis...September 19th on the Paddle Queen.....Includes Dinner, Dance and Elvis...all for only $48.00 each ticket. Please let us know if you would like some tickets. We can really say from experience that the ALS Society of MB have been sooooo supportive and helpful to us....we really encourage everyone to come out and have a great evening of fun!!!!!
Saturday, August 23, 2008
Saturday, August 9, 2008
Joan here...River boat cruise with Elivs! Fundraiser for ALS Society MB. September 19th.
Hey everyone!!!! Mark your calendar...Fun evening ahead!!!! Special fund raising event on the Paddle Queen Riverboat on September 19th. Dinner and dance. Elvis is alive and well!!! Nick Drobot "tribute artist" http://www.nickakaelvis.com/ will be entertaining us for the evening. As soon as the tickets are available I will post the info or you can email me for the information on the tickets. Price for the evening will be very reasonable! It should be a blast! Nick performed in Whitemouth last week and he was awesome!!! He ended the evening with a bunch of people..or should I say women!!! lol screaming encore! He is also performing at the Elvis Fest in Gimili next weekend.
Rick and I have been enjoying every moment of life! We again are so grateful and would like to mention all the retail outlets, Home Depot, Revy, Walmart for their customer care of providing scooters! This enables Rick and I to roam their outlets. Sometimes we have to wait for one as obviously their are others with the same need.
We are spending more and more time in Whitemouth. Slowly, we are adjusting in our minds to where our new place of residence will be. Because we are such city slickers...there is an adjustment. The town people that we have meet at various functions etc are extremely friendly and awesome!!!
Rick gets through the day and doesn't have much to give beyond that. He desperately wants to be of help to Jake and Val as they continue with getting our place ready. He doesn't have much strength in his arms and legs so he has chosen to mow the lawn on the riding tractor as his contribution of doing something. He loves it! The only thing is that yesterday, I needed his help in the middle of him mowing. He stopped on a bit of a slope. When he went to get back on the mower again he could not! I watched in horror as he walked around and around the mower trying to pull himself up on the seat of the mower. He finally did it! I just stood there and cried!!! After that I was no good for nothing for the rest of the evening. We both were at lost for words!!! We spent a lot of time with tears running down our cheeks!
Thanks again to all of you for your love, prayers, help, and care. Thanks Jake and Val for your dedication to making a special place for Rick and I.
As I write this, I cannot contain the emotion and tears as I remember what took place last night. Rick was sitting in his wheel chair. Jake, Val and I were talking to him. Jake said to Rick "I really don't know how much you weigh and I don't even know if I could pick you up". So with that, Jake went over to Rick and picked him up and held him in his arms. I was so moved by the love, care and concern from Jake for his dad. He wanted to know if he could handle Rick's weight down the line. Rick is a very slim man and becoming slimmer each day but Jake wanted to be assured that he could pick Rick up. We all know down the road soon Rick will need some real hands on.
We apologize to everyone if we are scarce most of the time.
Rick and I have been enjoying every moment of life! We again are so grateful and would like to mention all the retail outlets, Home Depot, Revy, Walmart for their customer care of providing scooters! This enables Rick and I to roam their outlets. Sometimes we have to wait for one as obviously their are others with the same need.
We are spending more and more time in Whitemouth. Slowly, we are adjusting in our minds to where our new place of residence will be. Because we are such city slickers...there is an adjustment. The town people that we have meet at various functions etc are extremely friendly and awesome!!!
Rick gets through the day and doesn't have much to give beyond that. He desperately wants to be of help to Jake and Val as they continue with getting our place ready. He doesn't have much strength in his arms and legs so he has chosen to mow the lawn on the riding tractor as his contribution of doing something. He loves it! The only thing is that yesterday, I needed his help in the middle of him mowing. He stopped on a bit of a slope. When he went to get back on the mower again he could not! I watched in horror as he walked around and around the mower trying to pull himself up on the seat of the mower. He finally did it! I just stood there and cried!!! After that I was no good for nothing for the rest of the evening. We both were at lost for words!!! We spent a lot of time with tears running down our cheeks!
Thanks again to all of you for your love, prayers, help, and care. Thanks Jake and Val for your dedication to making a special place for Rick and I.
As I write this, I cannot contain the emotion and tears as I remember what took place last night. Rick was sitting in his wheel chair. Jake, Val and I were talking to him. Jake said to Rick "I really don't know how much you weigh and I don't even know if I could pick you up". So with that, Jake went over to Rick and picked him up and held him in his arms. I was so moved by the love, care and concern from Jake for his dad. He wanted to know if he could handle Rick's weight down the line. Rick is a very slim man and becoming slimmer each day but Jake wanted to be assured that he could pick Rick up. We all know down the road soon Rick will need some real hands on.
We apologize to everyone if we are scarce most of the time.
Thursday, July 31, 2008
Joan here....ALS brings a new meaning to Belly Dancing!
We are enjoying each and every day going out for an evening walk together! The summer is going by so very fast! While we had our morning coffee we noticed that Rick's stomach is fasciculating unbelievably. I teased him that he brought a new meaning to belly dancing!
Tonight, my youngest sister walked with us to the Forks. We took turns pushing Rick as it is quite a hike from our place. There were two guys walking ahead of us playing musical instruments as we wound our way along the river. One was playing the mandolin and the other one the flute. They played Irish music the whole way as we walked behind them. It was so wonderful to hear them play as we walked. It was like a special gift to us.
My father passed away 17 years ago and so Rick never did get a chance to meet him. What is so strange is that Rick has had three dreams now where my dad comes and talks to him about things. When Rick describes to me what my dad says to him it is so incredible because that is exactly how my dad would have talked and expressed himself.
His foot cramping is getting worse and his fingers in his left hand are not working properly. It is just more reminders of where this thing is headed. It makes us even more determined to enjoy each moment we have together. We are so thankful for the friendship and care that people have extended to Rick. These people really have given him perspective on so many things that he is dealing with.
I am very proud of my husband and how he chooses to get through each day with such faith and courage despite what each inch of his body is screaming out to him.
Tonight, my youngest sister walked with us to the Forks. We took turns pushing Rick as it is quite a hike from our place. There were two guys walking ahead of us playing musical instruments as we wound our way along the river. One was playing the mandolin and the other one the flute. They played Irish music the whole way as we walked behind them. It was so wonderful to hear them play as we walked. It was like a special gift to us.
My father passed away 17 years ago and so Rick never did get a chance to meet him. What is so strange is that Rick has had three dreams now where my dad comes and talks to him about things. When Rick describes to me what my dad says to him it is so incredible because that is exactly how my dad would have talked and expressed himself.
His foot cramping is getting worse and his fingers in his left hand are not working properly. It is just more reminders of where this thing is headed. It makes us even more determined to enjoy each moment we have together. We are so thankful for the friendship and care that people have extended to Rick. These people really have given him perspective on so many things that he is dealing with.
I am very proud of my husband and how he chooses to get through each day with such faith and courage despite what each inch of his body is screaming out to him.
Friday, July 25, 2008
Joan here...Still in Winnipeg till end of August.
Thanks for all your good wishes! For those of you who were wondering where we are even living these days...
I finally got a minute or two to just jot some thoughts down. It has been a busy summer. We have had a lot of company stay over which we do really enjoy. Rick and I decided it best to stay in the city until the end of August. This will give us all more time to get ready to move into our new place. We really enjoy the city so much and love to go for evening walks and dinners together so we are making the most of it while we can!
Jake and Val can't work any harder or faster with both having a full time job as well. They haven't even had a summer themselves. It has been a sacrifice to both them and their young girls this summer not to have holidays or outings as a family. We are hoping this will change really fast once we are into the suite.
As far as Rick is doing...the disease is never going the right way. He is having problems with dropping things. Yesterday, he was trying to help put dishes in the sink and dropped a glass. For both of us it puts us in an emotional downer as soon as something happens. It once again reminds us of what lies ahead. He walks slower and slower with his cane. He has to use handrails on the few stairs that he is able to climb otherwise he would not be able to get up them.
One of the things I still am not used to is getting ready to go out. I always allow extra time but it seems like it is never enough extra time to get to where we are going. Normally if the elevator is busy we could do stairs as an alternative but we can't do that anymore. Sometimes we wait a long time for the elevator. We took the kids to a movie today. They had to take Rick in a special elevator and it was a small one so the gkids and I had to walk up the stairs on our own. We waited in our seats till they brought him up. It is getting harder to be a couple and I find that very frustrating and lonely at times. We used to hold hands all the time when walking and now his scooter is going either to fast or too slow and making it difficult to be close.
He still has regular dreams of not being able to speak. He woke up the other morning after having another one of them and started practising to moan to see if he can't speak down the road, could he at least moan or make sounds to communicate. This is so all beyond us both!
I finally got a minute or two to just jot some thoughts down. It has been a busy summer. We have had a lot of company stay over which we do really enjoy. Rick and I decided it best to stay in the city until the end of August. This will give us all more time to get ready to move into our new place. We really enjoy the city so much and love to go for evening walks and dinners together so we are making the most of it while we can!
Jake and Val can't work any harder or faster with both having a full time job as well. They haven't even had a summer themselves. It has been a sacrifice to both them and their young girls this summer not to have holidays or outings as a family. We are hoping this will change really fast once we are into the suite.
As far as Rick is doing...the disease is never going the right way. He is having problems with dropping things. Yesterday, he was trying to help put dishes in the sink and dropped a glass. For both of us it puts us in an emotional downer as soon as something happens. It once again reminds us of what lies ahead. He walks slower and slower with his cane. He has to use handrails on the few stairs that he is able to climb otherwise he would not be able to get up them.
One of the things I still am not used to is getting ready to go out. I always allow extra time but it seems like it is never enough extra time to get to where we are going. Normally if the elevator is busy we could do stairs as an alternative but we can't do that anymore. Sometimes we wait a long time for the elevator. We took the kids to a movie today. They had to take Rick in a special elevator and it was a small one so the gkids and I had to walk up the stairs on our own. We waited in our seats till they brought him up. It is getting harder to be a couple and I find that very frustrating and lonely at times. We used to hold hands all the time when walking and now his scooter is going either to fast or too slow and making it difficult to be close.
He still has regular dreams of not being able to speak. He woke up the other morning after having another one of them and started practising to moan to see if he can't speak down the road, could he at least moan or make sounds to communicate. This is so all beyond us both!
Monday, July 7, 2008
Rick here...The last dance?
Besides the bad dreams...Each day is a challenge! On a different note...
Just a couple of seconds ago we had a loud knock on our door..."Security here!" We were in shock! What is going on??? here when we came in tonight with our groceries, wheelchair, etc. we left the keys in the door! Joan actually has the habit of putting the keys in the door and wheeling me in. It is easy to miss pulling the keys out after she has me in the apartment. One of the trusty security guards on our building noticed it on his rounds! All three of us had a good laugh!
Back to the challenges...had a great time at Josh and Nikki's wedding! What a fun night! For me though, it was quite bitter sweet. The sound man was great! Perfect music! Great location! lots of fun!!! and I can't dance with my sweetheart! :( Normally, Joan and I open the dance floor and close it at the end of the night! Sadly, no longer!!!
Thanks Naomi, for your gracious 30 second dance with your uncle! You were very kind to ask me. I was so honoured!
At the end of the night, I asked Joan for a slow, slow, slow, dance (you need to have ALS to know what slow dancing really means). We danced (not long), we kissed, we cried!!! My God...a few short months ago I could have never imagined this happening. Joan and I closed down the dance at the German Club with her folks last fall...danced for hours! Joan and I love dancing together!!!
Each day what I am dealing with becomes more real in an unbelieving way! Almost each and every day seems to bring with it a subtle loss of ability of some kind. Nothing seems to happen fast, yet each day is slightly harder.
Today, while trying to get some stuff picked up for our suite, we discovered the wonderful services of scooters at our local Canadian Tire, Rona, and Home Depot! We never realized that they even had such services. Now I can not shop with out them unless Joan pushes me in my chair throughout the store. No fun for either of us! We are so thankful for businesses who have agreed to provide such a service!!!
If they have a comment card...hey take a few minutes for me and people like me and let them know that it is much appreciated!!!
Just a couple of seconds ago we had a loud knock on our door..."Security here!" We were in shock! What is going on??? here when we came in tonight with our groceries, wheelchair, etc. we left the keys in the door! Joan actually has the habit of putting the keys in the door and wheeling me in. It is easy to miss pulling the keys out after she has me in the apartment. One of the trusty security guards on our building noticed it on his rounds! All three of us had a good laugh!
Back to the challenges...had a great time at Josh and Nikki's wedding! What a fun night! For me though, it was quite bitter sweet. The sound man was great! Perfect music! Great location! lots of fun!!! and I can't dance with my sweetheart! :( Normally, Joan and I open the dance floor and close it at the end of the night! Sadly, no longer!!!
Thanks Naomi, for your gracious 30 second dance with your uncle! You were very kind to ask me. I was so honoured!
At the end of the night, I asked Joan for a slow, slow, slow, dance (you need to have ALS to know what slow dancing really means). We danced (not long), we kissed, we cried!!! My God...a few short months ago I could have never imagined this happening. Joan and I closed down the dance at the German Club with her folks last fall...danced for hours! Joan and I love dancing together!!!
Each day what I am dealing with becomes more real in an unbelieving way! Almost each and every day seems to bring with it a subtle loss of ability of some kind. Nothing seems to happen fast, yet each day is slightly harder.
Today, while trying to get some stuff picked up for our suite, we discovered the wonderful services of scooters at our local Canadian Tire, Rona, and Home Depot! We never realized that they even had such services. Now I can not shop with out them unless Joan pushes me in my chair throughout the store. No fun for either of us! We are so thankful for businesses who have agreed to provide such a service!!!
If they have a comment card...hey take a few minutes for me and people like me and let them know that it is much appreciated!!!
Thursday, July 3, 2008
Joan here...Just scooting around!
As of today, Rick is an official scooter tooter! He picked his scooter up through the ALS Society! The scooter has been wonderful to get Rick and I out and about in the wonderful sun! The wheelchair is too difficult to push for any long distances. Using the scooter means he has legs to walk again for a distance!
We are so excited that the garage is up at the kids place now. That means we will be able to move some of our "stuff" into storage there and have a place to park all the vehicles...scooter, wheelchair, golf cart and of course our car! The kids got a great deal on a golf cart...another toy for Rick to scoot around in also. Too funny! This is all way beyond us in our thinking that is for sure!
Both Rick and I have emotionally raw days at times! He has been experiencing some really terrifying dreams which I usually wake up from all his moaning and then wake him up from them. One is he is laying on the sandy beach so he can enjoy the feel of the sand and be near the water. Because he can't move in his dreams when the tide starts to roll in he is paralyzed with fear that he won't be able to get up and move away and he will drown.
Another dream is he is sitting on a deck and enjoying the outdoors. No one is on the deck with him and he is totally paralyzed sitting in his wheel chair. A big black crow lands on his chest and starts to stare at his eyes. Rick lays there thinking that the crow will pluck out his eyes and then he will be blind along with everything else.
We are so excited that the garage is up at the kids place now. That means we will be able to move some of our "stuff" into storage there and have a place to park all the vehicles...scooter, wheelchair, golf cart and of course our car! The kids got a great deal on a golf cart...another toy for Rick to scoot around in also. Too funny! This is all way beyond us in our thinking that is for sure!
Both Rick and I have emotionally raw days at times! He has been experiencing some really terrifying dreams which I usually wake up from all his moaning and then wake him up from them. One is he is laying on the sandy beach so he can enjoy the feel of the sand and be near the water. Because he can't move in his dreams when the tide starts to roll in he is paralyzed with fear that he won't be able to get up and move away and he will drown.
Another dream is he is sitting on a deck and enjoying the outdoors. No one is on the deck with him and he is totally paralyzed sitting in his wheel chair. A big black crow lands on his chest and starts to stare at his eyes. Rick lays there thinking that the crow will pluck out his eyes and then he will be blind along with everything else.
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