Have amyotrophic lateral sclerosis (ALS): Want to connect with others

Considering the stairway problem, perhaps a chair that is on a motorized track, going all the way up the stairs, would be a possibility. My sister had that installed, on a very steep stairway, of 60 steps. It worked well for her, for many years, with a minimum of maintenance! She passed away a few years ago, and the people who bought her house, kept the stairs in good operating order!

I live in Australia and was diagnosed with ALS (We call it Motor Neurone Disease) two months ago, but looking back I was symptomatic from mid-2024. I now have a multi-disciplanary team looking after me, but I would like to make contact with others who have Progressive Bulbular Disease to find out how others have coped with day-to-day life, and to offer mutual support.
Dear @barpit, I hope things are better for you now. We always fear the unknown. I hope you have now connected
with a good treatment team and are drawing on your courage to look forward to the future, whatever that may bring.

Follow these two on Instagram. Brook is only 36, Brooke Eby - limpbroozkit. And Erin Taylor - unsteadyandready (Erin was dxed at 23.). I’m sorry you have ALS, I cannot believe there isn’t a cure for this by now, but prayers for all patients and reasearchers that God gives them the tools to solve this disease.

I too have been diagnosed with ALS. I too am depressed and having anxiety attacks for the first time in my life. What can be done?

@barbarapolo, it's not uncommon to deal with depression and/or anxiety when dealing with a life-changing diagnosis. Your doctor can make a referral to a therapist to talk about how to manage the emotional and mental aspects of ALS. There are coping mechanisms that can help.

Have you discussed the anxiety attacks and depression with your doctor?

@colleenyoung I mentioned them. She gave me a script for an antidepressant that will increase my appetite and help me sleep. It made me so unbearably tired that I stopped them and told but she told me to keep taking them. So I started again. But I don’t want to feel MoRE miserable than I was.

@ellu Receiving a diagnosis of ALS is not easy. I had some symptoms at least 6 months before I was positively diagnosed in mid-2025. I am a 72 year-old widow, still living independently and actively involved in community affairs. I figure I can stay at home feeling sorry for myself, or I can do what I can to remain connected to family, friends and community and make the latter year(s) of my life as rich as possible. My symptoms started with numbness/pins-and-needles in one leg, and have progressed to swallowing issues and weakness in my left hand.
I am on NIV ventilation overnight, which has helped enormously with my energy levels. You and I, all of us in fact, can only take one day at a time. We can not know what is around the corner, any of us. In Australia we have a very active and supportive MND Association (in Australia ALS is called Motor Neurone Disease), and they have provided me with a lot of support and the opportunity to engage with others and their carers. They have also provided me with equipment and gadgets to help me live as "normal" a life as possible. Of course I have bad days when I feel miserable and think "why me?", but the trick is to remain positive and keep engaging with life and doing the things which you enjoy. Please stay in contact on this site - I would love to be in contact with other people at different stages of their journey. Very best wishes, @ellu

@barbarapolo, can you ask for a referral to a psychiatrist to find an antidepressant that might be right for you? Have you considered talk therapy with a therapist or social worker?

@colleenyoung, I would like to go for talk therapy but where do I begin? No one mentions it.

@barbarapolo, I would start with asking for a referral to a social worker. They may be able to provide the counseling you need or help with finding a therapist that is right for you.