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  • Regarding stress/anxiety, I think I drew the DNA short straw on temperament. Before mindfulness, I was a professional neurotic. And stress meant meant depression was never far behind.

    Fortunately, a lot of that got easier with non-judgemental observation. While it never entirely goes away (I wouldn't want it to), I just process better. MM makes it akin to passing by a storm. The storm is inevitable, but we don't have to linger there. We can just notice it. Zinn might say to focus on the present, and when some negative feeling creeps in, don't suppress it, just observe it, and then allow it to fall to the wayside while you refocus on senses in the present, without judgement.

    Let me know if you need any of that stuff. I have all of the audiobooks, etc. Hope you're enjoying FLA. Whatever is said of MND, what you can say is that there's plenty of time for meditation, reading great lit, watching memorable films, or listening to amazing music. Hope to see you on the forums. Cheers. (2/2)
    Hey, Katy. How are you? How have you adjusted to the PEG? I've heard it's good to start those early, so kudos on that. No worries on chasing down all of my links. If you only can look up only one thing, I would say you might just Youtube "Jon Kabat Zinn." But even if you can't, I think you got the basics here, anyway.

    I'm glad to hear you're living more in the moment. I can relate to the negativity that can creep in. We all confront the gamut of emotions, and all for unique reasons. To try to pretend otherwise is a futile rejection of the human condition.

    Given my ignominious past, and a spate of bad decisions, I have a rich history of regret to call on in case I should ever forget my humility. But it hasn't all been bad, and obviously lingering on perception found in the rearview mirror is just unhelpful as letting the mind occupy the 'what if' of tomorrow. (1/2)
    (2)After taking it for two months, I noticed nothing. When I have to consider liver function each time I'd like a glass of wine or a beer, well, it just didn't seem worth it to me. I didn't think I wanted to add more time to all of this anyway, IF there was time to be added. Perhaps that seems negative, but I'd like to think of it as taking charge of something I really have no control over. Naive? Perhaps. All of that aside, I wanted to thank you so much for all of the information. I honestly haven't had the time to look into it, but I will as soon as I get the chance. I'm getting my PEG tube put in next week, so I'll be laid up for a day or so. I should have the opportunity then. Thank you for being here. I'll try to check in more often. Hugs to ya! :)
    (1) Hi Brian,
    Sorry it's taken so long for me to respond. Drs appts and all that. Thank you for all the info. I've been using relaxation techniques for about 30 years. It was great with the start of youtube and the videos available. I also think I've become pretty good at living in the moment/present. Doing anything but these days seems to be a waste of valuable time which we don't know how much we have, right? I think my major obstacle these days are remaining positive. I've always been an upbeat person, but find it harder with each passing day. I stopped taking the Rilutek quite some time ago.
    (3/3) Consider sounds, appearance, feel, and smell. Be aware of each facet of sound and how you're hearing it. You aren't 'trying' to get to any state, or 'get anything' out of this. There are no expectations. You're in non judgmental awareness of the present moment. It's not that you're trying to be non-judgmental, it's that you notice judgement or anything else as it arises and let it fall away as you retrain attention back to the sound of water.

    The point is that our attention is in the present moment, living now, experiencing now, not trying to control the past or future. My 5 favorite videos on YouTube for this are "Gentle Stream #1 - 11 hours," "Calming Seas #1 - 11 Hours," "Campfire Night Sounds" and "Tibetan Healing Sounds #1 -11 hours", and for music, "3 Hour Focus Music: Nature Sounds, Study Music, Alpha Waves."

    MM has been a gamechanger for so many of us, and I always promised to pay it forward. If you try it, let me know what you think.
    (2/3) When we try to live in the future or past, in states of expectation or judgment, we aren't mindful of the present, we aren't living as ourselves. We're focused on how we could be and not how we are, on doing, and not the doer. So when we aren't mindful of the present, we've lost that time, and needlessly added to stress.

    If you haven't already, and if so inclined, as an experiment Kabat-Zinn recommends taking 10 to 30 minutes alone, focusing on say, the sounds of a stream in a youtube video, for example (alternately, you can just play the sound and focus on your body, as the focus can be anything from sensory input to body parts or systems like the breath, or certain muscles, or even a heartbeat), and just letting your body breathe on its own without trying to force behavior. While not pushing thoughts or feelings away, just noticing them when they arise, and letting them drift to the periphery of your consciousness as you bring the attention back to the sound of flowing water.
    (1/3) Katy, I forgot to add a description of what I meant with mindfulness. Presumably you have some experience with it so far, but if not, the descriptions can seem abstract, when it's really pretty simple.

    As I mentioned to another friend, Mindfulness taught me the invaluable lesson of confronting and observing as opposed to trying to push away various stressors, pain, anxiety etc. When we take 10 minutes to a half hour (even always if we want) to just live in the present moment, and face the train of life's stress head on, and just notice it without judgment or expectation, independent of time, stress becomes just another source of energy stripped of its meaning.
    (2/2 - cont:) Forgive the protracted delay getting back here. I'm trying to navigate a mismanaged "abnormal" test result myself, so we're talking about getting another as it's unclear what the results mean just yet. I'm not losing sleep over it, but I'll be sure to keep you in the loop however it goes. Please do the same. I was thinking about you offline, and was glad to finally capitalize on all of the reasons to check back in.

    P.S. If you're so inclined, I have some mindfulness materials I'd be happy to share. At least one of these is regarded as 'the' book to have on the subject, and I have the audio version as well. Anyway, let me know. We can exchange email or possibly message over at ALSTDI.
    (1/2) Hey Katy, I just wanted to stop by and see how you were doing. How is the weather treating you in the Sunshine State? Like any heat intolerant whiner worth their salt, I'm currently abusing a wall fan to hide from any temperature over 80.

    Have you caught the Mindfulness Meditation bug yet? :) A lot of us are dedicating more and more time to awareness, and it's only gotten more liberating with dedication. My once industrial strength anxiety has been superseded by an objective awareness of it. Accepting it and watching it as its own source of energy, like any other, has completely taken the power from it. When it loses the meaning I used to feed it with narratives, and expectations, it's impotent. One of the upsides of dealing with MND is that the last thing we have to worry about is our brains, which is the awareness headquarters. We're fortunate in that regard as I fear that freedom is threatened in conditions like glioblastoma multiforme, various cognitive disorders, etc.
    There's not a lot left to my speech either. My Neuro , who is the best at this in my area, just referred me to a pulm. spec. and to a GI to have my PEG tube placed. Also wrote orders for a Psych. just waiting on them to call me for an appt. That is what I'm looking forward to most, finally to have someone I can vent to. One thing I'm NOT, in all of this, is too scared. You are right about the support. Maybe THAT is the only thing that does scare me. I've my partner Joe and my g. retriever, Max but that's the extent of my support system. I've no family and I don't know a soul here. Not that geography makes any difference, I'd be in the same situation no matter where I lived. This forum is a real lifeline for me. I don't feel so alone any longer. Thank you for volunteering to be of further support to me. I do appreciate that more than you know. I'm here if you need me, too.
    Thanks so much. Sending all sorts of good wishes your way.
    I've been diagnosed just a few months before yourself. I'm not sure what videos Brian has suggested, but please watch whatever they are. I'm a vet and IMHO I'm getting the best care imaginable from the VA. However, being Bulbar as well... I hate to say it, but it's likely to get worse quickly. My speech is all but gone... 12 months after noticing the slur, 6 months after diagnosis.

    Please find a new ALS oriented Dr. ASAP. A Pulmanologist would be helpful, not to mention a good
    Physchologist. This is going to be one hell of a ride. I don't mean to scare you, but you will likely need all the support you can scare up. Do you have any family close by?

    Please keep in touch... I will be here anytime you need some sort of support. Again, I'm only a few months ahead of you, but may be able to offer insight on some future issues.

    Hi Brian,
    Thanks, I'll give them a go. We have both reached the same point, I think. All of the testing started for me last July. By December, ALS was the direction in which my neurologist was leaning. He had already mentioned twice that he was fairly certain it was an MND. By New Year's I had sort of made peace with it myself. I realized that stressing out over it was not going to change the outcome and in the interim it was doing me no good. I was officially diagnosed on February 3rd and I took it quite a bit better than I'd imagined. Guess it never hurts to be prepared. I'll definitely take a look at the videos you suggested, as well as the forums. Feel free to send me a message now and again and let me know how you are doing or if you have any questions I might be able to help with.
    Hey. Just wanted to personally thank you for all of your insight in the Q&A threads. Though I'm not as anxious as some about the outcome of my test as I try to practice mindfulness (living in the non-judgmental present moment), It's still reassuring to find such a great resource, and substantial community in place for this. Incidentally, I authored a thread over at ALSTDI forums called Jnk1 vs TAp63 under the name BSotoSF that you may find interesting, along with the other excellent threads. Hope you're doing well, Katy. Thanks again.
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