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Thomas933,

I'm sorry to have to welcome you here, but glad that you found us nonetheless. One thing I can say with certainty is that the knowledge that can be gained, here, will help volumes with the uncertainty that ALS brings into our lives.

My PALS, my wife Darcey, first noticed something was wrong in Nov 2012. We were trying to walk 4 blocks to a restaurant and she was finding that walk to be extremely difficult. Later that evening, she went into a public restroom and found that she was unable to get up on her own. We then knew something was wrong... but didn't know what that might be.

The next several months were filled with doctor appointments. Each was unable to pinpoint a source cause and referred to the next for more testing. Eventually, Darcey made it to the neurologist and was diagnosed with CIDP. CIDP is treatable and can be recoverable. So for the better part of a year, we put life on hold as we "waited to get better". But Darcey's ability to walk, to use her hands, to drive, to get up steps... all things continued to decline and get more difficult. In the spring of 2014, Darcey was accepted for evaluation by Johns Hopkins and was ultimately diagnosed with ALS.

By this time, Darcey was no longer driving, was spending much of her time in a power wheel chair and needed help transferring from her PWC to do toileting or to get into or out of her bed. While ALS was not the diagnosis we'd hoped for, we at least then knew what we were dealing with. We knew that ALS was terminal. We knew that she was going to continue to lose the ability to do things as time continued to pass. We knew there was no getting off of this train so we began to seek to make what was left of that life as good as we could make it. Life, which had been on hold, was rejoined. We began to again do the things we enjoyed doing... adapting along the way as ALS required.

As time continued, Darcey began to lose use of her arms and hands. In March of 2015, Darcey's then neurologist suggested that he believed that she was within 6 months of life's end. Much of that analysis was based upon her breathing history. Our 28 year old son was with us on that appointment. I can still see the smile on Darcey's face as she looked at us and then back to the doctor. She then said, "Thank you for the advance notice... but I've still got things to do... WE'VE STILL GOT THINGS TO DO. So if it is all the same to you, we're just going to keep moving forward and will continue to make adjustments if and when they become necessary." We no longer participated in the ALS Clinic after that day and did not again see that neurologist (instead picking one closer to us). He was, however, the very best of all of the specialists that we had the privilege of working with. Our ONLY complaint was that he was nearly an hour away from our home.


So... to the point of this long reply...


2015 came and passed... as did 2016... and 2017. We are now about to complete 2018 and I expect that Darcey will participate in another Christmas and New Years celebration with us. Perhaps she is still around because she chose to live the time that was left rather than to simply hang around waiting to die. Regardless, even the experts can't tell anyone, with any real certainty, the exact timeline of what tomorrow will bring.

I don't know what will work for you and your PALS, but I do know what has worked for us...

Forget about trying to put a mark on the calendar for life's end. It is not worthy of your time or attention. Instead, treat each day as another gift and seek to make the very best of it and to do those things that you can do today... as you may not be able to do them tomorrow. And for those things that can no longer be done, find other things that can be done. Even with a diagnosis of ALS there is much that can yet be done and accomplished. And most importantly, be patient with each other and talk openly about how each of you feel. No one is going to quite understand the road you will travel as well as the two of you.


I'm sorry this has become somewhat of a novel, but I hope you find something in our journey that gives you hope and purpose in yours. Although each person's journey will take different paths, there will always be much we have in common. Feel free to ask questions here. Feel free to cry or laugh here. Feel free to share that something new you learned or discovered that might help another of us here. And always know that you are not alone.


My best...


Jim
 
Forget about trying to put a mark on the calendar for life's end. It is not worthy of your time or attention. Instead, treat each day as another gift and seek to make the very best of it and to do those things that you can do today... as you may not be able to do them tomorrow. And for those things that can no longer be done, find other things that can be done. Even with a diagnosis of ALS there is much that can yet be done and accomplished. And most importantly, be patient with each other and talk openly about how each of you feel. No one is going to quite understand the road you will travel as well as the two of you.

Jim that's gold. Thanks for that...helps me too.

6 months ago, my neurologist told us: your mother should go into long term care. We ignored him on that point. She's moving into my apartment building in a week. One day at a time, and doing the best we can! But we're still with the clinic. :)
 
My husband is also a patient at MGH. I can't say enough about the care, support and compassion we feel every time he has an appointment. I actually hugged the doctor once and said we don't feel alone because of you. Sorry you are here but this site will help you so much. Hang in there----not easy at the beginning....not easy at all. But you will be supported by MGH and the folks here.
 
Thomas933,

I feel for you and your family. We've all been through the shock, grief, and fear that comes with the initial news that our loved one has ALS. In our case, the diagnosis seemed so quick - my husband noticed wasting of his hand in July and was diagnosed at the end of October/beginning of November 2015. I completely fell apart and could not function; I cried every day for the first six months. I ended up taking a low dose of an antidepressant which helps me to maintain my sanity and not break down every day.

The first neurologist was an arrogant jerk so I worked hard on changing my PALS' coverage and got him in to see the best MND specialist in our area. The MND specialist makes me feel better, is very kind, and also is in tune with the various clinical trials out there. While my PALS isn't a good candidate for most of the trials (his progression is slow) it still gives us hope. This forum has also helped me; I am inspired by both the CALS and PALS here.

I've just read JimINVA's post - I'm always touched by the love he shows Darcey. I hope we can all treat each day as a gift as Jim says. I'm thankful for my PALS for being patient and kind to me.

Everyone on the forum has been understanding and helpful as well. Stay in touch and you'll find a lot of support here.

V
 
Thank you Jim for your beautiful words and thank you all for sharing your sentiments.

Your messages if support are a real comfort to me. You have no idea how much you have already helped. I’m so sorry all of us have to be on this path. But, tonight I am thankful for all of you.

Peace and comfort to you all and your loved ones.
 
We got my husband’s diagnosis almost 2 1/2 yrs ago, but I remember how awful the first month was. Panic, grief, despair,, anger. I feel like i did all my grieving then and then we just got on with living our lives as normally as we could. My kids were 2.5 and 4, so I didn’t have a choice. You can’t cry nonstop when you have kids to care for.
We went on a lot of family trips, we got our finances in order, we renovated where we needed to. Our kids still don’t know the extent because they are too young to understand, but they’ve seen the progression from cane to walker to wheelchair. They are resilient. We will share more when we need to but for now they are fine with what we’ve told them.
You can do this. It’s hard. It’s overwhelming. It’s exhausting. The initial shock is the worst, but it does lessen.
I’m the sole caregiver for everyone, but I make it through every day.
 
You and your husband will find your own path with this. Everyone’s path through it is all their own.

People sometimes talk about fight, but just from my CALS corner this is the one and only thing in life I have ever fully submitted to. By that I mean when Brian was diagnosed I told him I would approach this with a complete acceptance of any choices he made. I have done just that, and it’s been the most difficult, the most loving, and the most freeing thing I have ever done.
 
Last night was a rough night for me and it’s a rough morning. I am so worried and sad. We have some appointments lined up this week and I am feeling so overwhelmed.

How can I find some peace even just for a few hours? I am just so devastated that this is our life now. I’m looking for meaning and purpose but it’s hard to come by.

I cannot believe this is what our family has to go through. I’m also so tired already. I just want to sleep but I can’t. My doctor gave me something to help me but I still am not sleeping well. I’ll go back and read through the thread again and then start the day. Thank you all for being here for me.
 
Thomas, I’d stay with this thought: your life together is not over. You have today, and today is all you’ve ever had for sure. Think of things you want to do together in the coming days and weeks. Even if it’s just go for a few drinks and dinner, whatever. Live in the now.

These things brought me much peace.

Thinking of you.
 
Hugs Thomas, getting this news is tough.

This forum is a great place - to ask questions, seek advice or just vent. People here are warm and welcoming and have a wealth of knowledge about life with this disease. Come here when you need a shoulder to cry on.

Take it one day at a time for now. Learn what you can, prepare, but don't scare yourself more than you already are about things to come. Somehow, we seem to be able to adjust . It is not always easy, but you somehow find a way to get through. You will figure it out.

Hugs!
 
Sorry you and your family are facing this. You will find some kind people with extensive knowledge here.
As has been said, everyone’s journey is a little different and you and your husband should pursue the path that is right for you. Live for today and plan for the near future but not too far ahead as that can be overwhelming. I remember the first shock and despair but am today handling things I never thought I could, so some of that worry wasn’t necessary. And though it sounds cliche, try to take care of yourself going forward, it isn’t selfish, but necessary. After you get a second opinion, consider a local neurologist if that is easier for you both. Clinic visits are long and draining and looking back I wish we had stopped them earlier.
 
I am reading through things and trying to find a way to accept all that comes with what we are facing. I keep thinking about how we can live a life filled with the loss of this disease. I’m scared to lose the life we have. I feel like all the joy is gone.

I just cannot imagine facing a future of years feeling so sad and not being able to live the live I love. My husband and I are so independent. I also need help coping with what’s ahead. I need help but I’m scared no one can really give it to me. I’m not mentally strong enough to live in this reality. I don’t know how I’ll ever be.

My friends have said I will find the strength but I don’t want life to be about just getting through each day. I want more and I feel like that is gone now. Even peaceful sleep is gone the ability to enjoy life - it’s gone. I can’t live years like this.

I’m sorry if these posts are too intense or sad. I know everyone here has it tough too. I just can’t see a way to cope and not feel despair all the time. .
 
There is no question, Thomas, an ALS diagnosis can seem like having the football of life yanked out from under you and you have to grieve that. You may want to see a counselor (and your husband has that option as well, of course) to talk about the "how to get through" part, but as Annie says, you can do more than you think, and you can still have happiness together. Your lives will change, but this is not the end of your time together. He will still be able to see, hear, feel your touch.

Best,
Laurie
 
I drew on support here and in some private fb groups.
I went to a counsellor regularly. We really 'clicked' and it allowed me time and space to just reflect on where I was in the midst of everything that was going on and what strategies I could use to cope and survive.
I took an antidepressant and to be honest that is what stopped me feel like I was just constantly screaming inside.

What you feel is completely valid. This sucks totally - the loss of so much! We are losing the person we love most, and so many things about the life we had. It will not ever be the same, that's a fact and hard to swallow.

Please try to just focus on little bits, not the entire picture and I strongly suggest you consider a counsellor that you can trust and talk to your doctor about meds if you feel you would be comfortable taking something. I am not the least bit ashamed to say that I took medications, it's not a failing. Some people don't like to take any and that is fine too. Just offering options and how different things helped me.

Whatever you need in order to cope is the right choice. Remember you are in deep shock, be kind to yourself that you feel it so intensely. I'm so sorry you are facing this.
 
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