Physical Therapy at the Shepherd Center

After being on the waiting list since about May, I finally got the call that the Shepherd Center was ready for me and i started physical and occupational therapy three weeks ago. It’s going really well but lemme tell u, the shit wipes me out! I’ve been going every Wednesday at 1 and I’m done at 3, and yesterday was the first day that I actually stayed awake for the entire ride home. I am tired fuh so at the end of every session.

When I was diagnosed, I used to go to an arbitrary neurologist. A few years later, I’d started experiencing some things and and my manager at the time suggested that I reach out to the Multiple Sclerosis Society to ask them for a referral for an MS specific neurologist/facility. That’s how I found the MSCA and to this day, I think that her advice was some of the best I’ve received since starting my fight. I myself pass that same advice along to any newly diagnosed person with whom I’m in contact. Well I took that same advice last year when I found myself trying to start up physical therapy again.

Over the years, I’ve had 4 PTs including the 2 knucklehead “in-home” care therapists. Now, in their defence, there’s only so much u can do in someone’s home – ur hands are kinda tied based on the home setup…but barring that, I still maintain that they were still crazaos. But anyhoo, I digress. As far as the other two, I used to go to those facilities. I’m not discrediting everything they each did for me but the experience at the Shepherd Center is completely different. The Shepherd Center is a renowned spinal chord and brain injury rehabilitation facility here in the Atlanta area. The Andrew C. Carlos Multiple Sclerosis Institute resides within The Shepherd Center. I don’t know for sure, but I suspect that the majority of their patients have MS. The therapists focus solely on helping MS patients regain mobility, teaching them how to function as normally as possible given their restrictions and circumstances and showing them exercises that could strengthen and possibly retrain those muscles that just refuse to function how they’re supposed to. In a nutshell, their focus is ensuring that MS patients have the best quality of life possible.

And oh the toys! Apart from the standard gym machines, there are so many other machines and pieces of apparatus to help us walk, workout etc…it’s amazing. Now, I get that Shepherd center might be special with the availability of such things so boy am I happy that I am over there. In my next session, I’m supposed to use the AntiGravity Treadmill (AGT). It’s a big spaceship like looking thing but essentially when we go in, it’ll keep us up, so we don’t have to worry about falling or keeping balanced, we can just focus on working those legs as hard and fast as we want. I want to use it, but I’m afraid of how much I’ll push myself and how I’ll be able to function after the fact – nevertheless, I can wait to get in. I can’t even begin to describe what I used yesterday but let’s just say that I walked the fastest that I’ve ever had in a long time.  I even asked Ian if he wanted me to run…he said no. I often say that sometimes when it comes to my experiences and dealing with this disease, I’m too ambitious. Well this PT I have now is ambitious himself and when I told him that I miss my canes because eh no way a walker is cool, he jumped at the chance to let me walk with a cane. I haven’t done that since Novemberish 2015 so I could hardly contain my excitement – hey, it’s the little things! Now, if he didn’t have his stability belt around me, I woulda buss my ass a few times well, and my technique was rhell rusty but it felt so good!

Walkers – who needs ’em…
SIGH!

Stay tuned for next week’s story of the AGT…

Lyft Experiences and…

every time I request a car, I think I’m taking a chance because yuh just never know who/what I’ll encounter. I used to be nervous but now? It is what it is so I’ll deal with whatever curve ball I’m thrown. I must say that I’ve been lucky because there was only one time that I saw a driver eye the scooter and I just knew that he was saying in his mind, “what the?!?” and turns out that at the end of the ride, I actually rated him a 3 although it wasn’t because of how he treated me. I always curse when I see that it’s an SUV coming because my getting into one of those is neither pretty, graceful, ladylike (all those kinda words) nor easy. It used to be that I would cancel the request if I got one but now I cyah bother so again…I just deal with it. So there was:

– Chick A: She took me to a store but I only had to stop off there before heading where I really wanted to go. On the way there, I kept thinking that I wish I had my walker so that I could just “run in” instead of having to mess with SS that would take so much time and so when she said, “you want me go in and buy the item for u?” I could have reached over and kissed her (I was thinking that too but I sure wasn’t bout to ask).
– Chick B: she said, “don’t worry, take ur time. I understand completely cuz I have MS and struggle too sometimes.” Before I left her I apologised for sounding so excited when she told me that she has MS. My reaction (“oh really?!?!” quite excitedly) certainly didn’t mean that having MS was a great thing; it’s just that I doh run into a lot of people who have it too.
– Rhonda held my hand, gave me a hug and said a prayer for me before I scooted away.
– Wanda had an SVU and as they say here in the south “bless her heart” because after I told her about my issues with getting in, she insisted on lifting me in cuz “she helps her sister all the time”. I was skeptical but hey, who am I to judge? After she raised me about an inch off the ground, we had to change tactics.
– As you know Ron needed his own post.
– Fella A also had an SUV and after my “getting in” spiel he said, “would it be easier if I pick u up and put u in?” He picked me up threw me in and we were off…easy peasy.
I’m sure there have been more I can talk about but I’ll stop now and hope that my experiences continue to be on the up and up.

today I’m just ole talking…My AC stopped working Saturday night.  I was fine Sunday all day but Monday morning when I woke up to go to work? not so much…steups!  it’s hard enough trying to explain what my body feels like under normal MS circumstances but I really hate when I have to call my manager to say that “I’m not feeling too well”…oh and by the way, I suspect it’s because my AC stopped working and the MS doesn’t like heat.  I know that people just don’t really understand and I probably sound like a flake.  by the time I actually logged on, I called to further explain and really tried to drive my point home. He was sympathetic and said the right things but did he really get it? I dunno…altho at the end of the day does it really matter when he has supported me thru it all thus far?  so the maintenance guy came to look at my HVAC unit and he had to move 2 things to get to it and he didn’t put them back. A number of things are specifically positioned in my place for a reason – it’s mainly either so that I can easily reach the item or so I can easily walk by without tripping.  I know if someone doesn’t know, is not fair for me to get vex but when things are not in the right place, it irritates me no end and it didn’t help that I wasn’t feeling my best.

I wrote those last 2 paragraphs on Monday. I’m editing and finalizing today (Thursday) and I’m in a much better mood – Monday certainly was not a good day.  My AC is still not fixed but there’s a portable unit in my bedroom so things are good in my world and the MS and I are in balance and on good terms with each other.

Allyuh enjoy yuh weekend!

5 Additional Things I Couldn’t Live Without

somehow I ended up reading this post the other day and realised that I need to modify the list somewhat. Those 10 were in no particular order back in 2012, but there are some items that are still quite relevant today. They are: My  Inner/Outer circles, alcohol and my AM/PM pill boxes (I don’t take that many pills but without those things I wouldn’t be able to keep up with what I’ve taken and when and I’ll be up shit street regularly).  I hope I never have to experience life without any of those – nuff said. fast forward to 2017 and here are my additions:

My Life Alert Chain
I didn’t want it and was forced to deal with the fact that I need it. I started with a bracelet that of course, I’d forget to put on but these days I wear a chain and it’s somewhat embarrassing (mortifying actually), because sometimes I go out with the damn thing around my neck and I can safely say that it goes with absolutely nothing I wear. Like I’ve said before, I’ve come to terms with the fact that it’s a necessary evil so ugh! whatever! I am happy to report tho, that I’ve never actually had to use it (knock on wood) and the one time there was a misunderstanding, responders were there in 2 2s and the process worked like a charm.

Look closely and u’ll see it swinging round my neck

Soca Scooter and Bumblebee
I’ve actually had dreams of not having them handy or their being damaged/destroyed…that should be rewritten as “nightmares”. I cannot imagine my life without them.

My walker
The first installment included my canes; now it’s my walker – sigh!

Speaking of walkers, my walker tray
When I walked with my canes, I had a free arm/hand to use as needed.  Well with the walker, no hands are free. At first I used to use SS in my apartment when I had to carry food (anything really) but I needed to cut that out as it limited my walking. I went to my trusty Amazon (I am an amazon old ‘ho) and started searching and of course, there it was – a walker tray (it still amazes me all the things available “out there”…one jes has to start looking). Great buy and best money spent …that month.

Lyft
The decision to stop driving was one of the most difficult ones I’ve ever had to make – I still miss driving to this day. My not driving meant that I was just about completely dependent on others and that wasn’t something I wanted to deal with at all. I remember how nervous I was the first time I used Lyft (Hannah was my driver) and how anxious I was about people pulling up and seeing me in SS. Now, nothing fazes me and I’ll deal with whatever situation presents itself (one day I’ll tell u about my getting in the various SUVs – LOL). I was able to reclaim so much of my independence using Lyft that I’m not sure how I’ll handle it if the company ever goes under (I eh really feelin Uber). I’ll be forever grateful to T-ster for suggesting it.

I think that’s it for now. Special mention goes to my bionic foot but I can,  and do, walk without it so it can’t be a “live without” item.

In other news, I’ve been on the PT waiting list at Shepherd Center since March. They called me last week so I go back to PT & OT later today. The last time, they discharged me after 6 sessions, so we’ll see what happens this time.

Anyhoo, allyuh hol’ it dong…I gone so

Life is too Short

i can’t believe this has happened again. I returned from my vacation and learned that 3 people had died. One was my favourite radio personality from the trini radio station I listen to regularly (he was younger than I), one person lives here in Atlanta and was one of the older Trinis who welcomed us into their homes years ago when I was a starving student and then there was Carlet. I met Carlet in primary (elementary) school; I think we were about 9. Over the years we didn’t stay in touch but whenever we saw each other, we would lime for a few and catch up. She was battling her own disease but you would never know it because she was ALWAYS so full of life, very positive and ALWAYS smiling. Goodbye my friend…my condolences to all those who loved her. I saw the following posted on her wall…

Speaking of making my life the best story in the world. I went to Barbados for vacation and had a fantastic time. One of the things we did was take a catamaran sail along the west coast of the island. Now Barbados, like Trinidad, is not the most “Stacey friendly” (read accessible) place and when we pulled up by the dock my cousin had to go inside to see what accommodations could be made for me to get on the boat. As she went inside, I got out the car and started making my way over because I wasn’t sure how it was going to happen but I knew that it couldn’t happen with my sitting in the car. There are only 5 people whom I would actually ask to lift me up to take me somewhere cuz they’ve each done it before and quite regularly too – I know I’m not the heaviest person but I certainly do not go around assuming that someone would lift me up if I asked. As I was walking to the dock, a guy came out and I heard him say, “yeah. We can pick her up and take her in”. He went back inside and came back out with another who scooped me up like a rag doll and took me straight on the boat without a second thought. Gavin, the captain picked me up and Reynaldo was his first mate.

the trip included 2 stops – the first to swim with turtles and the other to see 2 ship wrecked boats that are sunk off the coast. As everyone got off and went swimming with the turtles, Gavin told me that he’d take me out at the next stop – I was sceptical, slightly afraid…I am on that (now) self imposed ban from the ocean after all – but how could I say no to that offer. I’d certainly have to put all my trust in this man I didn’t know but could probably assume that he knew exactly what he was doing and signing up for. What the hell? You only live once…I have a a short clip of  our getting in the water but alas, I am unable to load it for u.

The next stop was for lunch and fellas with jet skis approached. I remember looking at them and thinking, “sigh…if only.” I couldn’t see a way that I could end up on a jet ski at all. My eyes made 4 with Gavin’s and I guess I motioned or mouthed something to him cuz he indicated  that getting me on the jet ski would be lil tricky (steups! – just as I thought). 5 mins later, I heard my name, looked around and Mone was calling me over. The guy whose jet ski she was riding was happy and willing to get me on.  I eh go lie, it took about 6 men to get me on. Reynaldo was in the water holding the jet ski steady near the steps of the boat, Gavin was holding me under my arms with his partner jostling with my legs (because u know they weren’t working on their own – especially under all that pressha), one was swinging the legs where they needed to go and finally I was on. Fella jumped on behind me and we were off…

Was great – that day was certainly the highlight of the trip for me. When we docked, Gavin took me back to the car – no questions asked; he was wonderful…the entire crew was.

aye aye captain!

Take your life and make it the best story in the world. Life is too short for regrets and we get no “go backs”.

That Samuel-O’Brien Chick!

Indulge me…I going and toot my own horn a lil bit.

it still amazes me after all these years that I have such a positive attitude about having MS. It’s so not like me; I’m usually so pessimistic about things. Maybe deep down somewhere I knew that my outlook will make it easier for everyone around me to cope? I know they feed off my energy/feelings/outlook. I was reminded of that last week Saturday while I was talking to one of my aunts and she was talking about getting old (in fact, for years she been telling us young’uns not to get old because it is in fact a bitch) and she said, “u are amazing…how u deal with everything. It’s because of ur attitude that we can be positive about so many things.” It eh easy trust me, but it is what it is, wha ah go do.

from the moment I was diagnosed my doctor always encouraged me to exercise…that’ll help things he said – years ago it was thought that exercise was not a good thing for MS patients – of course that train of thought is no more. Back then I hated the gym, sweating, exercising, weights…all those gym things. Slowly but surely over the years that has changed and now I actually like working out. Never in my wildest dreams did I think I’d ever get to that point but here I am. Now I certainly eh no gym rat and there are days when I can do without it but I like working out. Problem is, I can’t go by myself- well I could but why tempt fate; u know that I’ll be moving from one machine to the next and will end up on the floor! Enter Spree – my personal trainer. we’ve been together for the past year and a half and she’s talked about how nervous she was in the early days. We talked on the phone and I told her that I can walk but I’m in the scooter…I have MS…blahblahblah. She was cool and said yes no problem but was a bag of nerves because she didn’t know what to expect/couldn’t figure out how we’d be working out etc.

i think from day one I put her mind at ease though. I told her from then that working out was no problem for me. In fact, I’m willing to try any exercise or machine. If while doing it, I take extra long or we realise that maybe this isn’t a good idea then we know that maybe we shouldn’t do it again. (In fact, a dream I have is to start doing pull ups but not sure how we going to get me in position – but I know that one day we will try to make it work; that may be a story for another day. who knows!). Her biggest fear of course was that I’d fall “on her watch” and so the day it happened and I kinda dragged her down too (as strong as she is, she was no match for me!), she was mortified…me? Not so much – all in a day’s work…in fact allyuh know I started laughing especially when I realised that yes I pulled her down but we were both just fine. She also feeds off of me…she knows that she can throw anything at me and I’ll figure it out as we go.

i don’t need reinforcement but it’s always nice when anyone, including those who don’t know me, say encouraging things to me. I’ve had strangers in every gym at which I’ve worked out tell me that I inspire them and give them the strength to come out because if I can come workout, then they have no excuse whatsoever.  It tells me that “hey! it’s not all bad right?” and clearly I must be doing something right.

Hopefully, I will be able to maintain my positivity/upbeat outlook and my wretched disease won’t throw me a curveball that I can’t (or don’t want to) handle – time surely will tell.

P.S. I’ll be out of pocket next week so I sure won’t be posting anything.