Finally introducing myself

[RogerC53]

Have posted in other parts of this site in the past to get guidance and answers. Thought it was time that I introduce myself. Diagnosed about 3 months ago at Stanford Neuro Center. It took about a 1 1/2 years for the diagnosis due to my other auto immune diseases. I have also been diagnosed with Myasthenia gravis among other diseases.

I am 66 years old with 2 grown sons a wonderful wife and 3 Grand children ages 2 1/2, 6 months, and 1 month. Spent my working years as an educator and administrator for middle and high schools in my town of Gilroy, Ca. Had to cut my career short due to auto immune diseases. Was exposed to severe amounts of bio warfare chemicals when I was a child at Dugway Proving Grounds located in the Utah desert. This exposure has led to most of my health problems and my MND/ALS diagnoses. I know I am still in denial but as I lose functioning it becomes harder to deny the obvious. Had a rough visit with my Neuro yesterday where we discussed the progress and symptoms. I had been minimalizing the disease for quite awhile but with recent breathing and swallowing problems my neuro made it clear about the path that I was on in a compassionate way. Had a nice get togethere with all my kids last night where we discussed the path I was on, we all had a good cry and then started talking about hope and plans for the future. I am fortunate that my sons live within 2 miles of me so I have lots of support and get to see my grand children whenever I want.

Have one immediate question.... When do you know it is time to tell your friends?

A few of my closest friends know everything but a lot of my friends just know I am going to Stanford a lot due to a "problem".
My personality just makes me want to protect people so I just don't talk a lot about bad news. But I know my wife will get a lot of support if my wider circle of friends are informed. I just have a hard time breaking bad news.
My wife has been through more than anyone I know with all my auto immune problems and is so kind and giving. I am truly blessed.
I will end this by saying "I didn't know I could be so happy."
My wife and family bring me such joy it makes me very happy even with the path I am on.
Roger

 

[lgelb]

It's wonderful that you have such family support, Roger. And it is completely fine to disseminate the news on your own timetable, or let your close friends spread the word if you don't want to. Social media is another way.

We're here whenever you need us.

Best,
Laurie

 

[mytmouz]

As far as telling your friends and family, they probably already know. All it takes is one post to social media...

 

[Nikki J]

Have you talked to your wife about who/ when to tell? If there are people she needs/ wants to tell so she can talk with them about this or get support I think it is ok for her to share. As people said once you tell one of a group it will spread quickly enough to the rest.

it sounds like you have already told the people who really matter ( family and close friends). You do want to be sure they all are told first.
i am glad you have a great family and support system