New here

[HisWifeKate]

Hi, this is my first time to this site.. Though I'm not new to this disease. My husband was diagnosed in Nov2011 at 31yr old. We've been battling this for almost 2 years now.

I guess I just wanted to say hi and introduce myself. I'm Kate..I'm 27... I feel like I'm losing my mind and need an outlet for the feelings I've been struggling with.

This disease is such a nightmare. I still sometimes feel like this cant be real..My heart breaks so much for my husband Tony and his daily, hourly struggles. I'm losing my best friend and I can't help but feel totally abandoned by God. I'm angry.. I'm afraid... i don't want to live without him. I love him more than anything. I'm grieving so intensely... (Privately, I don't want him to see me crying all the time on top of what he has to endure.) I feel like I'm being robbed of all our hopes and dreams. Will our 8 week old baby get a chance to know her father? How many more kisses will I get? How many hugs..smiles..

I need a way to numb this pain.. I try to stay positive but today I feel like kicking and screaming and beating the doors of heaven to plead my case...

Anyone else feel like their voice isn't being heard?

 

[Annie's Phil]

Hi Kate, and welcome. I am dreadfully sorry that you and Tony have to endure this disease. I'm convinced that the only people who can really understand what it's like are those who are directly affected by it. That's especially the case for spouses, it's such a unique and total relationship.

I know what you mean about it somehow not seeming real. My wife Annie died shortly after your Tony was diagnosed. The whole time of her illness, and even now, it seems surreal. You know that it's real intellectually, but somehow you just can't get your feelings about it to line up with that knowledge. Again, that's one of those things that I don't think can be understood unless one has experienced it.

I will say that what sustained my beloved Annie and me was our faith.

You will find many sincerely caring friends here who will always hear you with real understanding of what you and Tony are experiencing and feeling.

Much grace and peace to you, Kate.

 

[Barbie]

Hi Kate, I am so sorry you are here. it is not fair at all that you are dealing with this! I really hate to hear about young couples facing ALS--it breaks my heart.

you are grieving and all your feelings are normal. having a new baby also has your body in and hormones in turmoil. I too, lost my faith, and I am ok with that. if faith in God helps you, good. if it doesn't, that is ok too. to help me, I turned to anti depressants and some counseling early on. there is no good answer on how to deal with this monster...you just have to do your best and hope for good days. after 2 years, you know this, but it is good you are here for strength and fellowship.

We have a member named Danjela who had a baby with her partner after he was diagnosed. she would be a good person to ask for advice.

 

[CasaHopkins]

Hi Kate,

Love and strength to you, moment to moment, hour to hour. Xanax helps me get through high anxiety moments. When we love people we sign up for the highest highs AND the lowest lows. In your house, with a beautiful new baby and a terminally ill husband you have tangible examples of both. I feel your pain and I'm so sorry about your husband and congratulations on your new baby. Again, love and strength to you!

 

[HisWifeKate]

Phil, Barbie, Casa,
Thank you for your responses. It's a little less maddening to not just hear my thoughts and fears echoing in my head. I don't know where I stand with God anymore. I'm afraid to even pray, lest I attract his attention and he decides to take my daughter too. It seems irrational I know but my spirituality has been tested beyond what I can bear. I hope I one day can find the peace I once knew in Christ but I now feel abandoned and alone.
I do find hope and love in our baby's eyes. ALS makes me feel like free falling, hurtling toward the ground.. And she is my parachute. Her presence has saved me. I fear I may want to curl up and die when Tony does.. But Francesca gives me a reason not too. I think this is why my husband and I decided to have her, in spite of his diagnosis.
I'm hoping we have years still so she'll have some memory of him. He is a great dad.. We would have had a whole gaggle of kids if he were healthy. We somehow pulled the damn short straw of life. :/

 

[CasaHopkins]

Don't worry about turning away from God. Allow yourself to feel angry at whoever you need to express that toward. I agree with you, people tell me all the time that I have to be strong for my kids, but I find the opposite to be true. My kids actually GIVE me strength. There were many nights at the beginning of this journey when I couldn't sleep and I would go get in my daughter's bed and as soon as I put my head on her pillow I would pass out. She gave me comfort just by her innocence and her ability to stay present in the moment and not worry about anything. I see my kids as physical examples of the love my husband and I have/had for each other. They are the best gifts he ever gave me. Love to you <3

 

[affected]

oh Kate, my heart so goes out to you!

I battle all those feelings too.
I finally met the love of my life only 3.5 years go, we were married only 2 years ago, and his symtoms started in earnest a year ago, so do I feel ripped off or what?

I don't have a religious faith at all, though I am a spiritual person, and so far I am just coping by believing that nothing in this world makes sense and I just need to take each day at a time and try not to let the bigger picture of this disease make me totally panic.

In some ways I determine to be strong, but you know I don't believe that we have to be strong all the time at all! My kids are also a wonderful support, both to me and to my PALS and his kids and that is a lovely feeling.
I have a brother that I can talk to really honestly and am going to start seeing a counsellor soon, though I'm unsure what will come of that, but I'm open to anything.

Believe me, we are all going through what you describe - it is the worst nightmare and there is no right or wrong way though it. We do what we have to in order to survive it, and this place let's us be honest about it and take support in.

I don't know how to numb the pain, I just know that I try to take a day at a time as trite as that can sound and let the future unfold as it will, I'm sure not rushing towards the future as it is only inevitable that it will mean my PALS continuing to degrade.

Keep posting, we are here

 

[joni51]

There is so many emotions as a Caregiver you go through. feeling totally helpless is one..I hated that I watched my husband slip away and there was nothing I culd do, and it is ok to be mad at God..he understands..just remember he is Good, he did not bring this awful disease on anyone. Love and Hugs

 

[HisWifeKate]

ALS has strengthened and then weakened my faith. The disease and God are so intrinsically linked for me because without a cure, we really only have hope and faith to live on. It hurts and comforts me when Tony tells me we can spend forever together in heaven. As long as I'm mad at God, he says, it's good. It means I still believe in Him. I guess I have too. My only hope (other than a miracle) is that heaven is real and Tony will one day wrap his arms around me again.
On another note, we had a good day yesterday. No major accidents, falls or messes. I'm starting to feel some of the panic lift, thanks in large part to this community. Even though I've never met any of you.. We share a burden that keeps me thinking of all of you and sending up heart whisperings (my spiritual communication since I'm not ready to out right pray currently)
Love to you all.

 

[Daisy2182]

I am so saddened to hear about so many people struggling with this disease. My mother has just been diagnosed. Her symptoms began 7 months ago. Slurred speech, weakness concentrated on the right side of her body... She was consconstantly falling down and unable to grip things. Doctors first said she had a stroke.. Then no stroke. One stroke turned into 2...they couldn't figure it out. 7 months later, several different hospitals, dozens of tests... And a diagnosis of ALS. At this point weakness has spread to her left side and her speech is steadily declining. My mother is 58. No family history. I am so angry. I am heart broken.. I can't accept it. It's especially hard when there's no explanation. No answer to my question 'why?' or 'how?' I spend my days on the Internet. Reading about the disease that's killing my mother, robbing her spirit and I just cry. I feel like I'll never stop crying. I read about how she's going to get worse... I think about all of the things I want her to be alive to see... My wedding, my children... I'm so angry at the world. I feel completely alone. My live in bf of 4 years is awkward and silent.. He doesn't ask questions, doesn't offer any words to comfort me. I know he feels completely helpless and probably doesn't know what to say. But that leaves me here, seeking comfort on the computer. I'm completely overwhelmed. I don't think I'm strong enough to get through this.

 

[ottawa girl]

Daisy -

I'm very sorry about your Mom's diagnosis. Your post hit home - I'm also 58, with sporadic ALS. There are no reasons - so I don't ask why. For me that's a waste of time - time I'd rather spend with my family and friends. I realize it's a hard journey, especially for my family, and I pray I don't suck the life out of them or take my husband down with me. Maybe your Mom is having similar thoughts?

Please, avail yourself of the assistance provided by the ALS clinic. There is support available to you and your family. It's important that you have a venting outlet. It's very difficult for some people to understand the impact of this or any other illness unless they are affected by it. Your boyfriend perhaps could attend a support group meeting with you once in awhile? You are truly not alone in this ( although it feels like it) and if you reach out, as you did today, you will find that many people will help you. As my sage 93 year old dad counselled me " one day at the time" - and so it is.

Your tears will ebb and flow. Make the most of today. Looking back or forward does not bring comfort in these unfortunate circumstances. Mindfulness allows for presence in the moment. It's more than a cliche.

There are many wholehearted and generous people on this forum. Please take the time to introduce yourself on a separate thread. You will be pleasantly surprised and emboldened by the cyber support available here.

I am so saddened to hear about so many people struggling with this disease. My mother has just been diagnosed. Her symptoms began 7 months ago. Slurred speech, weakness concentrated on the right side of her body... She was consconstantly falling down and unable to grip things. Doctors first said she had a stroke.. Then no stroke. One stroke turned into 2...they couldn't figure it out. 7 months later, several different hospitals, dozens of tests... And a diagnosis of ALS. At this point weakness has spread to her left side and her speech is steadily declining. My mother is 58. No family history. I am so angry. I am heart broken.. I can't accept it. It's especially hard when there's no explanation. No answer to my question 'why?' or 'how?' I spend my days on the Internet. Reading about the disease that's killing my mother, robbing her spirit and I just cry. I feel like I'll never stop crying. I read about how she's going to get worse... I think about all of the things I want her to be alive to see... My wedding, my children... I'm so angry at the world. I feel completely alone. My live in bf of 4 years is awkward and silent.. He doesn't ask questions, doesn't offer any words to comfort me. I know he feels completely helpless and probably doesn't know what to say. But that leaves me here, seeking comfort on the computer. I'm completely overwhelmed. I don't think I'm strong enough to get through this.

 

[Janie H]

Hi Kate,
Zoloft has helped me a lot. doesn't make me sleepy, I am suprised at how well I have handled this, I was having a nervous breakdow just a couple of months ago and didn't even know for sure what was wrong with me, after about 3 weeks on Zoloft, I went to the ALS clinic and got the bad news, I didn't shed a tear

 

[Daisy2182]

Thank you for your kind words. There is little time during the day when I don't think about my mom's illness. And what's to come. I feel like she's been robbed. She says she isn't scared, but I'm terrified. I feel myself going into depression. I honestly don't want to be happy. I feel guilty the rare moments where something does make me smile or laugh.. I feel so angry most of the time. I don't know what to do. Am I the only one?

Daisy -

I'm very sorry about your Mom's diagnosis. Your post hit home - I'm also 58, with sporadic ALS. There are no reasons - so I don't ask why. For me that's a waste of time - time I'd rather spend with my family and friends. I realize it's a hard journey, especially for my family, and I pray I don't suck the life out of them or take my husband down with me. Maybe your Mom is having similar thoughts?

Please, avail yourself of the assistance provided by the ALS clinic. There is support available to you and your family. It's important that you have a venting outlet. It's very difficult for some people to understand the impact of this or any other illness unless they are affected by it. Your boyfriend perhaps could attend a support group meeting with you once in awhile? You are truly not alone in this ( although it feels like it) and if you reach out, as you did today, you will find that many people will help you. As my sage 93 year old dad counselled me " one day at the time" - and so it is.

Your tears will ebb and flow. Make the most of today. Looking back or forward does not bring comfort in these unfortunate circumstances. Mindfulness allows for presence in the moment. It's more than a cliche.

There are many wholehearted and generous people on this forum. Please take the time to introduce yourself on a separate thread. You will be pleasantly surprised and emboldened by the cyber support available here.

 

[affected]

oh Daisy, you are not the only one.

My husband PALS was finally diagnosed only in May this year, but we knew it was ALS and in March a speech therapist was the first health professional to pin the problem. All the tests had been done for strokes, tumours etc and clear.

I'm kind of coming to terms with it all.

I say that, because how do you really accept? I don't know, but you are going through a huge grief process just now, and you will have ups and downs, but you will find the really overwhelming grief bit will subside a little.

I don't know how I am going to get through this with my PALS.
I don't try to figure it out.
I try to take one day at a time, enjoy what is good and what functionality my PALS has, and not allow the rest of it to overwhelm me.

Sure I have days that it isn't that easy, but this forum truly helps. You are not alone, I am not alone, others have gone before and have done it, others are doing it with amazing strength, and lots of them seek support here as well as give it, and others are to come behind us.

We don't like it, we hate it, we somehow manage - many are taking anti depressants and you should talk to your doctor and see if they will help you. This is one of the worst imaginable things that can happen, but together we all going to get through one way or another.

 

[Jeff Long]

Kate,
I'm sorry for you and your husband; this disease is wicked, mean and nasty.
Let me say (before I say what I'm gonna say!) that I am not condemning your shaken faith, I understand it too well. That said, when I sat my kids down to tell them of my diagnosis one of them (they're 15, 18, 22, & 26) had them same abondonment feeling about God that you express.
All I could tell them was this: Everything we knew and believed about God the day before my diagnosis is still real and true the day after my diagnosis. As a good 5-point Calvanist, I believe in the perseverance of the saints so even though God is letting me go through this, He is not letting me go. I'm comfortable with that. I hope and pray you 'keep the faith' (now there's a throwback term!) during this journey.
In any case, prayers for you and your husband.