Thursday, September 22

MS Wellnes Expo and...

A few Saturdays ago I went to a wellness expo hosted by the MS society. Was a good use of my time - heard some things I already knew and learned some new things too. There was a neuropsychologist there from Shepherd Center who gave a familiar story about his first MS patient.

  • The guy had a huge yard and he always used to go out on his riding lawnmower and cut his lawn every Saturday morning starting at 10. Enter Multiple Sclrrosis...well he simply refused to give in to the MS and every Saturday morning at 10 he would start mowing the lawn. And then every Saturday afternoon by 1, his wife and kids would have to bring him in and lay him down to cool down. He would be of no use to everybody (including himself) for the rest of the weekend. Eventually, of course, he had to stop the madness and make a change. Dr. Rob's point tho, was that one of the most important things that we need to do to deal with our wretched disease is listen to our bodies and make changes to our lives/lifestyles (even though we may not want to) where we have control. I can't do anything about the lesions on my brain/spine that affect my walking but I can use a scooter to get around when a lot of walking is involved. 
Speaking of scooter...Soca Scooter has given me 4 long good years. He lime, he wine, he fete up a storm, he is my partner in crime at the airport (I have a story bout this for allyuh)...we've been thru a lot together but alas, I think that I may need to retire him soon.  
  • The seat is busted and oozing sponge in a few places
  • I've thrown out one rubber handle and the other looks like it was in a fight with a shark (I have to keep it tho cuz my cup holder won't work without it! it's glued together)
  • and I think his chassis is slightly bent
Originally I was going to run him to the ground but I have a vision in my head of my driving along minding my own business somewhere and he just stops...and then what'll be my story - not a good idea. The one vendor at the expo in which I was interested was a mobility store where I found my next scooter. It's a folding scooter and so essentially it collapses with a click of a button into something a lot like a carry on piece of luggage. One "problem" with this one is that the top speed is 4mph; Soca Scooter is 5.  The difference between 80 and 81 mph, I may not notice but 4 and 5?...ugh! but clearly I'll need to get over that fact at some point. Hopefully this one will also be able to lime, wine and take jammin like good ole Soca Scooter.

let the good times roll...
 

Monday, September 12

Damn u MS...or Stacey (maybe)

I'm not a stubborn person usually but when it comes to the conflict between me and the MS with respect to the sun and heat I am stubborn to a fault - ALWAYS. Last week Monday morning I went to a rooftop breakfast fete - this fete tho is not ur typical breakfast fete in that it starts at 8am. There's a covered area and a section that's open. Do I try to lime/stay in the covered area? Never. In fact last year ASal asked me if I wanted to get out of the sun (it was still earlyish and it wasn't bothering me yet and I remember scoffing at her wondering why the hell she would suggest that; she was asking from an MS perspective - MS wasn't even on my mind...I'm stupid, I know).

So I usually get there between 8 and 9 so no problems then but by 11/12 it's a whole nother story! This year, the open area had sheets of fabric draped over to offer some shade so I sought refuge there but still I was hot fuh so. I could barely work the controls to reverse the scooter into the shade and by the time I got there I was seated for most of the rest of the party.


Every time I stood, I had to be helped up. The other thing I noticed is that I couldn't speak loudly at all. was like every time I spoke to someone I was whispering - which makes no sense when u trying to shout into somebody ears over loud music. I was completely drained of strength/energy. Steups but will I stay under cover next year? No promises

I took a really long time to cool down and get back to normal...in fact I don't think it happened till I reached back home.  I ate a plate of food and went straight to bed...slept straight thru till Tuesday morning...but it's okay - it was all worth it kinda/sorta...party was nice!

Thursday, September 1

4 to 1

So when I moved into these apartments, I lived on the 4th floor. It was okay because I also parked on 4 so was a lil walk to my apartment. I had an exit plan in the event of an emergency (u know - having to get from 4 to 1 if the elevators were out) although really and truly it had flaws but luckily I never had to test it out. Last year when the lease was up I moved down to the first floor. The move was good for me for a few reasons:

  • This escape route has fewer flaws and will most likely work...plus, I'm already on the ground
  • First has hardwood floors - walking on plush carpet or rugs makes me feel very unstable - the harder the surface, the better for me
  • Speaking of carpet - there is carpet in the bedrooms but it's not as "plush" as on the 4th floor so...turns out even that was easier to walk on. 
  • I could just drive thru the gate and park (at the time of course) - The drive up and down to 4 in the parking deck was a pain in the ass. I have mentioned here before that the constant stop and go of traffic is pressha on my legs so can u imagine driving either up or downhill around corners, maneuvering the parking deck and all its other cars?!? And then even after I parked, I had a walk to my apartment that sometimes seemed like a mile. 
 
Of course...there's a story - u knew there had to be at least one.

I asked the management to convert my shower to an accessible one. There originally was a shower door but since they converted it to an accessible, I had to put up a shower curtain. One morning I went  to bathe with a new cake of soap. Don't ask me exactly what happened or what I was doing but said cake fell out my hand and landed square on my right (trust me this is important) big toe. It hurt like hell and by reflex my right knee bent. Of course everything happened in a split second and before I knew it I was literally falling out the shower. The soap fell on my right toe, my right knee bent and because of the direction I was facing I crashed thru that shower curtain and onto the ground. STEUPS!! All in all though, it was a "good" fall..nowhere was hurt, no bruises and no long lasting effects...didn't hit my head either (a couple people have threatened to buy me a helmet - heeheehee)

Anyway, was a good move and all's well that ends well and thank God I still haven't had to try out that escape route.

Stax


Thursday, August 18

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

Thursday, August 11

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.