Stax – Page 11 – Multiple Sclerosis & Me

Catalyst Sports

This is the name of the organisation that is “dedicated to providing adaptive adventure opportunities to anyone with a physical disability“. The Atlanta chapter provides cycling and climbing opportunities and I have been rock climbing with them every Wednesday night. It’s adaptive climbing so they strap me into a pulley system to assist me while I go up the wall and, while a “regular folk” person would normally only need one person to belay (the spotter, if you will, for someone who is climbing), I require 2 – 1 belayer and 1 person working the pulley. Dom has been taking me and he’s observed that they are not working as hard as they did that first day…I’m not convinced. They also have a piece of equipment called the Wellman (system?) that is like a chair (also fitted into a pulley) that someone can sit in and pull themselves up to the top of a wall. The system hangs freely from the top of a wall (it’s not against it) because I suspect that it’s what someone with no or limited lower body strength can use to go up. It doesn’t require actual climbing, u use ur upper body to pull up to “climb” to the top. I’ve used it a couple of times too and I think that I’ll alternate between it and actually climbing the wall weekly. Additionally, one week Huck climbed with me – he was my going to be my “left side” if you will. We got real close real fast…lol. Turned out that he was more than my left side but it worked out very well and we had a great time that night.

you know I have my spiel to explain my issues and I’ve gone consistently enough that the volunteers who are have been there weekly know what I have going on. The first time I used the Wellman, Huck asked me if I wanted to use a strap for my left hand that essentially keeps it in place around the bar that I had to grip to pull myself up (u’d think that because it curls up, it would do so around the bar eh? no that would be too logical…it’ll curl up tight and probably end up on top the bar rendering it just useless). It was very overwhelming for me because I thought, “shit…they have thought of everyfrigginthing!” and I remember blurting out how happy I was that they were in my life…smh. I don’t know who started Catalyst Sports, but boy am I glad they did and I am exteremely grateful for the volunteers who are there every Wednesday night without fail and who are willing to put up with me and my curling left hand, my stubborn left leg and my consistent cussing. My hero days are but a distant memory but when I’m climbing on my own and trying to get the hand or foot to a grip in the wall expletives tend to fly out my mouth. I always have to remind myself that I have limitations and may not be able to do whatever like regular folk, so I need to adjust because generally I don’t remember and that’s when shit starts flying 🙂

anyhoo, enjoy some more pictures…

Grit and determination going up on the Wellman

See the that black thing to the right of my face? that’s the strap around my left hand

Allyuh hold it dong till next time – ah gone so!

Today, we just jibbin…

last week was a blur. I was out of town and the US actually had a holiday so it was a short week. I blinked and it was over.

my elite group of friends has grown by 1 and I have determined that I have a hard head. Geez, I fell Friday before last week and hit my head on a granite countertop. Sometimes when I fall, I hear the landing (I think) and it sounds so horrible that I can’t imagine what someone else hearing it thinks (especially if they’re in another room or something). I was by G2 for the weekend and Char and I were walking along a corridor when I said to her, “want to race?” Of course she couldn’t say no (cuz according to her mother she runs everywhere) so I’m sure she could think of nothing better to do at the time. She said, “READY?!?” I said, “nope” and continued walking. My plan was to walk to the “finish line” (a table), say “ready!”, slap the table and say, “I win.” Well…I got to the table and leaned to my left to slap it and I have NO idea what happened, but the next thing I knew was that I was falling…to the right! Now if someone can explain to me how one leans to the left and then falls to the right, I’d appreciate it; it makes no sense to me. G2 was standing on the other side of the table and she looked up, got confused about was happening and saw me going down in slow motion. She also almost reached out to grab my earring to help me fus she was confused.

Side note: apparently I never alert anyone around me in any way that I’m going down. It’s always a silent, slow motion fall – cuz almost everyone who’s been around me when I fall say the same exact thing.

on my way down, I hit the countertop. I swear that from what I remember hearing I just knew that things might have been bad. Good news-they weren’t. My head hurt, really hurt (only to the touch; not that I had a headache) for a few days especially when I was combing my hair. It’s still slightly tender but all in all, everything is good. I fell once when OB was here in April but I really don’t remember the last time before that. That is a good thing but it would have been nice if right at this moment in time I could say “I don’t remember the last time I fell”…sigh! I blame MS for all falls. Period!

so I’ve shared before that Lemtrada can affect the thyroid and cause hypERthyroidism or hypOthyroidism-seems so silly to me just choose to cause one or the other not both. Anyway, my blood tests from October thru December showed evidence of hypothyroidism so I’ve been on a daily pill to increase the hormone that is produced by the thyroid. Okay, so all along after that the results have been normal. The last time I went to my endocrinologist, she felt good about what she was seeing, so she relaxed her need to see me. Additionally, even though my blood work came back irregular, I actually had no symptoms of hypothyroidism at all, so she felt okay not seeing me as consistently as before. Last month’s test results were positive for it again and so I have to go back to her and she’s going to increase my dosage of the daily pill. Great! Was able to eliminate doses of the muscle relaxant but now I have to increase dosage of this other pill. Anyway while talking to her I learned that (of course) little is known about what exactly Lemtrada does to the thyroid. She shared that she had a few MS patients on Lemtrada and their thyroid results are baffling, confusing, erratic (all those words rolled into one). Additionally, most patients are non symptomatic so there’s really no telling exactly how to interpret the results.

She told me about someone whose result was 200something – the normal range is .45-4.5 and he was walking around normelnormel like nobody’s business. Mine was 12.65 last month so it’s high but again – no symptoms. I’ve gained 1 or 2 pounds but i don’t think it’s fair to blame my thyroid – i should probably blame the beers.

So,I have no symptoms but have to increase the dosage of this pill that luckily doesn’t have major serious side effects. The one “good” thing, at least to me, is that I am consistently hypo and results are not fluctuating all over the place. oh well…wha yuh go do…file this under things over which i have no control.

I gone so. hol’ it down till next time.

Flying High

This post about my losing the ability to dance is old but still valid. I “dance” like only I can in parties and people dance with me and (in the past) Soca Scooter with no problem but I still yearn for the days when I could move freely without a thought. Additionally, ballroom dancing, Indian dance (a style I’d have loved to learn) and everything else is out. I have seen someone ballroom dance in a wheelchair so that is a possibility but I don’t use a chair (honestly I tried to use one on my own in a store once and absolutely failed) and I’m not convinced that ballroom dancing in a scooter is a possibility. As a result, I have to find things that I can do and hopefully discover that I enjoy.

One of the things that I want to do is skydive. Years ago, I had an opportunity to do it and I absolutely refused to pay $200 and sign my life away to jump out a plane that is howmanythousands of miles up in the sky. Maybe it’s because the MS has stripped away some things I want/like to do or maybe these days, my mindset is “life is too damn short and u only have one to live” but now? I want to go skydiving. The problem is that when it’s time to land, the jumper has to tuck their knees to their chest. Allyuh know that right at that moment, I will not be able to bend those legs and put them anywhere so best I don’t go jump out anybody plane. Now admittedly, I haven’t completely explored if there are options out there for the disabled – I exchanged a few emails with one facility and those didn’t really get anywhere – so it’s something that I might get into at some point.

remember I shared that OB was here for a short time in April so I decided to take a couple days off and was thinking about what trouble we could get into and I remembered that there is an indoor flying facility in Atlanta. Essentially, you get the skydiving experience/feeling without actually jumping out of a plane. I called the facility to find out what options I had. In fact, my biggest concern was IF I’d be able to do it and then if I couldn’t fly would I be refunded (cuz it was pricier than I’d expected). I explained my issues as best I could and fella on the phone assured me that I’d be able to fly. Okaaay then, well lehwe go.

the cost includes a crash classroom training session where u watch a short video and learn the different hand signals that may be used by the instructor who stays with u in the wind tunnel and all the gear u need to fly. So you don’t experience the moment that one would actually jump out the plane – the free fall, but you experience the “floating on air” sensation after the parachute is opened. Everything happens in a vertical cylindrical wind tunnel in which air blows from below at 80 mph and faster. I entered the classroom all the while not worried but eager to explain my issues to whomever. I mean, clearly I’m not normal because I was in my scooter but surely they needed to know exactly what we were dealing with right? well, Ryan (the instructor) said very excitedly when he saw me approaching, “are u flying with me today?” I said yes and he said “great!!” but he made no moves to come talk to me. Hmmmmm…We watched the video and he told us where to go to get our suits. At that point, I felt like I had to say something cuz getting in the tunnel and being thrown around did not appeal to me. I went over and started my spiel…”my hand curls up…I can’t stretch out this arm…blahblahblah”. As I spoke Ryan was looking at me as if he was just waiting for me to finish, and then he said, “I’m not worried about you in there. Not at all, u’ll see. trust me, u’ll be just fine.” I mentioned how i tend to put my faith in people in these kind of situations in my rock climbing post, so once again, i “gearsed up”. Allyuh guess what? He was right! He helped me walk up to the tunnel opening and I was on my own after that. Now he stayed in the tunnel with everyone to ensure that we were stabilised cuz we were all first timers but if someone had just walked up and seen me in there, they would have never guessed that I had anything going on. I thought it would be more exhilarating but it was lots of fun nonetheless.

Afterwards I found out that iFLY (the name of the facility) offers an “All Abilities” night monthly. Turns out that one night every month, they offer a half price opportunity for people with all disabilities: “All Abilities Night at iFLY is a unique event that makes the dream of flight a reality for those in the special needs community”. Anyone with any disability who is interested in flying can book time and get to do so without issue. Guess who will be going back to take advantage of that offer? I missed the opportunity in April because I waited too long and the time slots that worked for me were sold out. I’ve been all over the site like white on rice this month so as soon as they announce the date in May, I’ll book my time.

I have a video of my experience but for whatever reason, i can’t get it to play so you just have to use your imagination to see me in that wind tunnel 🙂

Life is too short…live like there’s no tomorrow!

Introducing Optimus Pride

Soca Scooter is no more.

he had a good 6 year run and at first, he never failed me. Alas, the time eventually came when I couldn’t rely on him any longer. It made no sense that I would be ready to bounce starter and mash gas and………nothing! he just would not move. The vexing thing is that I knew what was wrong but the problem was that I just never knew when it would happen and the time I took him to be repaired, he worked perfectly fine. Now that I’m writing this and think back, the problem started happening a while back but somehow I was always able to get him moving again and never realised that it was actually the start of an issue so I guess it was just the end of the road this time. Anyhoo, I just couldn’t afford to take any more chances and I had to replace him. I’ve talked bout Bumblebee here already. He is my Lamborghini…my weekend ride if u will, and driving up the road in my neighbourhood is just not his scene. I needed another “Corolla” to handle that and all the jammin I put the things thru on a regular basis. Enter…Optimus Pride.

Optimus Pride is like a Soca Scooter2.0 and he’s a chunx bigger. He breaks apart when I have to load him up into a car and he’s low and close to the ground so I won’t feel nervous driving on a slight incline, all the while hoping with everything in me that we won’t tip over. He’s .6mph slower than SS but Bumblebee has gotten me used to the slower speed so no big deal. It’s weird though, the handles and controls are shaped differently and for some reason, there are times (more often than I’m willing to admit) when I press the control at first and we head in the wrong direction. What the?!? Have u not been using a scooter for the past 6 years?!? It really doesn’t seem to make any sense at all, but it is what it is. OP (not to be confused with OB 😉) also has front and back wheel suspension so his ride is nice and smooth.

his name…allyuh know u hadda indulge me.

like Soca Scooter, he’s originally red. Unlike Soca Scooter he came with alternate blue panelling that can be switched out depending on the mood of the user. I was thinking about what to name him and I figured that maybe I could stay with the “Transformers” theme and use both colours. Hmmmm…Optimus. Optimus Prime is red and blue so I can switch out a few of the red panels and use the blue. “Oh self…not a bad idea at all…k, i’ll call him Optimus.” Well the problem with that was that he eh no transformer. when people see Bumblebee in action going from folded to not, he’s a transformer. Optimus doesn’t transform, he breaks down and apart…yes that bothered me (say what u will about me). A friend suggested “Optimus Pride”. Yuh see he’s a Pride scooter…that’s the brand. I thought it was perfect; staying in the “Transformers” theme without actually being a transformer. Quite clever if (by chance) u ask me 🙂

Saturday I was out on Bumblebee and someone said to me, “is that a license plate u have there?” I replied with a “hell yeah!”. I think it was Miami carnival 2013 that I had the idea to create a license plate for Soca Scooter – it was Stax3.25 (my car at the time was Stax3). There was no way that I’d know at that time that five years later, I’d be asking Asal to make Stax5.25 for me.

Optimus Pride – see the blue panel on the front wheel mud guard

Aye allyuh have a great week; I gone so.

Health, Hope & Hops

Allyuh ever buy a ticket to go somewhere just because? U know nothing about it and have zero expectations and as u buying the ticket, u say, “well self. how bad can it be? I mean, it have alcohol so…jes buy the ticket.” And then u go and u have the time of your life? That was me with Health, Hope & Hops last year. Lol. It’s an annual fundraiser held by the MSCA. I’d seen the emails for it before but never went. I don’t remember what made me decide to buy a ticket last year…actually….now I think about it, every year since i put them together, Claire the organiser, avidly works with Aunty P at the Men Who Can Cook event so I decided to go to support Claire. Besides, that meant that i was doing my part to ensure that the MSCA stayed in business – I need it. i bought my ticket. Soon after, G told me that she was going to be here that week so we organised for her too.

“HH&H” is held at a brewery in downtown Atlanta on a Thursday night. It starts with a complimentary cocktail hour between 6 and 7 followed by a 4 course dinner that’s “MS healthy and prepared personally for the evening”. Each course is paired with either beer or wine. G got there right around 6 (cuz she wasn’t working that far away) and took advantage of the cocktail hour. By the time I got there at 6:45ish I was able to get a margarita that was the worst I’d drunk in my life so the evening really started on shaky ground -I eh go lie. There were a few opening remarks and then everything really began. We didn’t know what to expect, so we figured that based on the menu choices, we’d divide and conquer so that between us, we’d get a taste of everything. Well. What we didn’t know was that everybody got everything on the menu and we didn’t get beer OR wine, we got beer AND wine with each course if u so chose – we chose. We thoroughly enjoyed ourselves and the waiters weren’t stingy with anything. Thinking back, neither of us can really pinpoint any ONE thing that made the night so good. I guess it was a combination of the food, the people, the cause and last but not least, the ever flowing alcohol. It was a “school” night but we didn’t care…we were having a great time. At the end, I knew that I was never going to miss it again.

This year, it was held on April 19th and I roped in SD, Frit, K and Dom and OB got lucky because he happened to be here. Once again, it didn’t disappoint and Frit even went as far as to to say that it was “the best night he’d had in a long time”. There was a waiter there who seemed familiar to me and I asked him if he was there last year. His reply was yes and he went on to say that he always signs up to work the event because he always has such a good time doing it. G couldn’t be there this year, so I tortured her with pictures throughout the night. Once again, none of us can really pinpoint exactly what it was that made the evening so great, but everyone had a fantastic time.

Both years it was on the 2nd to last Thursday in April, so I’m thinking it’s almost safe to say that that’s when it’s held every year. If you’re ever in Atlanta around that time and looking for a good time for a good cause, be sure to check it out. Health, Hope & Hops held by the Multiple Sclerosis Center of Atlanta and hosted by the staff at the 5 Seasons Brewery. And guess what? for everything you get out of the night, it is dirt cheap and sooooo worth it.

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