Slow progressing ALS. Where its led me to.

Dignify

New member
Joined
Sep 19, 2017
Messages
9
Reason
PALS
Diagnosis
09/2017
Country
US
State
OH
City
Marysville
Hello, haven't posted for quite some time. Was diagnosed with slow progressing ALS 2 1/2 years ago, been symptomatic going on 6. Had to quit working in March. Depression destroyed my marriage so now I'm without my best friend, partner and kids. Really just now starting to struggle with the basics, getting dressed, using utensils, etc...but I still manage. I'm an emotional train wreck, I see my kids and when they leave it's the worst pain imaginable. I'm tired of crying myself to sleep every night. I've been trying to find a sense of direction the last 6 months but cant find anything to fill the void I have created by losing my family. I cant afford housing until my disability kicks in October and by then I dont know if its wise to try and go at it alone. I'm not sure what to do now, I'm heartbroken, physically and mentally exhausted but still trying to get on a better path to give me some peace, just can't seem to find it.
 

Clearwater AL

Very helpful member
Joined
Aug 28, 2013
Messages
1,702
Reason
PALS
Diagnosis
12/2016
Country
US
State
NC
City
Central NC
Dignify, I've read over your Threads and replies.

You've had a second opinion, maybe a third and EMGs.

It's not clear who or where your confirmed diagnosis of ALS occurred.
Maybe you could share this so we can be more contributing to
your plight. If you were diagnosed 2 1/2 years ago your disability
benefits should have/could have been established then or shortly
after.

With SSDI a confirmed diagnosis of ALS is granted rather quickly
as compared to other claims.

Your Bio Reason says "Other". ?

Hope you get the help you need.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
8,920
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
He only stopped working in March. No matter how long before that one received a diagnosis the clock only starts once one stops working when ssdi is involved. Approval is usually quick but the benefits have a 5 month wait.

dignify I am sorry. You have plenty of reasons to be sad but it sounds like your depression is not yet adequately treated. Until it is you won’t find that path of peace no matter how hard you try.

Please insist that your doctor keep working with you. are you getting counseling and meds?

your clinic and or your alsa should have a social worker who can advise on housing
 

blitzc

Distinguished member
Joined
Apr 20, 2018
Messages
352
Reason
PALS
Diagnosis
01/2018
Country
US
State
OH
City
Massillon
Sorry you are here but this is the place for assistance and fellow PALS.
Link to Central Ohio ALS association - About Our ALS Chapter
 

Dignify

New member
Joined
Sep 19, 2017
Messages
9
Reason
PALS
Diagnosis
09/2017
Country
US
State
OH
City
Marysville
My diagnoses came from Ohio state wexner medical center. The atrophy wasnt that noticeable early on just mild weakness but was always accompanied by fasciculations and spasms, after about a year of visits I got my official diagnoses. My shoulders, arms, hands, chest, back are severely atrophied now. My legs are also beginning to atrophy. My last emg was close to 2 yrs ago and at the time i had 2 fibs which was in my left hand and shoulder(first areas to be affected). My breathing is mildly affected, I had an appointment in march, lost around 10% in all aspects. Have had enough testing done to last a lifetime though, emgs, MRI's, DNA testing and probably 150 vials of blood . Is it possible it's something else? I guess it is. The quest to get my diagnoses was a long process, the first few places I went to I ended up with they couldn't rule it out. I was a strong guy and they couldn't see the clinical weakness. Now, I'm skeletal and the progression has picked up the pace. The fasciculations and spasms are pretty strong except where my muscles are completely atrophied. I dont know, maybe I shouldn't post here because I haven't had another opinion since my diagnosis. There really just doesn't seem to be another answer and I dont think I have it in me to be tested on anymore, I'm exhausted.
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
8,462
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
I don't think Al understood the sequence of events clearly. I have updated your status so as to avoid confusion.

Nikki gives good advice -- and if one doctor is not helpful, please try another, in terms of getting orders for the meds and counseling that can help. It doesn't have to be anyone with the ALS clinic. Sometimes getting a diagnosis and living with it for a while unmasks issues that were already there. And as we have noted before, adjusting to slow progression can be as difficult as fast, especially when you are no longer in your marriage.

If you ask yourself what you would want to accomplish in whatever time is left, if you were not depressed, and what it would take, that can help illuminate your path forward.
 

KarenNWendyn

Forum Supporter
Moderator
Joined
Jul 29, 2017
Messages
3,755
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
City
Southern Oregon
Connecting with a good therapist for counseling, and getting on an antidepressant can give you the strength to get over a very big hump.
I’m glad you found us and I hope you find sources of support.
 

Clearwater AL

Very helpful member
Joined
Aug 28, 2013
Messages
1,702
Reason
PALS
Diagnosis
12/2016
Country
US
State
NC
City
Central NC
I apologize. I forgot about the 5 month waiting period for SSDI.

We have had a lot of conversation about Veterans Benefits recently
and how quickly Veteran Benefits can be granted as they were for me.
I guess I was mistakenly thinking VA.

I hope the very ALS knowledgeable members here can help you,
support your concerns and guide you through the rough situation
you’re in now.

Please stay with the Forum. Again, I apologize.
 

Don

Member
Joined
Dec 24, 2019
Messages
19
Reason
PALS
Diagnosis
11/2017
Country
US
State
MA
City
Northbridge
Hello Dignify, you have surely been through a lot of personal problems and I will keep you in my prayers. I have not been through what you have but I am in an advanced stage of ALS with limited time left. Don't know if you are religious but the Priest at my parish visits me regularly and always makes me feel better. If you are in a clinic they should have social workers to help too. I have found that opening up to people face to face and crying a lot actually helps me get through the days I spend in my PWC. I hope you find something to help and remember God is always there.
 

KimT

Forum Supporter
Extremely helpful member
Joined
Nov 18, 2014
Messages
3,832
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
Hi Dignify,

You have been through so much and I'm so sorry for that. I had a long diagnostic process, too, due to my strength and I've also progressed slowly.

If it were not for the antidepressant, Remeron, I wouldn't get out of bed. That and CBD oil have taken care of the depression and anxiety.

My relatives deserted me after I got my diagnosis. They were always all about the money I made and when I had to quit my job and live on SSDI and disability insurance, I could no longer lavish them with gifts and trips. I have no kids so I can not imagine the hurt you felt when you were left to care for yourself.

I can guarantee if you get counseling and meds you will see things differently. I understand deep, clinical depression where nothing or nobody seems to make sense. I was at a point once, with depression, that I couldn't even open the refrigerator without crying because it took too much effort to even pour milk over cereal. All this was before ALS, when my body was healthy. Remeron pulled me out of that abyss and helped me to deal with ALS.

Do you have friends or work colleagues that can help you navigate life? There is an internet site called Lotsa Helping Hands and friends, colleagues, relatives can sign up to help with things like meals, rides to doctors, tending to chores, etc.

There are solutions but I totally get it if you are depressed. I was at a point that nothing made sense, I couldn't even read.

Stay here and let us help you.
 

Tkthiede

Active member
Joined
Feb 25, 2019
Messages
57
Reason
PALS
Diagnosis
01/2019
Country
US
State
WY
City
Cheyenne
I agree with the others about good counseling or therapy. It has allowed me a sense of freedom from my worries. My husband and I talk but sometimes you just need an impartial party to let go of your fears and sorrows. I started to have panic attacks from breathing difficulties. I had my low dose of antidepressant doubled and between that and therapy, I feel like I can cope. I’m hoping you can find some peace and joy in living soon.
Tammy
 

nona

Distinguished member
Joined
Oct 1, 2018
Messages
334
Reason
PALS
Diagnosis
02/2015
Country
US
State
NH
City
NEW LONDON
@Dignify , I'm sorry I'm late chiming in but there is a lot about your post that struck home and I want to tell you that it will be ok. I am also the slow train. ALS also ended my relationship and left me alone. I still live alone and most of the time I'm glad of it. I don't think that the level of care required for most pALS makes group living preferable. I echo comments above for medication (I have taken Wellbutrin and Lexapro) and counseling, and I also recommend the book When Things Fall Apart, by Pema Chodron.

You are grieving a number of losses. Be kind to yourself. We are here for you.
 

Dignify

New member
Joined
Sep 19, 2017
Messages
9
Reason
PALS
Diagnosis
09/2017
Country
US
State
OH
City
Marysville
Thanks to all of you for your support, it means more than I can put into words. I keep pushing forward the best I can. Trying to be my best even at my worst. Lifes full of struggles and we usually come out the other side stronger from it. Still trying to decipher how to do that. I've tried multiple meds but for whatever reason they had an opposite effect. We push on, it's all we can do. Again,thanks to all of you. Its comforting knowing we are not alone.
 

KimT

Forum Supporter
Extremely helpful member
Joined
Nov 18, 2014
Messages
3,832
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
Dignify, I tried 6 antidepressants before Remeron. The others all made me worse and I couldn't tolerate the side effects. Don't give up.
 

Dignify

New member
Joined
Sep 19, 2017
Messages
9
Reason
PALS
Diagnosis
09/2017
Country
US
State
OH
City
Marysville
So last Thursday my daughter brought our dog (Oliver) to me so I could take him to the vet on Friday. Hadn't seen him in 2 months. We had a wonderful day and he snuggled up to me all night. Well he had a procedure done and I brought him back with me and he ended up dying a few hours later. I held his precious little head as he took his last breath. As hard as it was, I'm glad it was me. He was truly the best dog I've ever met.
 
Top