Where to start?

[madam419]

Hello,

My husband (34) was diagnosed two weeks ago. While I have been watching the progression over the last 4 months and have been able to somewhat prepare myself, I too am at a loss. I have been with this man since we were in high school, we have a 5 year old little girl, and are in complete and utter shock as well as at a loss for what to do and where to begin.

He went to the doctor in June for what we thought was a herniated disc in his lower back. After the initial lumbar MRI they did a lower body EMG and thought that the cause of his drop foot and muscle weakness was due to a pinched perennial nerve in his knee. So the doctor sent him to Houston. That neurologist took one look at him and after about 10 minutes of the routine strength tests and hearing that my husband has had problems swallowing and breathing over the last year referred him to a Neuromuscular specialist. Over the last 2 months they have done 5 MRI's 2 whole body EMGs, countless blood tests, a spinal tap, Genetics testing, Pulmonary Lung Function tests and the barium swallow test. We received the diagnosis of MDN with a very high probability of ALS, we will get the final diagnosis in the coming weeks.

The hardest part is we have no clue where to start, or who to turn to. His family is quite a bit more religious than we are and are in complete denial that God would allow any of this, and are convinced that he is healed after a prayer vigil they had the other day. While I wish this were the case and that simple, I also am a realistic person. My family lives 7 hours away and while they're in shock and supportive, they're also not able to be close.

 

[GregK]

I'm very sorry you're here but you've come to a good place to start.

At the top of the General Disscussions About ALS/MND forum you'll see some 'pinned' posts called Stickies. One of them is titled I've just been diagnosed - what do I do now?. Start there.

Important: is your husband a veteran?

 

[madam419]

Greg,

No, my husband is not a veteran. As far as we know there is no family history either. Doctors believe it's sporadic. :/ Thank you for the information.

 

[Nikki J]

Sorry to welcome you.
Do read the relevant stickies that Greg suggested. They were written by our members who have/are living this. It is a hard diagnosis and very difficult when you have a child. There are others here with young children.

You will find our CALS ( caregivers for PALS[person with ALS]) a supportive and generous group. As well as this subforum and the general discussion subforum you will probably want to read and share in the CALS subforum
Do post on the CALS rollcall
Besides the stickies a search can yield much information. There are threads full of good advice much of it from people who are no longer on the forum. And if you still have questions ask away!
And we would like to have your husband join us as well

 

[LifeEnthusiast]

So sorry to welcome you here. I can imagine how devastated and overwhelmed you both must feel, but you'll find lots of help and an abundance of support from this forum.

Cee

 

[scaredwifetx]

I am so sorry that you are here today. One of the first things that I would suggest is to contact your local ALS Organization. You can go the main ALS organization site and it will direct you. We had someone come out to visit in the beginning. They were so very helpful. they gave us lots of info, tapes, contacts and answered all our questions. They can tell you how to plan and even help with loaner equipment if needed. This diagnosis is heart breaking and overwhelming but there is support from the ALS assoiciation and this site is full of knowledge and support. Between both this forum and hte ALS Association, they have kept me sane through the early stages of this. You will also want to be set up for the first clinic that you can get in to. It is also a lot of help in the beginning. My thoughts and prayers are wtih you and your familly.

 

[madam419]

Thank you all so much for the information. I new to this whole forum thing, so be patient with me.

 

[LifeEnthusiast]

I'm still learning my way around here too. No worries. What I have learned is no question is dumb and members are very generous with their time, patience and knowledge.

 

[swalker]

What I have learned is no question is dumb and members are very generous with their time, patience and knowledge.

That is exactly what I have found. What a wonderful place to be for everyone that would sure rather be someplace else.

Steve

 

[affected]

I'm sorry to be welcoming you here madam.

You will find lots of support here as you, take your time and just read and participate in what works for your needs.

 

[Nuts]

I am so sorry to welcome you to our little family. Thirty four--so young. We understand the shock you are feeling, and there are even people here who have young children. I hope they speak up and give you their shoulder in the weeks and months to come. Not that the rest of us won't, but just as only people living with ALS really understand, I'm sure that young children add an entirely new dimension to this journey we are all on.

I see some wonderful advice already posted. By all means, read the stickies and know that they are very current. You might also read though both current and old threads as you have time. Also, ask anything and know that someone here will answer or point you in the right direction to find what you need.

Your husband's parents--let's hope they face reality at some point soon. When I ask God why us, I always hear "why not" coming back at me. Bad things happen to wonderful people all the time all over the world. Perhaps at some point they will accompany you to an appointment; sometimes hearing the news directly from the experts helps drive it home.

If you haven't already, please contact the ALS Association. They provide loaner equipment for as long as you need it, and often provide grants to help with home care and other expenses in addition to information and advice.
Becky

 

[FamilialALS?]

Welcome madam to the group. Sorry you have the need to be here but I'm sure you're already feeling like you're in the right place to help navigate your family's path through ALS. You have a great pool of smart, kind, and resourceful people here to learn from and vent to. I found the search function really helpful in the beginning.

 

[affected]

When I asked why us, I always hear "why not" coming back at me. Bad things happen to wonderful people all the time all over the world.

That is exactly how I looked at it - why should we have been the only ones not to have bad stuff happen. If you can truly embrace this, it does help to deal with acceptance and getting on with what you have while you have it.

 

[affected]

would love to know what the mod word was in that last post I tried to send! sorry mods, you have so much better to do than check my posts!