Recently Diagnosed

[John445]

Newly joined and recently diagnosed with spinal onset ALS. Doctor and team have been incredible so far. Scary times and hope to move through this with as much dignity as possible. John

 

[ShiftKicker]

Hi John-

Very sorry to welcome you here, but glad you found us. When you're ready, feel free to tell us a bit more about yourself. We have a great Resources section to access if you're looking for some answers or need a place to start.

Take care

 

[KevinM]

I’m very sorry for your diagnosis, John. I know the period right after diagnosis is overwhelming, but give you and your family time before trying, like I did, to feel like you must immediately get everything in order.

I join everyone else here, either those of us with the disease or current or former caregivers, in our sympathy for you joining this most unfortunate club. We will help answer your questions to the best of our abilities, so don’t hesitate to ask anything. Wishing you some peace during this incredibly difficult time. Kevin

 

[lgelb]

A regretful welcome to the club that no one wants to join, John. Just to be sure, you obtained this diagnosis through a major neuromuscular center or a second opinion?

We will support you however we can.

Best,
Laurie

 

[lisa g]

Sorry to welcome you here John. You'll have many questions and there are alot of us here that can answer them and help guide you.

 

[KimT]

John, I'm sorry you're here but you will certainly find many of us PALS who understand just what you are going through. When I first came here I had so many questions I didn't know where to start. I found, sometimes, just typing or dictating what I was experiencing or feeling helped a great deal. Also, I found a wealth of information in the search function.

 

[Mary2]

Hi John, Sorry to welcome you. The Forum is a great resource for information and also emotional support. As you say, there are plenty of professional and caring health providers available to help. I am sorry again that you are here.

 

[Firefighter58]

So sorry to welcome you to this cruise, but so be it, nothing we can do about that. This site is here to offer you as much support and education as you deserve and require. You can forget about dignity, there is none with ALS, but hope and acceptance is a way of life now, always looking forward to tomorrow.
Al

 

[John445]

Thank you all for the "welcome." Sorry it took me so long to reply, just figuring things out here. I look forward to good advice and discussion as I move through this thing! John

Hi Shiftkicker:

I am 74 year old, married and Vietnam Vet. My GP notice shaking in my fingers and was right about the cause. My doctors are with North Shore Health. My wife and I attended our first ALS Clinic and met the team of folks who will help us through this. Over the last few weeks I've started PT and OT. Thanks to all who said hello to my first posts. John

 

[Mary2]

I have read on the Forum that the VA benefits for vets with ALS are very good.. My PALS is 77 and has had symptoms for years and was first diagnosed with peripheral neuropathy. ALS can be difficult to diagnose. We try and enjoy each day and are always trying to anticipate what equipment will be needed in the future. Your wife is welcome to post on the caretaker thread. Generally we try to post on or around Weds but anytime is really fine.

 

[Statius@]

I would guess that I've received $500,000 in tangible benefits from the VA over the past 7 years--probably much more. At no cost to me. It's well worth pursuing.

Ed

 

[rmt]

The VA benefits were amazing for my husband and also for me as his caregiver. There is a Caregiver Support program that provides financial support plus respite care and much more. And the benefits for you as a veteran are incredible. Talk to your local PVA and they can help you with the paperwork. It is absolutely worth the effort.

 

[affected]

Welcome John, worst place to be, best people to be here with.

 

[Clearwater AL]

John, I too am a 74 year old Viet Nam Veteran. Work with the PVA. The one here in NC
is above and beyond the call of duty. Hope your state is the same.

 

[John445]

Thanks, still waiting for response from VA from applications form.