My husband was diagnosed with ALS today

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hawroe

Member
Joined
Sep 22, 2012
Messages
15
Diagnosis
09/2012
Country
US
State
WA
City
Tacoma
My husband (ryanw) was diagnosed with ALS today. We had suspected it for a while so it was no big surprise but I still held fast to that little flicker of hope that it was not ALS. It is so hard when the doctor confirms your worst fears and that flicker is so abruptly extinguished.

Our daughter is only 11 and we decided to tell her about the diagnosis today. She has seen us in tears over the past few weeks and knew that Daddy had something wrong with his leg. It was only fair to her to let her know what is going on and that it will not get better. It is so hard to hear your child say "I don't want Daddy to die." The only thing I could say was, "Neither do I."

We did our best to reassure her that Daddy was not going to die right away. We will have some warning and in the meantime, we have an opportunity to build good memories.

I am trying to remind myself to take things one step at a time but wow, it is overwhelming to think of life without my best friend and the things he will likely miss with our daughter. I know that not everyday will be this hard but today definitely sucked!
 
Welcome to the forum. Ahh, I remember diagnosis day all to well. Two years down the road, and I am still hoping for that miracle. Some days feel still like the first - shell shocked and in denial; others are not quite so bad. I am so sorry you have to deal with ALS. This forum will help prepare you for things to come; just read, read, read, and then ask any questions you have.

I see you are in Tacoma. The ALSA Evergreen Chapter is nearby in Kent, and can help guide you in whatever you need. WONDERFUL people there. They also have support groups to connect with. I encourage you to contact them right away.

Many folks on the forum also have young children. Our three are all in their 20's and that is hard enough. I cannot imagine how frightening it is for the younger kids. Just keep making those memories!
 
I am so sorry for your pain. I remember the day my husband was diagnosed and how it confirmed my worst fears; that was almost two years ago. It sounds like our husbands may have started with similar symptoms (my husband's was drop foot in his left foot). Of course we have had to adapt and my heart breaks a little more every day but the one thing ALS has given our blended family is time to build relationships and memories . I hope that you husband's progression is slow. My husband was able to continue to work out (elliptical, recumbant bike, weights - not treadmill) for a year-and-a-half following the onset of symptoms. We travelled to the Canadian Rockies, ate in some great restaurants, and this year were able to go for "walks" and enjoy the sunshine as my husband has a power wheelchair. My thoughts will be with you through this journey that no one should have to take....
 
Welcome and I'm so sorry! Ask, ask, ask! And come to tea...a place where we unwind!

Jen
 
Just know that so many of us are remembering that fateful day when we heard the diagnosis, and we are thinking of you and your family. Many thoughts and prayers are with you.
 
Thank you- there is some comfort in knowing we are not alone.
 
Prayers going out for you and your family as you accept this diagnosis.

Life does go on. Do the things you've always wanted to do. Appreciate each and every day you are given.

Enlist your child's support in your care. They too like to feel like they are "doing something"

Be proactive in getting equipment and adaptive devices, making the necessary changes to your living environment.
Get them early, get used to having them around, learn to use them before the need for them is extreme.

Did you get a script for an AFO (ankle foot orthotic) for the foot drop? If not, get one. Falls happen "for no apparent reason", no matter how careful you are. It's actually because of the weakening muscles. The AFO or "brace" will help to prevent falls and keep you walking safely for longer. They will also cut down on some of the fatigue that comes from
having to use additional muscles to "step higher " to get those toes off of the ground

Falls can lead to serious consequences or could be deadly.

Good luck to you on this journey and know that others are on it with you and willing to lend a hand.
 
He got an AFO yesterday- we will likely get a carbon fiber one in the near future as it will provide a little stiffer support and prevent the knee from buckling. He uses a cane outside the house.

Thanks for the advise, I am sure I will need TONS more through this process.
 
Sorry about your husband's diagnosis. It seems you're handling things well for now. I'm glad your told your daughter. Our girls were 18 and 24 when Bob was diagnosed and we told them the same day. I won't forget that day either. Try not to think too far ahead in the future. Enjoy today and each day you have together. It's not an easy road to have to take. Stay informed and two steps ahead of progression and as others have said, you will find guidance with your ALS Society, Clinic and this forum. Thinking of you. Yasmin.
 
Welcome to our club. Its true. I read your post and it brought back the day we told our boys. It was one of the saddest days of our lives.
My husbands started in his left foot. Falling. Tired. Its been over three years now since it started. He still walks (with a walker) still eats..still talks. Its just now starting to affect his hands. This forum is really the only place I feel understood. Its been great for me. I hope for you to.
 
Welcome to the forum that has given me so much knowledge and support and it has helped me realize that I'm not alone.
 
So sorry to hear of your husbands diagonsis..i remember ours..I went numb..then i kep thinking he was going to die right before my eyed..Now over a year later we are adapting to change on a daily basis.I no longer am panicked but we try to make each day count and embrace the good days and deal with the bad.It is a roller coaster of emotions but i believe staying in the present and attempting to be positve will help!
hugs!
 
Welcome to the club no one wants to be in... I remember the utter panic and disbelief I also felt. The uncertainty is the worst. Hope both you and your hubby continue to come here.

I think the best advice I got from a friend I made here (Abbas Child) was to not push yourself to hard to continue doing something at the expense of other muscles. In her case, she tried walking too long and damaged her knees and hips. I stopped trying to walk with the rollator as it was hurting my shoulders too much, hanging on for dear life. Get the equipment before you need it, so the day you say "ok, that's it!", you have what you need.
 
Thank you everyone. I am definitely feeling panic in all this. Waking up in the middle of the night with my brain racing. Concerned about logistics with our daughter with school and activities, finances, how my job will be affected, and of course the reality the my best friend won't be here and I will be left to go on and raise our daughter without him.

My husband, of course is worried about all of us. He is upset that people are upset because of him.

I keep trying to remind myself that this does not happen all at once and it will work out. People keep telling me it will be OK and I want to shout back "No it won't. A future without my husband is NOT OK!" It will work out but it is not OK.
 
I agree. It is not ok. Not even close. Take it one day at a time. Its all we can do. The spinning head does ease up a bit. Some days are very good. Some..not so much. We'll be here for you.
 
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