My heart is broken...

[joni51]

Well my name is Joni, my husband Bruce was officially diagnosed today at Emory with ALS. Even though there was that tiny hope that it was something else, we both already knew what it was. So so much info to try and digest and process. My mind feels like it might explode! I cannot even imagine his thoughts being he is the kind of person that always wants to take care of everyone else. Ted you were right..Nicole, Crystal and some of the others on Dr Glass's team were fantastic. I guess now we grieve some, cry some, and then we go on. Thanks for listening.

 

[BarryG]

Joni, so sorry about the diagnosis but you have it right when you said "grieve some, cry some, and then we go on".

The going on is the important thing, hard to do but it we can be any help just ask. There isn't much that we don't know about this stupid disease (except how to prevent and cure it).

Barry

 

[Kirk]

Joni - sorry to hear of the final diagnosed. for me waves of grieving have come and gone, but none so difficult as after the initial diagnosed. It seemed like i had pushed all of the horrible thoughts out until that final diagnosed. I agree with Barry...grieve, cry a BUNCH and then try to focus on living today. Blessings to you, your husband and your family.

 

[joelc]

Sorry it turned out to be ALS. We are here for you!

 

[TedH5]

Joni I am very sorry for the diagnosis...I know it is hard but it is important for him to remember that he is the same person he was the day before and that tomorrow the sun will rise and so will he! You are both human and with that you will experience a roller coaster of emotions which is absolutely normal and healthy. Just try and live every day to it's fullest and appreciate your blessings. I think a positive attiude is very beneficial! Your husband is very lucky to have you by his side. Remember your forum family is here for you as well!

I am glad that Nicole and Crystal were there for you, they are wonderful people and do all they can to make it easier. Any questions or if you need to vent feel free to let me know.
Stay strong and keep the faith!

 

[abbas child]

Joni, I am so very sad that you and your husband now have the definite diagnosis. I remember keeping it from my parents until every last possible test was done and nothing was found wrong. Then I went to my favorite local Neuro who'd been with me in the beginning, sending me to Hopkins, and told him what they found. I needed him to say, Yes, it's absolutely possible and now it's true, before I could allow it to settle in. It's a crying time, dear Joni. But then, you do find that life just goes on, as Barry and Ted have said, and after a while it's the new normal.

Early on, I rented all the screwball comedies we could find at Netflix and just went for laughing whenever possible. It helped keep us up while we couldn't find too much "jolly" in life. It's probably why I love the Forum Follies, for that matter. Sending you hugs, hoping that you will find comfort and peace.

Love,
Ann

 

[Lavender Lady]

Joni, My husband said the same thing about me it brakes his heart. I am sorry you have to go down this road. Allow yourself to grieve and your husband too. We are here for both of you.

Rox

 

[Sequoia]

Joni, my heart goes out to you and your husband. No matter how much we try to "prepare" ourselves to hear those awful words from the doctor: "Yes, it is ALS", your whole world changes in an instant. I will never forget the day I heard those words from my neurologist with tears in his eyes. It seems so unreal, and denial is like a soft blanket that God gives us, even after the diagnosis, just because we are such frail human beings, and cant handle too much "reality" all at once. I also will never forget the day I got brave enough to come on to the Forum for the first time, feeling so all alone. Wow! What a blessing. I assure you, every single one of us is with you on this journey! Anytime you need to grieve or scream for that matter, we are here for you. I also wanted to share that I found a hidden gift in this diagnosis too. All of a sudden, what really matters comes to the surface, and the rest of it fades. Love, family, friends, deeper relationship with God, giving and recieving, the beauty of the earth, beauty of being alive...all becomes so much more precious.
Know that I am praying for you!

 

[brooksea]

Sorry, Joni! Very sorry!

 

[Miss]

We are 6 1/2 months out from diagnosis day, and it still seems so unreal. his forum family will be here with you all of the way. I am so sorry.

 

[tdamess]

so sorry it is such awful news to get , like a punch in the stomach been a little over a year for my son , i have settled down now , searching the computer constantly has slowed down a lot , not much more to learn so it will get better mentaly and you will get a little stronger , then you will have good days , and trying ones but we are all here for you

 

[joni51]

You are so right Barry, by the way, Bruce is bulbar too! Hang in there Barry!

 

[joni51]

Thank you All! so much for the kind words, the hugs, the prayers, but most of all for just being here and listening and responding, and simply caring! You all have hearts of gold! God bless each one of you and your families as we all are going through this terrible disease.

 

[Phil M]

I'm so sorry about the DX. Take it day by day for a while.

 

[sharona]

Hi Joni,
Sorry to hear the diagnosed is ALS.So sad .Larry was told that by his 2nd neuro on his first visit.Then the doc changed his mind & said he doesn't know what is wrong but it is MND of some kind. Life does go on. We may get sucker punched again just praying that he doesn't. Prayers for your family, God loves you all & so do we.
Sharon