How do you best support your PALS after diagnosis?

[JlS85]

Hi everyone, this is my first post on this forum. I'm sorry that this is the way I had to meet all of you amazing people, but I am grateful to have a place to ask for advice!

My husband posted in the Newly Diagnosed section a little over a month ago. We have an 18 month old girl and we are expecting another girl in April. It seemed to be a fairly quick diagnosis so we are still working on overcoming the shock of it all. He was diagnosed by the head of the ALS clinic at a university hospital in Kansas City, and we just received a second opinion at Mayo confirming the diagnosis last week. Most of the genetic results have come back and were negative, but we are still waiting on the C9orf72 result to come back. We have been completely overwhelmed with the process of learning about this disease, raising a toddler, preparing for a second baby, researching drug trials, experimenting with supplements, figuring out my husband's business, figuring out finances, responding to friends and family wanting to help, all while figuring out our new purpose and adjusting to a completely different family life than we envisioned (can you tell by my list that my mind is a constant whirlwind every day? Ha!).

He's had speech difficulty since this summer and has some mild hand weakness but can otherwise function independently. So far the progress has seemed slow, but we are pretty early in the diagnosis since it was caught so early. It's hard knowing how to take each day at a time when you know your time is limited. And how limited it really is, is very much unknown. The whole aspect of this disease and the unknowns drives me crazy! And the lack of answers we seem to get from doctors is equally as frustrating. I have worked in the health care field for 13 years (in pediatrics) and I have never been more disappointed in the health care field than I am now.

We are absolutely devastated and terrified by this diagnosis, as I am sure many of you understand. What I am most struggling with is how to find the right words to help keep my husband going each day. I have chosen to take the path of determination and hope, the whole "we can accept the diagnosis but we don't have to accept the prognosis." I feel inspired by all the PALS and CALS fighting to pass laws to get access to drug trials, and Brian Wallach and his organization are particularly an inspiration to me. I just don't know any other way to cope with this, other than to fight and remain hopeful. And I know my husband has it in him to fight too, but he is just in so much pain. I don't know how much space I should give him and for how long to give him that space. And when is the time to inspire him to keep going so we can enjoy the time we have as a family together, even if it's not what he wanted? He's quite the perfectionist and very goal oriented. He is used to being successful. ALS changes everything about the way of life he is used to living. Lately, I can tell the depression is setting in and the withdrawal is starting. I'm afraid of letting him get too far down that rabbit hole. Most days I try to listen, cry with him, and be understanding, but today I had a little tough love session with him to try to snap him out of it and I'm already feeling guilty about it. What are some of the things you do or say to lift your PALS up when they were first diagnosed, or on the hard days?

Thank you so much for your thoughts, you all are an inspiration.

Jamie

 

[lgelb]

Congratulations on your daughter-to-be. I'm sorry you are facing this. The second and confirmatory opinion is generally where the denial has to begin finding another home, Jamie, so his journey from a mental perspective can be said to have really started only last week. That is not too long and withdrawal may be part of his process toward acceptance, or he may be a guy who will never do acceptance. In addition, it may never actually be a "fight" for him as it is for you. Those differences are not necessarily as important as what he does with the rest of his life.

Tough love is generally nothing to be guilty about, so long as it's still recognizable as love. Still, it may be too soon to have an impact. My cliché is to live your lives till you can't, but for a perfectionist, that will require being able to see "life" as something other than what was planned. That is not a week-from-the-second-opinion proposition.

So from me, the advice is to give him the space, because I'm not sure "inspiration" to participate in things is transferable. If anything, it may come from your daughter. But if it's in him, it will make an appearance, I'm sure.

As an aside, have you guys worked out your terms of engagement for this site? You can each see the other's posts, as you know.

Best,
Laurie

 

[JlS85]

Hi Laurie,

This is fantastic advice and really well put. I can't tell you how meaningful it was to me.

What you are saying makes sense, especially about the second opinion making another home for denial. In my mind, we have been dealing with this diagnosis for the last 6 weeks, but perhaps in his mind it's only been a week. Of course we both had a small hope the second opinion would result in something different, but I didn't let that fantasy go too far with the fear of being hugely disappointed in the end.

We have talked about the individual difficulties and fears we both face. I know I'm not the one having to physically experience the things he is, or having an expiration date put on my life along with the facing the possibility of not seeing my children grow up, so I can't expect both of us to be feeling the same thing at the same time. But in a way, the pain he is feeling, I am feeling too. I would do anything to take away the pain he is going through right now. It's hard to describe. I wouldn't wish it on anyone.

You make a good point about talking about our terms of agreement with this site. I think there's an unspoken agreement to not post anything that we haven't discussed with each other. We have joined separate Facebook groups that are private to help with this, but we both value the advice given on this forum too.

Thanks again Laurie.

Jamie

 

[EricInLA]

Jamie,

I'm sorry you are going through this. I was diagnosed earlier this year at age 49, and have a wife and 3 teenage boys. I will give you my thoughts as I read through your post. In my situation, I am the one with ALS, but perhaps hearing my perspective will be of some value. First, you are right that much remains unknown about this disease, including why people's journeys diverge so much. Often, doctors just don't have answers for us, which makes things frustrating! I feel like it's a series of related diseases instead of one disease.

Like your husband, I am a perfectionist and goal-oriented, so one thing I focused on like a laser early on was arranging everything in my life so that my family can carry on (as normally as possible) once I'm gone. This included estate planning, tiding up -- and to some extent, winding up -- parts of my businesses, and writing detailed memos and letters to my family, both for practical and sentimental purposes. I know this all sounds morbid , but the way I thought of it is that if I could get this stuff out of the way early, it would reduce my already-high stress level and make it easier to focus on enjoying the years I DO HAVE with my family. I wouldn't be clouded with the constant worry of how they get along without me. It's also important to do anyway, and gave me some satisfaction that I was just taking care of s---.

As to dealing with your husband's emotions, I can only offer that for me, it is important that my wife and kids stay strong for me. I don't want to see sobbing or sympathy. I want normalcy, as much as can be expected of course. Same for other family and friends. Just treat me the same as before. If you normally rip on me, don't stop now! Everyone in my orbit has generally complied, for which I'm grateful. I think you were strong to do your 'tough love' session, and personally I think that is important and sometimes needed. With respect to living with an expiration date stamped on you, I say. . . everyone has this, as we are all mortal. We pALS just have a smaller number of days than others. But just like everyone, we don't know when our number will be called. So, I agree with Laurie that you live your best life every day, until you can't. And then, you live as best as you can as long as you can. I realize that not all days are good with this crappy disease, but if you can bring it back to that core principle, it can make things better.

Hope this helps. There are lots of great people on this forum.

 

[Ed340hp]

Jaime, help him focus on the future, one day at a time, to keep him moving and planning. Stress is worse than the disease in the early stages after diagnosis. Setting and achieving goals is a good distraction from the stress. Estate Planning and health insurance plans for the 5 month gap before Medicare kicks in are good initial family goals. Hopefully the gap will be gone soon with a signature, but the work will still secure insurance for the family (it is not wasted effort). I also set goals to travel with my wife and family as long as I could, to see my daughter and son graduate from High School, and now to see my daughter graduate from college (in 2022). I pick goals that are a few days to a few years out, because you never know what the progression will be. If he mentions a need for occasional chemical help for the stress, talk to your GP and Neurologist for a prescription (there are no hero's when it comes to combating early ALS stress).

 

[Vincent]

First things first, DON"T TREAT HIM ANY DIFFERENT THAN YOU DID SIX MONTHS AGO. It is pretty overwhelming in the beginning. Over time he will come to the realization that he is still himself. And whatever the end point, everything he has been through will see him through it. Yes bad things are coming, but they are not all happening today. Focus on what he can do still, and do it!