Stax – Page 9 – Multiple Sclerosis & Me

A Lil Story

So a couple weekends ago a few of us went to brunch. We started at one restaurant ended up staying quite some time so food and drinks was flowing. As we were leaving, ASal suggested that we should walk the 2/3 blocks to another bar/lounge that had a great vibe (did I mention that this was a Sunday?). Not people to turn down any kinda lime, we all said OK! We got there and were seated but no one came to our table. Finally, after many complaints, a guy walked over apologising profusely and took our order. They were offering some kind of Sunday brunch drink special and so naturally we took advantage of that and got a couple appetizers. Well when the order came, we noticed that there were more drinks on the table than we ordered and found out that the waiter doubled up on everything because we’d been waiting so long. Well looky here, that Sunday just got so much better.

anyway we sat there liming for a couple hours and of course at some point, I had to go use the restroom. I was using Bumblebee and let me just say that he doesn’t have a real tight lock when we are turning corners. On Optimus Pride I can buss down a u turn in the tightest spot, on bumblebee? Not so much…it’ll take at least a 4 point turn. Anyway I left the restroom and my left leg was giving a little trouble to bend and go up on the scooter so I just left it hanging off cuz I didn’t have far to go. I got to a point where I had to bend a corner to get back to our table and as I turned, it was a little wider than it should have been and that left leg that was hanging off the scooter ran right into a life size Jenga game that I guess patrons of the place could play as they wished. Jenga pieces flew everywhere and, oh the crash as they came tumbling down. Allyuh know that I started laughing hilariously and just couldn’t stop even though I was horrified. The only thing that would have made the moment better was if I’d remembered to shout “JENGA!” as the tiles fell to the ground.

Luckily it was late by then and the place had really emptied vs. when we initially got there…smh…dull moments are few and far between.

not the best quality pictures but u get the point… 🙂

It’s All About YOU!!

I write this blog to share my stories, my experiences, all my trials and tribulations with you. I’ve shared that I actually had to be convinced to do it because I didn’t think that anyone would be interested in MY story. As time went on, I realised that telling the story not only teaches everyone 1 or 2 things about my wretched disease but sometimes it also helps to put things in perspective. For example, I’ve been told things like “gyurl. I read that post today and I have to say…self. Get over this (inset whatever stress). Stax always saying she only have one and a quarter hands and she still laughing and smiling.” Comments like that always make me smile and help me to push thru and keep fighting.

i don’t know if you all know just how much your support really helps me. I’m talking about you who read the blog, you my Facebook friends, you my family, you my inner circle. Those of you right here in Atlanta and those far and wide. A few years ago I was having a rough day (don’t remember if it was ms related or just some bullshit at work) but it was around the time of the annual Men Who Think They Could Cook fundraiser in Atlanta (it’s an annual fundraiser put on by KPM that benefits the MSCA on my behalf) and just reading everyone’s comments (about me, about the event) and all the ole talk back and forth amongst the competitors completely changed my mood and lifted my spirits. I say all the time that it just isn’t always easy being me but all your support really makes a difference.

I am extremely grateful for all the physical support (the lift ups, grocery and farmers market runs and cooking to name a few), the emotional and mental support (laughing with and at me and being a sounding board if/when I need it) and then there are things like this:

Shar created this without my knowledge to be displayed at this year’s Men Who Think They Could Cook. This was such a simple piece that was so well thought out and put together. The first time I saw and read it, my pores raised.

Little things like this make it easier and helps me find the strength to steups at the ms and not allow it to get me down most days. So thank you! Thank you…to all of u for everything that u do (even when u don’t realise)!

Therapy at the Shepherd Center

I’ve done a few sessions of both Occupational and Physical Therapies thus far and both are going well. Time spent at the Shepherd Center is always time well spent.

Rebecca, my occupational therapist, works with me to improve and/or maintain the skills I need to function regularly everyday and as such, the care of the left arm and hand fall into the OT range. I don’t know that I really ever explained what has happened to my left arm…just like my left leg, it is spastic. The muscles used to open my left hand are tight and tense, hence the reason it always curls up and constantly looks like I’m forming a fist (the good news here is that it doesn’t lock up like that; it’s very pliant and I can manipulate it if I want). The same stands true for the muscles along the outer arm so the arm is hardly ever really straight and if I’m not focusing on it at all (or not holding the walker), it is almost always completely bent. Besides the normal exercises of moving something from one place to the next, which is so extremely frustrating when u have a “pok hand”, I have used the Functional Electrical Stimulation Bicycle. The bike works similarly to my bionic foot by stimulating the nerves in my hand and arm to encourage them to function normally. Rebecca placed electrodes on my wrists, forearms, biceps, triceps and the back of my shoulder blades, strapped my hand in place and as the bike started moving so did I to power it thru (pedalling with the left arm). I’m sure that I would not have lasted as long as I did without the stimulation and my movements would not have been as fluid. Shepherd Center offers membership in an MS Wellness program where one can go use the facility and all the equipment on a regular basis and I sure wish I can join to take advantage of everything they have to offer consistently but alas, it’s only available and staffed M-F 8-5, so while I may be able to make it work, it’ll take a Herculean effort of coordination etc to do so.

here’s a short clip of it in action:

IMG_4262

the other piece of equipment that I used (and already told u about) is the Bertec Balance Plate. I stand in front of an open dome if u will on a platform that has sensors to pick up how I’m standing to measure how balanced I am. Additionally, the inside of the dome is a screen on which moving lines, moving circles etc can be displayed. Is my weight distributed evenly between both legs? When the platform moves, how do I react to get back in balance? When the display changes, do I lose my balance and how quickly do I regain it? You get the picture…some of the exercises were easy enough to do and then there was this one below…lol. In the grand scheme of things, I didn’t do so terribly badly but multitasking is when I tend to lose “form” and my reaction to things getting out of whack needs some work (it cemented one thing that I tell people all the time – I shouldn’t laugh and walk at the same time).

I wish I had some other pictures of the entire machine but say what.

The goal of that exercise was to keep that yellow star in the middle of the grocery aisle as I moved thru. Started off easy enough and then boxes started appeared in the aisle that I had to avoid hitting and wouldn’t u know it some of the boxes were moving side to side. When Joy, the PT asked me what dairy products I saw on the shelves, I said “wait? Wha???” Multitasking! Now I had to maintain my balance, lookout for and avoid hitting the boxes AND keep an eye out for dairy products? I told her that I think I’d seen a fish fly by! At some point the platform may have started moving too. I worked my ass off yesterday morning, no doubt. In fact, it was funny because by the time I reached back home and throughout the day yesterday, I noticed that I really wasn’t keeping my balance very well but that was no surprise really, cuz those muscles put in some good work that morning.

Alright. Well I gone so. thanks for passing thru…as u were!

We limin

funny. Some posts ago I talked about being surprised when people correctly guess that I have ms. Well, I saw someone and correctly guessed that she has ms too; now I have a slight understanding of how we move similarly. This was a woman I’ve seen in passing for the past 2 months or so. We sit about 7 seats apart in the Mercedes Benz stadium every time Atlanta United plays a home match and I knew that she walks with a cane but of course I never knew why. Last week Saturday she came over to me and started asking about my scooter cuz she was wondering about whether she should get one and she always saw me on mine and liked them. We were talking and then she asked if we could exchange numbers so we could talk further. I said yes and she got up to walk to her seat to get her phone and I looked at her as she did so. As soon as I saw her left leg almost making a circle as she moved it to take a step with it, I thought “oh my. Wonder if she has ms? (J refers to it as the MS walk) When she came back I asked her if it was okay if I asked what was wrong and she responded that she has ms. Now hear how I’m a jackass. I think I mentioned this before but can anyone tell me why I react excitedly when I learn that someone else has it???? It’s not like I think it’s a good thing but for some reason I always react with “OH!!! Me too!!!” like we’re in some kinda exclusive club or something. I’ve committed to stop reacting that way and really bringing my response down a notch going forward. Smh

i had a scare (of sorts) recently. Long story short, Bumbleebee broke – literally – his handle bar broke in two. One side actually came off in my hand as I was rolling around somewhere. I knew it was cracked (won’t bore u with those details) and I probably should not have been using him but I thought I was being careful.

Anyhoo, I’ve only had him for a year and a half and he wasn’t cheap so I really didn’t want to have to discard him already . Luckily I was able to get in touch with a welder who pieced him back together and, although he is actually not currently in my possession, he is back in business and we cooking with gas again.

I know I all over the place today but we limin – that’s what it’s all about. I going and toot my own horn lil bit. Many people have called me courageous, inspirational, heroic…I accept all the compliments graciously, but honestly, I don’t think of myself that way at all. I dunno, I guess my feeling is that for some reason (wish I knew why!), this was the hand that I was dealt and I just have to figure shit out as I go. The one thing that I’ve realised though (and quite frankly I don’t know if I was like this all along) is that I have a knack of making people feel at ease and quite comfortable around me in spite of the situation. Additionally, people seem to be drawn to me…I’m talking about strangers too. About two months ago I went to an appointment and I was actually using Optimus that day and a guy and his aunt observed as Dom removed him from the car and I rolled into the office. They approached me and fast forward two weeks later and I was talking to Flo on the phone giving her advice about buying a scooter. I was chatting with RB last night and his exact words were “…u have ah unique kinda way bout u where u does make people…not feel weird”. He’s right. Like I said, I don’t know if I was always like that but I can say without a doubt now that people are drawn to me and I make them feel like “hey. It’s okay. Stacey will be good..everything go be alright even under these circumstances.”

Alright. that’s it; i gone…hol’ it dong till next time.

Back At It

It’s no secret that I absolutely hate cold weather and hibernate during winter. I go nowhere unless it’s completely necessary…if u think walking thru cold air is bad, try scooting thru it; it makes me angry. Not joke mad. Really friggin mad! As a result, I did not deem physical therapy a necessity at the beginning of the year and I waited until about Marchish to start the ball rolling to get on the waiting list to go back to the Shepherd Center. It was a long ass wait this year and when I finally got the call, I couldn’t get scheduled for my evaluation until sept 4. Once again, I’ll be going to both Occupational and Physical Therapies and the OTherapist is the same as last year. I like that cuz I feel like we can build on what we started last year and I don’t really have to explain stuff all over again. My PT is different but the old one is still there and actually got a promotion so he’s already filled in the new chick on what and how we worked together. I’ve already officially started PT and my first session of OT is later today. After the evaluation, I felt good about a few things w.r.t. PT.

– I was seen for 9 weeks last year; this year it’s only 6 (I take wins – big or small).
– Joy (the therapist) could definitely see/determine/conclude/all thosekindawords that my left side is the affected side and then she said that there was a little spasticity – further solidifying that using the CBD Oil was a bess decision.
* I know it’s made a difference, anyone who has had to deal with this left leg on a regular basis knows but to hear a professional say that there’s “a little” spasticity? WIN

Her primary focus over the next 6 weeks is going to be my balance. Last year I talked about all the “toys” at Shepherd and this year, because balance is going to be our focus, I’m going to be “playing” in the one that I never got to use last year because it was brand new and the staff hadn’t been trained on its use yet. It’s a balance somethingthingahmajig….can’t remember right now what it’s called but it measures how balanced I am when sans walker I’m standing still (eyes open and closed), how I use my body to get back in balance if somehow I’m thrown off kilter, whether I stay in balance while lines are moving in circles on a screen in front of me and the platform on which I’m standing is moving back and forth and a slew of other shit. During our first session, Joy got a number of baseline measurements and over the next 6 weeks, I’ll use the machine to train (the body and brain to work together to keep me in balance) and the goal is that my results will have improved at the end.

I’m also giving some thought to transitioning to Shepherd as a full time patient for reasons that I cannot share but I’ve put out some feelers and hopefully that will materialise soon. The MSCA has been good to and for me over the years and I’ll miss seeing some of the faces but a gal has to do what a gal has to do and at the end of the day I have to make the right decision for Stacey.

In other news, I hadn’t been rock climbing because of planned travel and well, life. I finally went consistently again over the past two weeks and geez, talk about kick my ass struggle. The volunteers who were with me Wednesday night were very encouraging and cheered me on as I went up the wall but I was disappointed in how I climbed. I made it to the top of the wall (on my own and with some boosts from the pulley system into which I’m strapped) but I took so long that I wasn’t completely happy. I knew that I was being too hard on myself but one of the reasons is that the nagging question “is it because my disability is getting worse?” is always floating around in my head – I always think of the worst case scenario. If I climbed this same wall two, three times before and now I’m really struggling, that must be it right? Common sense doesn’t always come into play at times like that – “maybe it’s cuz u haven’t climbed in a month and a half Stacey so u’re just a little rusty” nope. That thought never enters my head.

Anyhoo…that’s it for today. Allyuh hol’ it dong, I gone.

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