And So It Is...

[Lkaibel]

We were diagnosed this morning. As I think some part of me has actually known since April 2nd when he came and showed me that his left toes did not rise up as high as his right (drop foot) my husband was told he has ALS.

We had a whole clinic day actually, and Brian is very interested in clinical trials and discussed some today at the clinic. We are getting genetic testing, saw the social worker, scheduled our next appointment, got info on the ALS registry and the ALS association. We had very frank discussion of this disease, what it means, and how it progresses.

Brian is very convinced he will be a slow progressor. I know his age mitigates against that, but it could just be. Or not. Either way, we will cope. People say ALS means no hope. I disagree. We can hope for slow progression, hope for staying financially intact, hope for the best quality of life for both of us as we deal with this. WE can even hope to help others through participation in clinical studies.

Don't get me wrong. Today is the day we lost a near perfect life officially. It has been a dream in so many respects, we have been so blessed. As I said though we knew it was coming. In some ways the day the Dr. first said "maybe", May 17th was the worst. I was in so much pain and shock then. I am in some pain and shock now, but it is different.

I am glad also that we can be confident in the Dx. We went to Dr. Walk at the University of Minnesota, and the respect and kindness we were shown today was wonderful.

I started reading stickies here on planning etc and will go back to them as I am able/ready.

Thank you forum friends, I am glad I found you,

Oh, and to the DIHALS who may be reading please, please, please remember this is in all probability not ever going to be you! More on that later. Love and blessings to all.

Lenore

 

[soonerwife]

So sorry! We are here for you as you know!

 

[Nuts]

Lenore, I'm so sorry--we always hope there is another answer. I'm glad that you're here, and we will be here for you. I understand completely about having the near perfect life ripped from you, but there is, as you apparently know, life after diagnosis. It's just different. Take your time, but come back when you are able.
Becky

 

[diagnosed2016]

I'm so sorry. I know what you mean that the "maybe" is the hardest/most shocking part. When we got the official word I already knew. I'm sorry you are part of this club, but it sounds like you have a really positive outlook, and I'm sure that will help for your family.

 

[Margesmn]

Welcome Lenore. I'm glad you found this forum. It has a great source of information and support for me. You have a wonderful attitude and I'm sure it will serve you well.
Sending thoughts and prayers your way.
Margaret

 

[affected]

Sorry to welcome you officially to the family Lenore.

Don't take his age into account, it doesn't seem to mean anything for progression speed. Just take a day at a time.

You are right, this is still a shock, but not as much as the initial one, so you are moving through the shock stage now.

My Chris was unofficially diagnosed by a speech pathologist who got us into an ALS clinic a month later for the official diagnosis. I was similar, the big shock was when a non-doctor (who knew her stuff!) first said those words. A month later it was still a shock but not as big as the first shock was.

You have your hopes in the right places. I believe acceptance is the key to living well with ALS and not letting it win by taking what time we have. No one knows how much time they have, but you know now to live every moment to the fullest!

 

[Lkaibel]

Thanks everyone. I know that time will come when I need to get in the car, drive off for a few hours and scream and cry somewhere secluded. It will hit and that's okay too.

I think the night I knew for sure that Brian had ALS was actually June 15th when he demonstrated the weakness in his left hand. I think for a lot of us, we knew for sure at some point before we heard the big words.

I see it like this, I will be alright and so will Brian. First he will be alright with me, and then with God.

 

[GregK]

I think for a lot of us, we knew for sure at some point before we heard the big words.

Yep.
The official Dx was simply the proverbial light at the end of the tunnel.
But this time the light _was_ on the oncoming train.

 

[njk0407]

So sorry Lenore While true that most of us had our suspicions before being diagnosed, it still is a major shock when it in fact is confirmed. I can tell you personally that the shock does wear off. My husband was diagnosed officially 3 weeks ago, but we first were told 6 weeks ago. The first time was the worst, but the 2nd time is hard too, just in a different way. The others are correct when saying the shock will wear off. It does take some time, but I am just now 6 weeks later, feeling like the fog has lifted. I feel like I've lost the past 6 weeks and my therapist told me today that I was experiencing "shock trauma". Yesterday is the first day that I truly feel I've reemerged. You will most likely mourn your losses for the future that you thought you had with your husband. It's ok and I promise you there still will be a future. Maybe not the one you planned, but there is still time to enjoy life and each other. I truly believed I would never experience joy again and I can honestly say that as of this very moment I am happy and so looking forward to the good days we still have together. You will do this too. It's not all sunshine, but you will be able to cherish special moments and days that are to come. This forum will be your life line as it has been for me. I wish you nothing, but good thoughts, courage, and many special days with your sweet husband

-Nikki

 

[lgelb]

Sorry to hear it's official, Lenore. It sounds like you and Brian are on a good path toward dealing as best you can. Of course, he is welcome here as well if he chooses.

Best,
Laurie

 

[vltsra]

Dear Lenore, so sorry you are joining this group. My husband's diagnosis was actually very quick - his first visit to a neurologist was in September and after one EMG and he received the bad news in October. Second opinion in February. I think I was living in a fog and consumed by depression for the first 4 months, I could not function. You might consider a low dose of anti-depressant, it really helped to lift the fog for me. I am so thankful to have found this forum, no one outside of this experience can really understand.

I hope you have a slow progression. My husband has been told his is a slow progressing form, and 8 months after diagnosis his left hand and forearm are just a little weak, although he experiences twitching and general fatigue. I don't know your husband's age, but mind is 62, so it is possible that your husband's progression will also be slow. He is still somewhat in denial. I am trying to be understanding and plan things so that he can have wonderful experiences in life, things he has been putting off because he has been so focused on his business. This year we saw the superbloom in Death Valley, went to Big Bend, and up to upper Michigan. These are things he would not have done with me otherwise.

We are trying methylcobalamin injections. I am encouraging him to consider clinical trials and I think some of the PALS here have had some good results. They are all very brave.

V

 

[Lkaibel]

Overall, our diagnosis was quick by ALS standards. We were fortunate in that for sure - three months from first big symptom to Dx. I would defintely consider meds if I felt really depressed for too long.

Thanks for the comments on age and progression - very helpful. I keep reading older age is a factor in faster progression, but seems like many real life patient stories are not bearing that out.

We are planning fun things too - we just planned a three day trip up North tonight. It has to be all about our quality of life together in the here and now. I thought of us before in terms of a decade at least, and I think now that even six months is too long to take for granted, maybe even three months because who knows what it will all be by then, We will live in the present.

 

[affected]

A tip about antidepressants is that if you start them early you will likely need lower doses for a longer period. Think of it like pain - if you take some mild pain relief when the pain first starts it will usually work. If you wait til the pain is very high you will need hefty pain relief to get through the pain barrier. Most also take 3 -4 weeks to begin working, so if you wait til you feel like you can't take it anymore, then you still have to get through that first month til they start to work.

There is nothing wrong with using antidepressants, many of us CALS do.

Age doesn't relate to progression. I've known lots of PALS in their 70s and over who lived for years, and I've known plenty well under 60, even under 40, gone within months.

Just like onset area of symptoms varies, progression rates vary and there is no research that can show why as they still don't have a cause.

Some PALS also go in leaps and plateaus, some don't.

That's where a day at a time and be grateful for what you have in each day works best regardless of how long you end up having. Good idea to plan some trips now. Think of it this way - if you do some great things now and he progresses fast, you will be so glad you did. If he progresses slowly, you get to do even more great things together

 

[scaredwifetx]

I am so sorry you have to be here but I totally admire your strength, positivity and your hope. I remember our first "probable ALS".it gutted me and broke my heart. You are doing great considering having your life completely chaanged. You will get a lot of support here.

 

[starente15]

So sorry you have to be here. You'll get a lot of support, advice and suggestions if you want it. This group was invaluable to me in dealing with my father's diagnosis. Best wishes. Christine