Things that you wish you could've experienced

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sarahg

New member
Joined
Mar 3, 2012
Messages
6
Reason
PALS
Diagnosis
10/2010
Country
US
State
New Mexico
City
Albuquerque
Hi everyone, I was diagnosed with ALS back in October 2010. I have decided that I don't want to be on a ventilator and that I want to die when things get bad. I'm trying to make the best of the time I have left, but they are things that I haven't and likely won't experience that bother me quite a bit. Some of the things I wish I had experienced are small and I feel stupid for wanting to experience them. I think the fact that I will likely die in a few years is what makes me upset about never going on a lot of trips, being a bridesmaid in someone's wedding, and doing certain things with friends.
 
Why cant you experience things? Since my husbands diagnosed we have traveled across the country to see the Grand Canyon, Hoover dam, and experience Las Vegas. He has gone to Pittsburg to see a Steelers game in Heinz field. We had a 35th anniversary party with wedding cake and everything (we eloped...no wedding cake) We watched my youngest son get married...we are watching our middle son buy his first house. We have not died yet so the experiences arnt over. He was diagnosed in 2010 to. Take it one day at a time. you never know what will happen
 
Business as usual here. I have a 12 year old so each day I wake up I thank God. I am booking 2 vacations this summer.
 
I will miss things that I feel I cannot do anymore, but such is life. It is normal to miss things this disease takes away from us. But I don't want to miss them until they are gone.
I am nervous about going on vacation next week to Disney, but I am excited too. I will make sure to take my valium with me. I will take my walker with me and my communication device and go for it !

I have not decided about venting yet. Probably not, but that may change too
 
Do what you can do NOW. Don't wait just go for it. Take those trips, do the best you can...so you won't have to say "I wished I would have...".
Now is what we all have, enjoy it to the fullest. Don't look back but forward to the joys you can make in your life.

Itbeauti, have fun at disneyland, use a wheelchair, you get on rides first and save so much energy if still trying to walk.
 
I was diagnosed three years ago. My hubby had just retired. We started coming down to Florida for 3 months of winter. We took our boys and their ladies on a cruise to Alaska. My youngest son proposed on the first night. The next day was Mothers Day and I spent it getting pedicures with my daughter in law and the new one to be. Then we met the guys an had bucket of beers and nachos. We have been on three other cruises with friends. I danced with my son at his wedding and now are waiting for his daughter to be born in July. I have been so blessed! I now need to write on a iPad to communicate and can only type with finger. I need to use a walker in the house because my balance is gone. We have received two walkers and both a manual and power chair from our ALS Association's loan closet. I golfed as long as could and still meet with friends for lunch. I tire easily now but live each day to the fullest and try to see all the wonderful things around me. Sure I have struggled with frustration and fear. This journey is the hardest my family has faced. Our faith in God and the amazing love and support of our friends helps us every day.
 
Live, live, live Sarah! You never know how much time you might have!
 
No one is guaranteed tomorrow. This may sound mean but we have handed a time limit that most people don't get. We know that we must live each day and not waste any. Does that make us more aware of our time than other people? I hope so!
 
One thing I learned and am still learning attitude is everything! My mom got diagnosed last Aug. And a week later I found out I was pregnant. My mom's first response was she won't be around to watch him grow up. I have 4 other children and I remember my grandma saying to her after we found out was you will never see your grand kids get married. Alot of things you might or might not get to do takes the breath right out of you. I think the more positive you stay the better you will enjoy what ever life you have left! I'm sorry that you too have this monster of a disease. I could only imagine on how my mom feels each day that she wakes and can't do something. I hate the fact that she can't walk in a store anymore w/out a wheel chair so half the time she is w me she waits in the van and I run in the store. But I have to park the van so she can stare at people coming in and out lol. I know I don't have this disease and watching my mom w it is bad enough and I can't say I know how you feel cause I don't. I know this disease affects everyone differently and people feel differently than others and it affects everyone differently. I know this disease will eventually take my mom and it will dramatically change my family's life but I am trying to live day to day and not think of what is to come. I know God has everyone's day marked and regardless of what you have or not He will take you. HUGS

Jessie
 
*****like****
 
Experience anything and everything you possibly can, Sarah. Even if they're just little things they will create memories for you and your family. So sorry you're going through this. Yasmin.
 
and... welcome to the forum, Sarah. So sorry you have had to come here though. As you have already seen, this forum is the place to go for comfort, advice, laughs, and friendship. Keep reading and learning!
 
You have to live with ALS. I believe it is a choice that we make. (I am a CALS, just to be clear.) But my husband, has chosen to do everything he can while he can. We took trips and focused on making memories for us and for the kids. Of course, it isn't sunshine and roses everyday. But you have to learn to walk through the depression and disappointment and relish everything you still have and can do.
Love and light
Meg
 
Sarah,
Pals live, more than anyone.
We just need to cram it into a shorter time frame.

Live and love. I have never enjoyed life as much as I have since being diagnosed.

Keep doing the things you can do now, and when you can no longer do them, adjust through technology and creativity to find a way to do them still.

You'll find this forum a huge pickup when you'll feeling down, advice when you need it, and a warm shoulder to cry on.

Get out of the house and enjoy that sunshine, not like your freezing your butt off in Canada! :)

Cheers,
Casey
 
I have done more things since diagnosis than before!

Sure it does take more time, and other things might need a little adapting...but now more than ever we are finding ways to scrap together whatever little money we have to go on vacations and just enjoy everyday to the fullest.

There are so many adaptations and accessibility devices out there to help you get where you need to go. :)
 
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