How do I tell my friends and family?

[RedinTucson]

This all started with what I figured was must've been an Achilles tendon injury, and now I'm here. I was given my diagnosis on Thursday. I'm waiting on my appointment to get a 2nd opinion.

Posting this thread is the closest I've come to sharing this information. I've kept everyone in the dark, including my wife. In part, I want to hold on to the illusion of having a normal life as long as I can, but I know this is a lie. This all becomes 'real' when I'll let the cat out of the bag.

How do I explain this to my wife and my mother? Even worse, how can I explain this to my 3 year old daughter?

I have many close friends that I've acquired through different chapters in my life. What's the best way to tell them? I just want to send out on big email blast! I'm thinking that after I tell my inner circle, maybe I can post the news on my Facebook page? I'd really appreciate to hear from others how they took this step

What about work? How do I inform my employer about this? What issues might arise?

I feel lost. I wish they had an ALS orientation.

 

[Mediasmart]

You can't tell your three year old anything that will remotely make. You simply have to tell your wife. There is no reason on earth to justify not telling her.

 

[MaxEidswick]

with me, it was getting obvious something was wrong, speech mainly. I had my wife with me throughout the diagnosis process 6/2012-8/2013, although we can now see in hindsight that I was onset around 9/2010 (speech, tongue).

After diagnosis, I told family, friends, colleagues openly. Those close or that showed interest, I sent the to links to the "ABCs of ALS" on YouTube. I send the family an email update quarterly after ALS clinic on progression so they all know what to expect.

>I was given my diagnosis on Thursday. I'm waiting on my appointment to get a 2nd opinion.

good, find an ALS clinic, if possible. If you are a vet, get the PVA involved asap.

I found the first weeks, months, and even now a roller coaster. This forum is an invaluable resource. Remember we all progress at a different rate, some over decades.

Hang in there and try to take it slow.

Kind regards,

Max

 

[azgirl]

There was no easy way to tell my parents or children. I had my closest friend call some other friends so I wouldn't have to keep explaining. The days have gotten much easier as time passes. First month was hardest. So sorry you have to join this group but the members have much to give.

 

[azgirl]

Btw I'm also in tucson and have found the Als clinic here very good.

 

[RedinTucson]

Btw I'm also in tucson and have found the Als clinic here very good.

There's a clinic here!?!? I feel so stupid! Do you have a contact number for them? I am VERY frustrated with my current neurologist and now with the doctor's office with whom I've been referred to. They don't seem too urgent or sympathetic. I really want to sit down with a professional to answer all of my questions.

 

[Santa joe]

I told our sons In the parking lot of the ALS clinic sitting in the car. I was crying so hard they couldn't understand me. Had to call each of them back when I calmed down. I wished I had gone about that differently but it's over and done. You definitely need to tell your wife. You are going to need her more now than ever! I'm sorry you have to join us but you will never find a better place to be. The members on this site are the best and I would be lost without all of their support. Know that you are not alone on this journey.

Debbie

 

[Jeff Long]

Red,
You asked, so here goes...
First thing I'd do is take the wife aside and tell her. Sometime yesterday would still be too late. You're going to need her on this journey, so get her aboard no matter how devastating it is (and believe me, I and others here know how much it is!)

And this is an at-home conversation when you have nothing on the schedule and, preferably, someone to watch the baby.

With regards to telling others... I called and told some close family, but for the "masses" we found it easier to post on a Caring Bridge account. One initial post, sent to email addresses of folks we thought should know, kept us from telling the same story over and over and over and over... you get the idea.

For the 3 year old; right now "Daddy is sick" is enough. You wouldn't have her carry your suitcase through the airport because it's more than she can carry right now... same goes for any details about ALS.

You and your wife will consider all your circumstances and determine the right time to tell your employer.

This is all new and raw and I'm sorry for you. In the near future there will be many things you'll want to take care of for the sake of your family, but for the time being let this firm up in your head and get the wife involved.

Also, understand that everything you knew and believed last Wednesday is just as true and real today, even though you may doubt that for a moment.

God bless,
Jeff

 

[DreamsEnd]

RedinTucson,

I'm so sorry for your diagnosis. Yes, I've heard the head of the head of the MND is in Tucson and that the ALS support there is awesome. Please don't berate yourself for not knowing there is an ALS clinic there. None of us did until we got our diagnosis but your neurologist SHOULD have told you and referred you there. Again, if you served in the military please contact your local PVA.

And please tell your wife, you're in this together.

Sherry

 

[pearshoot]

recommend you always take your wife to doctor or clinic with you... a learning process for both of you

 

[azgirl]

The ALS clinic in Tucson is through the University of Arizona Medical Center, South Campus.
Dr. Katalin Scherer
Department Phone: 520.694.8888

I think you should see if your neurologist or other doctor can give you a referral so that you can get in sooner. The "team" they have assigned me are all knowledgeable and compassionate.

This is all still real new to me, and I'm just sorry that you have to go through it all now, too.

Kay

 

[MaxEidswick]

>recommend you always take your wife to doctor or clinic with you... a learning process for both of you

Right and, besides, who else can take notes and remember all that stuff ?

 

[affected]

Your wife probably knows something is wrong and is worried and alone in her worry, just like you've become alone in your worry.

Tell her as openly and honestly as you can. Then realise you will both be on this wild roller coaster for 1 -2 months as you adjust to what this all means, and find out how much we don't know what it means as every PALS is so different, even when so similar.

You will both need each other. You wife will always be devastated that she can't wave a magic wand and make you better, but she will be relieved truly to name the monster, and then work with you to make the best of everything and learn together how to live in a new way.

I'm so sorry you had to join us, this is the club no one wants to join, but the best place to be!

 

[Atsugi]

When the 3 year old notices a symptom and asks what's wrong: "Daddy's foot is sick" is good enough.
She'll adjust to everyday realities as they unfold. Don't put anymore on her than she asks for.

 

[zoohouse]

Welcome Red;
Sorry you are going to go on this trip with us, but there are amazing people here to help. I agree with the others that you should let your wife know now rather than when she starts asking you what is going on. The first month is extremely hard to get through, and it will be made easier if you are still active and can plan on the changes that need to be made on your house. Otherwise she will be , coping with the news and trying to think about alterations at the same time. I did not have the luxury of not knowing, as I am a nurse, and it was me that had to tell my husband I thought he had ALS. As soon as we got the confirmation, we started making plans to sell our split level home and build a wheelchair accessible one.
As far as your daughter is concerned, she will adapt the quickest. When I did missionary work in Africa I visited a Leper colony and saw the devastation of that disease, but to the children their parents were beautiful, they did not see the disfigurement. I as a child remember seeing the large veins on the back of my mothers hands and thinking they were beautiful and wanted some too. Your daughter will only see your beautiful loving soul. I don't believe she needs to be told anything until she asks, or until near the end and there is a true risk of loss. She will be more likely to react to the reaction of others, and that is when you will need to explain something to her. The first time that you are around your siblings and tell them, I suggest you do it away from her, so that they can feel free to cry and react. For example if someone is told bad news in front of a young child and they remain calm the child will as well, if that person reacts with tears and hysteria the child will as well. I hope this helps a bit, and know that you will be added to my prayers.

Paulette