*photo: this is the most fun i've had w/ my cane (duh, Lori involved)... applicable to my rant re: walking a few paragraphs down...
going on week 4, and we have made a SUCCESS on the health front! No, don't get too excited, no new neurologist + infusion center put together, but we have made contact with an awesome physical therapist, Beth. she is very perceptive, extremely smart, and most of all- is SHORT. for those of you that don't know, i have a great record of health care services with short people. after my examination, we sat down (she brought mom in- smart idea b/c i was already exhausted and knew mom would pepper me with questions on the drive home) to go over her observations and initial plan. key stats:
- she has treated many MS patients before, BUT the 1st thing out of her mouth was to emphasize no MS patient is ever alike, and there is no such thing as a "typical" or "textbook" MS patient. this helped my extreme insecurities after the cocky neurologist ripped into me last week. i'm already likin' this lady!
- 1st step: before we attack my issues w/ walking (gait and coordination), muscle deterioration and exercise plan, there is still a substantial amount of pain and overall body "problems" that need to be addressed. she is going to use a process called myofascial release (wikipedia has the most comprehensive explanation) since my body is still extremely sensitive to the touch and induces pain very easily. the myofascial technique is not as painful as a deep massage, but still targets the deep muscles. the "goal" on the wiki site is exactly what she is aiming to do: eliminate pain, increase range of motion, and balance my body.
- weakness & stiffness: my entire body is weak, but especially my legs (yay! i still got the arms!) in addition, my torso, even stretching into my shoulders and neck, is extremely rigid. this helps to explain my difficulty breathing and at times, pain upon breathing. my torso literally doesn't move- she even showed me how she was trying to push down on my hip bones/area and nothing budged. <>
*okay, okay, i have to admit, i felt a tiny moment of validation- when i went to the ER during week #1 (hot doc experience #2) unable to breathe, someone in my family (ahhhem, mom) was determined it was a panic attack. altho the hot doc didn't think so, i now feel justified that it was/is a real physical problem (in the eyes of others<>
sorry, back on topic- why is this torso stiff/rigid issue so important? your torso is the center of your body, the center of your balance. if you become off balance, you compensate with your arms and/or legs (this usually isn't a conscious effort)- however, i cannot use either, causing me to lean/tilt without assistance to steady myself. in addition, i had not brought in my cane (another attribution to dr. cocky neurologist- he belittled me for using it)- she said i most definitely need to use it (aughhhhhhh- it is not a good look on me!) if i am walking without my cane, my body has to work SO hard to stay balanced, not fall over, etc.- and guess what happens? i become easily fatigued. but WITH assistance (cane, hot guy on my arm, leading eye dog- ha jk), i am steadied and can save energy.
- face pain: i told her about what the crazy alexandria neuro-opthamologist (isn't boarded in one medical specialty enough?) said, how my eye pain was actually migraines in my eyes. (huh?) she said that this has started to become something more talked about, but to be honest, she wasn't quite sure what it was, OR if the medical community themselves isn't quite sure what it is, so they're calling it that for now. when she pressed against my jaw and face area, it was incredibly painful- again, she said that didn't surprise her- she has never had an MS patient that didn't clench. i hadn't realized this was a problem, sometimes i was aware of it, but not frequently. she explained that b/c of my history of sleeping problems (lately i have built up to 5 hrs of sleep the past few nights!!!! what an achievement!- well, clearly not tonight!), that was prob why i wasn't noticing the clenching (longer sleep=longer periods of clenching, which would become extremely sore and more noticeable in the AM or throughout the day). from her observation, she thinks that my headaches are tension headaches, not only from the face pain, but also the "torso situation" (<>
- spasticity: again, she shocked me by asking if i was experiencing any spasticity- yes, of course, it's one of the most difficult/painful issues for me right now. (i had a general info link on spasticity, but link isn't working- google national ms society and spasticity) i was so amazed that she could tell that merely by her observation (there is so much to share by now, that i always leave out key details). she explained that this comes out of the stiffness and rigidness in my body mentioned above, in addition to my posture (b/c my torso is rigid/weak it can't support my body at times). many of you have seen this involuntary jerks and uncontrollable spasms- almost seizure like at times- she explained that this contributes to my extreme lower back pain and also to some of my leg pain.
- to help alot of my issues, some of the answers will initially be guesswork, and will require me to be extremely honest with beth about my physical symptoms and fatigue/pain both during and after the session. while i suspected this, she vocalized that in order to improve these symptoms and be able to function with them, i will have to follow her plans exactly- and NOT OVER DO IT! (slight personal problem with this, i have tended to go over the top in most everything in my life!) but overdoing the exercises could cause more damage and set my progress back even more. she referenced that some of my "homework" would be as minimal as 3 reps, 4x a day.
so what's the "plan"? we are reassessing in 4-6 weeks- maybe then i can graduate to using an exercise bike!!! wow, the little things that make me happy these days... to be completely honest, the positive experience at the PT on thursday changed my outlook on the entire week, and it has ended on a high note. i am now singing praises for PTs and have a total respect for how they can push/prod/pull on your body and identify your problems and suggest solutions. without lisa, i wouldn't have started on the gluten free (and now trying to include sugar free) diet, and would still be miserable with nausea, an attractive puffy-ness, and other GI issues you don't want to hear about. and with beth, maybe i'll be dancing in stilettos a year from now! hey- a girl has to aim high...
lessen/goal of the week: i think i'm going to have to work on my patience.
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