Beginning diagnostic journey, pretty sure it is ALS, crippled with sadness and fear, general advice please

[Marnes77]

Thanks you everyone. I am finding the limbo unbearable. And I also am pretty sure he has it, the knowledge of which is unbearable. I know I will find the diagnosis unbearable too. Life feels like it is now always going to be unbearable.

I am sorry to be ranting, especially when the diagnosis is unconfirmed. I just don't know what to do with myself. It's symptom of gut-wrenching and sick-making sadness, terror and desperation. Want to crawl out of my own skin.

 

[KimT]

It's okay. You need to vent and that is normal. I went through a similar reaction when I was in the diagnostic process, even before it looked like ALS. I really had nobody to talk with in the earlier days when my local neurologist tried to get me to go to Mayo Clinic and I refused....at least at first. I was still working and trying to ignore everything but I lived alone and my mind would race at night.

I ended up getting something for anxiety and it helped with sleep and with racing thoughts. I'm not saying a happy pill will be a cure all but it sure helps.

I can only give you my perspective as a PALS. I have no CALS. No close relatives. I'm sure some CALS must feel helpless, angry, cheated, and many other emotions besides being broken hearted.

I do know one thing. There is always love beyond any diagnosis. And there is support.

 

[Marnes77]

HI KimT. What a beautifully empathetic response. Thank you, so much. It has given me a sliver of light in the darkest of days. I honestly thought I was going to have a heart attack and/or panic attack earlier with the overwhelming sense of pain and terror. I thought the initial dawning of realisation was bad. But the intensity of pain and terror today is new. I hope it plateaus soon at least. Because this is not sustainable. My little girl doesn't even want to be near me. She is only 11. I am too miserable to be around.

I am so sorry you are facing this journey alone. There is nothing fair about it. Sending you all my support, love and understanding, for what it is worth.

Thank you for your time and input. There is some comfort in it, when I thought there was no comfort to be found.

💔

 

[ReginaS]

Hello Marnes, ALS is a tragedy - it was one for me too. I could not believe it until Tom was diagnosed. I think he was diagnosed early - much less signs yet. It must be extra hard right now with an 11 year old. My daughters were grown... and just out of the house so I could cry all I wanted. At work we get 6 free therapy sessions - she was a good therapist and told me in these 6 sessions among other things I needed to find a therapist for longer term. I did not want to at first but I did and was lucky to find a good one. It really helps to have someone who has time to share this kind of pain with.

I did not take any anti-depressants - not bc I am against them but I had tried several earlier in life and they did not work... so I thought I will only go down that road if nothing else helps. I meditated every evening at 10pm - when all was done and taken care of. That eventually became my place of rest/comfort... slowly. At the very end I could not do that any longer - I was too exhausted. But afterwards I picked it up again.

It took months after the diagnosis until I felt somewhat stable again - though never the same. Some people are adjusting much faster. For me it was a double whammy because my father already hand a neuromuscular disease - for decades - I grew up with it and I had not dealt with that pain... now it was in my face - a variation of a previous lifetime of pain. But somehow over time that awful feeling transformed into peace. I am not religious. It's really possible to do this...one little step at a time. It's not easy - it never will be. We all fall apart - multiple times - over and over again.

 

[Marnes77]

Thank you everyone.

Barely functioning today. Does one hide the struggle from their partner to shield them and not burden them further? He, after all, is the one that potentially has ALS and needs my strength and support. But today I just don't have any strength.

Hard if not impossible to hide this. Can't even get out of bed today.

What a nightmare situation.

 

[Nikki J]

It is ok to share your feelings. Just please let him know ( assuming it is true) that you will be by his side for every step of his journey whatever it may be. Good luck tomorrow. Try to do something special and active today. Try not to brood

 

[Marnes77]

Thank you NikkiJ. Good advice.

 

[MJT]

Marnes- Everyone here has been to the darkest place. The utterly shocking thing is most of us don't stay there. I'll never forget our diagnosis day when a social worker said, "people get used to it." I couldn't believe anyone could be so callous. Now I understand what she meant. We are here for you, sending love.

 

[Marnes77]

Thank you MJT. I have always marvelled at the resilience of humans, and our ability to adapt to and accept the darkest and most difficult of challenges. Often with grace and good humour. I hope I can find that within me. Currently I can't. Hopefully in time, as you say.

He, on the other hand, is handling this so admirably. And I would expect nothing less. He is the love of my life for this kind of dignity, and many other reasons. A rare, special and beautiful soul. And I have kissed enough frogs to know!

Thank you everyone. I will update you all tomorrow. Sending strength, love and gratitude to you all. ❤💔

 

[KimT]

If I had a significant other who was my CALS, I'd really want her/him to be honest and raw with me. If I felt strong, I'd want to support her/him and reassure her/him that we still have each other and we will get through this together. I'd want my CALS to get counseling, massages, and anything else that relieves stress and anxiety.

I'd want my CALS to get all kinds of love and support.

 

[Marnes77]

Thank you KimT. ❤💔

 

[Nikki J]

What happened? I have been thinking of you….

 

[Marnes77]

Hi Nikki J and everyone. I am devastated to say that my beloved partner was diagnosed with ALS yesterday. Even though I knew it was coming, it was still a massive blow. I am just broken.

He is doing remarkably well. As I knew he would, because he is a total legend.

The only light is that the team and support available are amazing. He looks to be slow progressing. We were told that we have time, and that nothing is imminent. They were heartened about his lack of swallowing, breathing and cognitive difficulties. He scored 45 out of 48 on the scale. It's something. I hope he remains slow to progress. But I also know this disease is completely unpredictable.

Thank you everyone for your support so far. I am sure I will continue to draw from it. I may take a break from the internet for a while now though as I process this. I keep googling stories etc. and growing further despondent at what appears to be a complete lack of hope. This disease seems universally merciless.

I just hope I find the strength to be there for him, and our little ones. Currently I feel beaten, and like I will never take any joy in life again.

Sending you all love, support and strength in our shared struggles.

xxx

 

[Nikki J]

I am very sorry. You both need time to adjust but it is somewhat good news about slow progression. With medication support measures and perhaps a trial you may have many happy times ahead. I hope so

 

[lgelb]

Very sorry to hear this news about your partner, Marnes. As Nikki says, the combination of slow progression and improved therapeutics/assistive technology suggests more life ahead than was possible in the past. We will support you however we can.

Best,
Laurie