Tag: Uncategorized

Physical Therapy

I’ve had some physical therapists over the years. I went to 2 or 3 facilities and ended up stopping each one for one reason or other. Some years ago, I discovered “home health care”. Up until then I had no idea that even existed – I guess it’s not until u really need something and start poking around that u really realize what’s “out there” – and for whatever reason, I decided to do in home PT.

A side note: I’ve had 2 in home therapists and dealing with the 2 of them (and a few other in home health workers) convinced me that the majority of them are crackheads/sprangers/knuckleheads/insert whatever word u prefer to use here.
I stopped using the first guy right when I started declining 2 years ago and the 2nd? Well after 4 sessions I never saw him again – go figure! He was a waste of time anyway so I never tried to track him down either.  I met the Bioness rep to get my bionic foot at the Shepherd Center. Shepherd Center is a very well known, highly recommended brain and spinal cord injury rehabilitation center here in Atlanta and while we were organising, she asked me if I had a therapist. When I told her no, she suggested that I try to get in right upstairs at their MS Institute – in her opinion, the best in the state, maybe even the nation. I took her advice and asked Dr. Gilbert to get the ball rolling. When the Shepherd Center rep called me to confirm everything she warned me that the wait for PT was a 6-8 weeks.  Wowzer! Oh well I best get on the waiting list…i’ll get pick at some point. Wouldn’t u know it a week later I got another call to schedule appointments – fella said that patients requiring Occpational Therapy and PT get priority. Sweet! OT wasn’t even on my mind, Gilbert just wrote the script that way.
Each time I chose a PT, I’d do so after reaching out to the MS Society to find out who they’d recommend cuz maybe the person focused on or was interested in MS patients (cept the in home people – u jes have to take what u get with them); turns out that each of the therapists i chose had a friend or family member with the disease so they were familiar with it. Well the Shepherd Center has an MS Institute – MS is the therapists’ only focus. There are so many machines and gadgets in there and I was exposed to so much – I’m really happy that I took the Bioness chick’s advice.  I’m on a break right now (unlike before, not my doing) but a new prescription was just faxed in.  Only problem with that is that who knows if I’ll be lucky again and be bumped up to the top of the waiting list – I’m not given first preference just because I was there before – oh well…as usual, all I can do is wait and see…
I gone so…allyuh have a good weekend.
P.S. More to come on my PT experience.

My Bionic Foot

I’d seen the ads for this product before but never dug into the benefits of it. As my walking took a turn for the worse, I started looking into it and eventually i had the opportunity to get a free evaluation, so why not go check it out.  During the evaluation, I could actually feel the difference the thing made. Essentially it’s a cuff (with two electrodes) that goes around my left calf and it stimulates the nerve that makes my foot “work properly” – meaning in the heel to toe action. Without it, most days, my left foot just drags as I try to move the leg to take a step. The device is made by Bioness and they actually produce 1 for the upper thigh (stimulates a nerve in the leg – don’t know which one as I wasn’t evaluated for this), one for the hand (I didn’t see results as drastically with this one) and the one for the foot.  (Anyone want to take a stab at why the ass this font changed???)

 
It’s a 3 part device. There’s a sensor in my shoe – at this moment it’s in my sneaker (it can only work with shoes that have a strap around the ankle (ladies, a sling back shoe) or a whole shoe) – the cuff is secured around my left calf and I have a small remote to control it. When I’m ready to move I place it it “walking” mode and when my weight is off the sensor, it senses that I’m ready to take a step, I feel a tingling sensation and my foot “kicks” into action. It doesn’t allow me to walk further (cuz my legs still get fatigued) but it sure makes the act of walking less laborious for me so i definitely walk vs using the scooter when i can.  There’s also a “training” mode where it stimulates the nerve without the sensor so my foot moves up and down on its own but the idea while doing this is that I actually move my foot with it (so in a sense I’m retraining my brain and foot to work together to get the foot moving properly). 

 
My “problem” right now is that I really have to find other shoes with which it’ll work. A few months back, I had to go somewhere that required a dress and I wanted to walk vs using Soca Scooter. I had to make a decision – a dress (I’m short so I only wear short dresses) and sneakers or jeans with sneakers…what to do what to do?!?! In the end I wore the dress because that’s what the occasion called for but it was still kinda weird. So I have to buy some new shoes. 
 
Why my bionic foot u ask? The day I got it, Learls and OB were here and that night as I was walking into my bedroom, she looked at the way I was walking and said, “u doh have on yuh foot?”  It became “my foot” and when 1 of my aunts called and said, “I hear u have a bionic foot!” Well.  How do you refer to it as a “Bioness device” after that? 🙂

Never Say Never

They say “never say never”. Well now, I guess I must agree.

I’ve said multiple times – including right here on this blog – that I’ll never go home again for Carnival. I mean:
  • I cyah play mas (my biggest reason)
  • I shouldn’t be in heat/sun – steups
  • (being on the scooter) Is never a good thing for me to be in crowds
  • I love my country but let’s be honest, a lot of places are not so Stacey-friendly
…wha’s the friggin point of going?  

Well EVERY year without fail, I’s just be oozing salt when everybody talking bout when they leaving, who they playing with and of course, there’s Facebook; one will have to dig out one’s eyes to escape the status updates, pictures, random videos and various articles…and then…there’s the music! Sigh! Sigh!! 
  • We always joke that as “people in foreign” we know the music (words included) faster than the locals cuz we are so bloody hungry for it here. 
And can u tell me why in EVERY picture EVERY SINGLE PERSON must be smiling, looking good and having a good time? Nobody has a off minute when the picture is snapped??? Meanwhile, my ass sitting here working and is 4something degrees and possibly snow on the ground. This year I tortured myself until Friday evening when I logged off. I didn’t look at a non Bank of America device until Ash Wednesday.  Well…NO MORE!

I actually don’t care about any of the aforementioned bullets. I’m at the point where I just want/need to be in the country. Asal played Monday night mas last year; it was an affordable, all inclusive band that was Stacey friendly enuf cuz it was small and guess what? No sun (I know I’ll still feel hottish but it should be ok). In addition, at that time, it was actually the only band – she had a great time and Monday night mas was a good time eons ago before I left home – I in dat!  I will also do my due diligence to see if I can go any fetes…if not, is no scene, cuz I’ll be home.  I figure nothing wrong with at least trying it once.  If I go and I determine that maybe it wasn’t such a great idea, then I’ll hadda regroup.  if I don’t go, I won’t know. 

Enjoy!


 Anyhoo, so ticket already bought…I’m going for a week – can’t wait!

Why Lyft

I planned on going more into my use of Lyft and then I heard a story on the news the other day that tied in very well…lemme explain.

So here in the US, there are ride-sharing options to use when u need to go somewhere. Essentially anyone who owns a car can sign up to be a driver with whichever company and thru the company app, when I’m ready to go somewhere, I input my destination and pickup location and the nearest driver (I suppose) accepts the request and comes for me. i get a picture of the driver and their car, they see a picture of me…easy peasy and they’re cheaper than taxis or a car service by far. In Atlanta, the options we have are Lyft and Uber. When T-ster suggested using Lyft, I was a lil skeptical because I’d used Uber previously and had a “not so great” experience both times (nothing to do with accessibility). But! Winter was winding down and I was ready to get out of…I did some reading and got the app. In so doing I realised that I could set up a handicapped profile (and request an accessible vehicle) and there’s a clause on their website that states that drivers cannot discriminate against disabled passengers – this kinda put my mind at ease (plus I couldn’t find anything similar on Uber) and I was ready to take the plunge.
The good thing is that I don’t need an accessible vehicle; Soca Scooter breaks down and fits quite comfortably in the trunk of any car. When I requested my first few cars, I used to give the drivers a heads up by text “hey I’m in a mobility scooter ok”. Well that stopped when one chick responded with “oh. U need a bigger vehicle then, I’ll cancel so u can get one”. I couldn’t tell her that I certainly didn’t –  allyuh eh want to see me get into ah SUV…it’s not ladylike/pretty/graceful AT ALL; on top of which, it eh the easiest thing for me to do. I try to avoid them at all costs.  My experience so far using Lyft has been great – all the drivers I’ve encountered have been helpful when I needed them to be and I’ve not gotten any complaints/run into any issue (they mighta been cussing me fuh so on the inside for having to haul the scooter in and out the trunk, but i saw no signs of it)

  • One lady had a trunk full of ferns she’d just bought but she did some rearranging and we were on our way.  So…use my link if you ever decide to use them – i believe we’ll both get some kinda credit or something.
Now…bout that news story. A blind person with his service dog and his friend requested an uber driver. Story went that the driver pulled up, saw them, told them he couldn’t take them and drove away. Apparently the driver said (to a reporter after) that his daughter is allergic to dog hair and that’s y he couldn’t take them and he drove away to go read Uber’s policy. Woulda be nice if he’d explained the situation to the people – not the reporter…after the fact. who knows what really happened?
I’m not stupid, I know that anything is possible with Lyft and their drivers too, but for just a split second, I thought “yup…looks like I’m using the right company”

alright, i gone so…have a great weekend!

Lemtrada – The Drug

It’s prolly the strongest drug out there…it’s also the most expensive one I’ve taken. When I opened the “cost” statement, I swear I almost fell off Soca Scooter – the length of time for approval suddenly made sense. The simplest way to explain how it works is to say it depletes the Tcells in the immune system. The thought is that when the immune system regenerates, it’ll be with “good” cells that will not attack the body and in turn cause nerve damage (it’s actually a drug that’s been on the market for a while but was repurposed to treat MS).  So for a while after treatment, I was sure to protect myself best I could from getting sick/catching anything cuz there was no telling if/how/how long i’d take to  fight it off (so jes in case, I didn’t go Miami carnival last year) and my doc had me on anti-viral drugs till January.

Of course, like all the drugs out there, it comes hand in hand with its laundry list of side effects. I won’t bore u with them but I will tell u that a nurse comes to my apartment monthly to collect 4 (sometimes 5) vials of blood and a cup of urine – this will continue for 4 years. Oh. I will mention that Lemtrada may cause an overactive OR under active thyroid. For the life of me, I can’t rationalize how it could cause ONE or THE OTHER…shouldn’t it only cause one???
  • Not trying to put goat mout(h) on mehself, but with my luck if I were to develop one, it would be under active and I’ll gain weight

On the last day of treatment I called my manager to let her know that all was well and she commented that I sounded better than I had in the previous few months. Interestingly, 4 other people said the same thing to me and looking back I realised that it had actually been a stressful few months leading up to the treatment.

I got a call from Robyn at the MSCA bout 2 months ago and she said that lab work showed that even tho my numbers were increasing, they weren’t increasing fast enuf so they wanted me back on the antiviral drugs. “GREAT!” She assured me that I didn’t have to be concerned; it was just a precaution.
Good news though – I had a physical done 2 weeks ago and my blood count is now back to normal…till Octoberish (when I go back in for round 2) – “happy happy” times.


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