Old 09-03-2017, 11:44 PM #1 (permalink)
Member
 
Join Date: 2016
City: Sydney
State: NSW
Country: AUS
Diagnosed: 10/2016
Interest: I am a family member of someone with ALS/MND.
Posts: 179
AKNate is on a very distinguished roadAKNate is on a very distinguished road
AKNate AKNate is offline
Member
Join Date: 2016
City: Sydney
State: NSW
Country: AUS
Diagnosed: 10/2016
Interest: I am a family member of someone with ALS/MND.
Posts: 179
AKNate is on a very distinguished roadAKNate is on a very distinguished road
Default Upset Rant

Hi All,

I'm having a really down day and need some help... and probably hugs.. i don't know.

Here's a bit about us: My husband had his first symptoms 5 years ago in his calf muscles. Since then it pretty much stayed where it started, calf muscles. His toes are slightly affected, his knees a little bit but that's kinda it. He can still walk, stairs are hard but he can do it with a rail. His ankle strength tests were consistent across all the years.

Almost a year ago we got the diagnosis via genetic testing that he is SOD1... there is no way of escaping a genetic test. It's real. The doctors said he should progress at the speed he was previously progressing.

Straight after diagnosis he noticed his thumb was acting up. A few months later his pointer fingers became weak and now his pinky.

He has been on medicine since the diagnosis and even started Edaravone. I'm just so angry that this stupid disease is progressing in a manner we didn't expect. I didn't think his next progression would be in his hands, i didn't think his next progression, given we are using medicine now, would even be for a few years. I'm wrong. And i am SO sad. I don't know what to do with my head space.

I don't know how i can live without my husband. I know i can be strong for him during all of this but it is going to BREAK me inside.

People are telling me to go speak to a councilor... I don't want to. How can they help me? Will they offer a cure? Will they offer me hope? Will they give me happiness? I know all the tricks to get through today - live in the now, focus on what we have now, don't future grieve etc etc etc... I don't need another lesson in that. What we all need is a cure.

Thanks for reading my rant...
AKNate is offline  
Thanks from
Jocalyn8 (10-09-2017)
Old 09-03-2017, 11:48 PM #2 (permalink)
affected's Avatar
Extremely Helpful Member
 
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 10,957
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
affected affected is offline
Extremely Helpful Member
affected's Avatar
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 10,957
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
Default Re: Upset Rant

CARERS NSW paid for me to see a counsellor at Interrelate (yep I'm in NSW too), and Interrelate have funding for carers too so I would used one lot from Carers NSW then Interrelate and kept switching after each lot was used up.

The first session he said to me - well I can't fix any of this, but I do know how to walk the journey with a person. That was a true blessing, it became important for me to have that one hour every few weeks where I could focus on how to get ME through.

Antidepressants were an important assistance too.

I don't know how we get through, but it was big enough that I've hung about to help xx
affected is offline  
The Following 4 Users Say Thank You to affected For This Useful Post:
AKNate (09-03-2017), Buckhorn (09-27-2017), JimInVA (09-04-2017), Narrowminded (09-20-2017)
Old 09-04-2017, 07:51 AM #3 (permalink)
Very Helpful Member
 
Join Date: 2016
City: Cleveland
State: Oklahoma
Country: US
Diagnosed: 10/2015
Interest: I lost a loved one to ALS/MND.
Posts: 1,419
soonerwife has much to be proud ofsoonerwife has much to be proud ofsoonerwife has much to be proud ofsoonerwife has much to be proud ofsoonerwife has much to be proud ofsoonerwife has much to be proud ofsoonerwife has much to be proud ofsoonerwife has much to be proud of
soonerwife soonerwife is offline
Very Helpful Member
Join Date: 2016
City: Cleveland
State: Oklahoma
Country: US
Diagnosed: 10/2015
Interest: I lost a loved one to ALS/MND.
Posts: 1,419
soonerwife has much to be proud ofsoonerwife has much to be proud ofsoonerwife has much to be proud ofsoonerwife has much to be proud ofsoonerwife has much to be proud ofsoonerwife has much to be proud ofsoonerwife has much to be proud ofsoonerwife has much to be proud of
Default Re: Upset Rant

I'm sorry you are going through this. I am sorry we all are. UGH! I get it. I agree we need a cure. I am sending HUGS! Big HUGS! We are right here with you.
soonerwife is offline  
Thanks from
AKNate (09-04-2017)
Old 09-04-2017, 08:00 AM #4 (permalink)
Very Helpful Member
 
Join Date: 2016
City: Pittsburgh
State: PA
Country: US
Diagnosed: 07/2007
Interest: I am a caregiver for someone with ALS/MND.
Posts: 1,883
Narrowminded has a brilliant futureNarrowminded has a brilliant futureNarrowminded has a brilliant futureNarrowminded has a brilliant futureNarrowminded has a brilliant futureNarrowminded has a brilliant futureNarrowminded has a brilliant futureNarrowminded has a brilliant futureNarrowminded has a brilliant futureNarrowminded has a brilliant futureNarrowminded has a brilliant future
Narrowminded Narrowminded is offline
Very Helpful Member
Join Date: 2016
City: Pittsburgh
State: PA
Country: US
Diagnosed: 07/2007
Interest: I am a caregiver for someone with ALS/MND.
Posts: 1,883
Narrowminded has a brilliant futureNarrowminded has a brilliant futureNarrowminded has a brilliant futureNarrowminded has a brilliant futureNarrowminded has a brilliant futureNarrowminded has a brilliant futureNarrowminded has a brilliant futureNarrowminded has a brilliant futureNarrowminded has a brilliant futureNarrowminded has a brilliant futureNarrowminded has a brilliant future
Default Re: Upset Rant

AKNate - first and foremost, huge hugs. I've been at this 13 years from onset of DH's first symptoms. I finally started seeing a counsellor this year and should have done it a long time ago. I also used Celexa for a while, another anti depressant. These things can help. No they can't cure anything, but they can help you cope - seriously. This place is also huge and really got me started on my healing myself journey.

I will say that working with a counsellor can be difficult at times. Esp for me because I have boxed so much up just to get through the day. We are starting to open that box and explore my feelings. That's hard, however it must be done if i'm going to survive this. My DH, Brian chose to vent. He's been on the vent for 7 years now. Due to the vent, his timeline is anyones guess. We've been through 4x of thinking this was it, the most recent in April of this year. However, he plugs along and so do I.

I will say when it's terribly hard, just look at making it through the next minute or next hour and before you know it, it's the next day and you did it.

Hugs,

Sue
Narrowminded is offline  
Thanks from
AKNate (09-04-2017)
Old 09-04-2017, 08:20 AM #5 (permalink)
Member
 
Join Date: 2016
City: Wolfeboro
State: NH
Country: US
Diagnosed: 12/2015
Interest: I lost a loved one to ALS/MND.
Posts: 294
Jlynn is a jewel in the roughJlynn is a jewel in the roughJlynn is a jewel in the roughJlynn is a jewel in the rough
Jlynn Jlynn is offline
Member
Join Date: 2016
City: Wolfeboro
State: NH
Country: US
Diagnosed: 12/2015
Interest: I lost a loved one to ALS/MND.
Posts: 294
Jlynn is a jewel in the roughJlynn is a jewel in the roughJlynn is a jewel in the roughJlynn is a jewel in the rough
Default Re: Upset Rant

AKnate...we all feel your pain. I'm sending you a huge hug and hope that you'll send one back in return. I myself am sitting outside on a beautiful morning looking at the sky and crying my ever living heart out. Watching my brother suffer with this disease hurts my heart more than anything ever has. He's not in pain but he's not really living. He said yesterday that he "didn't know how to call it quits but he's ready to die". What the heck do you say to that? Keep coming here when you can. It helps. I've been thinking about counseling too. I'll try anything to help lessen this immense, intense sadness. Hugs.
Jlynn is offline  
Thanks from
AKNate (09-04-2017)
Old 09-04-2017, 02:08 PM #6 (permalink)
affected's Avatar
Extremely Helpful Member
 
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 10,957
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
affected affected is offline
Extremely Helpful Member
affected's Avatar
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 10,957
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
Default Re: Upset Rant

Jlynn maybe talk to your brothers palliative doctor, they can help him be more comfortable. It's really very tough xxx
affected is offline  
Old 09-04-2017, 02:20 PM #7 (permalink)
lgelb's Avatar
Extremely Helpful Member

Forum Moderator
 
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 6,299
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
♥ lgelb lgelb is offline
Extremely Helpful Member

Forum Moderator

lgelb's Avatar
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 6,299
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
Default Re: Upset Rant

AK, it won't console you, but as perspective, ~80% of PALS are dead five years in. Your husband is fortunate as these things go. I'm sorry for the reality that we have no medicines that will actually stop progression, i.e. are a cure. As yet, anything we do is only slowing it down. Nor do we have a reliable way to say when, how and where progression will occur next.

As for counseling, you could try it once, see if you like it. You're right that it doesn't offer a cure, for either MND or grief, but it helps some people. But you don't have to try anything you don't want to.

Best,
Laurie
lgelb is offline  
Thanks from
AKNate (09-04-2017)
Old 09-04-2017, 08:02 PM #8 (permalink)
gooseberry's Avatar
Extremely Helpful Member
 
Join Date: 2014
City: Pit of hot
State: FL
Country: US
Interest: I lost a loved one to ALS/MND.
Posts: 3,450
gooseberry is a splendid one to beholdgooseberry is a splendid one to beholdgooseberry is a splendid one to beholdgooseberry is a splendid one to beholdgooseberry is a splendid one to beholdgooseberry is a splendid one to beholdgooseberry is a splendid one to behold
gooseberry gooseberry is offline
Extremely Helpful Member
gooseberry's Avatar
Join Date: 2014
City: Pit of hot
State: FL
Country: US
Interest: I lost a loved one to ALS/MND.
Posts: 3,450
gooseberry is a splendid one to beholdgooseberry is a splendid one to beholdgooseberry is a splendid one to beholdgooseberry is a splendid one to beholdgooseberry is a splendid one to beholdgooseberry is a splendid one to beholdgooseberry is a splendid one to behold
Default Re: Upset Rant

Not to push the counselling.....I had a good talk with a friend this weekend. It was an open, heart wrenching kind of discussion that left me drained but feeling better about so much.

I am thinking about counselling for just me. It is really hard to work thru all the emotions, feelings of anger, loss, determination, and sadness. Cou selling can really help
gooseberry is offline  
Thanks from
AKNate (09-04-2017)
Old 09-04-2017, 09:24 PM #9 (permalink)
Member
 
Join Date: 2016
City: Sydney
State: NSW
Country: AUS
Diagnosed: 10/2016
Interest: I am a family member of someone with ALS/MND.
Posts: 179
AKNate is on a very distinguished roadAKNate is on a very distinguished road
AKNate AKNate is offline
Member
Join Date: 2016
City: Sydney
State: NSW
Country: AUS
Diagnosed: 10/2016
Interest: I am a family member of someone with ALS/MND.
Posts: 179
AKNate is on a very distinguished roadAKNate is on a very distinguished road
Default Re: Upset Rant

Thanks everyone for listening to me, taking the time to reply and taking the time to send positive vibes/hugs. I've been one time to see someone and it was good. I cried and said things out loud that i haven't said before. I felt better in that moment i guess... i probably would need to stick it out a bit longer to see results. I went to see an accupuncturist as well, after two sessions he also told me to see a counselor... It must be more obvious how deeply sad i am when i open up that people freak out.

@Jlynn - my heart breaks for you. I've actually said this before, my heart will forever be broken for myself and for everyone. I'm so sorry and of course will send you a million hugs back. I know it won't take the pain away but sometimes it helps.. I don't know how to answer those kind of questions either. I just keep saying "i'm sorry"... My hubby only said something like that once so far... I don't know what i replied then, i think i just mostly listened in shock. I keep repeating "i'm sorry" when he complains about weakness or that the cannula hurts... i don't know what else to say!

@Narrowminded wow - 13 years! I'm happy the counselor is helping you... Thanks for sharing your story with me and your words of advice too. That's how i need to take things, step by step...
AKNate is offline  
Thanks from
Narrowminded (09-05-2017)
Old 09-19-2017, 09:14 PM #10 (permalink)
New Member (Say Hi)
 
Join Date: 2016
City: Sydney
State: NSW
Country: Aus
Diagnosed: 10/2015
Interest: I am a family member of someone with ALS/MND.
Posts: 9
RSV Aus is on a distinguished road
RSV Aus RSV Aus is offline
New Member (Say Hi)
Join Date: 2016
City: Sydney
State: NSW
Country: Aus
Diagnosed: 10/2015
Interest: I am a family member of someone with ALS/MND.
Posts: 9
RSV Aus is on a distinguished road
Default Re: Upset Rant

Hi AKNate, fellow Sydneysider! I know this is a bit delayed (just joined the forum) but I can completely relate to how you're feeling! My dad was diagnosed 2 years ago at the age of 57. It started with weakness in his R hand and it stayed that way for a good year or so. Then within a matter of weeks to months his left arm, legs, speech and swallowing were affected. Now he's in a wheelchair and needs a hoist for transfers. It feels like it's progressing faster and faster with time and there's nothing we can do about it! I feel your pain and understand how hard it is to watch a loved one deteriorate in this way. Not to mention thinking about how we'll cope without them after... you know.

Thinking about you and sending you lots of good wishes. Please keep ranting! It's a great way to let out your thoughts and stay sane. And definitely a good idea to keep seeing your counsellor if you're finding it helpful. Btw MND NSW holds regular support groups in different parts of Sydney - do you attend those in your area?

On a side note, your husband has started Edaravone? That's not available here in Aus is it? Did you travel to the US or get it sent over? I'd be really interested to know how he's finding it!
RSV Aus is offline  
Thanks from
AKNate (09-25-2017)
Old 09-25-2017, 11:08 PM #11 (permalink)
Member
 
Join Date: 2016
City: Sydney
State: NSW
Country: AUS
Diagnosed: 10/2016
Interest: I am a family member of someone with ALS/MND.
Posts: 179
AKNate is on a very distinguished roadAKNate is on a very distinguished road
AKNate AKNate is offline
Member
Join Date: 2016
City: Sydney
State: NSW
Country: AUS
Diagnosed: 10/2016
Interest: I am a family member of someone with ALS/MND.
Posts: 179
AKNate is on a very distinguished roadAKNate is on a very distinguished road
Default Re: Upset Rant

Hey RSV.

Thanks for the support. No i don't attend any of those meetings yet... I probably should.

Yes, my husband started infusions in Feb this year We're going back to Japan soon for more medicine. We didn't get it from the US.

No it's not available here yet but i think we should rally to get the ball rolling faster. They aren't making any progress and seem to be reliant on people like me to push the boundaries! Let's get together and start a movement!!!

Last edited by Nikki J : 10-13-2017 at 07:00 AM
AKNate is offline  
Old 09-26-2017, 09:25 AM #12 (permalink)
Member
 
Join Date: 2015
City: New York
State: NY
Country: US
Diagnosed: 05/2015
Interest: I lost a loved one to ALS/MND.
Posts: 209
Manhattanite is just really niceManhattanite is just really niceManhattanite is just really niceManhattanite is just really nice
Manhattanite Manhattanite is offline
Member
Join Date: 2015
City: New York
State: NY
Country: US
Diagnosed: 05/2015
Interest: I lost a loved one to ALS/MND.
Posts: 209
Manhattanite is just really niceManhattanite is just really niceManhattanite is just really niceManhattanite is just really nice
Default Re: Upset Rant

Hi AKnate, I don't want to sugarcoat it, but yes, this could break you and it could be a horrendous experience. I know because I am broken and traumatized after the loss of my PALS. Perhaps establishing a relationship with a counselor right now is a good idea, so that you will already have worked through some issues when the time comes to say goodbye to your PALS.

I haven't used counseling yet - I did have therapy when I was in my 30s and it is something I don't feel like repeating, so I have looked for other alternatives to help me such as exercise, friends, self care, podcasts, etc. I wish you good luck and strength through this process!
Manhattanite is offline  
Thanks from
AKNate (09-26-2017)
Old 09-27-2017, 02:53 PM #13 (permalink)
affected's Avatar
Extremely Helpful Member
 
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 10,957
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
affected affected is offline
Extremely Helpful Member
affected's Avatar
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 10,957
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
Default Re: Upset Rant

On the note of counselling, this applies to AKNate - Carers NSW offer funding for 6 counselling sessions. I went with Interrelate, and as it happens they also have funding for carers. They can do 6 funded sessions as well. So I did 6 sessions under Carers NSW funding, then 6 under Interrelate funding, then back to Carers NSW for funding again as I think they can only fund once in 12 months so between the two I was always covered.

Worth looking into.
affected is offline  
Thanks from
AKNate (09-27-2017)
Old 09-27-2017, 03:09 PM #14 (permalink)
Atsugi's Avatar
Extremely Helpful Member
Forum Moderator
 
Join Date: 2011
City: Orlando
State: Florida
Country: US
Diagnosed: 12/2010
Interest: I lost a loved one to ALS/MND.
Posts: 5,103
Atsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond repute
♥ Atsugi Atsugi is offline
Extremely Helpful Member
Forum Moderator

Atsugi's Avatar
Join Date: 2011
City: Orlando
State: Florida
Country: US
Diagnosed: 12/2010
Interest: I lost a loved one to ALS/MND.
Posts: 5,103
Atsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond repute
Default Re: Upset Rant

I visited a half dozen head shrinkers before finding one I liked. The sessions are simple. He asks me how the past month went, I tell him that I had no nightmares, and then we chat easily about his Army service or my Navy service and have a good time for the rest of the hour. Long drive, but keeps me sane. I'm sure that he is analyzing me quietly, but it doesn't seem like it.

Here's a lesson called The Stockdale Paradox:

James Stockdale was one of the first pilots captured by the North Vietnamese, so he spent many years being tortured as a POW. He said that the optimists had it worse because they were always expecting things to get better but things never got better--that destroyed them emotionally and sometimes it killed them. But Stockdale said we should face the real reality of our situation if we want to survive the tough times mentally.
Atsugi is offline  
The Following 3 Users Say Thank You to Atsugi For This Useful Post:
AKNate (09-27-2017), Buckhorn (09-27-2017), Jocalyn8 (09-27-2017)
Old 09-27-2017, 09:00 PM #15 (permalink)
Member
 
Join Date: 2016
City: Sydney
State: NSW
Country: AUS
Diagnosed: 10/2016
Interest: I am a family member of someone with ALS/MND.
Posts: 179
AKNate is on a very distinguished roadAKNate is on a very distinguished road
AKNate AKNate is offline
Member
Join Date: 2016
City: Sydney
State: NSW
Country: AUS
Diagnosed: 10/2016
Interest: I am a family member of someone with ALS/MND.
Posts: 179
AKNate is on a very distinguished roadAKNate is on a very distinguished road
Default Re: Upset Rant

Thanks Kat, i'll look into that.

Thanks Mike - that lesson rings true to me. I am an optimist. But then i wonder if i constantly thought things will get worse, I will lose hope and be upset even more often... I def don't sugar coat the reality of what we're going through, i just try not dwell ALL the time on the crap situation we're in. I try have a positive outlook except sometimes that is super hard...

Thanks nice you found someone who you felt comfortable with, that is key.
AKNate is offline  
Closed Thread

Tags
angry, ankle, cure, diagnosis, edaravone, fingers, genetic, genetic testing, happiness, hope, medicine, muscles, progression, rant, reading, sad, sod1, stupid, symptoms, testing, tests, thumb, wrong


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off

Similar Threads
Thread Thread Starter Forum Replies Last Post
Upset soccer5678 Do I Have ALS? Is This ALS? 2 12-31-2015 10:29 AM
my dad is always upset dserp General Discussion About ALS/MND 9 02-05-2015 07:22 PM
rant rant grrrrrrrr Anja Rants & Raves 41 06-08-2012 06:45 AM
Upset Pandabear Current Caregivers (CALS) 30 06-05-2012 07:19 PM
Very upset pfowler44 Current Caregivers (CALS) 9 05-30-2007 05:47 PM


All times are GMT -5. The time now is 11:02 AM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016