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AKNate

Distinguished member
Joined
Oct 25, 2016
Messages
181
Reason
Loved one DX
Diagnosis
10/2016
Country
AUS
State
NSW
City
Sydney
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... :(
 
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
 
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.
 
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
 
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 maybe talk to your brothers palliative doctor, they can help him be more comfortable. It's really very tough xxx
 
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
 
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
 
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... :(
 
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!
 
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!!!
 
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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!
 
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.
 
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.
 
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.
 
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