Random Thoughts – Page 8 – Multiple Sclerosis & Me

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.

Grace

I’ve been missing. Forgive me; I travelled a lot in August then family in town the first weekend in September which included a holiday and a short week. It was a whirlwind and now September may as well be over cuz time goes by so quickly. Anyway, back to our regularly scheduled programme.

Two things still fascinate me even after 13 years of dealing with this disease….hmmmm, lehme say 8 years cuz I started using my canes in 2010. They are:

* When people accurately guess that I have MS
* Just how helpful people (read strangers) really can be

I remember years ago I was flying somewhere. I’m assuming that it was before I started using my cane and maybe before I started using the wheelchair assistance. Anyhoo, I was putting my shoes and shit back on after having gone thru security and the lady sitting next to me said, “u must have MS”. It floored me because you have to remember, back then it was a disease about which very little was known. It wasn’t like now when I swear I hear of someone being diagnosed every Monday morning – heard of someone just this past Sunday. When I said “yes how’d u know?”, she told me that her daughter had it and our movements were very similar. A couple weeks ago, the Lyft driver who picked me up was in an SUV. In the past anytime I realised that an SUV was on the way, I’d cancel. These days I cyah bother so I just figure it out and let the driver help me as needed (except for the time that saddist showed up in a Ford Tundra so I just sent him along his way – there was no way I coulda get into that!). Well after I was finally in and fella jumped in the driver’s seat, he said “MS?”…turns out that in a prior life he was an EMT so once again, he’d seen patients whose movements were similar to mine. It’s interesting for all the unknowns and different ways that it can affect patients, when mobility is the issue, our movements and coordination appear to be similar.

so then there was Ben who said, “oh. My mother has MS too”. He took me completely by surprise because he was the scooter delivery guy (the first time I’d ever used a scooter, it was a rental and that prompted the Soca Scooter purchase) and I was just standing in my garage. Wait…what??? How the hell do u know??? Turns out that he saw my tattoo that I’m “Fighting MS”…I’d gotten it the day before and completely forgot that it was there – DUH!

Dealing with having this disease has pushed me to be somewhat shameless in the sense that if I need help with anything I’m going to ask whomever is around. If you’ve been reading my blog all along u know that I used to be a “hero” or at least try to be (doing things on my own and not asking for any help). Well over time I’ve learned that asking for help is not a bad thing (and lehwe be honest, the help makes things move so much faster) and if someone offers to help, I say sure whether I need it or not. About a month ago I was at a bar and was waiting to use the restroom. It was a fairly large, single, ladies room and as the person walked out I asked her to hold the door for me to roll in – a door that swings out is much more difficult for me to manoeuvre than one that I can just push in – and that one swung out. If I remember correctly, at that point she asked me if I needed any other help because she’d be happy to assist however she could. Of course I said thanks but no thanks cuz I was heading to the restroom afterall. I don’t need help in there and well, this was an absolute stranger – hello! But then if I remember correctly, she asked me if I was sure and then said, “I can just come in to lock the door so u don’t have to worry about it”…I eh go lie, sometimes I do wish that I didn’t have to lock the door cuz rolling back and forth to do it can sometimes be a pain in the ass. I said sure. She stayed with me, she locked the door, helped me stand to move from the scooter to the goddess and back, grabbed the paper towels for me to wipe my hands and all the while, I just couldn’t believe what was happening. She told me that her name was Grace and for years she’d been helping her mother who is a paraplegic and so she understood just how a little help could go a really long way. It wasn’t a bar that I frequented and I never saw Grace again but for those 1o minutes we were in that ladies’ restroom, it was like we were best friends.

I struggled with sharing this story because I wondered if it was too much but in the end, I figured that I have nothing to be ashamed of and it’s a “warm and fuzzy” story about how selfless people can actually be sometimes. It’s Wednesday…Spence always used to say, “weekend start Wednesday”…allyuh do enjoy ur weekends!

Ah gone!

All About the MS

This post contains blunt honesty and graphic descriptions…apologies…it is what it is.

Long time I eh focus on the ms itself (I think I may have shared that I don’t capitalise this so as not to give it a whole lot of importance…kill me – it’s the little things).

Since Lemtrada I cyah lie, I’ve been stable – no disability improvement per se (purely as a result of Lemtrada) but stable. At the end of the day, guess I’ll take that and run with it. It’s very weird though, actually maybe it’s not weird it’s just multiple sclerosis. Before my first infusion at the end of 2015, when I woke up at night to pee, my bladder wouldn’t empty. I would pee, think I’m done and go back to bed and as soon as my head hit the pillow, I’d have to get up again. Steups…when it first started happening I thought that it was a normelnormel thing, only to find out that no; it’s the ms. I don’t remember what I started doing but I assume that I would stay on the goddess till the second stream came out. Post infusion number 1, that shit stopped. I can’t tell u just how excited I was to realise that I could just go back to bed without issue. For a year, I was peeing at night quite blissfully…and then came infusion #2.ugh! It started back.

was it coincidence? Hell I don’t know but it’s quite strange in my book. Steups. The other weird thing is that it only happens when I wake up at night and it’s always very urgent the second time around; I don’t experience anything close to that happening during the day. Talked to my doctor -dr. G, and he said that it probably happens during the day too but because I’m up and active I don’t notice but my argument to that is that during the day I go, I leave and I have absolutely no need to go back right away. One time years ago I’d shared my experience with a home health worker and she suggested that I press down on my bladder to help it empty completely. Well I started doing that and I must say it certainly helps – I still expel twice but the second stream comes out sooner. I would say that 95% of the time that I get up to visit the goddess at night I experience that and it is so damn annoying because all I want to do is hurry up and go back to sleep!!!

I know that one of the solutions to this is the use of a catheter; in fact I’ve heard of many ms patients who use them. Say what u want about me but I do not want to become one of those patients. thing is that pressing on my bladder will help it empty but it’s still not emptying the first time around so does it really make any difference medically? While talking to dr. G, he told me that apparently there are ways to train the bladder so that it empties every time; It’s taught in therapy with paraplegics…which reminds me, I finally got the call to go back to Shepherd for PT & OT. I go for my initial evaluation on September 4 so it’s something I’m definitely going to bring up with my therapist.

I cyah lie, apart from my forever present physical disability, that bladder issue is the only symptom of the ms that I am experiencing…well and my voice – although that is not a symptom but maybe a function of it. Of late I am so very self conscious when speaking, it’s not funny. I really hate to hear myself. But anyhoo, that’s been my ms experience over the past few months. Here’s hoping that I’ll be able to work on the bladder issues and nothing else presents itself for a long time to come..

ah gone so, Stax

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