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

[Lkaibel]

I like Lauri’s advice on waiting to tell people until you have that second opinion from Mayo. That really would give you more time to process.

You were diagnosed very quickly compared to most with ALS. Our process was also short, but not as short as yours. This is getting more common I think as ALS is better understood, and it’s a double edged sword. You did not have to suffer a year of doubt, but you were hit over the head suddenly with this very large thing.

A thought that really comforted Brian and I in those earliest days was that our story, our lives together were not over. It’s another ballgame I understand, being young with a small child and one on the way but your story is not over, you still have living to do. Before anyone dies from ALS, they live with it and contrary to what it may feel like now, a lot of that living can be good. We had done beautiful times after Brian’s diagnosis and I wish the same for you and your family.

You are never alone with ALS, we here at the forum are here to support you and should she decide to join us at some point, your wife. If you are like most of us, you’ll see support from others come fro surprising sources as well.


Thinking of you and your family.

 

[affected]

Really sorry you are joining us. You can see there is a wealth of friendship and information here - we will help you both.

 

[JimInVA]

Scott,

I'm sorry you find yourself here, but glad that you've found us nonetheless. You will find some very amazing people participating in these forums... each willing to share their perspective and how they worked through the many "things" that come up on this journey. Most importantly, the folks here "get it"... as we are on the same train or have made that same ride, previously. You are among people who care and you are not alone.

My best to you, both...

Jim

 

[jsproulx]

As a 36 year old female whose 38 (then 37) year old husband was diagnosed this year, just after we gave birth to our third baby, I can so relate. My heart breaks for you, your wife and daughters. I took the advice of a friend whose Dad passed from ALS 5 years ago, “don’t forget to find the blessings through the trenches, because they are out there.” Find a support group in your area. This “friend” and I have actually never met but she heard our story and reached out and I go to her on my bad days (via text). The movie Gleason (super hard to watch), but if you can-be inspired by knowing that they went on to have another child after his diagnosis.

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If your voice is even SEMI understandable, my #1 advice to you is-PLEASE make videos and recordings! Record those hallmark books for your little ones! Its so important! My hubby’s voice went way too fast so he didn’t get a chance too. Even if you sound “drunk” or have to talk slow, it may be the best it will ever be right now! I don’t know how much personal info we can share on here as I am new to the forums but would love to be in touch with you and your wife! If you are interested, let me know and we will figure something out! As weird as it sounds, there is no better time to have ALS as there is currently so much in the works with clinical trials and treatments right now!

Sending so much love, prayers and good vibes your way! Lets kick ALS’ ASS together!

 

[NorthernCalif]

My husband and I can sympathize with you... My husband is 74 and has been diagnosed with Bulbar ALS just this year.... because of your age our hearts especially go out to you! Every case seems to be totally different! My husband lost his voice very fast and for precautions I would recommend to sing songs and record them for your children. There is an free ap on iPhones... we purchased one also (predictable) but prefer the free ap... claro... I believe, but am not positive, you may be able record your own voice for future use... ...check it out... Please feel free to contact us... prepare for the future but enjoy every day! Mike & LeeAnn

 

[Clearwater AL]

Scott, I got to say how fortunate you are to go from an ER visit, to
a Neurologist, to an EMG with a report in a matter of just days,
from October 23 (ER) to October 28th (EMG)

And… being prescribed Riluzole maybe on the same day of the EMG.

Do I have the time line wrong?

So many PALS have waited weeks and some a month to just to get a
Neuro appointment. Then… months and some who have posted here
waiting, testing for a year or more before getting a confirmed
diagnosis of ALS. Before COVID 19!

Again, you are so fortunate, and most of all, in the middle of this
COVID 19 where so many appointments are taking longer than
before.

Once more… consider yourself extremely fortunate. I do strongly
suggest you get a second opinion and maybe post the report of
summary/conclusion or even the most recent one.

Be careful with the anxiety meds. Good luck on this path.

PS. Just to be clear... there is nothing fortunate in getting a
diagnosis of ALS, PLS or any MND.

 

[ScottSmith]

Again, thanks to everyone who commented on my Newly Diagnosed thread. Although I haven't posted much yet, I've been reading a lot and learning and gleaming inspiration.

This week my goal is to get on those recordings. Thank you everyone for the urgent suggestion.

I think I'm still in the shock/denial phase, though there have been plenty of tears. My ALSFRS is 45 so it's not like my life has changed dramatically from a functional standpoint yet. Losing my singing voice and not being able to workout like I want to have been my biggest sacrifices so far (which I'm embarrassed to be upset about cause I know others on here have lost so much more).

I'm a little worried about what is to come and I feel like the anger phase is right around the corner but, so far, my wife and I have been focused on what we can control now and that has been helpful.

We are blessed to have friend and family support which, I know, is not the case for everyone who is dealt a rough blow. So for that we are thankful.

Furthermore, to Clearwaters point and a few others who commented, we really were lucky how quickly things got expedited after the panic attack that landed me in the ER. Our initial Neuro appointments wasn't until late January (and it wasn't even a neuromuscular specialist). So while it may have been nice to have the ignorance of not knowing I had ALS for the holidays, I am now receiving treatment at least 3 months earlier than I would have otherwise.

In summary, there is a lot I need to be grateful for and I still have time to live a meaningful life. This community has been really good at reminding me that, cause it sure feels like a death sentence when you first find out.

 

[Clearwater AL]

Scott, I'm glad you are going to the Mayo Clinic for a second opinion
this month.

And... you are pursuing your records this week. Let us know.

You mentioned the anger phase is around the corner.
Try so hard not to go there... it will only bring burden to your
family and supporters. Many of us didn't go there.

Just keep remembering how fortunate you are in an unfortunate
situation compared to others as you wrote is not the case for others.

Best.

 

[Nikki J]

anger is allowed. You don’t have to be raging on the outside which can be detrimental as Al said but you feel what you feel and that is ok. Your wife may feel it even more. I did when my sister was diagnosed.

I had asked about genetic testing. was it discussed with you? The younger you are the more likely there is to be an identifiable genetic mutation. This may be actionable and also time sensitive. There is a promising phase 3 trial for sod1 that is trying to fill their last few slots. C9orf72, another mutation, has one trial that is currently not enrolling but hopefully will open up again and there are several trials expected in the new year. ATXN2 is also starting a trial. That one also will accept people with no mutations In your place I would want to look at all mutations but at least do SOD1 and C9 now

 

[Chuckdobro]

Scott

Be angry this disease shows no mercy. Do yourself a favor and get all your affairs in order. Especially wheelchair access you willneed it before you know it. Prc makes a wonderful eyegaze computer.

 

[PALSdottir]

I'm a daughter of a PALS, and although I worry about my dad, I love and admire him for so many reasons not defined by ALS. If you're the type to find comfort in books, "It's Not Yet Dark" by Simon Fitzmaurice is a good read, written by a PALS father of young children, and there's a lot of love and happiness in his family life.

 

[Tirona]

Scott,

Very sorry to welcome you here but in the same time I’m glad you found this forum.
I was diagnosed last August. Joining this community has changed the way I look at this horrible condition. The support of the members and the useful information I find here has been a huge help for me.
There are so many things to change and adapt but first take some days to digest all this with your wife and other people very close to you.
Best