Whats the point?

[half empty]

On 7/26/10 I received the news that I have ALS, I was told I have 1 -3 years to live, 1-2 years if I am lucky 3 years if I am not. I have done some research and have determined that there is nothing that can be done. So whats the point? My future consists of being a burden and depleting resources in an attempt to extend my life, again whats the point, if the quality of life is gone why try to extend the quanity, it does not make sense to me, if it does to you, please feel free to respond, Thanks:?

 

[sadiemae]

Your quality of life may not be the same, but you can still have quality of life. We go to baseball games, we enjoy the sunsets,we enjoy our family. A DX of ALS is devastating at first, but while ALS is not at this time cureable, it is treatable. Just read some of the many posts of the many people here who have ALS, and you will see that you can be happy and live a full life with ALS.

 

[Lavender Lady]

I was also just diagnosed and i have alot to live for. I have a wonderful husband and three sons and a grandson who i need to be here for. i do not know why this came to me but I do trust that God will bring us through it one day at a time.

Rox

 

[trfogey]

On 7/26/10 I received the news that I have ALS, I was told I have 1 -3 years to live, 1-2 years if I am lucky 3 years if I am not. I have done some research and have determined that there is nothing that can be done. So whats the point? My future consists of being a burden and depleting resources in an attempt to extend my life, again whats the point, if the quality of life is gone why try to extend the quanity, it does not make sense to me, if it does to you, please feel free to respond, Thanks:?

If you really did do some research, you should have found that the 1-3 year prediction that somebody gave you is quite a bit on the pessimistic side. Do some more research and you'll see that lots of folks make it to the five-year mark.

It's way too early in the game to be giving up. Hang around for a while and see how the experienced folks deal with problems before you pull the covers over your head and fade away.

 

[Danijela]

Most seem to be given that gloomy, conservative estimate. We were too. But life went on. We decided to have a child and are now enjoying a company of 7 month old baby, my partner is still working, we are going on holidays, seeing friends...It is tough, it takes some time to adjust, but give it a bit of chance and see how things pan out.

Dani

 

[irismarie]

Everything depends on your home situation. I have said this before. If you are surrounded by loved and loving family and people who are willing to take you out as often as you like, make you comfortable without making you feel a burden or a nuisance, do not mind being woken in the night to turn you over -etc etc - IF you are lucky enough to have this, then life is worth living. BUt there are quite a few not so lucky. I honestly agree with halfempty even tho I am normally in life a 100% optimist. I have friends, nurses, home helps, help from Helpx, all this, but it is not the same as the love of a family. When my children and grandchildren are here, time flies and they all pack in and help me with love. But that lasts usually two or three days and they are gone and I have just each day's deterioration to live with. I do not mope around and I try to share and give as much laughter and pleasure as possible but the underlying truth is that it is too hard to go through without that special love to smooth the way and to make the hardships worth while. And not talking, not eating and drinking, not moving, hurting, not being able to breathe freely - that takes an awful lot of love to counterbalance.
Those of you who know me KNOW that I am not pessimistic not downhearted and the last thing I want to do is depress newcomers BUT I am also realistic. And this is the reality I see. That love around is all important

 

[jemahiser]

your mostly correct. I have been diagnosed 5 yrs ago. If you enjoy being a prisoner in your own body you will just love it. I was too far along before i realized and then couldn't do any thing about it. I have full blown ALS these other people must be progressing much differant. Every person is differant.

 

[sadiemae]

Jema, your statement that you were to far along before you realized it, and they couldn't do anything about it. Even if you had been diagnosed earlier they still couldnt have done anything, so do not beat yourself over that. My husbands onset was Oct 07, and didn't go doctor till Sept 09, when he was DX.

 

[jimth]

I find it interesting that your Dr. would make a prediction, I asked mine when first DXed and he said he could not know. I know some people who have lived for 20 yrs. after being diagnosed. This disease effects everyone differently, some do pass within a few years but other continue living a good life. The news is no doubt depressing at first but soon you realize that there is still a lot to live for. I have found that in many aspects my life has gotten better, I have learned to appreciate the little thing in life and have reconnected with many old friends.

Hang in there and make the most out of the time you have, which hopefully will be many many years.

Jim

 

[Al]

I was diagnosed in oct. 03 and probably had it a year or more before that. Statistics can be wrong.

AL.

 

[joelc]

A lot depends on your attitude. If you are convinced you can't have any quality of life you will be miserable. But if you are open to looking for positive things and overlook the negative there is quality of life. I enjoy each day, our children, our grandchildren, people on this forum, etc. Even though I am totally immobile I can enjoy a lot of things. As far as having family to look after you, I have found it is much better to get a stranger. We are in the process of replacing family with outside caregivers and that is significantly better. Don't think if you don't have family to look after you you can't carry on. You can!

You can read all about how we cope with ALS on our website at Living and Surving with ALS

I hope you get to a point you can start enjoying you life. Don't believe the statistics, I was given 2 years but it has now been 5 and I don't plan on giving up anytime soon.

 

[handinhand]

Hi half empty,that means you are half full also? I know that attitude has a lot to do with each day I get out of bed. Somedays it is a wonderful day and I enjoy all that is around me. I enjoy all that I can still do...then the other days sneak in and I dwell on all the things I have lost,which is a lot.... That is just how it is for me. Good days and terrible ones..thank goodness I just have to live one day at a time...... The very first days after you find out that you have ALS are the worst you will go through... Try and think of all the things you want to do and say and write before you can't.... Live everyday the best you can...come here often . We truly know how you feel and people on here the forum can help you get through the bad days, hugs to you, Linda

 

[TedH5]

Your life is not over! I too was recently diagnosed and am taking the approach that it is not the years in your life that matter but the life in your years! Your life is NOT over! Everyone's life from the day thay are born is terminal. We have ALS but we could step off a curb tomorrow and be hit by a bus or have a heart attack. I am not trying to be morbid just trying to point out that no one controls how long their life is only God does. I am sure there are people who love you and care about you, that alone makes life worth living! We will all die one day but I will be darned if I am going to die more then once by ceasing to live life to it's fullest now just because I received this diagnosis. Please keep your head up and enjoy everyday you have. I know it is easier said then done but you can do it. Stay strong and remember the people on the forum are here for you. We are all human so ther will be tough days and that is OK, reach out to us and feel free to lean on us for support! I will include you in my prayers!

 

[kinma]

i have bad days ie trapped and a burden
bt visiting with my 12 and 15 yr dds never as much as i want
and friends and family and a 2 yr old
make the glass 1/2 full
kris n

 

[Katie C]

Glen was diagnosed July of 2009, though it took us several years to GET that diagnosis. Even though his disease was advanced and he had the added complication of FTD dementia, we made the best of what time he had left. We took a family vacation to Disneyland. We went to college basketball games. We went to Warriors and Forty-Niner games (and took advantage of the handicapped parking spaces!) We made lots of wonderful memories. Now that he's gone, I treasure those memories like little gold nuggets. My brother on the other hand died suddenly.. in his sleep.. several months ago. His family didn't get to say good bye. He didn't get to make those memories. I wouldn't trade. Please.. once you are past the shock of diagnosis.. try to focus on doing what you can do while you can do it and make the most of the time you have with your family.