Mistake or Miracle

[OnTheRiver]

Thank you for existing. For taking precious time to share advice. Ten days ago my ALS diagnosis was confirmed. I had fasciculations and nerve issues in my hand in 2018, so my neurologist thinks I've been a brewing pot, but something in this wayward body triggered a rapid progression. One day I completed all my barn chores, worked up a good sweat, and took my dogs for a walk to cool down. Seemingly over night I couldn't make it up the stairs. My body is a flight of twitches. During the many times I wake up at night, my first thought is "this must be a mistake". Daylight brings magical thinking. Perhaps some bizarre combination of good and bad habits will result in a miracle cure. I have to ask, will this new life always be surreal? Will I have a new normal? Are there days when you don't cry? How do we balance wanting to live for our families yet not burden them? The sadness is overwhelming except for that brief moment when I wake up at night and I think I've had a bad dream.

 

[lgelb]

I will let your fellow PALS address your questions, but I just want to make sure that you had a second opinion at a major neuromuscular center, as we always recommend. As you point out, your onset isn't typical, all the more reason to make sure.

Best,
Laurie

 

[Nikki J]

Agree with making sure you get a second opinion.

feeling like this must be a mistake is very common. We have had threads about it before and there were quite a few of us who were asking our neurologists are you sure ? Even a year or more after.
so is hoping that somehow there will be a miracle cure or reversal. We all need hope - just don’t get sucked into the many scams that target PALS.

that said, right now you are in shock and grieving. That is normal too. You won’t always feel like this and yes there will be a new normal. There is life after an ALS diagnosis and you will find stories of PALS who both have a lot of fun and those who accomplish great things or both.

we all worry about quality of life, leaving loved ones and becoming a burden. embrace technology! It will improve your quality of life and ease the load for your care partners.

yes there will be days when you won’t cry and days when you will laugh and have fun. There will also be times you are sad and scared but it won’t be all the time- hopefully much less than most times

this isn’t easy and it isn’t fair but it is the path we were given. Be gentle with yourself and know you have friends here

 

[jonico]

I can't offer a whole lot more that what Nikki shared, other than to encourage you to take the experiential part of it one day at a time. Assuming it is in fact ALS, you'll want to stay ahead of the game in planning for physical changes that will come, but emotionally, try best you can to stay in the moment and stay as positive as humanly possible.

There will be significant challenges, and if you allow for it, much beauty (hard as that may be to imagine). Some or most family and friends will be there throughout, and many will consider it a privilege to support you. Some may fade away or disappoint. Much of the most enduring love and support my wife enjoyed during her journey came from people we didn't know, or hardly knew pre-diagnosis. The folks who step in and step up may well surprise you. One day at a time On-the-River...Jon

 

[OnTheRiver]

I was diagnosed at VCU Medical Center and am waiting for follow up at John Hopkins. Appreciate the reminders - not sure I would have asked for a second opinion had I not read this suggestion here in a previous post.

 

[EricInLA]

I also had nonstop twitches for over a year and a half before I was diagnosed. And I also sometimes think that this has to be a mistake. Even now, almost a year after diagnosis. This can't be. I was as healthy as a horse! WHY WOULD I HAVE THIS? It's normal - I think most of us have had these thoughts.

In answer to your question, as Nikki says, there will definitely be a new normal. It may take a little time. For me, getting back to a normal sleep routine, after the sleepless nights brought on by the shock of the diagnosis, was key. I did that with medication (Trazadone). You might also consider a SSRI drug to help with anxiety. One way or the other, the degree to which this diagnosis dominates your every waking hour will subside, and you will settle into a routine. Sure, you need to do some planning, but you don't need to rush into it - you can set a reasonable schedule for getting necessary stuff done, at a pace that works for you.

With respect to the family burden dilemma, there is no perfect answer, so don't beat yourself up looking for one. But there are ways to cope. One is to focus on love - both your love for your family, and their love for you. If you look at it from that perspective, there are no burdens. In my case, specifically, I dealt with this dilemma by doing everything I could, at an early stage, to prepare my family for the day I wont be around. I completed estate planning documents. I wrote detailed memos describing as much as possible - assets, personal feelings, how to change the air return filter, etc etc. I have also had long conversations with my wife, often on our beach walks, about how she will be able to get all the kids through college. The more I plan, the more stress I'm able to unload. I know that's not the solution for everyone, but if you're a planner, that can help.

Many have been in your shoes before, and so we can help you deal with this challenge.