I am sorry to vent it's just that I am so upset, angered and feel ripped off. I have not been diagnosed with ALS YET, but I could bet my life I have it. For months, I have had all the symptomes. I am just so pissed that anyone has to get this disease and upset that after so many years of knowing about it, the medical industry still cannot tell us what causes it, let alone what cures it. I just feel ripped off and upset. It feels like a nightmare that I cannot wake up from. I have worked so hard just to live an honest life, pay my bills, save for a home, give to charity, make something of myself and I thought that this year would be the year I would finally find true love. I just feel like I have been ripped off.
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Lorie
Senior member
- Joined
- May 17, 2007
- Messages
- 551
- Reason
- Loved one DX
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- Uni
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- Alabama
- City
- Mobile
You are not ALONE!
You are not alone SJ. We ll feel that way, I think. Feel free to vent. My brother Tim is struggling to hang in there with us. I know it is hard, but Attitude, Will and Faith are important. I am Pissed to! But I also work for ALS! We have to end this monster.
Lorie
You are not alone SJ. We ll feel that way, I think. Feel free to vent. My brother Tim is struggling to hang in there with us. I know it is hard, but Attitude, Will and Faith are important. I am Pissed to! But I also work for ALS! We have to end this monster.
Lorie
caroliney
Active member
- Joined
- Apr 27, 2007
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- 84
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- Loved one DX
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- US
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- South Carolina
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- Goose Creek
Agree With You
Sj,
I Feel The Same As You Do. It Seems So Unfair, Totally Ridiculous That No One Knows What Causes This Horrible Disease, Nor Has Any Cure In The Near Future. Nor A Drug To Halt Als In Its Tracks.
Sometimes, I Wish I Could Take All These Messages On This Forum And Send It To Everyone Across Our Country To Let Everyone Know How This Als Strikes So Many Lives. It Is So Devastating To So Many.
In 2005 This Disease Became Known To Me And My Family. It Is Heartbreaking, And I Can Relate How You Feel.
So Sorry, You Have To Feel This Way, Though, But Try To Think Positive In Spite Of This Horrible Als And Not Let It Rule Your Life. I Have Experienced, As Well As, Many Others On This Forum Just How You Feel. This Journey Is Not One Any Of Us Would Choose.
Hugs & Prayers,
Caroliney
Sj,
I Feel The Same As You Do. It Seems So Unfair, Totally Ridiculous That No One Knows What Causes This Horrible Disease, Nor Has Any Cure In The Near Future. Nor A Drug To Halt Als In Its Tracks.
Sometimes, I Wish I Could Take All These Messages On This Forum And Send It To Everyone Across Our Country To Let Everyone Know How This Als Strikes So Many Lives. It Is So Devastating To So Many.
In 2005 This Disease Became Known To Me And My Family. It Is Heartbreaking, And I Can Relate How You Feel.
So Sorry, You Have To Feel This Way, Though, But Try To Think Positive In Spite Of This Horrible Als And Not Let It Rule Your Life. I Have Experienced, As Well As, Many Others On This Forum Just How You Feel. This Journey Is Not One Any Of Us Would Choose.
Hugs & Prayers,
Caroliney
Loriliz
Member
- Joined
- May 6, 2008
- Messages
- 22
- Reason
- Learn about ALS
- Country
- CA
- State
- ONtario
- City
- London
Count me in
My husband and I went to a 25th anniversary party on the weekend. I was excited because we haven't been out in a while together (the kids keep us busy).
I knew that jumping and jiving was probably not gonna happen, but I was absolutely devastated when I couldn't follow a simple slow dance. My husband is such a good dancer and we have always loved it. I just wanted to cry.
My husband and I went to a 25th anniversary party on the weekend. I was excited because we haven't been out in a while together (the kids keep us busy).
I knew that jumping and jiving was probably not gonna happen, but I was absolutely devastated when I couldn't follow a simple slow dance. My husband is such a good dancer and we have always loved it. I just wanted to cry.
ladyk
Member
- Joined
- Jun 11, 2008
- Messages
- 19
- Reason
- Learn about ALS
- Country
- US
- State
- OH
- City
- Zanesville
I'm there too!
I'm trying to be as zen about my health falling to pieces as I can but I certainly have times of being pretty angry. Just over a year ago I was the picture of health. I worked out everyday, ate healthy and did all the "right things". Then out of the blue one day it all started to change and change quickly! Now I struggle to do day to day tasks. I went from being very independent to having to rely on any friends that offer help. I guess I knew someday that I might develop health issues but had no concept that I could go downhill so fast. I was all into yoga and being at peace but now I find it difficult some days to carry that with me. . I'm mad, I want to do yoga, I too want to dance, or take a freaking walk without making sure someone can come with me in case..., I miss carrying in my own groceries and riding a motorcycle! Thanks for a place to vent and be understood!:evil: I do appreciate everyone on here and the calming effect that you've had on me. I hope that in the future as I come to grips with things that I will be able to help too.
I'm trying to be as zen about my health falling to pieces as I can but I certainly have times of being pretty angry. Just over a year ago I was the picture of health. I worked out everyday, ate healthy and did all the "right things". Then out of the blue one day it all started to change and change quickly! Now I struggle to do day to day tasks. I went from being very independent to having to rely on any friends that offer help. I guess I knew someday that I might develop health issues but had no concept that I could go downhill so fast. I was all into yoga and being at peace but now I find it difficult some days to carry that with me. . I'm mad, I want to do yoga, I too want to dance, or take a freaking walk without making sure someone can come with me in case..., I miss carrying in my own groceries and riding a motorcycle! Thanks for a place to vent and be understood!:evil: I do appreciate everyone on here and the calming effect that you've had on me. I hope that in the future as I come to grips with things that I will be able to help too.
fiddleplayer51
Distinguished member
- Joined
- Mar 24, 2008
- Messages
- 337
- Reason
- CALS
- Diagnosis
- 03/2008
- Country
- US
- State
- VA
- City
- Harrisonburg
ladyk,
My husband is like you: did all the right things, yoga, scupulously clean diet. Last summer he was still hiking 10+ miles per hike with a pack on his back, going for 3-day camping trips hiking alone in the mountains near where we live, doing trail work all day cleaning out water bars and cutting up blow-downs with a hand saw and then coming home and splitting wood for our Fall supply. He walked to and from work every day 2 miles each way.
And then BAM! Where the hell did this come from?! Now he walks with a cane, has a PEG, sleeps with a BiPAP, you know the routine
But, what are you gonna do... :neutral: :?:
Who knows why anything happens? Through it all in coming to terms with it, it helps to realize at least that we have this little window in which to set our affairs straight and make the most of what time we have left. Concentrate on what you can do instead of what you can't do. (Impossible to always do that :evil: )
I also think that it's easier to reach the point of being at peace with it if you're older (my PALS is 65).
All the best to all you PALS on this rough road.
Jane
Here's a pic of his woodpile this past Fall. That's only part of it...the rest is on the other side of the yard. Sure kept us cozy...:-D
My husband is like you: did all the right things, yoga, scupulously clean diet. Last summer he was still hiking 10+ miles per hike with a pack on his back, going for 3-day camping trips hiking alone in the mountains near where we live, doing trail work all day cleaning out water bars and cutting up blow-downs with a hand saw and then coming home and splitting wood for our Fall supply. He walked to and from work every day 2 miles each way.
And then BAM! Where the hell did this come from?! Now he walks with a cane, has a PEG, sleeps with a BiPAP, you know the routine
But, what are you gonna do... :neutral: :?:
Who knows why anything happens? Through it all in coming to terms with it, it helps to realize at least that we have this little window in which to set our affairs straight and make the most of what time we have left. Concentrate on what you can do instead of what you can't do. (Impossible to always do that :evil: )
I also think that it's easier to reach the point of being at peace with it if you're older (my PALS is 65).
All the best to all you PALS on this rough road.
Jane
Here's a pic of his woodpile this past Fall. That's only part of it...the rest is on the other side of the yard. Sure kept us cozy...:-D
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gbrown
Active member
- Joined
- Jun 13, 2008
- Messages
- 77
- Reason
- PALS
- Diagnosis
- 07/2006
- Country
- US
- State
- Virginia
- City
- Bassett
I too have been very active all my life. I have worked on the farm, cut and split wood, worked in the maintenance department for a nylon producing plant, raised a big garden, and was a bluegrass muscian for over 30 years. Of course, I can do none of the above now, but I try to concentrate on the things I can do, the things that I can do to help myself get through this terrible ordeal. Even though I know there is no cure, I still hope for the best. I find a good positive attitude helps me tremendously. When I do something that I didn't think I could do, it gives a feeling of great satisfaction.
The thing that aggrevates me the most is the lack of knowledge by the general public about what ALS is and the effects of it. 99.9% of the people have never heard of ALS. We have talked with insurance reps and SS reps who had never heard of it. We need to get the word out to the public of what we are facing before we are going to get support for finding a cure. My wife and I do everything we can to get the word out. We put letters to the editor in our local newspaper in hope that it will help. I suggest that everyone do the same. I put together a piece titled "A Day in the Life of an ALS Patient", complete with a schedule of my daily excercises and pictures. I sent it to the head of the MD/VA chapter. She made copies and took them to Capitol Hill and distributed them to Congressman Virgil Goode and his staff.
Gordon
The thing that aggrevates me the most is the lack of knowledge by the general public about what ALS is and the effects of it. 99.9% of the people have never heard of ALS. We have talked with insurance reps and SS reps who had never heard of it. We need to get the word out to the public of what we are facing before we are going to get support for finding a cure. My wife and I do everything we can to get the word out. We put letters to the editor in our local newspaper in hope that it will help. I suggest that everyone do the same. I put together a piece titled "A Day in the Life of an ALS Patient", complete with a schedule of my daily excercises and pictures. I sent it to the head of the MD/VA chapter. She made copies and took them to Capitol Hill and distributed them to Congressman Virgil Goode and his staff.
Gordon
fiddleplayer51
Distinguished member
- Joined
- Mar 24, 2008
- Messages
- 337
- Reason
- CALS
- Diagnosis
- 03/2008
- Country
- US
- State
- VA
- City
- Harrisonburg
Gordon,
That's a fantastic idea! I agree that it's so frustrating how ignorant the public is about this disease.
Thanks for the idea. Time to get writing!
Jane
BTW What instrument did you play?
That's a fantastic idea! I agree that it's so frustrating how ignorant the public is about this disease.
Thanks for the idea. Time to get writing!
Jane
BTW What instrument did you play?
gbrown
Active member
- Joined
- Jun 13, 2008
- Messages
- 77
- Reason
- PALS
- Diagnosis
- 07/2006
- Country
- US
- State
- Virginia
- City
- Bassett
Instrument
I played upright bass for twenty years and guitar for the last ten or so years. That's one of the things I miss most. I've been a musician of some sort since I was ten and now can only listen. I can't sing anymore either but I still sing along in my mind. At least that hasn't left me yet.
BTW, I got an email from the ALSA Advocacy this morning urging us to email our senators to sign a letter that is being sent to the Senate Appropriations Committee tomorrow for them to donate 5 million dollars for ALS research. Sample letters can be seen at the Advocacy Action Center web site. I am going to send mine right now.
Gordon
I played upright bass for twenty years and guitar for the last ten or so years. That's one of the things I miss most. I've been a musician of some sort since I was ten and now can only listen. I can't sing anymore either but I still sing along in my mind. At least that hasn't left me yet.
BTW, I got an email from the ALSA Advocacy this morning urging us to email our senators to sign a letter that is being sent to the Senate Appropriations Committee tomorrow for them to donate 5 million dollars for ALS research. Sample letters can be seen at the Advocacy Action Center web site. I am going to send mine right now.
Gordon
fiddleplayer51
Distinguished member
- Joined
- Mar 24, 2008
- Messages
- 337
- Reason
- CALS
- Diagnosis
- 03/2008
- Country
- US
- State
- VA
- City
- Harrisonburg
Thanks for notifying us. I'll visit the site and get my letter emailed.
I know you must miss playing. Just listening just isn't quite the same as playing. It's great you've got a wonderful and supportive wife.
All the best to you both,
Jane
I know you must miss playing. Just listening just isn't quite the same as playing. It's great you've got a wonderful and supportive wife.
All the best to you both,
Jane
$5 Million?
I will send one myself. It is amazing that we have to ASK congress for $5 million dollars to help find a cure. That is such a small amount of money for a country of this magnitude. US yearly GPD = $13 trillion dollars. The DAILY cost to US tax payers for the war in Iraq = $750 MILLION A DAY!
Our congress MUST spend more that $5 million on those who are sick and need help - both in the US and abroad - to cure this BS disease for us now and those in the future who unfortunately will get it.
I will send one myself. It is amazing that we have to ASK congress for $5 million dollars to help find a cure. That is such a small amount of money for a country of this magnitude. US yearly GPD = $13 trillion dollars. The DAILY cost to US tax payers for the war in Iraq = $750 MILLION A DAY!
Our congress MUST spend more that $5 million on those who are sick and need help - both in the US and abroad - to cure this BS disease for us now and those in the future who unfortunately will get it.
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