We just received word that Aunt Christine just passed away in Calgary. She was the aunt who was diagnosed with ALS in December of 2008.
Our thoughts and prayers are with Uncle Keith and all their kids. Uncle Keith and Aunt Christine were soul mates and loved to travel and do everything togther! They especially were thoughtful and supportive to us. They would always send us postcards as they travelled around Europe as well as Alberta knowing that we aren't able to travel anymore. They brought a part of the world to us. We can't imagine the pain that they are all going through right now!
Wednesday, February 25, 2009
Thursday, February 12, 2009
Presents for the present...
Well...I had another breakdown today. I was sitting in my shower wheelchair having a shower and just lost it :(
Joan came around the corner to help dry me and get me up only to find me in a puddle of tears. I pulled it together-she got me transferred to my other wheelchair and I pulled up to the sink to shave and brush my teeth - took one look at myself in the mirror and lost it again! Wow.
My sweetheart put her arms around me and said ' We're in this together dear!" She then said 'lets today just concentrate on the presents we have today - you can still get on the toilet, you can shave yourself, your hands are still working, you can still tell me you love me'
I can't 'uncatch' ALS, but she reminded me that the future is still ahead and that we can enjoy the present - I guess that is why they call right now ' the present' - it is full of lots of presents we can enjoy right now! I am married to a very wise woman! Thanks sweetheart!
I think one of the most difficult things to deal with as you battle ALS is the push me - pull you that happens to you and your loved ones mentally and emotionally as you lose abilities. You are always mourning the loss of something, yet if you dwell too much on it you lose the gift of what you can still do today that you may not be able to do next week. This is one hell of a nasty disease!
So on that note - it is wing night at the Whitemouth Hotel so we are going to crank up 'the beast' and skate uptown for hot wings and beer. Another thing to be thankful for - the pub is wheelchair accessible:)
Joan came around the corner to help dry me and get me up only to find me in a puddle of tears. I pulled it together-she got me transferred to my other wheelchair and I pulled up to the sink to shave and brush my teeth - took one look at myself in the mirror and lost it again! Wow.
My sweetheart put her arms around me and said ' We're in this together dear!" She then said 'lets today just concentrate on the presents we have today - you can still get on the toilet, you can shave yourself, your hands are still working, you can still tell me you love me'
I can't 'uncatch' ALS, but she reminded me that the future is still ahead and that we can enjoy the present - I guess that is why they call right now ' the present' - it is full of lots of presents we can enjoy right now! I am married to a very wise woman! Thanks sweetheart!
I think one of the most difficult things to deal with as you battle ALS is the push me - pull you that happens to you and your loved ones mentally and emotionally as you lose abilities. You are always mourning the loss of something, yet if you dwell too much on it you lose the gift of what you can still do today that you may not be able to do next week. This is one hell of a nasty disease!
So on that note - it is wing night at the Whitemouth Hotel so we are going to crank up 'the beast' and skate uptown for hot wings and beer. Another thing to be thankful for - the pub is wheelchair accessible:)
Monday, February 9, 2009
Rick here...Doing the impossible...Ice Fishing with ALS!
Well..what a time!!!A huge thank you to Jake and the guys from B Team and their friends for inviting Dad and I along on their Ice Fishing Weekend!
They hauled me and all my specialty equipment (walker, wheelchair, scooter, cane, commode chair, specialty cushions,etc , and all my fishing gear, up from the parking lot to the cabin on snow machines. It takes 2 strong guys who know what they are doing using the fireman lift just to get me anywhere at all - up into the sled, out to the ice shack , and then onto my scooter out on the ice ( the scooter also had to be lifted and hauled out on a sled) - and then back again each time!
Jake did quite a job of hosting!
We had lots of laughs, lots of beverages , lots of great food - and even a few fish!
Special arrangements were made to have a picnic table out by the shack :)
There were prizes for biggest, fewest, and most fish. Oh, and of course the 'Most Hammered' and 'Party Animal' awards!
Not to mention late night snowmobile races and a ton of other fun!
Oh... and did I mention that the guys brought along a couple of four wheelers - one with a blade - to clear paths on the ice for me to scoot around on? Unbelievable!! They not only cleared a spot around the fishing shack so I could fish but even plowed paths so I could run around and visit the different spots where everyone was fishing. It really made me a part of things!
They hauled me and all my specialty equipment (walker, wheelchair, scooter, cane, commode chair, specialty cushions,etc , and all my fishing gear, up from the parking lot to the cabin on snow machines. It takes 2 strong guys who know what they are doing using the fireman lift just to get me anywhere at all - up into the sled, out to the ice shack , and then onto my scooter out on the ice ( the scooter also had to be lifted and hauled out on a sled) - and then back again each time!
Jake did quite a job of hosting!We had lots of laughs, lots of beverages , lots of great food - and even a few fish!
Special arrangements were made to have a picnic table out by the shack :)
There were prizes for biggest, fewest, and most fish. Oh, and of course the 'Most Hammered' and 'Party Animal' awards!
Not to mention late night snowmobile races and a ton of other fun!
Oh... and did I mention that the guys brought along a couple of four wheelers - one with a blade - to clear paths on the ice for me to scoot around on? Unbelievable!! They not only cleared a spot around the fishing shack so I could fish but even plowed paths so I could run around and visit the different spots where everyone was fishing. It really made me a part of things!
Never felt safer in my life than surrounded by a gang of firefighters all with EMS training :)
The guys treated Dad and I like kings and created an unbelievably memorable time for us - never thought I'd ever, ever be ice fishing again!
All and all one of the best trips of a lifetime! Thanks guys!!!!
You'll never know what it meant to Dad and I!!
The guys treated Dad and I like kings and created an unbelievably memorable time for us - never thought I'd ever, ever be ice fishing again!
All and all one of the best trips of a lifetime! Thanks guys!!!!
You'll never know what it meant to Dad and I!!
Sunday, February 1, 2009
Two Sparrows in a Hurricane!
Well...today it is exactly one year since Joan and I sat in the neurologists office and received the official report that I have ALS.
Two Sparrows in a Hurricane! describes how we have felt and what our lives have been like since then!
We will never forget walking out of the office holding hands and going down to our car...we held it together till then...and then took one look at each other and burst into tears and held each other for the longest time. We then drove out to see my Dad & Mom - a trip interspersed with frequent stops and tears - and talk to them (more tears) and then called Joans mom and husband(more tears) and then called all the kids(more tears). One tough day.
To say our lives have been turned upside down is an understatement...nearly everything has changed so much. When we came out of the neuro's office I wasn't even using a cane yet...today a year later I am in a power wheelchair or scooter full time and can not lift either leg off the floor more than 3 inches. There is no way I can manage even a step or two without a cane and holding onto a walker or a railing. I can barely turn over in bed and that is with the help of a handrail. Joan has to help me shower in my fancy shower wheelchair. Life is greatly changed. The arms and hands are starting to go faster now as well but thankfully my speech and breathing are holding up relatively well. Oh - another big plus - for now I can still wipe my own butt - sounds kind of funny till you actually think about the reality of it and not being able to do it yourself :) And as we always say...in a couple months - this will be the good old days!
The emotional strain and stress has been horrendous and beyond belief - and for Joan the added physical strain of having to do all the lifting, moving, running, cleaning and caregiving adds even more strain to her load than you can imagine. I fear for her so much - she pushes herself so very hard to look after me and my every need while trying to keep our lives as normal as possible for as long as we can. There is so little I can do to protect her from the pain and stress of all of this. She is one hell of a brave and generous woman!
I can not say that this experience has in any way brought the two of us closer together- only because I don't think it is possible for two people to be any more closely connected and more deeply in love than we were already!! It has been 13 years and our honeymoon has never ended!!
I have never in my life had to deal with such feelings of helplessness and vulnerability in even the very simplest daily things of life though - with no hope of it ever getting better or improving or even stopping its decline. It can be pretty damn discouraging!
Anyways...today has been a day of pretty sober reflection for me and I just wanted to share a bit of that side of it.
Two Sparrows in a Hurricane! describes how we have felt and what our lives have been like since then!
We will never forget walking out of the office holding hands and going down to our car...we held it together till then...and then took one look at each other and burst into tears and held each other for the longest time. We then drove out to see my Dad & Mom - a trip interspersed with frequent stops and tears - and talk to them (more tears) and then called Joans mom and husband(more tears) and then called all the kids(more tears). One tough day.
To say our lives have been turned upside down is an understatement...nearly everything has changed so much. When we came out of the neuro's office I wasn't even using a cane yet...today a year later I am in a power wheelchair or scooter full time and can not lift either leg off the floor more than 3 inches. There is no way I can manage even a step or two without a cane and holding onto a walker or a railing. I can barely turn over in bed and that is with the help of a handrail. Joan has to help me shower in my fancy shower wheelchair. Life is greatly changed. The arms and hands are starting to go faster now as well but thankfully my speech and breathing are holding up relatively well. Oh - another big plus - for now I can still wipe my own butt - sounds kind of funny till you actually think about the reality of it and not being able to do it yourself :) And as we always say...in a couple months - this will be the good old days!
The emotional strain and stress has been horrendous and beyond belief - and for Joan the added physical strain of having to do all the lifting, moving, running, cleaning and caregiving adds even more strain to her load than you can imagine. I fear for her so much - she pushes herself so very hard to look after me and my every need while trying to keep our lives as normal as possible for as long as we can. There is so little I can do to protect her from the pain and stress of all of this. She is one hell of a brave and generous woman!
I can not say that this experience has in any way brought the two of us closer together- only because I don't think it is possible for two people to be any more closely connected and more deeply in love than we were already!! It has been 13 years and our honeymoon has never ended!!
I have never in my life had to deal with such feelings of helplessness and vulnerability in even the very simplest daily things of life though - with no hope of it ever getting better or improving or even stopping its decline. It can be pretty damn discouraging!
Anyways...today has been a day of pretty sober reflection for me and I just wanted to share a bit of that side of it.
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