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Completely agree anything you feel right to help you cope is right. Medication, counseling, and new questions: what can make you both happy or just feel good tomorrow? Next week? Next month ?
Hugs
 
We so DO understand what you are feeling. It is overwhelming, full of uncertainty and is all wrapped up in a sense of grief and helplessness unlike anything you've ever felt. It is not a good place to be. But those of us who will now share this time with you, have likely felt most everything you now do. I wish I could tell you that there was a shortcut around those feelings... but there is not. I wish I could tell you that you could run through them to make the process faster in its experience... but you cannot. I wish that I could tell you that you could close your eyes, tap your heels thrice and it would all be gone. Unfortunately, we're not in Kansas anymore. What I can tell you, difficult as it might be to believe, is that it does get better. Let me see if I can describe some of my experience in the hopes that it might give you another point of view.

I told my wife, Darcey, that I felt like we were on a train. We didn't ask to be on this train, but we're here nonetheless. It has one destination, not one WE picked... but the one that ALS picks. And want as we may, we simply cannot get off. We are joined on this train by some equally wonderful people who didn't want to be here. So what can we do? Really, there's not a damned thing we can do but ride this train. And though we know where it leads, we don't precisely know when it we will get there.

As has been said, each "ride" is different. I think it was easier for us because we'd gone through a year of life on hold, waiting to get better. And she wasn't getting better. Rather than the despair that would often accompany a diagnosis of ALS, we actually felt relief. I know it sounds silly, but consider this. We had just spent a year going nowhere and doing nothing. And during that year, nothing got better. With the Johns Hopkins diagnosis of ALS, we suddenly could find some certainty as to what Darcey was going through... and what I was perpetually trying to react to in my support and caregiving role. With that diagnosis, we could read and begin to understand that likely course that ALS would run. With uncertainty removed, we could begin to plan again... to live again... to more fully love again.

Darcey and I were married in 1984. Compared to stories from friends regarding their relationships... views from the outside of others we knew... ours was indeed a marriage of "peace, love & joy". We had disagreements, but we really never fought. It did, indeed, seem to be a dream marriage. Looking back, we both agree that ALS changed the relationship that we’d had. It took on a whole new depth. Roles changed. I am now the sole income producer, homemaker, caregiver, shopper, cleaner, etc. My time became a premium item as I now had more to do than there was time to do all these new things. But we talked more. It wasn’t how much more we talked, but how much more deeply, openly and honestly we talked. It seems incongruous… but we might never have known this depth of love were it not for ALS.

Again, Thomas933, this is my path and how it has run. Yours will be different as it will be all your own. And as overwhelming as it right now is, I truly believe you will find a way to anchor yourself and begin to pull things back into a perspective that you can work with. For now, take it moment by moment. Feel free to come sit with us, here in the forums. Let us know what you’re feeling and we’ll try to help you find something to hang onto. Again, I will remind you that you are not alone.


As before, my best goes with you…


Jim
 
Thank you all. I talked to my doctor today and I am taking time to seek help and look for a therapist. I am trying to walk through the fear and breathe. I am focused on trying to help my husband through the medical stuff and set up the resources to talk to my children soon. I also am getting health insurance information together.

You are all amazing and so kind to stick with me on this thread. Right now is not as bad as this morning. The weekend was so difficult.

I have a practical question: As we go through second opinions, where is a good place in this forum to ask medical questions? I know there will be many and I anticipate that all of you have been there so I know I will value your input.
 
The train metaphor is rather good Jim. I also like to see things as sailing a ship. The horizon is there somewhere.
Glad you can find resources in yourself and around. Thomas. There are also relatives and friends.
All this trip makes love more obvious
 
Hi Thomas. I have also been following your thread and want to extend my hand of support.

A number of us are medically knowledgeable and can probably answer your medical questions or at least advise you on where to look for answers. Just about everyone on this forum has stories and experiences we can all learn from. So much is trial and error and learn as we go. I am a retired MD and am happy to help out however I can.

You can post medical questions in the general forum section or in the CALS forum, whichever seems more comfortable to you.
 
Thomas , how old are the kids ?
 
Kids are 15, 12 and 9. All boys. They are all very close with their dad. He’s very active in thier lives.

It’s soul crushing to think we have to tell them this news. I’m getting professional help with this piece, too. I don’t want my children to feel like I feel.
 
Very wise to get professional advice for telling the kids. My niece was 9 when my sister was diagnosed. Her parents also got advice and my niece got counseling. Your family will find your way. Please let us know how we can help.

To comment about clinic- you will make your own choice after you go. Mass General clinic is different than some others. You do not see every discipline at each visit. You see your provider- any other people are by your request and or your provider’s recommendation. If you want to see pt you may for example but if you don’t need ot that day you wouldn’t see them. It is quicker and less tiring than the other model.
Most of the ALS doctors also do televisits and they have a home visit program ( though you may live out of their area) and a neuro palliative care specialist. These are resources you may not need now or even soon but they may be helpful later
 
Welcome. I am so sorry you find yourself here.

It’s been almost 2 years since my partners diagnosis , but I still vividly remember the feeling that day in the specialist clinic when the doctor confirmed our worst fears. When we got home we cried and felt helpless and devastated and cheated. I took our dogs to the park and sat on a bench and thought about things, tried to get my head around what we had just learned. On my way home I picked up a very special bottle of wine, and I took it home and told him we were going to make the most of it. We planned a cruise, got married, drank nice wine and dined at good restaurants- things we loved to do. We tried to do as much as we could early on. I’m so glad we did all of it.

In the beginning I read a tonne about ALS and found a lot of it very overwhelming. After the shock passes and you find your feet you will be amazed what you can do. Never doubt yourself. Your love for your husband will guide you through. You will be amazed to discover you are practically a superhero.

I have found starting a meditation practice has helped me a lot in coping with our new life. With sleeping, with calming myself, with just getting through the more difficult days. There are some great apps you can put on a smartphone and it’s a good way to give it a go if you are so inclined. I use one called ‘Insight timer’. It’s free and full of thousands of guided meditatins, meditation music and talks. Or you could find a book on mindfulness meditation or look on YouTube. For me at least, it’s been very helpful.

All the best to you and your family. It’s good you have found this forum. It is a tremendous resource and the people are amazing and so supportive. Sometimes it just helps so much to know you aren’t alone in what you are going through.

Tara
 
Hi Thomas - I just joined this forum myself so apologies in advance for any cluelessness about how this all works, but your post is the first I saw and just wanted to offer a couple of quick comments/resources.

My husband was diagnosed almost 2 years ago to the day. We were 47 then. My girls were 12 and 15.

First off the MGH ALS clinic is awesome. We are so lucky to live near some of the best medical care in the country and world and some of the best people for ALS care (my husband was a biotech executive and worked in the neuromuscular area so he and his medical colleagues knew that MGH is among the best). Hopefully that provides some reassurance. I know it did for us (the disease itself is bad enough, but the last thing you want is to ever question the care you are receiving). We also had to wait several weeks until January. Though it was an agonizing several weeks, it was worth the wait.

There is so much to process upon this awful diagnosis, but one of the early ones was how to tell people - our kids, our family, our friends, coworkers, etc. We had had a winter vacation planned and we decided to wait until after before telling them - decided to let them enjoy one last, blissfully unaware, normal vacation.

The most amazing resource we found to help how to approach things with the kids (as well also others) was the PACT Program - Parenting at Challenging Times (mghpact.org). Its part of MGH's cancer center but they have worked with the ALS patients too. DEFINITELY reach out to them. Their guidance is beyond invaluable. If you cannot get in touch, at least get the book ("Raising an Emotionally Health Child When a Parent Is Sick").

(If you are interested, I am very happy to share the email we sent out - it was a painful to write but was comprehensive, great tone, etc.)

Finally, Compassionate Care ALS (CCALS.org) is a wonderful organization for resources and support in this area. They work very closely with MGH. Definitely reach out to them.

Hope this was a helpful addition to all the amazing words of support from the other members.
 
thank you Turtals for sharing your experience. I agree MGH is awesome.

Your post was very appropriate and much appreciated. If you wish when you are ready you can start your own thread too so that people can welcome you properly. Since the. Diagosis is not new perhps in the current CALS section if you want to focus on your role as a CALS. You could also post in general discussion. If your husband cares to join we would be happy to have him here too
 
Thank you and when I am ready, that email may some in handy. I am trying to to overwhelm myself right now. I am wondering if Paula the person who runs the PACT program? The best advice I have gotten so far is: "be yourself". So, I am trying to be.

Thank you -- I will be back to this thread for the resources. I hope you and your family are doing okay. Peace and comfort to you today.
 
Thank you and when I am ready, that email may some in handy. I am trying to to overwhelm myself right now. I am wondering if Paula the person who runs the PACT program? The best advice I have gotten so far is: "be yourself". So, I am trying to be.

Thank you -- I will be back to this thread for the resources. I hope you and your family are doing okay. Peace and comfort to you today.

Yes, Paula Rauch runs the PACT program. She is unbelievable.
 
Telling our kids is the next thing on the horizon right now and I am so heartbroken that this is going to change them -- they are so kind and such great kids. I know every parent thinks this about their children. We are so proud of the boys that they are -- my 9 yo has such a spark for life and is so joyful. I am heart-broken at the thought that this is going to cast a sad shadow on his childhood. It feels so unfair to them.

I am so sad for my husband, too. He knows how much this will hurt them. That guilt is tough to face. I will buy the book you recommended, thank you. I am trying to find honor and purpose in my role of caring for the man I love so deeply. I will do my best each day. I just wish my children could be spared this. It seems so cruel.

If anyone has insight about how to do this "right" with school-aged children, I am all ears. I will also try to share things I learn over the next few weeks. Thank you all again.
 
Thomas,

Childhood is the transition into adulthood. It would be impossible to do so without sadness and life's unfairness not touching a child's life. In other words, life happens, so don't feel guilt.

Since you and your husband obviously love and care about the kids, it will be difficult to tell them "wrong" -- just make sure they do not feel any guilt on their parts (kids can feel from media that everything is down to stress; you can honestly say that we do not know why your husband got ALS) and that they know this doesn't change who you both are and how much they are loved.

They are each old enough to take a role in his care as time goes on, and may ask something in that direction, but that can be phrased as "We will all help him in the different ways we can" rather than as a scary uncertain burden.

My other suggestion would be that you get enough tears out of the way beforehand so as not to look totally overwhelmed when you have this conversation. Kids respond to the courage of your conviction you can and will handle this as a family.

So as an example, while the difference between "he has a disease that will paralyze him and then he will die" vs. "he has found out the disease that he will most likely die from and he will need a lot of help from us" is subtle, it may help.

Best,
Laurie
 
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