Therapy finished last week, I’ll be more consistent once again.

i don’t question “why me?”  Quite frankly I don’t remember when/if I’ve ever asked that question.  The question I really want answered is “why multiple sclerosis?” I really wish I could pinpoint something I did/somewhere I went/something that happened in my past that could explain why I have my wretched disease, but no. No explanations, no answers…sigh. Allyuh tell me how strong I am and how much you admire me because of how I handle things and, I’ve said this before, I’m not putting on a show for that praise, I really do handle things well (at least I try to) – I eh go lie, I sometimes amaze myself at how I handle things.  Well…all that strength came to a crashing halt some Fridays ago.

truth be told, I haven’t had a bad day in a long while, so one can probably argue that it was time I s’pose. It was the week after labour day (sept 4) and it all stemmed from a mix up with the delivery date of one of my medications.  It’s a twice a day tablet that is specifically for ms patients’ walking issues. Every month, I speak to a pharmacy representative and we agree on the delivery date and every month like clockwork, it’s delivered on said date.  Well I’m not sure what happened and it didn’t come as I expected and when I called to find out what was going on, I was told that it was coming 4 days later. That news was no good, I had 2 days of pills left. As I said before, this is a twice a day pill that’s specifically for my walking and one time years ago, I went down to one a day just to see if that dosage could work and I discovered that the pill actually also helped my overall good feelings and 1 daily wasn’t cutting it. So here we are that week and I have 4 pills for four days. Shit! As “luck” would have it, I’d forgotten to take a set of pills sometime that month, so I actually found one more. So for that week, I took one pill a day and I was coping – or so I thought.

that week was leading up to an event that happens annually here in ATL that pits the men in our Trini community against each other to see who “han sweetest” in the kitchen. It’s a competition that’s been run by AuntyP for years and it eventually morphed into a part fund raiser for the MSCA on my behalf. It really brings our little community together and now in these times of social media, all week long I was tagged in comments and pictures and the pekong amongst the competitors was hilarious. That Thursday, in the midst of all the ole talk, a few people were very complimentary of me and reading what was said made me smile – gave me warm and fuzzy feelings, if u will and really lifted me up. Looking back I realised that my funk had started that Thursday afternoon. I really needed those comments right at that time.

the pills are usually delivered to my front door. Don’t u know it, that day UPS left it in the leasing office so I had to get them. The scoots to the office and back were uneventful so I’m not sure what got to me but in that moment when I got back to my apartment and opened the package, all my strength, positivity, “glass half full” energy vanished…shit was just too unfair and I was on the verge of tears. I was angry, I was sad, I was upset, I was despondent, I felt hatred to the MS and I can go on.

It was the middle of the day though…I had to get back to work…

A few hours later, after having spoken to Learls and a few others, I was almost back to normal.

I’m fine these days but MS still sucks!


Therapy continues…

My schedule has had to change because of weekly therapy. As a result, it’s become difficult for me to post – unless I write on the weekend, and that hasn’t been easy either. Anyhoo, so in my last post, I talked bout all the “toys” at the Shepherd Center including the Anti-Gravity Treadmill (AlterG). I used it and whilst it was beneficial, jokes cyah done. Alas tho, I realise that writing about how things unfolded just won’t be as funny as my vocalising the story, so, let’s just say that Ian, my PT, and I had some really good laughs that day. One of the things I really appreciated about being in (on)/using the AlterG, was that I was able to see myself walk. There is a mirror positioned in the front that is placed so that patients actually see their leg movements. I saw that often times my strides are really narrow (almost like i’m stepping across myself) and that actually could contribute to my keeling over unnecessarily. I was able to concentrate on widening my stance, thus my stride which is more normal (regular folk normal not Stacey normal) anyway. It actually felt kinda weird at times but it’s something I definitely need to work on.  Being in there really cemented the fact that I must never use a regular treadmill – not that I ever think about it, the elliptical is what I use.  We would be having a different conversation if I wasn’t strapped in (in the picture below, the things hanging on the wall are the “pants” that are zippered into the machine to keep us harnessed in).

the AlterG

I have a lot of fun with both therapists and I think my personality has a lot to do with it. Rebecca, my OT, has really been working with me to make life easier and has given me a lot of tips and tricks for just being functional on a daily basis. Because of her I now own a handy dandy “cutting board for one handed people”. I certainly didn’t know those existed but it sure helps me with cutting and slicing when my left hand just wants to act like shit. I’m not a bread person but I gave up on ever spreading anything on a slice of bread months ago, because I just can’t hold the bread in place while I do what I need to do…until now.  The cutting board will ensure that the bread stays in place while I organise. So it’s just a regular cutting board with “a wall” if u will around one corner, 3 protruding nails (I have to be careful around these) on which fruits/vegetables/whatever can be spiked to hold them in place and suction cups underneath so that it doesn’t move – who knew. That’s the basic design but there are those with attached knives and all sorts of other things. Rebecca also explained why I am of no use to myself in heat. Apparently, the signals between our brains and our body parts slow down considerably when we get hot (this is everybody). As a result of my wretched disease, on any given day those signals do not pass along properly in my body because of my damaged myelin sheath (the protective coating around the nerve), so add heat and slower passage to the mix and well, those who have experienced it see, I am done! I cannot do anything for myself.

Anout 3 weeks ago, I got there and spied a new “toy”. It’s something called a…actually I didn’t quite get the name but it included the terms “virtual” and “balancing”. Apparently, at the moment, there’s only one associate at Shepherd trained on its use.  Don’t know if Ian will get the training before my sessions are over but we’ll see. It’ll b interesting to see what I can accomplish while harnessed in.

In other news, I went to the MSCA at the end of August.  These days, going to Dr. Gilbert, my doctor there, is really just a formality. He may observe me taking a few steps, he’ll test my eye movements and some sensations but in general we talk about what I may be going thru, if I need any prescription refills and just the MS’s behaviour in general. Speaking of its behaviour, I’ve noticed something new happening.  It’s more of a nuisance that anything but periodically all thru the day, I feel a small “electric shock” (this is the only way I can think of to describe) run down my left leg. I feel it when I’m sitting or standing – like I said it’s more of a nuisance than anything else, it almost feels like a slight tickle. It started happening some time last month and I’ve told both Ian and dr. Gilbert bout it. Ian tried to make it happen (putting me thru specific routines) and couldn’t so he determined that it must be the MS doing its thing.  As usual, what do I do? Monitor it and see how/if things progress…so far, there’s been no change. Then, I woke up twice the morning I went to see Gilbert and each time, I seemed to have a bout of positional (moving from lying to sitting) vertigo. Vertigo is a horrible thing to experience (in my book) and I was afraid and quite annoyed too actually, but I guess that was a fluke because nothing has happened since.

Update: I actually wrote this post couple weeks ago and I’ve since noticed that the sensations have pretty much stopped. I tend to feel it now once or twice on the odd night.

Gilbert ordered an MRI in November – its scheduled for the 21st so we’ll see what effect, if any, Lemtrada has had on my existing lesions. Hopefully too, there won’t be any new ones…stay tuned for that report.

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…

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.

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