Newly Diagnosed (Day 2). I have a daughter and pregnant wife. We are devastated. Need help.

[ScottSmith]

I'm a 39 year old father of a beautiful 16 month old little girl and the husband to a beautiful and pregnant wife (another girl on the way). My fears started back in May (2020) when I returned to my job from quarantine. I own a personal training studio and train clients as well. My speech seemed "off." I attributed it to having to wear a mask all day. I also noticed my ability to sing to my daughter was becoming problematic. I used to have a lovely voice and even had a recording contract from a label back in my 20's. So something was going on. Clients started to notice the speech and that's when I got real concerned. I also began to have fasciculations all over my upper body non stop. I initially just thought it was normal muscle recovery stuff from all the heavy weight lifting I like to do.

I went down the rabbit hole of google and pretty quickly diagnosed myself with Bulbar Onset ALS. I was so scared. I took my family to the pumpkin patch the following morning and just felt joyless cause I knew I was in trouble. I told my wife my concerns. She thought it was anxiety produced which isn't an awful assumption because I have been under a tremendous amount of stress re-opening the business and keeping it afloat during a pandemic, all while figuring out how to be a new dad.

So I got on a bunch of anxiety forums and even bfs forums and re-convinced myself that it wasn't ALS after all. I had never felt so relieved in my life. My strength (aside from a little weakness in my left hand) was still so high that I thought there was no way it could be ALS. I can still do pull-ups, pushups, shoulder presses, lunges, etc. all with a decent amount of weight. And my speech didn't seem to worsen. And if I talked slower and more clearly. No one really noticed except for those who knew me really well.

I went to a chiropractor hoping (desperately) that maybe some massage and adjustments would at least do something to help with the muscle twitching and weakness. She did some reflex tests and my heart sunk. I knew enough about brisk and asymmetrical reflexes from my research to know that I failed.

I had a panic attack and ended up in the ER. This was on Friday, October 23rd.

I was able to get into a neurologist the following Monday (26th). It did not go well. She suspected ALS and I was floored.

My wife did not take this well. She (my wife) then went down the google rabbit hole and had a melt down. I on the other hand continued to maintain a positive attitude and refused to believe it. How could I have all this twitching but no real loss in strength? I thought the twitching only happened when the nerves died or were dying, yet I was still getting stronger in the gym? It didn't add up to me.

The Neuro referred me to an ALS specialist and fortunately (I guess?) got me in that Wednesday the 28th for an exam and EMG. My wife came with me this time, and to be honest, at this point, she knew what the outcome was gonna be cause she was still doing research while I stayed willfully ignorant.

After the EMG the doctor sat down with us and said "I know this is hard..." And I pretty much don't remember anything past that point. He did say the words "I believe it's Bulbar Onset ALS" or some manner of that phrase but he quickly started talking about treatments and setting up some additional tests. To be honest I was too in shock. My wife, bless her heart, was so strong for me and took notes while the doctor spoke about next steps while I just hung my head in disbelief.

It's Friday, October 30th now, so my wife and I are on Day 2. We are trying to stay busy making plans and arrangements for my treatment and our finances. But man, we can't hold it together for more than an hour before a breakdown. We both feel guilty because we can't even be around our daughter right now. She is staying with the grandparents. It's just too heartbreaking to see the future we were building torpedoed like this. We can't find any joy because there is no future. I would love to hear from some people who have / are going through something similar and how you are coping and what strategies seem to work well. What would you tell someone on Day 2?

 

[Nikki J]

Very sorry to hear this.

for day 2 take time to process and grieve. The only practical thing I would do is arrange a second neuromuscular opinion which is advised for all PALS. It should be at a university level ALS clinic.

were you offered nuedexta? What are the additional tests? Do they include genetic testing?

in resources you will find information about things to do but take it in little bites.

 

[Mike84]

I'm new also. Look into these new medications that are coming out hopefully next year: Nurown, CuATSM, and AMX0035. They've been proven to stop or at the very least slow the progression, some patients have even improved and regained functions. My only hope is that I'll still be somewhat okay a year from now and then get on one of these medications.

 

[Bestfriends14]

I'm so very sorry, Scott. As Nikki said, please take time to grieve and allow yourself to work through these raw emotions. Everything is not happening in one day, so try to take one day at a time, or even one hour at a time. The folks here are wonderful, knowledgeable, and supportive.

And to echo Nikki, please take small bites when eating, along with chewing your food well.

Hugs to you and your family.

Joanna

 

[Wilson2009]

So sorry to hear this, Scott. Did you get your diagnosis at KU Med Center? If not, I would recommend going there for a second opinion. The neurology department is excellent. They also conduct the local ALS Clinic.

 

[KevinM]

I am so, so, sorry, Scott. All of us here can completely relate to the stress, anxiety, fear, anger, and shock you are feeling right now. Being diagnosed at any age is the ultimate gut punch—I was 62–but to be so in the prime of your life with a young family fills we with rage at this terrible f——ing beast. There are several young PALS here that can relate, and numerous others online via twitter and Facebook. They have an incredible passion and strength to keep moving forward for their partners and young children, and I know you will do the same.

As Joanna said, it doesn’t happen all at once (though you might feel that it is), and as Mike said there are some promising therapies that we all hope become available next year. Give yourself some time, come up for air, control what you can control, and find joy every day. I’ll be thinking of you. Best, Kevin

 

[EricInLA]

Sorry you find yourself here. I was 49 when I was diagnosed earlier this year, though I had suspicions for about 18 months before that. I completely understand the shock and desperate feeling you get when hearing this diagnosis. I had a similar experience of forgetting everything the doctor said after the first few miserable words.

I would echo the advice of others to give yourself some time to cope with this news, but understand that the shock does wear off. It's hard to see right now, but take it from others who were in your shoes, that your life's story does not end with this diagnosis. As Lou Gehrig himself said, "I've been given a bad break, but I have a lot to live for". You have a lot to live for, and live you will. There's some planning you'll have to think about (as you mention), but also know this doesn't have to be done all right now, or even this week. You'll have time to do that.

For me, loss of sleep from the shock was the biggest problem. If that's you too, there are ways to address that problem (I'm happy to help with this). Once I started sleeping normally, it made it easier to cope and to resume life in a normal way.

Also, you will find this forum to be an awesome place to share and receive practical advice and just to commiserate.

 

[KimT]

Scott,

I'm so very sorry for what you and your wife are going through. I went through all the stages of grief.....sometimes it felt I was experiencing them all at once. I lived alone, no kids or close relatives, so I had big decisions only I could make.
My diagnosis took a long time and I found myself getting second and third opinions at Mayo and Johns Hopkins.

Here is what I would do:

1. Arrange a second opinion
2. Make a plan with your wife about who you want to tell and when.
3. Do any additional testing they want to do

The rest can wait. In the meantime, stay in shape, do things that make you happy, eat good food, stay hydrated, get enough sleep.

 

[ScottSmith]

Wow, I'm blown away by the support and positivity here already. I'm really glad I introduced myself. Today was a rough morning filled with sadness as my wife and I still grappled with what will not be. Plus, a meeting with my lawyer to discuss some potential issues with my life insurance policy. In the afternoon, my wife and I decided to be strong for our daughter and picked her up from the grandparents for the first time and I'm proud to report we had an amazing time together, enjoying the beautiful fall weather in KC right now. And now by 6pm, I'm absolutely exhausted. I'm probably pushing myself too hard but staying proactive and busy has been the only way to keep me from melting down. I have no idea how to rest at this point.

To respond...

Nikki: We are headed to Mayo Clinic for a second opinion in November. I was prescribed Riluzole and told about Radicava infusions. I haven't heard about Nuedexta. Is that something I should definitely inquire about? Also, I'm taking megadoses of Vitamin C, Beta Carotene, and Vitamin E. They did some labs which included some genetic testing and even B-12 I think. I haven't heard back on those yet. I also have not had the MRI which is scheduled for mid November.

Mike: I'm really sorry to hear about your diagnosis man. This is a waking nightmare right now and I know you feel me. But I really appreciated your hopeful and insightful info regarding the potential new effective treatments out there on the horizon for us. My wife and I are daydreaming about them being an option for us at some point and they have given us another reason to keep fighting this. So much so that we are naming our unborn daughter, Hope.

Wilson: Yes, it was at the KU Med Center. I'm going to the clinic on Monday, actually, to learn about what is next for me.

Eric: Right now, I'm taking somewhere between .5mg and .75mg of lorazepam at night to help with anxiety and sleep. It works for about 4-5 hours of fairly interrupted sleep then I'm unable to go back down. It's better than nothing but I don't think taking benzos every night is a good long term strategy so I'm all ears to hear about what has worked best to combat both anxiety and lack of sleep.

To everyone, commenting on my post, thank you for your support. You all will be in my thoughts and prayers as well. We're in this together right?

 

[blitzc]

Scott, I'm so sorry to have you here. But know you are in good company. Reading your post brings back the horrific day when I was diagnosed at age 53 and had all those feelings and emotions.

Like Nikki and others have said: get a second opinion. My Neuro told us that this was our first order of business. We waited to share this news until we had that second neuro agreement. No one knew but my husband for weeks. It was helpful in that it gave us time to digest and calm down.

Eat, sleep, and get help from your doctor if you have trouble with either of these. Your family needs you.
Prayers for you and your wife.

 

[Nikki J]

Since you are bulbar yes ask about nuedexta. It is for pseudo bulbar affect the emotional lability that often comes with ALS but there was one study plus anecdotal evidence that it transiently helps bulbar symptoms. Also look into recording your voice. Voice banking but also record yourself reading to/ for your children, saying I love you and even if it doesn’t sound perfect singing. Don’t wait. It isn’t going to get easier and those things will mean everything to your family

 

[KimT]

As far as sleep is concerned, Charlotte's Web CBD oil, extra magnesium, and Remeron (an anti-depressant with strong anti-anxiety properties) work for me. I had been taking Xanax for years and was able to get off it with CBD oil.

Scott, Hope is a lovely name.

Voice banking is also a great idea and recording yourself reading some books to your daughters will be special. Everyone should do that.

We're here for you. You are in my prayers, too.

 

[EricInLA]

I'll address a couple of things. First, since you asked, sleep. It took me quite a while to figure this one out. I went through several stages of trying Lorazepam, Xanax, Ambien, alcohol (gently), cannabis, Melatonin, meditation/Headspace (not for me), warm baths, and probably other stuff I'm forgetting. Some of this helped a little, but I was still waking up much earlier than I wanted. Then, I went on a hike with a psychiatrist friend of mine, and he suggested Trazodone. I started taking this, and it really worked, so I've been on it ever since -- about 6 months now. I take 50 Mg. about an hour before I go to sleep, which I understand to be a relatively low dose, but it works like a charm for me. It's not addictive and has minimal side effects -- for me just a little dry mouth at the beginning. I should add that I also take Lexapro, an SSRI antidepressant, which may be helping with sleep, either directly or indirectly. I was reluctant to be on this drug long-term because of its associated stigma and my self image as a strong and resilient guy. However, it's really taken away the dreadful thoughts that were constantly in the background after my diagnosis. I have to say it's a game changer for my attitude and outlook.

Staying busy is good -- I do that too -- but try not to overdo it! You don't want to crash. I'm thinking it might be good to give yourself some down time to process. But then on a day-to-day basis, I totally agree that staying busy and living life as normally as you can is a healthy approach.

Everyone is different when it comes to how to tell people about your diagnosis. Sometimes there are work-related issues to consider. A friend of mine delayed telling people for quite a while until he was ready. For me, I found that just the idea of having to tell close family and friends was causing me massive anxiety. In fact, the process my wife and I went through in telling our 3 teenage boys was perhaps the hardest of this whole ordeal. So, I decided I wanted to get this over with and just get the word out right away. But, I didn't want to have the conversation 14 times. So, I composed a carefully worded e-mail to the people closest to me, apologized for communicating the news that way (though no one should take offense to anything you do at this point), and sent it off. I'm happy to private message you my e-mail if you want it. Following that, I told people to simply treat me normally, don't be afraid to talk about it, but it didn't have to be the topic of every conversation either.

 

[lgelb]

I won't pile on -- you have gotten plenty of good Day 2 advice, already did a lot of constructive adjustments, and are ready for Day 3. I would only say, you are still in the processing stage and there will be more days when it seems like too much. Be gentle with yourselves. There is a future -- it's not the one you planned, but there is more life ahead, including good stuff like watching your daughter(s) grow, still helping clients, being with your friends and family. Maybe pick up an easy instrument like a zylophone so your daughter can get accustomed to it, and recordings are a great idea. Do some videos, too.

If it were me, I wouldn't actually tell people wholesale until you have heard the second opinion @ Mayo. That will give you time to craft the communication plan, as well, esp. since there are business implications.

Best,
Laurie

 

[lisa g]

Scott,
We're so sorry to have to welcome anyone here but this is a great place to land. We all have been where you are now so we understand the emotions and anxiety your feeling. Don't beat yourself up, take one day at a time. Just remember the people here will always be here to guide you through your fears and questions. We're all in this s**t storm together which makes us stronger.

Definitely make sure to get a second opinion from a neuro muscular specialist. That's step # 1. Everything else will fall into place. Take one day at a time.