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There is an old pilot's proverb. Learn from the mistakes of others. You won't live long enough to make them all yourself. Good words to live by now I'd say..
Fatigue
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Great story, Al!
I'm not sure how long Kathy will continue to work. She, too, is (was) a workaholic. I figure it's not up to ME to tell her to quit...she's got to be the one to decide when the time is right.
Tracy,
We all need to be slapped upside the head with a dose of reality every so often...it sometimes feels cold at first, but then it starts to sink in. Thank you for that! Kathy's been diagnosed now for about 6 months. I haven't fully gotten out of the denial stage yet...I'm guessing that she's still having difficulty doing that as well. I guess it will take time and support to get a handle on where to go next.
Marcia
I'm not sure how long Kathy will continue to work. She, too, is (was) a workaholic. I figure it's not up to ME to tell her to quit...she's got to be the one to decide when the time is right.
Tracy,
We all need to be slapped upside the head with a dose of reality every so often...it sometimes feels cold at first, but then it starts to sink in. Thank you for that! Kathy's been diagnosed now for about 6 months. I haven't fully gotten out of the denial stage yet...I'm guessing that she's still having difficulty doing that as well. I guess it will take time and support to get a handle on where to go next.
Marcia
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Happy Summer Everyone!
Hi Everyone:
I haven't been on lately, as now the kiddies are home from school and our camping season has begun. We just returned from a great week up near South River, Ont. on beautiful Eagle lake. We had a fun time, but I really missed talking to Gail everyday like I usually do. We did alot of swimming, canoeing and marshmallow roasting, but with all that fun, there was still that cloud of sadness over head. As much as I try to not think of ALS and what it is doing to my best friend, I can't. That is the new life with ALS.
Gail had a bad week, and a very bad fall this time
. She really hurt herself and has decided to give in to the walker and cane now. I read your story MT Pockets and you are right. You too Tracy 22, about using the things you need to get around. I think Gail feels that she is fighting it when she doesn't give in to the cane etc.
I really wasn't expecting her to deteriorate this quickly. I am saddened and shocked at how difficult it is for her to walk now. I am veryscared too.
Our motto this summer is to have fun and make this a really fun summer for the kids too. As we all know, the next few years are going to be the most difficult years in these little kids lives. They still have no idea what is going on and it is heartbreaking knowing what is to com.
We are heading off Tuesday (without husbands) to Gail's cottage and we are going to have fun! No matter what! 3 women and 6 kids under the age of 11. I can't wait.! I have taken some extra weeks off from work this summer to spend with Gail and her family, and when September comes, will re look at my job then. I am fortunate that my company is so understanding and supportive.
Well, I just wanted to say hello to all of you. I hope you are all doing your best to have fun and stay as happy as you can. I will cheers to you all on Tuesday night up under the Muskoka stars with my glass of Australian Cabernet.!
Happy summer everyone!
Barbie :wink:
Hi Everyone:
I haven't been on lately, as now the kiddies are home from school and our camping season has begun. We just returned from a great week up near South River, Ont. on beautiful Eagle lake. We had a fun time, but I really missed talking to Gail everyday like I usually do. We did alot of swimming, canoeing and marshmallow roasting, but with all that fun, there was still that cloud of sadness over head. As much as I try to not think of ALS and what it is doing to my best friend, I can't. That is the new life with ALS.
Gail had a bad week, and a very bad fall this time
. She really hurt herself and has decided to give in to the walker and cane now. I read your story MT Pockets and you are right. You too Tracy 22, about using the things you need to get around. I think Gail feels that she is fighting it when she doesn't give in to the cane etc.I really wasn't expecting her to deteriorate this quickly. I am saddened and shocked at how difficult it is for her to walk now. I am veryscared too.
Our motto this summer is to have fun and make this a really fun summer for the kids too. As we all know, the next few years are going to be the most difficult years in these little kids lives. They still have no idea what is going on and it is heartbreaking knowing what is to com.
We are heading off Tuesday (without husbands) to Gail's cottage and we are going to have fun! No matter what! 3 women and 6 kids under the age of 11. I can't wait.! I have taken some extra weeks off from work this summer to spend with Gail and her family, and when September comes, will re look at my job then. I am fortunate that my company is so understanding and supportive.
Well, I just wanted to say hello to all of you. I hope you are all doing your best to have fun and stay as happy as you can. I will cheers to you all on Tuesday night up under the Muskoka stars with my glass of Australian Cabernet.!
Happy summer everyone!
Barbie :wink:
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Hi Barbie,
Thanks for checking in. I am so happy that you can spend some time with Gail this summer. We have been reading posts about PALS who have had their friends desert them when the going gets tough. You are a wonderful friend.
I agree that we need to have all the fun we can have NOW! We are going to a cottage at my favorite beach for ten days starting next Sunday. Our grandchildren will be there also. What a blessing!
I hope for each one of us on this forum that we can experience some menory making moments this summer to help us carry on with our battle! It may not be something big, just a hug from a good friend or a grandchild, a special note or message or just quiet time with someone you love.
hugz and prayers,
Leah
Thanks for checking in. I am so happy that you can spend some time with Gail this summer. We have been reading posts about PALS who have had their friends desert them when the going gets tough. You are a wonderful friend.
I agree that we need to have all the fun we can have NOW! We are going to a cottage at my favorite beach for ten days starting next Sunday. Our grandchildren will be there also. What a blessing!
I hope for each one of us on this forum that we can experience some menory making moments this summer to help us carry on with our battle! It may not be something big, just a hug from a good friend or a grandchild, a special note or message or just quiet time with someone you love.
hugz and prayers,
Leah
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Barbie4
I had to take my own advice yesterday and apologize to my sister for something that had been between us for a long time. It was hard to do because I felt it was her fault to begin with not mine, but I swallowed my pride and asked her to forgive me and she did. One more stumbling block out of the way that I don't have to carry on my shoulders and worry about that anymore.
It feels like a weight has been lifted when I take care of all these little things that I have been putting off for such a long time. We are all blessed in a way to have the time to make "things right" with others whatever that may mean to you.
Thank God for good friends that will stand by you through all this and support you. My wife has no one who will help her with my care. It is very tiring on her. I love to have company come over to visit but just have trouble leaving the house for anything. Every day my wife asks if I want to go to the store with her or go riding and all I want to do is stay hidden in my cave away from the world. She cannot understand that at all.
It hurts to ride in a car due to back injuries, then all the trouble of getting the wheelchair out and everyone staring at you like you have the plague or something.
Sorry not one of my better days I guess. Just venting a little and worried about the wife. She refuses to even get on the site to get help because she says then that would be accepting I have ALS. Another trip down river de nile.
Love you guys and gals and God bless.
I had to take my own advice yesterday and apologize to my sister for something that had been between us for a long time. It was hard to do because I felt it was her fault to begin with not mine, but I swallowed my pride and asked her to forgive me and she did. One more stumbling block out of the way that I don't have to carry on my shoulders and worry about that anymore.
It feels like a weight has been lifted when I take care of all these little things that I have been putting off for such a long time. We are all blessed in a way to have the time to make "things right" with others whatever that may mean to you.
Thank God for good friends that will stand by you through all this and support you. My wife has no one who will help her with my care. It is very tiring on her. I love to have company come over to visit but just have trouble leaving the house for anything. Every day my wife asks if I want to go to the store with her or go riding and all I want to do is stay hidden in my cave away from the world. She cannot understand that at all.
It hurts to ride in a car due to back injuries, then all the trouble of getting the wheelchair out and everyone staring at you like you have the plague or something.
Sorry not one of my better days I guess. Just venting a little and worried about the wife. She refuses to even get on the site to get help because she says then that would be accepting I have ALS. Another trip down river de nile.
Love you guys and gals and God bless.
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Hi Al and Leah
Hi there to both of you and everyone else too)
Just baking muffins and Gail's favourite cookies as I pack to get ready for tomorrow's trip.
Leah, You always have the right words to say and I really appreciate your kind words. You are so right about the small things that make a difference each day and mean so much. I hope you have a great time with your family this summer. I will be thinking of you.
Al, You are a good man to swallow your pride and apologize for something you don't believe you should have to . That is a huge thing to do. Good for you. ! Even though I do not have ALS, it still makes me re look at my relationships and do some thinking too.
You know, we are about 5 to 6 months into this and you have mentioned that you do not want to leave the house for many reasons now. It makes me wonder if Gail will be the same. She has always been such an active person. I am always wondering to myself, what should I be doing now and thinking of what I can do in the future to make her happy as she progresses.
Don't even think about the people who look at you in your wheelchair. Go out and have fun! Smile at them and they will smile at you back. Sorry to hear that your wife does not have much help. She really needs to find someone to help her too. We are just starting to have to help Gail with things, so I can only imagine the needs to come, but I will be there for her, through thick and thin. We are lucky that she has alot of support so far, and I hope it continues.
Anyhow, I better scoot and get the packing finished. Al, keep smiling, and laughing and give that wife of yours a big kiss. I am sure she deserves it.
I will talk to you when I get back next week. :-D
Barbie :-D :-D
Hi there to both of you
and everyone else too)Just baking muffins and Gail's favourite cookies as I pack to get ready for tomorrow's trip.
Leah, You always have the right words to say and I really appreciate your kind words. You are so right about the small things that make a difference each day and mean so much. I hope you have a great time with your family this summer. I will be thinking of you.
Al, You are a good man to swallow your pride and apologize for something you don't believe you should have to . That is a huge thing to do. Good for you. ! Even though I do not have ALS, it still makes me re look at my relationships and do some thinking too.
You know, we are about 5 to 6 months into this and you have mentioned that you do not want to leave the house for many reasons now. It makes me wonder if Gail will be the same. She has always been such an active person. I am always wondering to myself, what should I be doing now and thinking of what I can do in the future to make her happy as she progresses.
Don't even think about the people who look at you in your wheelchair. Go out and have fun! Smile at them and they will smile at you back. Sorry to hear that your wife does not have much help. She really needs to find someone to help her too. We are just starting to have to help Gail with things, so I can only imagine the needs to come, but I will be there for her, through thick and thin. We are lucky that she has alot of support so far, and I hope it continues.
Anyhow, I better scoot and get the packing finished. Al, keep smiling, and laughing and give that wife of yours a big kiss. I am sure she deserves it.
I will talk to you when I get back next week. :-D Barbie :-D :-D
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Good morning!
Barbie, it's hard for me, too to have "ALS-free" days. I can seem to find "ALS-free" moments...and I'll take what I can get. Have fun up at the cottage! It's great that your work is so supportive and understanding! I am almost dreading the start of school this fall...life gets SO hectic and it's much harder to get away. I'm going to have to budget my time very efficiently so that I can have the time to be with Kathy whenever possible!
Right now we are in the process of helping Kathy's husband remodel their main floor bathroom. They're putting in an accessible shower and making sure there are plenty of grab bars around. We're also doing fun things, too. Last Saturday we went to the Crosby, Stills, Nash, and Young concert in St. Paul. FABULOUS! They said that they had just gotten done with a tour in Canada...anyone go? This Friday we're going to the Body Worlds exhibit at the Science Museum. http://www.smm.org/bodyworlds/ In August, Kathy and her husband, Earl, are coming up to our cabin for a relaxing getaway. We also try to just go up there and have fun, calm times...watch a movie...sit and talk...sit in their garden and listen to the birds...any time together is so precious! There are times when the reality really hits hard, but I try to live in the moment and try not to project into what is to come.
Al, hang in there...and tell your lovely wife to do the same! I haven't noticed that my sister is self-conscious about her walker...but the chair may be different. I know it's probably easier said than done to just ignore the stares when you're out and about. The people who stare probably have so many questions going through their heads when they see you. Some may merely wonder what happened to you to require the chair. Others may wonder where you got the chair because they know someone who needs one and they want your advice. When Kathy and I were at the grocery store the other day, a woman with a cane came up to Kathy and asked about her walker. She had been looking for a walker for quite some time and asked Kathy's opinion about hers. Kathy even let her try the walker and gave her the name of the store where she got it. I thought it was a great moment when Kathy could feel like she helped someone else just because she was using her walker!
Anyway, I should run and get some other things done this morning. Smiles and hugs to all of you! Take care!
Marcia
Barbie, it's hard for me, too to have "ALS-free" days. I can seem to find "ALS-free" moments...and I'll take what I can get. Have fun up at the cottage! It's great that your work is so supportive and understanding! I am almost dreading the start of school this fall...life gets SO hectic and it's much harder to get away. I'm going to have to budget my time very efficiently so that I can have the time to be with Kathy whenever possible!
Right now we are in the process of helping Kathy's husband remodel their main floor bathroom. They're putting in an accessible shower and making sure there are plenty of grab bars around. We're also doing fun things, too. Last Saturday we went to the Crosby, Stills, Nash, and Young concert in St. Paul. FABULOUS! They said that they had just gotten done with a tour in Canada...anyone go? This Friday we're going to the Body Worlds exhibit at the Science Museum. http://www.smm.org/bodyworlds/ In August, Kathy and her husband, Earl, are coming up to our cabin for a relaxing getaway. We also try to just go up there and have fun, calm times...watch a movie...sit and talk...sit in their garden and listen to the birds...any time together is so precious! There are times when the reality really hits hard, but I try to live in the moment and try not to project into what is to come.
Al, hang in there...and tell your lovely wife to do the same! I haven't noticed that my sister is self-conscious about her walker...but the chair may be different. I know it's probably easier said than done to just ignore the stares when you're out and about. The people who stare probably have so many questions going through their heads when they see you. Some may merely wonder what happened to you to require the chair. Others may wonder where you got the chair because they know someone who needs one and they want your advice. When Kathy and I were at the grocery store the other day, a woman with a cane came up to Kathy and asked about her walker. She had been looking for a walker for quite some time and asked Kathy's opinion about hers. Kathy even let her try the walker and gave her the name of the store where she got it. I thought it was a great moment when Kathy could feel like she helped someone else just because she was using her walker!
Anyway, I should run and get some other things done this morning. Smiles and hugs to all of you! Take care!
Marcia
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Yes Marcia... I went. They were great, but at their age it seems as if it takes awhile for them to get the pipes warmed up... almost as good as Woodstock!
Barb: get your friend to Muskoka! I took my wife to our place on Lake of Bays every weekend and never regretted one moment of it. She, of course didn't care for my method of getting her into the lake, but I figured dumping the wheelchair off the end of the dock was a whole lot better than getting the wheels wet!
Al... your story on the wharf sounds familiar and I don't have any physical disabilities (there are those who would argue the mental situation but I ignore them). But for the 800 or so miles between here and Mississippi, I'd be happy to take you out on your boat fishing! My brother-in-law is a C4 paraplegic... we used to go out on his boat in Lake Ontario all the time. The walleye fishing was incredible... we stayed out until the beer was gone!
Al P.: See you tonight! For those of you in the Toronto area, it's ALS night at the Jays game. The Yankees are in town. I've been looking forward to this game since I bought my tickets 6 weeks ago! Hoping to meet face to face with at least some of the names on the board!
T.
Barb: get your friend to Muskoka! I took my wife to our place on Lake of Bays every weekend and never regretted one moment of it. She, of course didn't care for my method of getting her into the lake, but I figured dumping the wheelchair off the end of the dock was a whole lot better than getting the wheels wet!
Al... your story on the wharf sounds familiar and I don't have any physical disabilities (there are those who would argue the mental situation but I ignore them). But for the 800 or so miles between here and Mississippi, I'd be happy to take you out on your boat fishing! My brother-in-law is a C4 paraplegic... we used to go out on his boat in Lake Ontario all the time. The walleye fishing was incredible... we stayed out until the beer was gone!
Al P.: See you tonight! For those of you in the Toronto area, it's ALS night at the Jays game. The Yankees are in town. I've been looking forward to this game since I bought my tickets 6 weeks ago! Hoping to meet face to face with at least some of the names on the board!
T.
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At the risk of getting in trouble for thread hijacking I'll see ya there TBear. I'll be wearing an ALS shirt and a white ball cap. Bringing the chair so daughter or wife will be pushing. Sec 231 row 13. AL.
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In Response to Marcia's question.
I have also found fatigue to be a big nuisance in my life. With the stress of what is happening due to ALS, and not always being able to take life easy, my energy level gets very low.
I have found that this affects my "Vitamin B" levels, when they drop I am more fatigued.
Have your "B Vitamin" levels checked and see if they are normal or low.
If low then the doctor may prescribe a "B12" shot, or some form of "B".
I take a weekly "B12" shot to help with this - and it does.
Take care,
Joel
I have also found fatigue to be a big nuisance in my life. With the stress of what is happening due to ALS, and not always being able to take life easy, my energy level gets very low.
I have found that this affects my "Vitamin B" levels, when they drop I am more fatigued.
Have your "B Vitamin" levels checked and see if they are normal or low.
If low then the doctor may prescribe a "B12" shot, or some form of "B".
I take a weekly "B12" shot to help with this - and it does.
Take care,
Joel
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Thanks TBear
Thanks for the offer TBear. If you were closer I might take you up on that fishing trip offer. It's bad to have a perfectly good cape horn fishing boat sitting in the driveway, and I can't use it.
Maybe one of my sons will get a day off soon so they can take me out and watch out for me, as long as they don't use me for sharkbait. Haha
AL
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Thanks for the offer TBear. If you were closer I might take you up on that fishing trip offer. It's bad to have a perfectly good cape horn fishing boat sitting in the driveway, and I can't use it.
Maybe one of my sons will get a day off soon so they can take me out and watch out for me, as long as they don't use me for sharkbait. Haha
AL
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Hey Al. If you can hang in till maybe Feb. I'll try to get down and maybe we can get out. I try to go to Florida for a few weeks in Feb. so you never know. Miss. isn't that far from Tampa.
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Hey lets go fishing
Sounds like a good idea Al. Just hope we are both still kicking when the time comes maybe we can go for a trip. We could just fill up the boat with gas and head due south toward Mexico. I know we would not make it, but bet the scenery would be nice. What a way to go....
AL
Sounds like a good idea Al. Just hope we are both still kicking when the time comes maybe we can go for a trip. We could just fill up the boat with gas and head due south toward Mexico. I know we would not make it, but bet the scenery would be nice. What a way to go....
AL
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Well when you run out of gas you radio the Coast Guard and then you get a neat helicopter ride home. Now that's what I'd call fun.
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