Newly diagnosed parent with ALS

[agudo]

Hi. My father (68M) was diagnosed with ALS last month. His symptoms first started as a left foot drop in April 2022. The doctors initially didn't suspect anything. But the foot kept getting weaker. By March 2023, his other foot also started having some problems. 3 hospitalizations and tonnes of tests later, he is finally diagnosed with ALS. (He had some GAD antibodies so hospitals checked the entire body for cancers and numerous other syndromes). As of now both legs are severely compromised and can barely walk with support to the washroom. The voice has become hoarse. The EMG shows bulbar, cervical, and lumbosacral involvement.

He is currently on Riluzole 50mg daily and Edaravone. Unfortunately, I am from India and Relyvrio is not available here. He is also on 30mg methylcobalamin(B12) daily as the doctor suggested that some studies have shown positive results due to the high dose of it.

My biggest concern right now is the speed of progression. Within 17 months, he has gone from a fully functioning adult to both legs barely functioning. The voice has changed over last couple of months. Physical examination and EMG show hands are also getting weaker. I am scared about what's about to come.

I am 28M and taking care of him along with my mother who herself has her fair share of health problems. We don't have any dedicated ALS clinics as I have read US and Canada have. So I am taking the internet's help in navigating this. After the diagnosis, I felt so alone because you always hear about cancer, etc. but never about this. And the realization that there is nothing you can do to stop it is so tough. After finding this community, I felt a bit less alone. Realizing that there are people all across the world going through the same things brings a little comfort. So I thought to share our story with you all.

Feel free to ask any questions about the symptoms/differential diagnosis etc. Also do share any resources that you think might help.

 

[Nikki J]

I am sorry It sounds like you have a good neurologist. You might see if tudca is available to you. It is one of the ingredients inrelyvrio and is also being trialed separately in Europe. I can’t take relyvrio but do take tudca and think maybe it helps somewhat. It is not prescription here and here and in europe it is available on amazon

Avoiding falls is vital. Also conserving energy. Does he have a wheelchair? A walker? What is he using and be prepared for the next step.

Record his voice even if he doesn’t want to voice bank. It will mean a lot to you and your mother

Look into communication devices. Does he have a smart phone or tablet? Do you have some financial resources if not to get something?

 

[agudo]

Yes, I was just reading about TUDCA and it is available here. I'll discuss it with the doctor during our next consult.

He was using a walker till now but last Friday we finally got him a wheelchair. It was very difficult for him to accept it.

Recording voice is good advice. I didn't think of it. I'll try to get as much as I can. I'll also look into communication devices.

Thankfully we have financial resources to go through this and medical care is relatively cheaper here.

Thanks and take care.

 

[lgelb]

Hi Agudo, welcome and thank you for being such a help for your dad. It will be easier for him to accept the wheelchair if you help him use it to do things he enjoys, in and out of the home, so you might start making a list.

Based on the weakness of his legs, I would also look into getting a Hoyer-style (floor) lift for transfers, and a hospital bed.

How is his breathing/his eating?

I am not sure what the assistive technology resources are in India, so as Nikki says, let us know any device(s) he uses normally, such as any mobile devices and/or computers, and how he'd like to use them. We are happy to suggest apps/interfaces that might assist.

Best,
Laurie