am I crazy, I just want enjoy what's left

Status
Not open for further replies.

bryanmn

Member
Joined
Nov 26, 2006
Messages
16
Reason
PALS
Country
US
State
MN
City
Maple Grove
Sometimes I think I am ignoring my ALS or just accepting it and trying to enjoy what is left of my life. People around me can be so sad or avoid me, but my best friends say they are sorry, hang to help around the house and drive me home from happy hour.
I like a good cry, but sometimes I want to say yes I have ALS and I need to enjoy the now, so please don't stay sad all day, because I don't have that many days to be sad.

Anyone else feel like this?
 

Lindoglvr

Member
Joined
Nov 24, 2006
Messages
26
Reason
Learn about ALS
Country
US
State
VA
City
Newport News
Bryan,

I don't think you're crazy at all to enjoy life and to be happy, rather than feeling sad every day about the diagnosed of ALS. Actually, all people should live as if "today is their last day"....maybe this world would be a better place. People would slow down and learn to enjoy and do things that are really important, say the things we mean to say all the time to people we love, etc.

Just think of the people that are taken suddenly and never had that chance.

Linda
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi Bryan. I noticed you are new. Welcome. If you stick around long enough or read back you will find lots of people here with your attitude. With ALS attitude counts and (usually) the better the attitude the longer you live. It's not scientific but happier people are more productive and I think will last longer. AL.
 

Pollyanna

Active member
Joined
Sep 29, 2006
Messages
38
Country
US
State
TX
City
Azle
Well, if you're crazy, there are a bunch of us in the same nut house! :) Yes, it's a death sentence, and yes it's an insidious, horrible disease, and absolutely my husband and I both hate it that he has it. BUT....we both retired the minute we got the diagnosis, and although we aren't doing anything exotic, we are living our dream....to spend every waking moment together. And we are loving it...even on days like today when we had to call 911 to get him out of the floor! Yes, we cry sometimes, but we laugh more, and it's wonderful to be alive. And with this disease, if you have the right attitude, there are a lot of things to laugh about! Hang in there Bryan, and don't let those other folks bring you down...you have the right idea!:-D
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
You have the right idea, Bryan! Everybody should live as if they might step off a curb tonight and get flattened by a truck. IF they did, there would be no more unkind words between friends and family, no more unkind actions against the less fortunate, and we'd all enjoy the sunsets more often. So go for it! Someone else on this forum said it best: "either get busy living or get busy dying." Enjoy your morning, Cindy
 

DavidGL

Active member
Joined
Aug 18, 2006
Messages
41
Reason
Learn about ALS
Country
US
State
PA
City
Huntingdon Valley
bryanmn said:
Sometimes I think I am ignoring my ALS or just accepting it and trying to enjoy what is left of my life. People around me can be so sad or avoid me, but my best friends say they are sorry, hang to help around the house and drive me home from happy hour.
I like a good cry, but sometimes I want to say yes I have ALS and I need to enjoy the now, so please don't stay sad all day, because I don't have that many days to be sad.

Anyone else feel like this?
Bryan,
You should say exactly that to them! I think they would appreciate hearing it. It must be sooo hard for the friends and relatives to figure out how to deal with it.

DavidGL
 

jimmylee

New member
Joined
Nov 30, 2006
Messages
8
Reason
PALS
Country
US
State
california
City
orangevale
Bryan

Hey Bryan kudos, to you I also was recently diagnosed w/ this disease and its harder watching those around me. It's as they expect me to break down, but i've known for awhile something was'nt right and have a HUGE LOVING GOD that walks me thru each day as though he wants me to feel his presence. So I to live as though today is the last day I have and TRY to enjoy the moments I have. Keep the faith and GOD BLESS you and yours.
 

bryanmn

Member
Joined
Nov 26, 2006
Messages
16
Reason
PALS
Country
US
State
MN
City
Maple Grove
Thanks for the encouragement that is exactly what I needed. Its good to hear from people in the same crummy situation, but still able to enjoy life.

I recently got a power wheel chair from the ALS lending pool, and I having a blast driving it around work and home. The ALS lending pool has been a great resource for accessibility aids.

I am working on picking out my permanent motorized wheel chair. I am think of getting a Permobile C500 Corpus or the C300 Corpus. What motorized wheelchairs do other people like?
 

MarciaA

Distinguished member
Joined
Mar 13, 2006
Messages
116
Reason
PALS
Country
US
State
MN
City
Owatonna
David,

It IS hard for family & friends to know how to deal with this. We want to stay as upbeat as possible, but don't want to come off like we don't care...we want to cry with you, but we understand that crying all the time isn't the answer. I view it like a great big roller coaster...sometimes I'm up and sometimes I'm down...but it often feels like I have a blindfold on during the ride because I never really know what's going to happen next.

Bob, (bryanmn)
Welcome to the forum! I've been away from it for a while, but have found lots of support through the wonderful people here! I see you're from Minnesota. I'm from Owatonna and my sister who has ALS lives in St. Paul. I see from your website that you've gone to the support group meetings at the U...I'm not sure where her group meets, but you may even be in the same group! Small world, huh?

Marcia
 

sara06

Member
Joined
Aug 9, 2006
Messages
29
Country
Ottawa
State
Michigan
City
Jenison
Keep it up!

Hi Bryan,

I think your attitude is absolutely remarkable. I don't have ALS, but I just lost my mother after taking care of her for 8 months. My mom was like you, tried to enjoy every new moment. She was a jokester and had a strangely morbid sense of humor about the disease. I think that made it a lot easier on me and the rest of my family. It's confusing for us at first. We tend to dip our toes in and test the waters. We don't want to be too optimistic, for fear of upsetting or even annoying our ill loved ones.

How long ago was your diagnosis? Your friends and family will adjust eventually. It's very hard at first to not wear your emotions on your sleeve. I learned to keep my tear time with my mother for the overwhelmingly happy moments, I usually did most of my grieving with my sister... away from my mom. It will get better, just beware, when your friends haven't seen you in a little while, the changes and progression seem less gradual and it sets them back with their grief. You just keep on keepin' your head up and your spirit will always follow! You are setting a great example.

God Bless you and yours,
Sara
 

bryanmn

Member
Joined
Nov 26, 2006
Messages
16
Reason
PALS
Country
US
State
MN
City
Maple Grove
Hi Sara and everyone else - My story.....

Sara and everyone,

My diagnosis was July 24, 2006, but I had noticed symptoms from August 2005.
My legs hurt after running with my daughter and struggled to run a mile in 13 minutes. Then a few months later I could not run, because of a sore left leg. Then walking became difficult with a limp.

While in Maui, April 2006, my kids were joking that I stumbled into the bars instead of coming out of the bars. I am so happy we made that trip to Hawaii. I went scuba diving for the 1st time with my son. Guess what, my left leg did not work and I needed someone help to get the flippers on. Snorkeling was beautiful even it was raining.

Later, May 2006, I went to the doctor for a sore back and knee, he said it was bulging disk, so I went to physical therapy. Then I started bouncing off the walls because I was losing my balance.

June 2006, my legs froze from spasticity at a convetion center company wide meeting. Here I am sitting, my legs don't work, and a 24 foot high screen has a HUGE clock saying 30 minutes till presentation starts. I freaked out stumbled out of the convention center, took a taxi to back to my car, got in my car, stumbled to the Emergency Room, complained of balance issues and strange twitches in the shoulder (a.k.a fasiculations) the doctor said it was in my head.

July 2005, we forced our way to see a Neurologist that week, most appointments take 3 to 6 week to see a doctor. Managed care what a dissappointment! Our 1st neurologist said you probably have ALS but he wasn't sure and he walked out of the room. Son of *****. There we sit shocked and the doctor left the room. Finally we went the ALS clinic at Fairview, it was like we came home. Our ALS doctor, Dr Walk (isn't it ironic, don't you think..) was very compassionate, and we meet a social worker, occupational therapist, and had a 3 hour appointment. If you have ALS find a multi-disciplinary ALS clinic, they totally get it.

July 2005, we go to church, shaking in our boots scared, keeping the news to ourselves. The sermon was about God's Love and community, reach out to the family and community and God's Love will surround you. Well it has and I feel blessed. Yes ALS is a death sentence, but so is life, but I am experiencing so much love from friends and community, that I finally understand what life is about and Gods love.

That's my story in the last year, I look forward to the next day, every morning I wake up, I am a lucky man...

Bob (bryanmn)
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Thanks Bob for putting a person to a name. It helps to have an idea who people really are on the forum. Makes it more like family and not just a bunch of names with an illness. AL.
 

liz

Senior member
Joined
Nov 9, 2006
Messages
642
Reason
PALS
Diagnosis
11/2006
Country
US
State
NY
City
Albany
Bob -

We're all going to have some bad days because of ALS and so are those who care about us. Doesn't mean we have to let it take over very waking minute of our lives.

You seem to have a positive approach to the situation. How are your wife and kids doing with all of this? I'd like to think your attitude is helpful to them.

I do think Sara made some good points about how others react to us, ones I had not considered. I'm having a hard time reading some peoples' reactions, some folks have been really great, and some folks have just been incredibly strange about the whole thing. I think some people are just plain better at handling these situations than others.

As to your request for info about wheelchairs - actually, I know nothing, but I'm picturing you in something with a side car. :-D

Liz
 

bryanmn

Member
Joined
Nov 26, 2006
Messages
16
Reason
PALS
Country
US
State
MN
City
Maple Grove
Liz -

Our teenagers were at first in shock, but we know they we talking to friend and grandparents, cousins, etc. Since teenager naturally pull away to excert their independance, its hard to tell sometimes. But I give my daughter rides to school and pick her up from sports practice. Its amazing how much being in a car for 15 minutes with nothing to do but talk can help a relationship.

My wife is having a hard time but church support groups for people with similar crisis like agressive cancer and the ALS support groups at Fairview seem to help.

My parents are having a harder time, since they do not see me every day. We have invited them to the ALS support groups as well.

How does your family cope with ALS?

-Bob
 

liz

Senior member
Joined
Nov 9, 2006
Messages
642
Reason
PALS
Diagnosis
11/2006
Country
US
State
NY
City
Albany
Bob -

Our kids are aged 7 - 14. We haven't said "ALS" to them because of the unpredictable way and time frames in which it progresses. They all knew my right hand had become crippled and when I started noticing more symptoms and eventually got diagnosed we decided to say that the problem I have in my right hand is now starting in my left hand and legs, that I will gradually become weaker, but we don't know how long this might take. We opted out of addressing the mortality issue yet because of the youngest not be old enough to digest this and hence opted out of naming the disease so my net savvy teens couldn't google it on their own and start reaching their own conclusions and talking to the younger kids. We intend to share more as/when things progress. I'm still pretty "functional" - you wouldn't guess I have ALS (or anything else) from looking at me. Still walking, working, driving.

Your guess is as good as mine somedays how my husband is feeling. He's pretty stoic anyway - some teary moments early on but then back to business as usual. Partly, this is because we're trying, for the kids sake, not to act like there's some huge medical disaster going on. This definitely has pros and cons. He's mostly focused on getting our financial affairs better situated to deal with upcoming expenses and on figuring how to make our raised ranch house handicapped accessible. Right now he's up in the Adirondack's hunting - needed a break.

My mom is 70 and lives 6 hours away. She came to visit and we had a good cry. We talk weekly on the phone mostly because she needs to, as she says, "just hear my voice". My brother who is a recovering alcoholic went and relapsed when told him my news so I guess I won't be looking to him for loads of support. My husband's family is local and providing the most support - they are a terrific bunch.

There can't possibly be one right way to handle this stuff. I guess we all have to manage our circumstances as we feel best, probably expect to make mistakes then fix them and forgive ourselves.

Have a good night.

Liz
 
Status
Not open for further replies.
Top