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Hopeful63

New member
Joined
Jul 21, 2017
Messages
2
Reason
PALS
Diagnosis
03/2017
Country
US
State
Mn
City
Duluth
I have never posted in a forum or participated in one. I am sitting here tonight unable to sleep. In in a state of great sadness and despair. My husband is sleeping and i know i could wake him but he's under such stress and strain of this I don't feel as if I can burden him with this

i was just diagnosed with ALS the end of March. Due to scheduling and less groups in the summer months, I haven't been able to attend a support group yet. I've contacted the ALS society and they've been wonderful so I'll be ready when the August group meets!

I thought fighting and surviving breast cancer was my biggest battle I would face in my life. Little did I know that my leg weakness and stumbling a year later would lead to this diagnosis. It did take three years to come to the diagnosis.

It seems now that I've been diagnosed, the symptoms are progressing faster. I'm so sad and scared. I have two little grandsons who I love with all my heart that I can't bear the fact of leaving them. Going thru cancer and now this I've watched as people have pulled away. I think they don't know what to say or how to act. I feel Like I've been forgotten.

I do have an adapted van that I can drive and for that I am grateful. To go any distance over an hour or so causes fatigue so i usually ask a friend to drive for these outings. I can't stand or walk at all but I do have a power chair. Very few of my friends are comfortable to strap my chair in and then drive. I live in a very rural area so buses or other transportation isn't accessible.

I guess I don't know what I wanted to accomplish by writing this tonight. Maybe it is just a safe way that I can say how I feel. I do feel a bit better and the tears have stopped. I think just putting some of my feelings into words helps
 
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DaChief

Distinguished member
Joined
Dec 6, 2016
Messages
191
Reason
PALS
Diagnosis
12/2016
Country
US
State
Florida
City
West Melbourne
Sorry to have to welcome you here but welcome never the less. This is a great support group and I have learned a lot in my short time here. I am glad you decided to join us.

Regards,
Bruce
 

KW1234

Distinguished member
Joined
Sep 28, 2016
Messages
269
Reason
PALS
Diagnosis
10/2016
Country
US
State
OR
City
Hillsboro
Welcome Hopeful. Check out the stickies in the newly diagnosed section. I found a lot of helpful information there when I was disgnosed last fall. There are many helpful people here who readily answer questions you might have.
 

Firefighter58

Senior member
Joined
Jun 21, 2016
Messages
552
Reason
PALS
Diagnosis
05/2014
Country
CA
State
ON
City
Oakville
Hello Hopeful, welcome aboard the good ship Lollypop where all your thoughts and concern are very important to us. Ask anything you want and feel free to add your voice to any thing being said, we all want to hear from and about you.
Al
 

soonerwife

Very helpful member
Joined
Mar 16, 2016
Messages
1,564
Reason
Lost a loved one
Diagnosis
10/2015
Country
US
State
OK
City
Cleveland
Welcome Hopeful! You have found a great place for information and support. Everyone here understands what you are going through. I am so sorry to hear about your dx.
 

[email protected]

Distinguished member
Joined
Jan 3, 2016
Messages
220
Reason
PALS
Diagnosis
11/2015
Country
US
State
Iowa
City
Iowa City
Sorry you've had to join us. You'll find lots of supportive people and helpful information here. I also live out in the country and that can complicate things.

Ed
 

Angiegal

Distinguished member
Joined
Feb 15, 2017
Messages
301
Reason
PALS
Diagnosis
09/2015
Country
CA
State
Ontario
City
Kitchener
Hi Hopeful.
Welcome aboard. You've found an amazing group of supporters here!

Angie
 

WendyWooG

Senior member
Joined
Jan 10, 2016
Messages
518
Reason
PALS
Diagnosis
07/2016
Country
Uk
State
Hertfordshire
City
Stevenage
Hello hopeful and welcome
Sending big hugs

Wendy
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
8,070
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
Hopeful,
A regretful welcome to you.

It's true, some will forget you, but others will step up, especially after they have processed and if you and your husband stay open to that. Be with your grandsons and do whatever else makes you happy to the outer limit of your abilities. Maybe you can hire a student, like a neighbor or friend's kid, to drive/accompany you if need be.

As to how you feel and act, you're still you, and you're the one who knows that most of all. Come here and vent/question any time -- what we're here for.

Best,
Laurie
 

KimT

Forum Supporter
Extremely helpful member
Joined
Nov 18, 2014
Messages
3,635
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
Hi Hopeful,
I'm so sorry to have to welcome you here. I'm glad to hear you have a loving family. People will come and people will go. I learned this the hard way. Nobody in my family could "deal" with it. A few trustworthy people who will stay is worth dozens of superficial "friends" who won't.
 

NothingButLove

Distinguished member
Joined
Dec 25, 2016
Messages
102
Reason
Lost a loved one
Diagnosis
11/2016
Country
US
State
CA
City
Anaheim
I do feel a bit better and the tears have stopped. I think just putting some of my feelings into words helps
That's kind of how I ended my first post on this forum:

"I'm crying as I write this but somehow I always feel a little better after telling this story. I feel drained but better. Merry Christmas and thanks for reading..."

If nothing else, this is a great place to vent and tell people what you're feeling. No one will judge. We're all in the same boat.

Recently, I've gone through the same "disappearing friend" phenomenon. I think you're 100% right. They just don't know what to say.

The first few months after diagnosis are the worst. For this first three months, I couldn't think of anything but ALS. Crying every day... The next three months were filled with depression. Crying every day... I'm not sure what happened, but after a while I just settled down. The first few months are a rough road, no doubt...

Welcome to the forum. I wish nothing but the best for you and your husband.

Rob
 

swalker

Very helpful member
Joined
Dec 11, 2014
Messages
1,143
Reason
DX MND
Diagnosis
07/2014
Country
US
State
CO
City
Vail
I am very sorry to welcome you here, but welcome nonetheless.

If finances permit, you can have a locking mechanism (such as an EZ lock) installed in your van. This will allow you to drive your wheelchair into the lock without your friends having to strap the wheelchair into the van.

My van has the EZ lock, and I would not want to be without it.

Steve
 
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