Happy Pete – The Name Says It All!

Seriously! I’m really happy that I found another amazing example of a person loving their life, living an awesome life, despite dealing with MS (or any other medical condition.)

I’m continually adding to my list of “personal heroes”!!!

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Musical Monday – Ave Maria (Bach-Gounod)

Hello on this incredibly snowy Musical Monday!

I’m getting braver! Here’s a recording of me actually performing the Bach-Gounod Ave Maria in Church for their Jubilee celebration, three nights ago. I got sick a few weeks ago and haven’t quite recovered yet, but now that this celebration is over I can maybe relax and sleep. For a year or so. Or at least until I feel human again. Crappy compromised immune system!

Anyway, this was a “Damn the MS and just do it” situation for me. I had made the commitment, so it didn’t matter how I felt, I just practiced and practiced and then performed, and I’m pretty proud of how it sounds. I wouldn’t want to be in this kind of situation very often, but I proved to myself that… just maybe, I’m more capable than I give myself credit for. Kinda cool!

And yes, it really is snowing at the end of April. It’s been snowing on and off for days. I’d rather have snow than flooding, but I *would* like to see the ground at some point. And, you know, summer and stuff.

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Musical Mondays – Mike Tompkins is My A Cappella Hero!

Mike Tompkins is amazing – he started out as a beat-boxer and now he does multi-layer a cappella tracks like this – his amazing version of Adele’s “Rolling in the Deep.”

I sent this to my voice teacher, and she pointed out that not only does he sound amazing, but his pitch and tempo are absolutely perfect for each layer that he recorded.

So: my lesson here – don’t layer bad tracks hoping that, blended, no one will notice the errors. Don’t hurry them to just “get it out there” unless there’s a reason to do it. (When I first started blogging, I was told “sloppy success is better than perfect mediocrity” hahaha!) Don’t try to get everything recorded in a single session, your voice won’t like you much after 8 or 9 hours of singing. And most of all, work each layer until you like how it sounds by itself. THEN put everything together and publish it, because THEN you’ll be proud of what you’ve done!

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MUSICAL MONDAY – MS, A CAPPELLA MUSIC, AND YOUR BRAIN

Welcome to Musical Monday! I’ve decided to show a little of what’s possible with A Cappella singing, and why I think it’s an amazing and valid tool for anyone who is interested in developing their voice AND their brain.

First off, here’s an example of a crazy amazing song by a Grammy award winning A Cappella group called the “Swingle Singers.” Notice that even though (obviously) they are ALL amazing singers in their own right, the really important thing here is the vocal blending and harmonization, which makes the whole song a different experience than just a soloist standing up with a microphone. They’re not even using words (although there may be words in a language I don’t know at the very beginning and end?) and it brought tears to my eyes! It’s such a gorgeous arrangement.

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I’ve found an article that explains really well exactly *WHY* A Cappella works as a learning tool – not only does it force you to really think about the melody and the music, but simply LISTENING to it will help develop your ear and help create more of those ever-important neural pathways. Since I have MS, I’m *VERY* interested in anything that helps build more pathways. I want to keep exercising my brain, and I’m hopeful that exercises like this, coming up with new ways of thinking about “normal” things like music (or art or ANYTHING creative) will help to replace some of the pathways that I’ve lost. I really feel like I need to pay more attention to lifelong learning than most other people, so it might as well be with something I honestly enjoy doing. THIS IS WHY HOBBIES ARE SO IMPORTANT!!! Creating anything new can actually change the physical landscape of your brain, especially if you make a HABIT of creating new things. Even just doodling a page a day can help.

CLICK HERE FOR THE ARTICLE ON WHY A CAPPELLA IS AWESOME FOR EAR (AND BRAIN) TRAINING

As always, I’d love to hear your views on anything I’ve talked about here. Just click the “LEAVE A COMMENT” button below!

Hobbies and MS – Musical Monday – The Rose!

I’ve talked before about hobbies and singing in a post called Hobbies, Compromise and MS. I finally decided to upload a recording of me singing something! Not opera though. I’m not brave enough for that yet.

I’ve been playing with Audacity (BEST free music editor out there IMO) and came up with this – it’s all me singing, 14 different layers, and although I know there are a LOT of errors in timing and pitch, I’m still pretty proud of it!

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So there it is, my proof that hobbies don’t need to end with a medical condition, or going on long term disability. Consider taking up a new hobby that suits your current skill-set, since you NEED to find something enjoyable in your life! Or work with something you’ve always been interested in but haven’t had time to experiment with. I finally have time to play with music and harmony! It’s a learning experience – from this I learned I REALLY REALLY need a metronome because I actually sang each part slightly slower than the last, and I did the lyrics last, so by the time I got to them the timing was incredibly WAY off. But I did my best, and I think it sounds pretty good.

Hobbies are really important for your peace of mind. I made the mistake of cutting myself off from my hobbies for a LONG time, and my confidence and self-concept really suffered as a result. Hobbies help keep you rounded as a person, the opposite of “putting all your eggs in one basket” as I had done with work. I needed to rediscover my hobbies just to feel human after my “basket” suddenly disappeared. It took a long time, but I’m starting to feel better, because my hobbies are things I can actually do! Singing is a reminder that I didn’t suddenly stop being a person, with skills and talents, after becoming unable to work.

I’m going to try and post something music-related every Monday. It may be a description of how to make a video like this, or another song, or a cool tutorial. I am also open to suggestions here, just comment below! Yay for Musical Mondays!

MS Adventures – Set Totally Unexpected Goals!

Okay. I have a confession to make.

I have to admit that, even though I don’t have television (gasp!) I do occasionally go on Youtube and watch clips from the talent reality shows, like America’s Got Talent or Britain’s Got Talent or American Idol. I love them because sometimes, something totally unexpected and amazing can happen, completely out of the blue. This was one of those clips for me, and it’s NOT a normal “motivational moment” clip. I’ll explain after the video!

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So this girl comes out, dressed in pink latex to get attention, but not for the reason anyone else thinks. Her goal is NOT to get to Vegas or participate in any more reality shows, but to do something very specific: to meet Howard Stern. The REASON she is my hero is that she set a COMPLETELY DIFFERENT goal than anyone expected, AND SHE DID IT! She just dressed up in something crazy and came up with enough of a “talent” to get an audition, because she knew that’s all she needed. She IGNORED the people who said she wasn’t good enough, because they were assuming the obvious, without finding out what her real goal was. And she was 100% successful in her real goal. I may question her general sanity and taste in men, but she did what she needed to get what she wanted, without hurting or demeaning herself or anyone else. And I think THAT’S awesome!

PS Yes, I know some people may accuse her of demeaning herself by pouring herself into that pink latex dress, but I see it as a costume for the character she portrayed to get on the show. I don’t think she took anything about that audition seriously other than meeting Howard Stern. Plus, kudos to her for having the ladyballs to wear latex in public while weighing more than 98 pounds!

MS Adventures – Modafinil, Day Three – Coming to Terms With It

Three little pills, spaced over three days. I’m super jittery but I feel AWAKE! Alive for the first time in forever. Looking forward to testing my limits all over again!

And a little afraid of the crash. But only a little.

Yesterday I didn’t have my normal morning coffee, because I hoped Modafinil would do enough to keep me awake. What I FORGOT was that there’s no actual caffeine in Modafinil – it works on a totally different part of the brain. So by about 2pm I had the (by-now-familiar) withdrawal headache. I have a love-hate relationship with caffeine – we break up occasionally, but I always go back. Anyway, I don’t like drinking coffee after noon or so, because it can interfere with my sleep, so I just waited it out. I kept telling myself “You’ll go to sleep tonight, and in the morning you’ll get up and have your coffee, and it’ll be AMAZING.”

So I just went about my day, doing housework and stuff (MUCH more housework, and more quickly than usual, by the way!) and it was fine, my energy levels were still pretty good, even with the low-grade headache. Right up until about 7pm when the Modafinil, rather abruptly, stopped working. Left my system. Done.

I was at a Weight Watchers meeting. (I’ve discovered that the new system is PERFECT for me, in combination with the Wahls Protocol, to help me make sure I’m getting the nutrients I need.) Anyway, I got hit suddenly with a dizzy spell hard enough to stagger me. I was standing in front of a table, and I’m really glad the table was there, because I’m pretty sure I would have hit the floor otherwise. One of the ladies asked if I was alright, and I said “It’s fine, my new alertness drug just wore off.” But inside my head I was frantic: “How the hell am I gonna get home? I can’t drive like this!” Thankfully, I quickly realized two things: 1. I moved back home so I had LOTS of people I could call if I really needed help, and 2. the dizziness was already wearing off, even if the brain fog wasn’t.

And I honestly think the brain fog wasn’t that bad, it was just that the CONTRAST between the alertness I had felt and then the exhaustion when it wore off was so sudden and pronounced. I had just moved from what felt like my “old, pre-MS normal” to my “MS normal.”

And it scared me. And then I started to over-think the situation (as usual) and freaked myself out even more.

Modafinil isn’t a physically addictive drug. That means my body apparently won’t develop a tolerance, so once my Doctor and I find a working dosage, I won’t have to increase it over time to keep the same effect.

But psychologically? Whoa Momma! I’m incredibly grateful right now that I don’t have an addictive personality. The only addiction I’ve ever dealt with is caffeine, and I’ve weaned myself off it several times, just to make sure I still could. Heh. Another control issue?

But Modafinil? The thought of feeling normal, and all I have to do is take this little pill? One teeny tiny pill, to make such a difference…

That terrifies me. Because I want it so very, very badly.

But that means giving control to this little white pill, doesn’t it? And I know I’m going to do it anyway. The thought is accompanied by both exhilaration and fear.

So yesterday, as I said, I told myself “You’ll go to sleep tonight, and in the morning you’ll get up and have your coffee, and it’ll be AMAZING.” And it was! I actually sat and REVELLED in the coffee, quietly of course. Too early for loud revelling, and besides I hadn’t had my Modafinil yet, so I wasn’t feeling particularly bouncy.

But I was waiting for it, looking forward to it. Craving the thought of feeling normal, if only for half a day. And I understand now, in a way I never have before, how insidious addiction could be. How somebody (with fewer control issues maybe?) could be completely overtaken, suffocated by it. But welcome it anyway.

Holy crap that scared me.

And then I realized that, once again, I was over-thinking. Maybe, just maybe, I should look at Modafinil differently. I mean, if I learned that a friend was on antidepressants, I’d applaud them for reaching out and talking to someone, and taking control of their situation. Too many people, I think, still assume that therapy exists for the weak. I think it exists for those strong enough to talk to someone about their lives, people who are proactive and want to change things about their thoughts and situations. (Ahem. I finally made contact with a therapist, to discuss my control issues and learn to deal with “my new normal.” I’m now on a waiting list. But I’m still happy I finally reached out to someone about it!)

Anyway, maybe I should think about Modafinil the way I think about antidepressants: it’s a way to help regain control, not a way to give control away to a drug. So I asked myself a few questions:

Q: Is it a necessary drug for me to take? Will my condition get worse without it?

A: Well, no. Most likely not. There have been some studies indicating that Modafinil may slow MS progression, but not enough to make it “a necessary drug.”

Q: Will my experience of life be enhanced by this drug? Will it help me participate more fully in my own life?

A: Yes, I believe it will.

Those simple questions, that stated belief, has leached away most of my fear regarding any loss of control. In any case, it’s only day three, and I may have a lot more to learn about this lol!

So my lesson for today is this:

BE AWARE OF THE CHOICES YOU MAKE, AND WHY YOU MAKE THEM.

That’s it, that’s all. There are always consequences, so when you’re making what you feel is a major decision, think about it. Be aware enough that you can feel good about what you decide. Write down your reasons, because it’ll help to remind you later WHY it was a good decision for you at the time. Is the end result worth what you feel you’ll have to give up? If your answer is yes, then just do it!

MS Adventures – Modafinil, Day One

Today I went to my Doctor and talked to her about going on Modafinil. For those of you who’ve never heard of it, Modafinil is an alertness drug that was originally marketed as a treatment for narcolepsy and other sleep disorders. It’s also marketed as Provigil in the US and Alertec in Canada. Ages ago, my Neurologist suggested I try it, since my major MS complaints are fatigue (Hah! Total exhaustion more like! I wish there were more descriptive words for it!) and cognitive dysfunction, more colloquially known as “brain fog.”

CLICK HERE TO LEARN MORE ABOUT BRAIN FOG

At the time, I said no, because 1. I dislike taking pills and 2. I was in the middle of learning about behavioral- and diet-modification to try to control my symptoms. Now, I feel like I’ve taken those as far as I can, with some success (I’ll write about my diet discoveries soon) and I was ready for the next step. Pharmacology. In other words, pills. I’ve got a few articles below if you’re curious about it, or just do an internet search – there’s quite a bit of information about Modafinil, since it’s been out since 1994 or so, and used to treat several different ailments.

CLICK HERE FOR THE WIKIPEDIA ENTRY

CLICK HERE FOR INFORMATION ON MODAFINIL AND MS

CLICK HERE FOR SOME HISTORY ON MODAFINIL

So! I’ve taken my first pill. Once dose, once a day, in the morning. It’ll be up to me to discover if I need to take it with food or not. I just took it, so I’m not sure exactly how my system is going to react to it, but I’ll let you know tomorrow. I’m both scared that it won’t do anything and excited that it might!

PS I just noticed I used the word “colloquially” in the first paragraph. I feel smarter already!