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…