Father newly diagnosed

[Mdang413]

Hi All,

This past Friday, my father was diagnosed with “some form” of ALS by a neuromuscular specialist. He is being sent to an ALS center near him in Potomac, MD, and will get more details on form, prognosis, etc. At this point we know very little, but what we do know - the diagnosis - is obviously very scary. I’m so happy that I found this forum because there is so much information and everyone seems very supportive.

My father noticed that over the last few years, he was dropping heavier objects but didn’t think much of it. He’s gotten much worse in the last year - he can’t even make a fist with his left hand, pretty much can’t use his left hand, he doesn’t have much grip, he seems to be losing muscle mass pretty quickly in his extremities, and his speech is just barely starting to slur. I’m very scared that he’s caught this too late and it’s going to progress quickly. He hasn’t had any back pain at this point but is going for an MRI on Wednesday for his spine.

I hate to be on this forum but am so happy to have found a support group.

 

[lgelb]

Hi, Morristown, sorry to welcome you here. Let us know how we can help.

There is no "catching too late" that makes the disease worse, because the latest rx treatment (Radicava) is most effective in early stages and only came on the market recently. That said, once the diagnosis is confirmed by the ALS center, he may be eligible for clinical trials as well, and there is a time clock on that eligibility.

And if he's had ALS for several years, he's doing pretty well overall (a "slow progressor"), but I'm sorry that he, you and the rest of your family will be facing this.

Best,
Laurie

 

[Mdang413]

Thank you for the kind words, Laurie. That is good to know as far catching it too late - that makes me feel a little better, if that’s possible. I will be sure to come back as questions come up. - Meredith

 

[affected]

Welcome Meredith.

I would say that if he has managed for a few years before diagnosis that is terrific. Once the diagnosis is pronounced you are living with this disease. Before you can have all kinds of hope or just brush things off.

You will find lots of help and support here, it's a great place for information and tips, and just to help get through each day.

 

[Mdang413]

Thanks, Tillie. From the little I’ve seen on here, there really is such great information. The diagnosis has been tough on my whole family. My father doesn’t appear any different to me (yet) so it’s just hard to believe. I don’t live close to him but just want to be there for him.