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Jun 23, 2017
Learn about ALS
Dear all. I've been caught into a depression spiral lately. I'm quite stable symptomwise as for now but I'm taking a heavy beating mentally.
The most challenging moments are dusk and mornings just after waking up. There creep the worst thoughts of any day: anger, 'why me', mediations about my kids losing their father, about what's been lost and what will be lost on the road ahead, sometimes raw envy towards people walking around healthy and worryless, enjoying a life where death is not a daily and ugly face staring at you.

Well, I'm not as good a 'fighter' as so many of you good people are, but I call myself an 'adapter', I'm trying to adapt to the challenges. Right now, it's the very degraded mental state I'm trying to adapt to. I figured out some tricks and am willing to share them as to allievate some of the load during these wee hours of dawn and these shadowy moments of sunset when the brain goes haywire.

In these moments, casual distraction won't be enough. No Netflix, no Stephen King audiobook, no social network browsing, no research about ALS webwide (oh god of all things doable this would be the worst thing to do)...

What works for me:

A) Benzos. I save my benzo intake for these very moments (lexomil, seresta, urbanil... you name it). They help to relax and make it into the next phase of the day or night where the anxiety tones down naturally.

B) Documentaires about cosmology, quantum physics, etc. I'm going all Hawkin. These videos you can pick up on Youtube are a mindsaver for me. They engulf me into these big picture mysteries where my individual suffering is sized down to an epiphenomenom. I recommend them, plus it makes your brain work on items that are beyond mere mortality and disease.

C) Mindfulness, mediatation, trying to go the Bouddhist way aka: embracing the non permanent aspect of things, letting go of ego, self preservation, fear, love, attatchment...

D) 'Plugging into the hub'. Meaning thinking about all you brave and formidable PALS who go through that very same thing. Knowing, feeling, experiencing your are not alone. Loving you guys whatever you are, whoever you are, because in these moments we are the same.

E) Writing. I'm a writer. I have done it all my life and it makes the most sense just there, when I hit bedrock. Poetry, Journal, raw thoughts... I write. It turns the ailment into sense and sense helps.

That'll be all for today, my brothers. If you have suggestions that night help into that topic, feel free to add yours.
My friend face it for what it is, a disease you will have until the day that you die. That may be twenty or thirty years down the road or you may get struck by lightning next week or struck by a car and killed we just don’t know. Live your life as best as you can, love your family,, love your self and don’t try to control things you have no control over. There is no magic answer,but life will become more controllable as you go along. Good luck on your journey.
I am also an adapter. You could be describing a lot of what I am experiencing, and probably every PALS here to one degree or another. This disease is an emotional rollercoaster for sure.

I find that getting out of the house helps. Lately the weather in my area has sucked, and I’ve had days with little choice but to stay inside. I guess just trying to do different things to distract myself and lessen the boredom is the most effective strategy.

I’ve also come to realize that when I feel desperate, I’m likely to feel better in several hours or the next day.
I'm in a lot of physical pain. I have no idea why and all the doctors disagree. I just try to treat the symptoms as best I can. Medical cannabis, especially CBD, has calmed me down.

I've suffered with depression for nearly 20 years. It's genetic and not situational. I take 15 mg of Remeron each night and that helps my mood. I was able to get off Xanax with two doses of CBD each day.

I listen to scripture, meditate, do guided imagery using my iPhone apps or YouTube and, most importantly, try to socialize the best I can. I find that playing games in the iPad or playing cards with people in my condo helps distract me from the pain. Fortunately, my mind is still sharp.

I also subscribed to The Great Courses and I stream all kinds of mind-stretching courses at times when I want to immerse myself in something to which I'll need to give my complete attention. The courses are taught by the best of the best professors and they are lecture only. If you like quantum physics, advanced math, deep history, or philosophy, you'd love this service. I think it is $20 a month but they gave me a renewal for $10 a month. Each "lesson" is only 30 minutes but some courses have 50 lessons.

One of the things I've noticed that started this year was that I'm good for one thing a day. If I go out for lunch, I'm too tired to play cards in the afternoon. Sometimes I can squeeze two things in if one is passive, like getting a massage. I spread out my appointments so I won't be exhausted.

You said Benzos helped. Perhaps an anti-depressant could take care of depression and anxiety. I encourage you to try CBD oil,especially before bedtime. I also have THC but, when I use it, I stop dreaming.

I still take a Valium mid day for muscle relaxant properties.

Thanks for offering us the things that work for you.

I really look forward to summer, even in Florida. Yesterday was in the low 80s but today won't hit 70. I'm cold most of the time. When I can float in the warm outdoor pool in the hot sun I'm the happiest.
Reading and writing are my go-tos. When it's really panicky I take lorazapam. I wish I were a naturally more positive/optimistic person.
Thank you guys for your replies.
What really bugs me in these times is a tendency to withdrawal. I have two daughters, 4 and 6 years old and right now I'm just not able to be a good father for them. I don't want this life-shortening disease to rob me from the most important things left, which are my kids, but right now I crave isolation and solitude, and I hate it to be like this.
I'm looking for a way to get back to my family.
Maybe antidepressants could be a choice, but every other previous experience I had with them didn't wind up that well.

Anyway, posting here, having a place to vent out worries and doubts, reading about what others dealt with the same bad hand do rises hopes that one can walk this road and still enjoy life with their kin, all things considered.
CBD is legal in France. You can vape it. You can buy it in any e cig shop. It helps physical relaxation and has no psychoactive effects. Being physically more relaxed helps free the mind.
Thanks all for your contributions
CBD is legal in France. You can vape it. You can buy it in any e cig shop. It helps physical relaxation and has no psychoactive effects. Being physically more relaxed helps free the mind.
Thanks all for your contributions

Yes, thanks for the tip. I already vape pot. I prefer the plant whole rather than CBD extracts, and I don't mind the psychoactive effects of THC. Not the most 'legal' way to consume, but frankly, I'm beyond these considerations.

Merci à toi, au plaisir de te lire.
Stop feeling sorry for yourself, give your self a kick in the pants and rejoin the world, it is not a bad place out here. You have to get to the point where you look forward to the next day and you enjoy it. That would involve your family Iam sure, come on my friend make it happen, we have all been there.
If you are clinically depressed, you can't just "pull out of it." Please don't get discouraged. I tried many antidepressants and they all failed me except one (Remeron.) That one helped with anxiety, sharpened my mind, and brought me out from the deep hole of isolation.

Many people with ALS experience situational depression. What I had changed me from an outgoing, positive person to a sad, scared, and introverted one. Nothing happened to cause the depression. It just came and got worse.

I don't want you to get worse. ALS is enough. Please talk with your primary care doctor and see if an antidepressant might help. It could make a big difference in your life. I also went through counseling but most of the doctors/counselors just wanted to ask me tax questions or talk about the boards I was on. I ended up finding a pastoral counselor who was also a PhD. and he helped me to get back to my former self. After my diagnosis, I went back to him for a couple of sessions and still see him via Facetime. I'll be on Remeron for the rest of my life but it allows me to do the few things I can still do and be happy when I'm around my friends.
ThroughThatValley... I can relate to what you are describing, My kids are 6, 8, and 10. Ever since I was diagnosed all I want is to be there to see them grow up. But paradoxically, the depression I experience makes me withdrawal to where I'm often in bed buried in a book the entire day, and I realize- why am I not joining my kids at the dinner table and having a conversation with them? They are the one thing that most motivates my desire to survive, so why am I not spending all my moments soaking them in? I would describe my depression as mild, I have good days where Im in the moment enjoying my family, but then I can have bad days where I withdraw. I have come to the realization that it's probably time to look into antidepressants. I don't want to miss out on the time I have left.

Kim- thank you for sharing. I want to ask my doctor bout remeron now. Ive tried one or two antidepressants in the past (pre-diagnosis) and they just made me sleepy so I stopped taking them.

Most primary care doctors only prescribe SSRIs. They did nothing for me and the side effects were horrible. If you can get to a psychiatrist, he/she will know more about Remeron.

Remeron is sedating in small doses and activating in larger doses. It will make you sleep which is why it should always be taken at night. I wake up pretty refreshed with it.
Hi all
Oh how painful it is especially for those who have young children! How hard !
I don’t believe you can kick yourself out of depression. All advice are useful. Maybe antidepressant that suit you might help connect back to family where pot can make you you have bearable moments but alone. A subtle balance of both ? Can you discuss this with your kids mother ?
Just trying tracks
What hospital to you attend ?
Depression is a medical issue just like high blood pressure and diabetes are medical issues. Most people can’t just pull out of depression on their own.

CBD oil, full spectrum lights in the winter, counseling, and exercise (for those who still can) are all helpful in managing depression, but often it takes antidepressant medication to get things more manageable. There are many different types of antidepressants.

Best of luck.
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