My introduction to the group

Tony97218

New member
Joined
Aug 13, 2021
Messages
2
Reason
Lost a loved one
Diagnosis
04/2018
Country
US
State
OR
City
Portland
Greetings, My girlfriend/wife was diagnosed with ALS in 2018. I remember the first time we sought for answers. Tripping over door mats and slurred speech. We went to a neurologist and he referred us to another one. We had now landed in an ALS clinic. I told Laurie that she was not cool enough to be like Lou Gehrig. We were told it could be 1 of 20 things. Well, after a month or so we sat in a room and learned that she was cool enough. She had ALS. From that moment, our world changed.
So, I need to fast forward this because I can’t relive the past 3 yrs at this time.
Laurie passed away 7/29/2021
my hope is that in time I will be able to finish this story, I just can’t right now.
someone told me to write down my story and it would make me feel better. Boy were they wrong, I will be back to finish, but not today.
Today,I seek answers. In the end, we spent everything we had on making sure Laurie was comfortable and safe. Has anyone ever gotten a reasonable return on the equipment left behind. I put my career on hold for 3 yrs to are care of her and now the world is a much different place. Kind of scary. I added a pic of her before she took off to Mars. That was her wish

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lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
10,266
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
Hi, Tony, nice to meet you while sorry for your great loss. There's no timetable for writing your entire story here or even in your head. You may never. Writing and remembering works different ways for different people.

Wherever Laurie is in the stars, she has her place by your side your life long.

It is true that many of us put our careers on hold and will not realize much of a return, if any, on the equipment we purchased. Of course, feel free to post any items for sale or donation on the Equipment thread. Your local ALSA chapter or mobility ministry could also be considered, along with your neighbors via social networks.

You're welcome to stop by any time to read or comment. It's only been a couple of weeks, so give yourself time to process and begin the path back to your own journey.

Best,
Laurie
 

Tony97218

New member
Joined
Aug 13, 2021
Messages
2
Reason
Lost a loved one
Diagnosis
04/2018
Country
US
State
OR
City
Portland
I don’t think there is such a thing as “past caregiver". I did not realize until the proverbial rug was pulled out beneath me. I am a mess. I landed in in a house with nowhere to turn without being reminded that it’s over. I wish it was that easy to move on, but it’s not. I’m gonna guess that there is no easy solution and just ride it out. Uhg, the world outside is no better than what I got going on here. At least I’m safe. They say time heals. Thanks, just wanted to chat a bit. It didn’t make me cry and that a positive.
 

Mary2

Active member
Joined
May 1, 2021
Messages
80
Reason
CALS
Diagnosis
04/2021
Country
US
State
GA
Hi Tony, nice to meet you. My sympathy on your loss and all that you and your girlfriend went through. May she be at peace. She was blessed to have you. The world certainly is a mess right now. I hope you are able to take some time for yourself before going back into fray.
 

jonico

Distinguished member
Forum Supporter
Joined
Feb 21, 2017
Messages
151
Reason
Lost a loved one
Diagnosis
12/2014
Country
US
State
NY
City
Central
Hey Tony, I just wanted to check in a say a few things. I'm so sorry you lost Laurie to ALS! It's so recent...still so raw, and I hear it loud and clear in your posts. I, for one, loved how you were able to bring some levity to an extremely tough situation and most challenging time in your life. Laurie was/is clearly very cool, as is evidenced by the fact she has a Martian friend. I can only dream of being that cool, my friend. Plus she had you there caring for her while you blew through your life savings and upended your career. That's pretty cool, in a not very cool way (hard to convey that one properly, but it is something very special that you did). You probably can't imagine it right about now, but it will get easier... and don't be surprised if Laurie checks in on you in intriguing ways from Mars.

Hang in there. Once your head starts to clear, which could take quite some time - so go easy on yourself, I hope you land back on two feet professionally. I'm pulling for you. All the best...Jon
 

Lkaibel

Very helpful member
Forum Supporter
Joined
May 9, 2016
Messages
1,455
Reason
Lost a loved one
Diagnosis
06/2016
Country
US
State
MN
City
Minneapolis
Nice to meet you Tony. Know that there is a very warm, caring community here as you rebuild your life. I am so very sorry for enormous loss, and for all you have seen these past three years. It does not go away, but it gets easier to manage over time.
 

ARCG

Distinguished member
Joined
Oct 12, 2016
Messages
203
Reason
Lost a loved one
Diagnosis
1/2015
Country
US
State
TX
City
Houston
Tony, so sorry to hear about your loss. We understand what you are going through, it is a difficult road and a difficult time in so many ways. I will share something my therapist said to me when I told him I no longer looked forward to anything. He said ‘Look forward to the day you will look forward to something again.’ I couldn’t believe it would ever happen, but last Monday I actually looked forward to something for the first time since since my husband passed away last November. I found myself depressed again over the weekend, but knowing it’s possible to look forward to something again is keeping me going.

We are all pulling for you.

Annie
 

Narrowminded

Extremely helpful member
Joined
Apr 30, 2016
Messages
2,707
Reason
Lost a loved one
Diagnosis
07/2007
Country
US
State
PA
City
Pittsburgh
Nce to meet you Tony. You were an awesome caregiver to Laurie. I know she is smiling at you from Mars. What you did for her was pure love. That kind of love also gives you the kind of pain you now face. The road back is not easy and I won't pretend that it is. It takes time, for some longer than others. One suggestion, is you are not seeing a therapist, I'd try to find one. You can just spend your time crying and they will never judge you. Mine was a tremendous help. I saw him for 2 years after.

And you are welcome here anytime at all. You can just be you. We've all been there and I'm still on the healing side of things. We don't expect you to tell your story. Just know we are here for you.

Hugs
 
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