That’s it For Now

so therapy’s over. They were 9 well spent hours each of PT and OT. The Shepherd Center and those who work there are amazing (I say this from my personal experience and I’ve heard stories from other people). Anyone out there reading this who is living with MS in the Atlanta area, if you can afford to wait the 2 month waiting period to get in, do it. U won’t regret it and it’s well worth the wait.  There’s also an MS Wellness program that I’d love to join but alas all the sessions/classes offered happen during the day so I can’t join. I was discharged 2 weeks ago but both therapists told me to do things on my own for a couple months and then come back. So that’s what I’ll continue to do until my insurance company puts their foot down.

The very first PT visit started with an evaluation that included a 6 minute walking test and at the end of those 6 minutes, I’d taken 153 steps. During the last session, we reevaluated and in those same 6 minutes, I took 225 steps. I also tested better in some of the strength tests that Ian had done before. Yay!! Improvement is great although i eh go lie, a little part of me was thinking that maybe it was just a better day for me plus the day before had been leg day in the gym – hmmmm…there’s that “glass half empty” person I know. At the end of the reevaluations Ian said, “well. U have 20 more minutes…anything special u want to do?” I eyed the Alter G…it was calling my name. Admittedly, I did much better in it too. The first time, I could only walk at a speed of .3 with some issues and on the last day I was at .4 with no issues. So it’s over for now, back in it sometime in 2018.

the last day…all zippered in

ive never been part of an MS support group or attended any meetings/support sessions. One time years ago, I enrolled in a 6 week wellness class that had been sponsored by the MS society and it just so happened that every single person in the class had MS. I must say it was good to be around people who knew and understood what I was going thru. Some of us tried to keep in touch after but that eventually fizzled to nothing. Rebecca (OT) suggested that I become a part of the support group that meets at Shepherd. They meet on the 2nd Saturday of every month so I went last Sat morning. Two interesting things happened.

* At some point in our discussion -it was only 7 of us, 4 of whom had a neurological disease and I was the only one with MS – the leader of the group said that she could hear it in my voice. Eh? That was a first…well she was referring to the tremor that I mehself sometimes hear. She went as far as to say that had we been talking on the phone, she would have thought that I had MS. Apparently she’s heard the same tremor from multiple MS patients…go figure!
* I met someone who hooked me up with contacts to start my new medication regimen – that of the alternative kind. Ever since medicinal marijuana became legal for some diseases (MS included) in GA, I’ve been telling myself to look into it and I have but I’ve also been dragging my feet (no pun intended). Well this chick was there who strongly advocated for its uses (she herself uses some products to manage her disease) and I knew that I had to stop stickin. I’ve left messages for both my doctors so that hopefully at least one of them will be willing to put me on the registry and I will be on the way. The company to which she referred me makes CBD oil products to be ingested as well as topical massage oils and lotions. I’ve already spoken to the owner…more to come on that.

alright…well I gone so. allyuh do have a great weekend!

P.S. – One of my calls was returned.  the MSCA is not participating in anything related to medicinal marijuana so they won’t add me to the registry.  fingers crossed that my primary care doctor will or else i’ll hadda figure something out.


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…

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

My Vibrating Machine

Settle down…This is a PG blog 😉

My OT made me use this first. It’s a machine that (u guessed it) vibrates that helps patients with spasticity. My left side is spastic – it’s the reason that my left hand curls up and the leg gets so stiff. The word that the therapists use to describe spasticity is “tone”. So the vibration machine is used to break up the tone in my body.
Personally I feel that should be re-evaluated cuz isn’t that one of the reasons i’m in the gym at the crack of dawn every Tuesday and Thursday morning? to tone up?  now u want me to break my tone up!…anyhoo, i digress.
Not the one at Shepherd Center but u get the drift

The platform u see there is the vibrating part and my OT had me place my hands on it for a few minutes. It felt weird cuz it was going at HI speed/second in my book. Did it break up the tone in my hand and make any difference? Yes. A little…as soon as she stopped it. Wasn’t anything to write home about tho. A week later, my PT suggested I stand on it. Now.  I eh go lie, I was a lil skeptical because I was unsure of how I’d function after being on it. If my quads get massaged or stretched too vigourously, my walking is all out of sorts so all the vibrating on the legs? Hmmmm I wasn’t sure. Anyway, I stepped up and she turned it on. The shit had me scared. The vibrations were so powerful that try as I might to keep my legs relaxed, i couldn’t. I mean for most of the time I was on it, my body was straight as a pin. I was very leery, but push come to shove, I had Soca Scooter so I guess I won’t walk as much if things go to shit.

Well. Lemme tell you! I got off that thing and took a step and allyuh! It was the most normal I’d felt in however many years that I’d been using walking aids. It was AMAZING! I couldn’t believe it. My PT even remarked that my movements looked smooth and effortless as I walked around the room. Unfortunately that was my last PT session. I didn’t know how long the effect would last but I was sure it wasn’t going to be forever so…I bought one for here.  It’s not as powerful but it certainly does help with the stiffness of my leg – usually i need help to bend it (especially if i have to sit in the front seat of a car) and that task is so much easier to do now.  I definitely notice a difference.  used to be that if i was lying on my back, it was pretty much impossible for me to bring my knee to my chest on my own.  while using the machine?  not a problem for the most part.
By the way, yesterday I got the call from Shepherd Center that they received my prescription for PT/OT and by the way “just need to make sure you know that there’s a waiting list…and right now, it’s taking about 2 months to get in”. so here we go…playing the waiting game as usual for all things MS.

hol it dong…Stax