Author: Stax

Back at It II

As allyuh know, I found The Shepherd Center for therapy and I never looked back so for my fourth year straight, I went to shepherd this year for 10 sessions of OT and PT. One of the things I like about going to shepherd every year is that I don’t have to repeat my story every time. Rebecca, my OT and I have been working together for 3 of those 4 years, which is why she was able to say/see from jump this year, that my thumb had become an issue. I have actually had 4 PTs but all but one of them is still around in some capacity. The fact that it was a new PT each time hasn’t bothered me because my story/progress notes are in my file and if needed, all they need to do is talk to my old PTs. I actually finished my round of 10 sessions at the end of August, and as always, it was 20 hours well spent.

One of the things that ms takes from us is muscle strength. I’ve told u that my left hand is weak, so weak sometimes that just opening the hand takes everything in me to pull off and even then, it doesn’t open all they way. Now luckily, at least for me, only some muscle groups (that I’m aware of) are affected; the left hand, my hamstrings and my core- ugh! I tell people sometimes, that my core is nonexistent (I know that’s extreme cuz I wouldn’t be able to sit up (not do a sit up eh) stand etc). It’s most annoying and I hate it so, but I have to deal/live with it. Taylor, my PT this year, asked me if I had anything specific that I wanted to work on during our time together and I told her that I’d like to work on my core. She liked nothing better because she is a certified Pilates instructor as well, so we incorporated core work in just about every session.

One of the other reasons that I enjoy going to Shepherd is that I get to “play with/in all the “toys””. This year, I didn’t do that as much but one of the pieces of equipment that Taylor wanted me to use is the “AllCore”. She explained that I would sit in the machine as it rotated/moved and my goal was to remain as upright as I could as it went thru its motions. Unfortunately, the machine was at the main campus of Shepherd rather than the outpatient facility where the MS Institute is housed, so we had to schedule my use in advance and coordinate to meet at the main campus, so I only had the opportunity to use it once. It was unfortunate because with prolonged use, I could definitely envision the long term benefits.

Now doh get me wrong, I know that I can incorporate sit-ups, crunches and whatever other core exercises into my routines when I go gym (and sometimes we do) but those things are no fun. I prefer exercises that don’t feel like exercises – years ago when I was dancing, it was a workout and a half but it never felt like I was working out/exercising because I enjoyed doing it so much; that’s what I’m talking about. Anyhoo, as difficult as it was, I liked my time in the AllCore, doh mind I had to concentrate on so many different things to do it properly(ish) – shoulders down, back straight, lean forward…all the while “engaging my core” to keep form. I think it was the hardest thing I’d done that week! Enjoy a short clip…

Riding with Lyft cont’d

I wrote this yesterday but was only able to publish this morning…

Ohmyword. I’m writing this from a Lyft car right now. I published my last post at 1:00 this afternoon. I just finish talking about the fact that men don’t complain and now 5 hours later, I had the interaction below with ken, the driver:

He pulled up and I saw the look. I ignored it and said, “is it ok if I sit behind you?” He nodded said yes and, “what about that (pointing to bumblebee)? where u gonna put that?” I said “it’ll fold up and fit in ur trunk.” He said okay and pulled into a spot. As I went thru the motions of folding up bumblebee he oooohed and aaaahed at how he folded up but I knew that we would “have issues” when Ken started his steps to lock it in place and I could hear his grunts of frustration.
When Bumblebee was folded and locked, I said my usual “it’s a lil heavier than it looks ok?” But by then ken had already tried to pick him up and exclaimed, “this thing is heavy!” He tried again, “how u know I can pick this up?” I said “I don’t so I will get help if I need to”. He hoisted bumblebee a third time “this thing is heavy. Do u always do this? Suppose a woman comes for u?” Again I said ever so calmly, “yes I do this all the time. Like I said if u don’t want to deal with it I’ll get help.” (I didn’t say u can leave and I’ll get someone else…I was already running a little later than I’d planned) he said, “I don’t mind and I don’t want to damage it” and lifted it into the trunk.

Now this is what I meant when I said in my last post that people try to make nice after the fact. We drove in silence (which is no big deal and it gave me a chance to write) and when we got to my destination, he came out the car, took off his shirt (he had on a vest underneath) and said, “I have to get ready for this.” I heard him grunting by the trunk and he brought the scooter to me and said, “I never had to deal with one of these before. What’s it called?” I told him that it is a mobility scooter and I use it to get around. He said,”okay. Well I’m glad that I got you because now I know how to handle it. I never had to before. So is that it?” I told him that I had one more thing to do before I took off but that I’d do it. He said, “no. Tell me. I want to learn”I told him what to do, asked him if he’d close the door for me, told him thank you and scooted off.

Times like this I also wonder if I should rate the driver a “3”. I remember the first time I did that I got a message that Lyft will not pair you with a driver who’s rated a 3 or less. He tried to make up for all the initial comments at the end, but if I rate him a 3, it will guarantee that he and I will never have to deal with each other again!

Riding with Lyft

So if you’ve been reading this blog for a while, you know that I had to give up on my Stax4 dream because I stopped driving a few years ago. I believe that the last time I drove a car was may 2016. I miss driving to this day…especially fast and aggressively …but I digress…anyhoo, so I was thinking about buying an accessible vehicle when T-ster suggested that I use Lyft to get around instead of putting myself in the expense of a new car (that I rhelly didn’t want cuz I like small cars). Well allyuh, I never looked back. I eh go lie, I was nervous at first requesting a Lyft ride, but eventually I got over it and it was smooth sailing…it’s now been 3 years later and…well, a weird thing has started happening.

Now, I really haven’t had any bad experiences. I would say that 99% of the time, I walk the driver thru breaking down OP or folding up the ‘bee and we’re off…but these days, I eh go lie, I breathe a sigh of relief every time I request a car and I see that a male driver has been assigned. No one outwardly complains (sorta) but I see the doubt/trepidation/skepticism flutter across their faces when they pull up and see me…and the worst offenders are young black women. I’m not a judgemental person generally but on the lyft app? I am – the other day I cancelled rides three times (I had time to kill that day) just hoping to be assigned a male driver and also because I was thinking about my potential experience and basing it on how the driver looked. Understand – guys never complain and they always get out of their cars to help, without my asking or saying anything. Women? Not so much…they huff, puff, make lil comments (nothing rude or that make me feel uncomfortable) and then they try to make nice after the fact. Now don’t get me wrong, if someone doesn’t want to deal with the scooter or put it in their car or whatever, I have no problem cancelling the ride and sending them on their way but instead of just stating as such, women will ben an screw before or while we are going thru the motions to get the scooter in the trunk – once, I actually helped one put OP in her trunk; don’t ask me how I did it but I did – she was muttering and grumbling a little and I just helped so that we could move along. I don’t let whatever they say or how they act rub me the wrong way because I just don’t have time to make that a “thing” and please keep in mind that it doesn’t happen all the time or even the majority of the time. 

So of late, I’ve been wondering if I am being presumptuous by using the regular Lyft car. I say “regular” because they supposedly offer accessible vehicle rides too but I don’t use those cuz they have to be scheduled in advance (I leave here on a whim sometimes) and ultimately, either of my scooters will fit in any car trunk so I don’t NEED an accessible vehicle. But, by using the regular car, I’m making the assumption that the driver will be okay dealing with the scooter…is that wrong of me? Am I being too bol’face? Why should I assume that a stranger would just do whatever needs to be done? I actually talked to a driver about it – although I don’t know that the driver was the best one. HE had no problem with it and HE told me that HE viewed it as HE was making a difference in someone’s life and was helping someone who needed help and he was just doing what he’d hope that someone else might do for his daughter, his niece, his mother etc if they needed help.

hmmmm

Anyway, those thoughts have been swirling around in my head lately, although they haven’t stopped me from using Lyft when I need to…I am just a little wary sometimes.

Back at It

I’ve been missing. I don’t remember exactly what happened…and then…well, life…I hope not to stop again. I know that I’m playing with ur emotions – please forgive me! There’s good news though, this time is different to times in the past when I stopped writing. This time there’s no link to how the ms was behaving nor can I link my not writing to ms in any way.

So in the past 10 months I’m happy to say that things haven’t changed too much or very drastically. As far as my physical disability – with respect to my walking and that left leg of mine? Stability…no improvement but no degeneration either…I continue to use CBD Oil and I have good days and not so good days when for whatever reason, the leg fights me and people who try to bend it or my walking seems very laborious. So my lower extremities are okay. What has worsened, is my hand. Used to be that my fingers would curl up so that the left hand looked like it was always in a fist (of sorts). Well now, my thumb regularly bends in, but not over the fingers, under them. So picture, if u will, u put up your 4 fingers (with the thumb across ur palm) and then u bring them down. That’s what my hand looks like regularly and the fingers and thumb are all weak so opening the hand to do anything I need/want to do gets challenging but I make whatever I need to do happen. It was the one thing that Rebecca, my Occupational Therapist, noticed from jump when I started therapy 10 weeks ago…but that’s a story for another day.

I know that I mentioned before that I’d planned to look into moving over to the Shepherd Center as a regular ms patient. I’ve been attending outpatient rehabilitation therapy for 4years and it’s closer to home so it made complete sense to me. The day that I talked to my neurologist about using CBD Oil and he told me that the MSCA had made a decision that, as an institution they are not going to support or promote patients’ using it was the proverbial nail in the coffin and I talked to my therapists and got the paperwork to make it happen. Filling it all out was easypeasy and I submitted it…couldn’t wait to get started over there and then I got the call. “Hi Stacey. Thank you for your interest in becoming a patient but unfortunately it’s not going to happen.” Turns out that Shepherd doctors do not put their patients on Lemtrada so they cannot support it in any way so since my last ms medication was Lemtrada, I was disqualified. Steups!!! Maybe in 2021, I can try again…I say that because that’s when the Lemtrada monitoring is supposed to stop…who knows🤷‍♂️.

Anyway, that’s it for now…I’ll be back…same time next week!

iFLY

I shared before that I went indoor skydiving in April. Since actually jumping out of a plane is not going to happen anytime soon, I’ll settle for the next best option. When OB and I went in April, I learned about their “All Abilities” program that occurs on one Thursday night every month.  Essentially, the facility is open to anyone with any disability to go fly to their heart’s content.  I tried to go in May but no one could tell me exactly when it was happening. I tried again another month but there were no available slots…sigh. All Abilities night is half the price AND they throw in a video (normally you have to pay extra for that) so I was really trying to take advantage of it. Fast forward to September and the Lumwai clan was in town and we decided to go back. It was my second time and it was just as much fun. By then they had added a virtual reality experience that we tried to add on but alas there was no availability that day. At that visit tho, I learned that October’s All Abilities night was on the 19th. i called early and booked my time slot…I wasn’t missing it that time and I definitely wanted to add the virtual reality experience as well.

I have to give props to the staff at the iFLY facility and the person who came up with the idea. The cost includes all the gear we need, a short training session and two  1-minute flights plus they thrown in the video for us (we’re VIP u know). I went by myself and I needed help putting on the suit and helmet and Austin, my instructor for the night, took care of me (and everyone else who needed help) without issue. Under normal circumstances, flyers would sit behind a tethered off area and when it’s your turn u walk up to the entrance of the wind tunnel and fall into it to start flying. Additionally, your single instructor stays with you to guide you as needed. On your second flight, they increase the wind speed to about 105mph and the instructor flies u in a circle while climbing vertically in the tunnel (intense experience). On All Abilities night, to accommodate us, they do not cordon off the area and anyone in a chair can roll right up to the tunnel entrance and then two instructors help to get the person off the chair, if needed, and into flying position (the 2 also stay in the tunnel with the flyer). Depending on the disability they will tie the person’s legs together so that they are controlled while in the tunnel and on the second flight, one of the instructors takes the flyer vertical but not in a circular motion.

when it was my turn I told my instructors that driving the scooter right up to the door didn’t make sense so I would stop at a point and walk with them the rest of the way. Well don’t you know that one of them asked if I would mind if he picked me up.  (absolutely not!!! and) being one to never say no to a “lifup”, I said “oh. do ur thing”. He picked me up like a little rag doll and in 2 2s, we were at the door. I was able to use the virtual reality helmet during my second flight and that made my night.  Allyuh. I eh go lie…I had fun but I am almost sure that the wind speed was less that night so my first flight was not as intense as before and just “meh” but the virtual experience during the second made up for it and just for those 2 minutes nothing beats the feeling of complete normalcy! I will continue to go on All Abilities night because, well it’s half the price – duh! but mainly because there are 6 different VR views and I want to try all – I also found out that it’s the 3rd Thursday of every month. Additionally, with any luck since I’m a repeat offender, they’ll start teaching me some tricks to do while in the tunnel.

i lost my voucher for my video, so enjoy a lil pic instead…

Pic of some who were there that night

 

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