Second opinion confirms MND... So many questions

[grgizi121]

Second opinion Thursday evening confirmed that my husband 41 has MND

It doesn't seem real. It's all happened so quickly I don't understand. Everything I have read said its takes ages to get diagnosed. I guess he first saw GP 10 months ago, and was dismissed as clumsy. But its only been about a month since we thought there might be something serious wrong

Now waiting for specialist clinic to contact him, and Gp to agree 'shared care' arrangement before he can start riluzole

I have so many questions and concerns. Will our children 4 & 1 even remember their father? :-(

He seems so fit and strong and feels fine apart from his one arm, random cramps and general clumsiness! Hard to believe such an awful disease is at work

Please tell me I will start to learn to deal with this and wont always need to fight the urge to cry every time I see him care for our children! He is such an amazing father, I've always been so proud

 

[Nikki J]

I am very sorry that your diagnosis was confirmed. Of course you hoped for anything else. You are both in shock and grieving now but it will get better and you will go on with life. It is one day at a time for sure. I pray he will be a slow progressor. There are trea tments on the horizon. Try to have ho pe. It is hard indeed that your children are so very young You will be in my prayers
Love
Nikki

 

[vickim]

I am so sorry for the confirmation. I was hoping it wasn't. But it is what it is. There is still a lot of life to be lived and you will make sure it is all good. Yes, you will grieve and it is okay to cry. You can't keep it all locked away, that is not healthy. But you will learn to work with the new normal. I am sending strength and love your way. {{{{HUGS}}}}! We are hear for you and your hubby.

 

[Cricket]

Sorry to hear...

Do what you have to do -be angry, be scared, cry... but don't stay there. Move on. Remember to laugh and to be happy. Your kids need to see you and your husband happy.*

My advice is...if I may -Slow down. Stay in the present moment and learn to savour it. Keep your world turning and stay focused. Don't let the mind play tricks on you by trying to predict the future. Take the bad and turn it into something good. Life was not meant to be easy. Easy equals borrrring!

All the best on this journey

 

[pearshoot]

look at some of the things some are doing that they believe extends life expectancy, maybe consider one but stay in it for the long haul. this provides a great measure of hope. there are some who believe nothing will help, don't fall in that trap, it only leads to despair

 

[mbmurray]

I have so many questions and concerns. Will our children 4 & 1 even remember their father? :-(

He seems so fit and strong and feels fine apart from his one arm, random cramps and general clumsiness! Hard to believe such an awful disease is at work

We have some very similar story lines... I am 42 and was diagnosed with ALS this past Jan. I have 2 small children ages 7 and 3, and I feared the same as you mentioned above.

My first symptom was almost a year and half ago, and so far really only my right arm and shoulder are the most visible and apparent affected body parts from this crappy disease. I am still working and can still do most things as before...

So my advice, is take time to cry and mourn now, but you will get over that phase, live life to the fullest ( I am, spending as much time with my kids) try and do anything to kick this thing. ( I am taking part in drug trials, modified my diet, etc.) Let me know if you would like to chat...

 

[jodierrn]

so sorry of the diagnosis. I'm a mother of 4 children, I was told I had ALS this past month. I started to complete photo journals with placing as many photos of me in the book. My girlfriends would like to do a video diary/message, but I think its too soon for me to that. I would be a crying baby. I plan to write letters to the kids, to be given on important occasions. My thoughts are with you at this difficult time. I hope you can take lots of photos, and journal stories so they will have memories of their Dad.

 

[ottawa girl]

Hearing it the second time, I think, in many ways, is worse than the first. Everyone here said it all. I share in your sorrow.

Remember that you are not alone in this mess. Slow down your mind, if you can. I'm sure it's going in many directions. You are a team. You will make decisions together. Believe it or not, once the shock of it all sinks in, the rhythm of life does return. Of course, you'll be dancing to a new tune.... but, please do dance. Let your family be uplifted by the love and support of your family and friends. You may be pleasantly surprised by the graces, yet to come. I sure as heck was.

 

[ECpara]

So very sorry for your husband's diagnosis. It will take a few weeks to get through the shock, but life goes on and you will smile again. Find a "happy distraction"! For us, after a few months of pondering, we decided to move near the grandchildren and build a new house. It has consumed us and happily, has given us something fun and positive to concentrate on. Trips with your children would be a great way to distract, especially now while he is still fit. We lean on God, a lot, and he has given us such peace. I will pray for you and your family.

 

[Nighthawk]

I am very sorry about your husband's diagnosis.
But, diagnosis is just part of the picture as there is life after it.
It's okay if you just want to cry, be angry and all that, we surely understand it. It's difficult to deal with something like this at the very beginning
The trick is to get past that point and try to stay positive. Your attitude will surely help your husband deal with this disease.

Just don't forget that whenever you need help, advice, or a shoulder where to cry on, we are here for you, always.

Take care.

NH

 

[Barbie]

I am so so sorry for the confirmed diagnosis...you are already on the right path being here for support. get in with an ALS clinic to get support from them. lots of drug trials and new things happening. perhaps your husband would come on line too--he is probably having a tough time too.