Early stages?

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JohnT

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I just want to thank you all, Nikki, Laurie, Clearwater AL, Jeff for your kind responses. My initial post here was on Nov 30. And i have be met with kind, thoughtful, encouraging responses in that short span from ‘very worried’ to my ‘holy sh!t’ day yesterday. I am very bleary-eyed and exceptionally sleep deprived at present. I am not sure how i will move forward… and begin to tell family, friends my fate. I am supposed to go to a friends big surprise 50th bday next month. do i not say anything and pretend all is well in my life when i am dying inside? Do i tell people and have them move awkwardly in my presence only to say uncomfortable cliche things to me?
I guess i will have to find a new environment because i refuse to be that guy who walks into the room and sees the air and fun sucked out because people are like, ‘oh sh!t, geez its that poor guy, damn.’ That is simply human nature, not any indictment of my friends.
I had a good friend, healthy, fit 51yr old pass away suddenly in Aug 2020 of an aneurism. Just moved his daughter into her dorm at college. It was so tragic. I think of him often and now i think of him in an envious way. I will stop posting as i see the tenor of what i am typing is not healthy for others. But this just my reality. God speed.
 

Nikki J

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Please feel free to post. We want to support you. Start a new thread in newly diagnosed if you want. After you tell kids and close family there may be need to know people ( do the kids have teachers, coaches etc or are they adults?). Otherwise you can tell or not tell as you wish. I wouldn’t necessarily rush to do so but it is your comfort. You don’t have to decide that now

for now organize your second opinion with a view to finding a clinic you are comfortable with then take a little time to absorb this.

there is a resource section at the top of general discussion that you should look at when ready. I also like youralsguide dot com which is very basic but focused and helpful
 

affected

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Definitely start a thread in newly diagnosed and vent all you want and need. There is no bigger shock and your response is completely valid.
I would try to get a second opinion asap however as we do recommend this.
Starting riluzole in the meantime won't hurt anything if there has been some error in the diagnosis, and studies show it works best if started early.

Sorry to be welcoming you here, we will walk with you.
 

JohnT

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Fresh off my 12-28-21 als diagnosis which was quick (diagnostic neuro exam on 12-22 and dirty emg/clean mri on 28th), struggling every minute with the enormity of the weight.
I have four children-daughter 25, sons 22, 20, 16. They are all incredible and healthy persons. Have a soft date on next sunday Jan 9 to tell them. 25 yr old lives in city and will be home that day. 20 year old goes back to college shortly after, so 9th is target date. I’d rather just die first. Now they will live their lives in fear wondering when will their time come …. All b/c of their father. My God. Thats my parting gift- i’ll be dead somewhat soon, but before that, you get burdened with watching & dealing with my helplessness. oh and you might get it because of me! This is more than anyone should have to bear.
 

Nikki J

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You should get genetic testing but the risk to children of those with simplex ( AKA sporadic) ALS is extremely low A shade above that of the general population. You are catastrophizing here. Even if you have a genetic form ( for which you have no evidence) there is prevention coming soon for carriers.

I am FALS 4 members of my family have died from this in the last decade. Two more of us are now affected. One more is a known carrier and 6 untested are 50/50 for being a carrier there are children of these people too. My neurologist says not to worry she believes there will be answers for them

I am not trying to be unsympathetic here but you need to get perspective especially around risk before you talk to your children. You as a 53 yo male are in the age/ sex range for it to be most likely SALS
 

JohnT

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I am so so sorry to learn of not only yours but all off your family members affliction. I must come off as offensive. So forgive my wallowing.
I am struggling (mightily) with my new reality and the myriad permutations that come with it - which includes, most importantly, what this will do to my children lives and their future existence.
 

Nikki J

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You were not offensive but I do not want you to present this to your children as if they need to start worrying for themselves and that is what you sound like. I told my story as it is not at all unusual for FALS - no neurologist or researcher has blinked on hearing it and because there is great hope for my relatives All of my 50/50 relatives but one are older than your kids

if your kids ask about themselves the realistic answer is since we have no other affected family this isn’t at all likely to affect any of you but I will get a genetic test to be sure.

have you arranged your second opinion?
 

AlDowns

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JohnT, so sympathetic about the way your diagnostic report was handled. I was so fortunate to be referred to a qualified and high quality neuromuscular ALS Specialist. I was diagnosed on December 2, 2021. He did share that he had dealt with more than 500 confirmed ALS patients. And he knew that we had done our homework - my wife is a retired nurse and has been helpful to me in sorting out details. He was short on time so scheduled me for a follow up meeting to discuss next steps.
You need to find that same kind of experienced ALS Specialist with a team of experienced therapists. I am finding them to be excellent advocates for me. They have started the ball rolling on appropriate assistive devices such as the walker, home modifications, and a power wheelchair.
We can walk this journey together, all of us PALS.
Learning to live each day, one day at a time is a new challenge for me.
 

Clearwater AL

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John, The process to your diagnosis. A second opinion really really should
be considered. For the most part we recommend a second opinion to
most all newly diagnosed. (From re-reading your first couple of posts.)

It's also helpful to our very ALS knowledgeable members if you might share
what ALS facility (city/state/name) so they might help where to get a second
opinion at a certified ALS facility... if you consider to do so.
(You've only posted in your Bio - US.)
 
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jeff9000

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John, I’m leading you by a few months and also have adult children in their twenties. I sympathize with your situation. After being tentatively diagnosed by my neurologist- I was then referred to a specialist at the Duke ALS clinic. They say it takes a specialist to make the final call. From the Duke clinic I submitted a sample for genetic testing. Genetic testing is a double edged sword in my view. Definitely worth knowing but as it relates to your children it can be difficult.
We told our children basically everything as soon as we knew it. They appreciated the candor and trust - highly recommend it - at least for us.
unfortunately there is no magical way to deal with this. It’s a roller coaster of emotions that smooth out over time (somewhat). I joined an ALS forum recently that meets via zoom. I think it helps talking to others suffering the same fate. Also may want a 1-1 peer. My local NC ALS group connected me with someone.
For me, I try to live in the moment-these next 24 hours- but that is proving a challenge. There is a constant amount of planning that needs to happen: legal, financial, logistics… I hope you can reach the point-even if temporarily- you can look out and say “f-yeah what a sunset”
 
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