Still in shock

[blufftongal]

My husband of 50 years has just been diagnosed with ALS. He has had symptoms the last 3 years. First started with fasciculations. I truly believed it was nothing. At that time doctors still had no true diagnosis. These last 3 months his symptoms are getting worse. I was so much in denial I hadn't noticed the muscles in his hands fading away. I feel so lost and confused. Where do I start, who do we see? We live in SC and we went to the Mayo Clinic in Fl. I was still in denial up to that time. We don't live near our children, so I will be his sole caregiver. I am truly grateful for joining this group for support.

 

[Lkaibel]

I am so sorry for your husband's diagnosis. First, you both need a little time to absorb this. Next, when you are ready read the newly diagnosed stickies here - lots of good information. My suggestion would be don't rush yourselves. Don't read tons of posts here just yet.

The shock is huge, and depending on how the diagnostic process went is different for each of us. If you want to do something right now, I would say first assess what you would like to do together while you still can. Next, get into the financial planning, home modifications if needed, etc. My personal experience was that until we reached about 6 weeks out from diagnosis, we were not up to "doing" much. WE did have a few nice weekends out of town, but nothing to challanging for decision making.

My thoughts are with you. My husband was diagnosed in June.

 

[pittsburghgal]

Blufftongal, I am so sorry to hear about your husband's diagnosis. I remember the shock and despair that my husband and I went through initially. It will get better with time and you will find a great deal of good information here and people who really care.

I am also the sole caregiver for my husband because almost all of our family lives in states far away from us. It is really tough but I found that this forum helped me a great deal. We will be here for you.

Sharon

 

[soonerwife]

So sorry to here about your husband's diagnosis. It is a huge blow. We have all been there. You have found a great place for support.

 

[tripete]

I am 50 also, was diagnosed at 48. I wrote this to another newley diagnosed, maybe it will help.

The mental part of this ride is the hardest part. We can do very little to stop our bodies from slipping away. As they fade into uselessness it is hard to find a purpose for our existence and some of us can become bitter and angry or just depressed to the point of despair.

You will hear a lot about "fighting" and "not giving up" as you visit doctors, friends and acquaintances. People tend to think of ALS the same way they do cancer in that there must be some treatments that we can "fight" through to make a miraculous cure. But sadly, there is no such avenue. We can do very little to nothing to stop the physical deterioration that we face. Yes we can and must avoid falls, not get sick, prepare ahead with equipment etc... But after all that the beast is still raging and death is knocking at the door and will not be denied entrance.

I have resolved that while ALS is ravishing my body it has not yet consumed my mind. I can still think and I can still in some small ways act upon those thoughts. For me fighting means serving with love my family and closest friends. I cannot do so many things but I can smile at my wife, tell her I love her, and support her emotionally. I tell myself that I am not the important one here -she is.

Yes I need her to care for me more and more each day. As she does I see the mental toll it takes from her. So, I fight by trying to make this nightmare as easy on her as I can. I try to make her smile. My last wish for her will be that she finds a way to be happy when I am gone. So I will fight ALS by trying to make that wish come true while I am still here.

 

[GregK]

Blufftongal, is your husband a veteran?

 

[swalker]

Sorry to welcome you here, but welcome nonetheless.

I will echo some things that have already been offered:

1. Give it a little time to sink in and to get over the initial shock.
2. Live each day to the fullest. Do what you can now. That includes travel and visiting/hosting relatives and friends.

Wishing you the best.

Stee

 

[Aussiemndcarer]

Blufftongal, welcome! So sorry to say that. This forum will be so helpful,but so will a desire to live to the fullest.
I lived in denial for at least 8 or so months. I was sure that the drs had got it wrong. Alas,it was not to be. We took our time and decided what we wanted to do. ( you will get heaps of advice) looking back, I'm glad that we tried to stay " well" for as long as possible . We gathered wisdom from those who offered help and then we escaped for 4 .5 months,camping and just being together, travelling. It took a lot of organising but we did it.now we have great memories to look back on. This forum will help you through the journey.

 

[blufftongal]

Thank you all for your encouraging posts. Today he said it would have been better if he wasn't told about it. And he thinks he is going to live 20 more years. I wish the doctor at the Mayo Clinic explained in detail what lies ahead for him. He doesn't talk about it. He is in denial. I need advice from people who understand. Do I sit down with him and explain the seriousness of his disease. Or should I have the doctor explain. I thought he fully understood the doctor at the Mayo Clinic. We won't be seeing a neurologist until Jan.

 

[Nikki J]

How recent is the diagnosis? if really recent he may simply need more time

 

[blufftongal]

He had a second opinion that confirmed ALS last week. He is not a Vet.

 

[Nuts]

Blufftongal, I am so sorry. We always hope for a different opinion.

I remember my world spinning when I realized what we were up against. When I look back I see the early symptoms 3 years before-including muscle cramping and fasciculations. It wasn't In my gut I knew something was wrong, but it wasn't until he started falling that my husband sought and got his diagnosis. I'm glad that I didn't know three years earlier. As it was, we just had enough time to get our act together and get the house modified once reality sunk in.

Your husband may not be able to face the realities of this disease. Unfortuantly, that leaves it up to you to make preparations so that you can care for him at each stage. We also found that our medical team didn't spend a lot of time going over the details of what was going to happen-sometimes it can be too overwhelming. I found reading in chunks was the only way to absorb it all, and most of what I learned I learned right here, reading current and old threads.

How are you holding up? How did your husband take the confirmation?

We will be here for you.
Becky

 

[lgelb]

So he just got the confirmation last week. Give him some time to process, as he probably spent the time after the initial diagnosis in absolute denial.

Best,
Laurie

 

[scaredwifetx]

For some it takes a while to get over the shock. My husband is one of those. He went thru stages in the beginning. At first he was angry and did not want to go on. After the shock wore off he didn't want to talk about ALS and refused to learn anything about it. He stays positive this way and leaves the decisions and learning all up to me.

The forum has been a huge support line for me and there are times when the help we needed was here and not with the doctors. As you can see from the wonderful replies to your post...your questions and concern will be answered and with honesty.

I am so sorry you are on this journey. I also suggest you contact your local ALS Association. Let them know that your husband was just diagnosed. They will help in so many ways. Give yourself some time to deal with the shock. The first month is so hard and it crushes us if we are not very careful. There will be a lot of questions and support needed but I promise you that everyone here will do their best to help.

Hugs!

 

[adrivtham]

My husband was diagnosed back in February/March of this year. He was convinced that his progression was slow but the reality has hit us both.
I wish he had seen the necessity of taking care of things faster, now I have to deal with everything and sometimes I feel like I can't go on, but I have no choice.
My advise is hurry up and take care of things while you both can be engaged in making the decisions.
I really think in my case I will feel better once we have things in place as modification in the house to make easier to take care of him, and the vehicle.
I wish I had words to say hey things will improve, but it does get harder.