Please help-husband diagnosed als

[njk0407]

Husband diagnosed yesterday with ALS. I'm LOST!!!!! I feel like I want to die!!! We have a 1 year old and a 4 year old. My husband is only 36! I need help!!!!! PLEASE I DONT KNOW WHAT TO DO!

 

[Nikki J]

I am sorry. Very.

Now take a deep breath. He is not going to die from this instantly. There is life to be lived and you are going to pack a lot of joy into whatever time you are granted

Was the diagnosis made based on clinical exam and EMG results? Are you seeing a neuromuscular doctor? Getting a second opinion? All of those things are standard though, honestly, I am not surprised after reading your earlier postings.

No doubt this completely stinks but we have all gone through it and come out the other side. Give yourself time to grieve. Forgive me for asking, but it is hard to tell, do you normally handle stress well? If you are fragile anyway do you have a counselor to help you through. Even if you are normally strong it might be something to consider later.

There is a LOT of information here. Now is not the time but when the shock wears off ( and it will) there are informational stickies at the top of the General discussion section. If he is a vet there is one at the top of the military subforum

 

[Lixen]

Yesterday was the first neuro consult following his anterior cervical fusion, correct? Has he had an EMG previously? Where was he seen? This is an incredibly quick diagnosis. I'm very sorry to hear this. What exactly happened at the apt yesterday?

 

[Nuts]

We understand exactly what you are feeling. I'm so sorry to have to welcome you here, but you've found a very supportive and informative environment--please know that you've found a family that understands.

This diagnosis is awful and the first few days, weeks, and even months are the worst. Pain, anger, despair, fear, and so many more emotions will squeeze the air out of you. We will be here for you.

Try to take a deep breath. It's not easy. When you are ready, read through the stickies. There is a wealth of information on steps to take and planning for this disease. There are also other CALS and PALS here with young children and I'm sure they will connect with you.

First question--is your husband a veteran? I ask because there are benefits if he is. Where was he diagnosed and are you being seen at or has he been referred to an ALS clinic rather than a regular neurologist. I ask this because the best care is at a good ALS clinic where he will see a variety of disciplines at the same time, rather than running around to multiple locations.

I'm so, so sorry, but please stay with us as this forum has been a lifesaver for many of us.

Becky

 

[njk0407]

He was seen at Raleigh Neurology and they did bloodwork, EMG, and physical exams. His speech is already different, and has weakness in left arm, hand, and now right leg. He's being referred to Duke.

 

[njk0407]

I want this to be a nightmare that I'm going to wake up from! I don't know what to do

 

[missbelle]

I just got hit with the same diagnoses for my mom, 1 week ago today. I also felt like I wanted to die. It was terrible. But each day I felt stronger and more ready to deal with this. Everyone is going to die eventually. We all have to deal with death of loved ones. You are not alone. I've been reading a LOT about misdiagnosis, and the often times people with ALS really have Lyme Disease. I am not trying to give any false hope, but it may be something you could look into and at least have it ruled out. I started a blog to document my feelings and struggle and research if you are interested. I'll be posting links I find, other options (I am totally not convinced of the ALS diagnoses, perhaps I am going through denial rather than utter despair at this point but it is all I have to keep me sane.) But know that your feelings with change. You will have good days and bad. Let it all out. Sob and weep and scream until you collapse if you need to. That helped me. We'll all get through it!!!!!!! Sending you hugs!!!!!!!!!!!!! YOU ARE NOT ALONE.

 

[Lixen]

I know it feels like you're falling off the the side of the universe, the fight or flight cortisol response is ever present the first few weeks - but it DOES subside. It isn't the end of the world, although I know right now it feels like it is. There is plenty of life yet to live and there is time to adjust.

I'm not surprised about his diagnosis, I did have my concerns but there was no point in speculating and adding to your already high anxiety. I was holding out for the best but you were on my mind all day yesterday and I kept checking for an update.

We too, started off with what presented as a localized issue in the arm/hand resulting in surgery, only later to experience foot drop. We were so naive, unlike you I had no idea the two could be related. I am a bit surprised they diagnosed him so soon, I wasn't expecting it on your first consult. Ours was done on the second or third visit. ‎In the long run this will benefit you as you can get a head start on disability & assistance.

You'll be in great hands at Duke, it's who we used. There isn't anything anyone can say or do that will alleviate your grief and shock right now, just know you won't always feel this way. That's a promise. It truly does get better and when you're ready we will be here for you.

 

[MyNexus2U]

njk0407,

I am so sorry that you find yourself here. Becky is right, try to take a deep breath and give the shock were off. I know right now even that is difficult to grasp, but it will and you will be able to start to think more clearly. My diagnosis was confirmed on Monday and it was a while coming and was not a total surprise but we still felt numb for the next few days. While my children are grown I have two small granddaughters that live with us ages 3 and 4. I know that this is not even close to your situation but they do rely somewhat on my wife and I for their basic needs and weighed heavily on my mind in the beginning and of course still do. There are a bunch of people on this site that can be a tremendous help when you are ready. I am sending you a HUGE WARM HUG and know that we are with you. We will be here anytime that you are ready!

Bryan

 

[lgelb]

N,
He is young, your kids are young, and it must seem inconceivable, this diagnosis. Give yourselves time to process as a couple, then as parents, before anything/anyone else.

Belle,
Please don't wave Lyme in front of the newly-diagnosed, in particular. Everyone who has an ALS diagnosis should get a second opinion from a specialist in neuromuscular diseases. Lyme will be one of the many alternative diagnoses considered. The research discussed here and elsewhere reveals that the prevalence of Lyme antibodies in PALS and the general population is the same.

Irresponsible, profit-oriented practitioners have implied otherwise, often wasting the short time and limited funds that PALS have to accomplish their personal goals. Unfortunately, ALS and Lyme are both areas in which dishonest hucksters abound, and so it's not surprising that some ingenious souls have combined them. I've had Lyme and my husband had ALS, so I'm pretty familiar with the differences.

Best,
Laurie

 

[JennyC]

I am so so sorry. I wish that I had words to soothe you, I am new to the ALS family as well. If you ever need to talk I am always here for you.

 

[Nuts]

I'm so glad that you are being referred to Duke. My mom was diagnosed with Parkinson's at Raleigh Neurology. I considered moving her to Duke but didn't do it until after hubby was DX with ALS. Same building for clinic days, different days!! Her treatment did not change when she moved, but we did get a LOT more information. You will be in good hands with D r . B e d l a c k. He is wonderful and his team will do whatever they can to make things as comfortable as possible.

Becky

 

[frankb]

Sorry, njk. We have all gone through the turmoil brought on by the initial diagnosis. Our local chapter of the ALS Chapter was tremendously helpful and we received tons of valuable info and support, including the importance of a second opinion as well as who should conduct the second opinion. Simply talking (and listening) to the great people at the ALS Assn Chapter set things fairly much on keel for us and provided guidance and information for what is available to our unfortunate group and how to approach the future. Our thoughts are with you during this very difficult time.

 

[scaredwifetx]

So very sorry that you had to hear those three letters. It is so overwhelming the first few days. I cried for three days straight. I could not imagine having small children. Give yourself some time to be angry, devastated and hurt. There will be time to take care of everything else. I can't say it gets better but you will find new and wonderful ways of dealing with the cappy hand you and your family were dealt. You are not alone and anytime you need support you can come here. Most importantly, take care of yourself

 

[njk0407]

Thank you all for your kind words and support. It truly means a lot to me. I don't want to be naive about this or live in a false sense of reality. I want to be prepared as possible. We are being schedule to see Dr Bedlack at Duke, but as of right now we don't have a date. Is it possible that my husband can maintain his current state WITHOUT progressing? His family truly believes he will not progress any further that he will simply stay as he is. Is that possible? He currently has minimal strength in his right arm and hand and his speech is off. He "seems" fine other than that. He clears his throat a lot and I'm worried that his voice will go completely. I'm scared to know the answers, but I want to be prepared. Should we be considering quantity/quality of life now? He's at work as we speak. I took today off. He hasn't missed a day since his diagnosis last Thursday. I've never been so terrified or sad in my life. Life insurance, disability, medical insurance??? Any advice? We only have coverage through his employer. If he goes on disability now it will end in 1 year and then his LTD will pickup, but ONLY for 6 months. I NEVER imagined that I'd have to worry about LIFE INSURANCE like this. Any advice/suggestions would be greatly appreciated. Thank you!