New here

[Mike84]

I'm new to this. I am absolutely devastated and so scared. I haven't slept in days. Barely eating. I guess all I'm asking is what happens now? I'm 36, I have 3 kids, I work and live alone. Should I quit my job? Abandon my apartment and move back in with my parents? How do I tell this news to my family and friends, especially my kids? All I want is to see them grow up.

I guess what I'm asking is: is there any positive advice? Any hope? I've been researching online nonstop and the only hope I've found is Nurown, which could still be years away, and we might not have years left.

Any advice is greatly appreciated.

Also wondering realistically when can we expect Nurown? And will insurance cover it if it costs $300,000? I feel pretty bad and weak right now but I can still do everything, my worst symptom is pain. I keep saying to myself if I could just stop this progression now I could live with this. Are there any other promising treatments on the way? Amx0035? What current medication if any would you recommend?

 

[ShiftKicker]

Hi Mike, welcome to the forums. Sorry you find yourself here. Take some time to look around and have a read through the Resources section, there's a lot of great advice there. Particularly the "If you've just been diagnosed" and "Getting a second opinion" threads.

Resources

When you're ready, please feel free to let us know a little more about how you arrived at your diagnosis and I am sure folk will have more advice once we know a bit more about your situation.

Welcome again

 

[Mike84]

Thanks. How is everyone here doing? Is anyone still mobile, still working, active, etc?

 

[Clearwater AL]

Mike, most new PALS share their path to a confirmed diagnosis
of ALS. When it started, what onset, hand, foot, leg, who and
where you received your diagnosis and are you participating in
a ALS Clinic. Are you going to seek a second opinion, again
where? Highly recommended... most of all your age.

As Shiftkicker mentioned... it helps us better reply to your
questions. It is optional but most who have been diagnosed
with this rare disease are willing to tell us their path to a
diagnosis. In your case of only being 36 years old it is even
more rare.

Again, it helps us address your concerns with more directive
help and advice.

 

[lgelb]

Sorry to welcome you here, Mike. Our #1 advice is, use a mobility device if you are at risk for falls.

Lots of people are still working at something, active, mobile, etc. at diagnosis since typically there are at least some months past diagnosis before mobility takes more of a dive. It's a progressive disease, but people decline at different rates and in different ways, so there is a wide range of mobility here.

Changing your living situation isn't something you have to decide this second, unless you have a lease renewal coming up. Most people don't quit their job until they're coming up on when they have to, but you will want to consider who you tell what, as there can be insurance and benefit consequences depending on your situation. In a small town, once a few people know, likely others will, too.

Like anything else, it's wise to hope for the best and plan for the worst. Neither NurOwn nor AMX is in a position to file for FDA approval as yet. NurOwn expects to have preliminary results for its current study around year's end. AMX is currently considering its move into Phase 3, so it's behind where NurOwn is now. You can search for these terms (Amylyx has more hits) in the search link at the top right and see more.

Apart from these, though, simple things like keeping your weight up with a wholesome diet, staying hydrated, getting your sleep, living your life (safely, in this pandemic), etc. and being ready to accept equipment as the needs arise, make a big difference in your quality/quantity of life.

Give yourself time to process, and if you need help with that, like counseling, that is available, too. We will support however we can.

Best,
Laurie

 

[nona]

I'm sorry that you're in this club. It is definitely a shock, and give yourself time to grieve and process before reacting. You've got time, and we've got experience. Thinking of you and your family.

 

[KimT]

Hi Mike,

Sorry to have to welcome you. It took my doctors nearly a year to diagnose me, partially my fault because I was in denial. After my diagnosis I thought I would work another year but the stress of living alone in a condo I knew would not be adequate for my long-term needs and wants, made me go out on disability.
If you enjoy your work, I would say keep doing it. Know that you have the right, under ADA, to request reasonable accommodations. I was a college teacher and I requested to teach all online from home. They agreed but even that took too much out of me with all the decisions to make.

What I would recommend is: 1. Get a second opinion and establish which doctors/clinic you plan to use in the future. 2. Get your financial affairs in order. Everyone should have their affairs in order but, when you're young, they sometimes need adjusting.

If you're comfortable doing so, please share how you got diagnosed. It does help us with suggestions.

Let us know how we can help.

 

[ReginaS]

Hi Mike, getting the ALS diagnosis was a big shock for my partner and me. I still remember when and how we found out. His started with foot drop but he had also bulbar symptoms and was first treated for asthma and GERD.
Several people said eat lots of calories but nobody told him very clearly that there seems to be a correlation between weight or calories and the progress of ALS. So if you can, eat. Eat lots of good food and calories. The shock will subside after a while. You will be able to make the necessary decisions, but it might take a bit. ALS is so different for everybody - there are some patterns but even so there are so many different courses of the disease.
This is a really nice group of people and they are very knowledgeable and caring. A sad welcome here.

 

[Blackeyes]

Hi Mike. It’s nice to meet you. I wish the circumstances were different.
my pals was diagnosed June, 2019. At first it feels like you just got hit in the stomach and your mind is whirling. But before u make any big decisions give yourself some time to process. The disease is different for everyone. Some worked for years after the first symptom appeared. Some had to stop working right away. But before you make any life alternating decisions get a second opinion as was suggested and then just breath. Sit and tell your family. U didn’t say how old your children are. Talking to children is hard. They ask questions that you really don’t know The answer to because everyone progresses so differently. One thing I suggest is to do everything you are still capable of doing. Without hurting yourself. Don’t stop doing anything just because of the diagnoses. If you can still do something and you won’t hurt yourself then please do it. Don’t stop talking to people. Don’t stop living just because you have ALS. There will come a time where you won’t be able to work. That you may need to live with your parents. When that time comes you’ll know. Until then live. Don’t work hard at your job but at your relationships. Make plans of where you want to be if and when this happens. Would your house be feasible for wheelchairs? Lifts? Even after my husband was diagnosed we thought we had some time. But his progressed so quickly that he only worked for another month before he fell one to many times. We moved closer to family and did renovate right away. Which now I wish we would have waited and I would have taken him on a trip or gone fishing or done anything but work on the house. By the time we got everything ready he couldn’t walk without his braces and walker. I was going to take him to see his 2 kids and grandkids but then Covid hit. So I say if you can still do it and be safe then do it and make memories. That’s what’s important right now. Memories for when you are not as active and memories for your family to hold on to.
Again I am so sorry this has happened to you. But everyone here knows how u feel and what your going thru. You have perspectives from both pals and cals. I’ve never walked away not feeling like someone cares or have a few ideas to try. Take care

 

[Mike84]

Anybody else feel like they can't sit still? I feel like I have to constantly pace around the house and if I'm sitting I have the urge to rock back and forth. When I'm sitting still I just feel uncomfortable. Can't relax!

Also if you lose a function or get weak with this does anything ever come back? I know in MS for example symptoms can come and go.

 

[lisa g]

Hi Mike,
Like everyone else here we welcome you although we wish we didn't have to. First thing, take a deep breath and relax for a minute to process the information. Yes it's scary to hear the words you have ALS and like everyone else here I felt my world fall apart. After a year and a half after my diagnosis and more than 2 years of symptoms I'm still mobile just slower. Progression is different for everyone.

Definitely get a second opinion from a neuro muscular specialist. You've got a great bunch of people here to help guide you and answer all your questions. Just take one day at a time.

 

[Clearwater AL]

Mike, people here are eager to help you as you have seen above,

But, if you don't give us some info to your path to a confirmed
diagnosis of ALS... when it started, how it started, who did you
see, are you going to get a second opinion and more with you
only being 36 years old (against the odds) it leaves many of us
swinging in the wind to give you really creditable advice.

Was it Bulbar? Limb weakness/failure? Thumb failure
(Split Hand Syndrome)? drop foot? so many of the
positive indicators of ALS/MND.

Have you had an EMG? Even members who post on the
"Could This Be ALS" sub-forum have posted their EMG
results. Yes, it is optional.

It seems you are avoiding this.

As you wrote....

"Anybody else feel like they can't sit still? I feel like I have to constantly
pace around the house and if I'm sitting I have the urge to rock back
and forth. When I'm sitting still I just feel uncomfortable. Can't relax!

Also if you lose a function or get weak with this does anything ever
come back? I know in MS for example symptoms can come and go."

(You ask a lot of questions more like you're doing a survey. ?)

That doesn't really describe the scenario of ALS. If you have had a
confirmed diagnosis of ALS the anxiety would be understandable.

Help us with some info as so many other PALS have been more than
willing to share their path to a diagnosis.

Yes, for all those who may get ill with me for asking this.... it only brings
more creditability to his situation... for him!

PS. Joining this Forum as a PALS comes with a "reverence" above others,
CALS too. It beckons for some creditability. I hope you understand.

 

[Mike84]

Where can people like us live? I can't see myself moving back in with my mom. Is there like a nursing home type option. I don't want her to have to take care of me.

 

[lgelb]

Medicare (or other insurance, whatever applies) will not pay for a nursing home just because someone has ALS. They will pay for a limited length of time if there is a recognized reason for a stay. Hospitalization is required first, for those kinds of reasons.

Medicaid may pay for longer and, if you qualify, will pay for some basic home help that Medicare will not. Still, no third party pays for 24/7 care, though hopefully it's a while before you need that.

Of course, assisted living facilities and nursing homes do accept private funds (cash) if those are available. Typically assisted living facilities will not be an option once someone cannot get around on their own or with a walker/rollator. Most PALS cannot operate a manual wheelchair on their own by the time they need one, which is why the progression often goes from walker to power chair rather quickly.

There are a few ALS-specific nursing centers, with long waiting lists, I believe: the Gleason facility in New Orleans and the Saling-McDonald homes near Boston.

If you can afford it and your home can be made accessible for a wheelchair, shower chair, and lift, the preferred option is generally to stay in your home, with help, as some forum members who do not live with family are doing (doesn't have to be the place you're in now). If you have long-term care or disability insurance, those may contribute to home care.

If you are renting, there are some complexes that have roll-in showers so that could be something to look at. Even if not, there are ways around that. We rented an apartment with a traditional shower stall while my husband was alive, and used a ShowerBuddy to give him an additional year of showers, before that no longer worked out. It's not cheap.

Or there may be a home that could serve as a future investment and you could live in it meanwhile.

There is much to think about. First and foremost, get a second opinion at a neuromuscular center, as we 100% recommend, so you are sure. Here is a map.

 

[affected]

Really sorry to welcome you here - not being able to sit still is pretty understandable. With time you will find what options you have and work through them. While it's all important, don't rush into the big decisions, find out all your options.