Things that you wish you could've experienced

[HelenL]

Sarah, not sure how old you are, or what you can afford to do... I can't afford to go on trips, I'm too busy trying to keep the bills paid. But I still treasure the moments with my kids, my friends, and getting out to do whatever! Many of us here are LIVING with ALS... yes, it will get us in the end unless there's a miracle cure, but choosing to LIVE rather than waiting to die is a total different mindset.

I hope you stay on this forum, if only to brighten your day and to learn from the wisdom of all these great people.

 

[Judith Ann]

I too have done so many things since my diagnosis and plan to always live my life like before only different. I couldn't make my identity ALS. Yes I am someone who has ALS but this isn't who I am. Live your life to the fullest!

Judy

 

[charkayr]

Look ahead of what can still be, I was diasgnosed 10/2010...I cry still sometimes, but I thank God everyday he gives me. Do things you can do now...I will never see Italy..but I can get up tomorrow and do something else..I have traveled by air places, I went to the beach last year in August , they have motorized wheel chairs..that was fun, I could still be at the beach and be in the sun with my family..think of things you can do..and love all those around you. Your legacy isn't going to be where you've been or what you've done...it will be who you are and what you share with others. I have found out that those that love you will go to the ends of this earth to live with you and make you happy, and they too are sad by your situation. Get out Sarah and live the life God has given you, Don't be angry with God or anyone..he didn't will this on you..we are human an vunerable to many things in this life. God Bless

 

[CathyP]

I used to be a glass half empty kind of person. NEVER living within the day. Always planning ahead about tomorrow. Worried about bad stuff that most usually NEVER happened. Since ALS I now LIVE each day. Enjoy each day. Find joy in all the wonderful things that happen in the day. My glass is not only half FULL, it is over flowing!

 

[michelleRN]

It's so easy to let this diagnosis drain any hope for the future right out of you. I was diagnosed at 28 and was in my first semester of grad school for what I considered to be my dream job. I ended up dropping out and felt generally hopeless about doing much of anything that I had in mind for my future. Well, thankfully I let that last only for a few months before I decided to suck it up and push forward. I had my daughter a little over a year from diagnosis, which is something I thought wouldn't be in the cards for me. I'm 3 years from diagnosis and not going anywhere soon, so I re-applied for grad school. I figure I'm not going to let 3 stinking words stand between me and the things I really want in life.

Sure ALS will keep you from some things. I'd really like to learn to kickbox - fat chance on that one! But this disease is really only as limiting as you allow it to be. I always have to remember - I am not ALS, and ALS is not my life.

 

[Poet Chistopher Robin]

The thing I am most grateful to have seen, is to see my kids grown up, it really hurts me to know there are parents dying with this and they are leaving behind young children

You do as much as you can now while you still can my friend

 

[Toto's Dorothy]

Tomorrow is yours for the making.

 

[rcharlton]

being a bridesmaid in someone's wedding

Go to City Hall and ask if you can participate at a wedding. Couples often need witnesses. Maybe not what you envisioned - but who knows - you might enjoy it more - probably a lot less stressful

Fortunately I am a slow progressor but at the time of my diagnosis I did not know this. In the first two years from my diagnosis:

1. I got married
2. Traveled extensively all over the world (accumulated a mountain of debt in the process)
3. Adopted a third rescued beagle. A 10 year dog that wasn't house trained
4. Had a beautiful daughter

Good luck

 

[hn7609]

Wow....what a tough subject. My own personal experience is the reality of knowing that I will never do any of the things again that made my life what it was. I lived for sport. I can no longer play a round of golf, a set of tennis, run a road race, go to the gym, ride my bike, race my motorcycle, & so on. I have enough good memories from these activities to last me the rest of my life but I still have to say that it hurts. The biggest loss is my friends........they were my golf buddies, they were my riding buddies, they were my tennis buddies. I can't play anymore so I have no more buddies. They're off doing their thing, I suppose it goes to show that they were never really my good friends anyway. Presently I still consider myself lucky, using hand controls I can still drive the kids to soccer, volleyball, softball practice & live my sporting life thru them. As a family we can still vacation but it's not the same, we have found that a cruise works best for everybody. The ships are mostly very wheelchair friendly.

You will just have to figure out what you can still do & do it. The things that you can no longer do are gone it is best to forget them and just bask in the happy memories. For me I have lived a full life and I have shortened my bucket list down to just a few items. Pretty much all that is left is to see my children graduate from high school, they're in the 6th & 7th grade now so it will be a long shot but who knows it's possible. You just need to decide what you really want to do and then find a way to do it. I'll be the first to admit that the view from a wheelchair sucks but it does allow me enough freedom to still do most of the things that I want. As long as you're not stuck in a bed 24 hours a day you have options.......sometimes you just can't see them. You wil be amazed at what you can still do.

 

[LabMom]

I have taken a lesson from my beloved dogs. They live in the "now" and they don't worry about yesterday or tomorrow. In the short time I have had to think about my situation I have found that this is the best way for me to live. When I first learned my diagnosis I would see things that reminded me either of things I could no longer do or things I wanted to do but won't ever do now. It made me so sad. On the other hand, if I allow myself to think about what is to come, I am scared, so I quickly take stock of the things good things I have in my life now and the wonderful things I have experienced.

Last year at this time, my daughter and I were planning her dream wedding. We had waited a long time for that experience and it was everything we both wanted it to be. My biggest dissapointment when I learned I had ALS was that I might not ever get to hold a grandchild. Soon after I learned my diagnosis I learned that my son was making me a grandma in June. I will be able to hold a grandchild afterall. My husband and I have a boat and we love to spend our vacations cruising the San Juan and Gulf islands. We haven't figured out yet how to get me in and out of the boat, but we have so many wonderful memories of our trips. In 2007 and 2009 we took our boat from Washington to Glacier Bay in Alaska. We were blessed to have had the vacation time to allow us to do this when we were both able. So many of our friends have to wait for retirement to do something like that. Had we waited, it wouldn't have happened. We will continue to have adventures. I don't know what they will be, but we will.

 

[jdever9]

Labmom I know what you mean the month after I was diagnosed my 2 sisters and I went to Sanibel Is in Florida for a week to just be together as the oldest it was great how my younger sisters took over - cooking, driving, etc and Lying on the beach The one thing I am most thankful for is that they rented a house with a private pool and we stayed home most the time in the pool or on the deck cooking and talking it was great and we are talking about doing it again next year - they said they will get me there by hook or crook. It was nomore expensive than the 3 of us renting a condo. So I am looking forward to that Also in addition to a bucket list, I have started a non-positive bucket list - no more cutting grass in the hot sun - my husband has taken that over and I will add to it as i go along with losing the things that are not important and looking for and doing the things that are good luck to you ( and yes my dog loves me unconditionally each and every day!)

 

[momap53]

LabMom, Checkout Grampal's (AL) home page or message him. He was able to go boating.

 

[notgivnup]

LabMom, I too have gone boating, son picks me up and puts me over the side of boat where I can hang on till he throws my wheelchair over and I sit (with brakes on..lol). And geting out is the same but in reverse. Glad he is strong. We just crossed the channel from Oahu to Kauai in not so good seas, had a blast! There are ways to do almost anything given enough thought.......

 

[LabMom]

Thanks for all the encouragement. We have been plotting ways to get me on the boat but haven't attempted any yet. Now I am more determined then ever to go on a cruise very soon. I'll check out Al's page to see what he did. I know my husband can't lift me over the edge but we've talked about mounting something similar to the pot puller only bigger to swing me over the edge.

Dee

 

[sarahg]

I read through the thread. I apologize for not responding earlier. I was ill for a few weeks. I'm 28 and I really can't afford to go on trips or a lot of things. I had a job that paid well prior to my diagnosis. I currently have a work at home job which helps keep the bills paid and allows me to get some extras here and there.