Would you rather?

Just two years after diagnosis, my friend has died. Ovarian cancer. Kinda ironic because she was the least girly-girl I knew, so this seemed like a desperate attempt by her organs to gain her attention.

image from lorna.typepad.comJust two years after diagnosis, my friend has died. Ovarian cancer. Kinda ironic because she was the least girly-girl I knew (when she got married she wore blue boxer shorts and her combat boots under her frilly white, traditional wedding dress), so this seemed like a desperate attempt by her organs to gain her attention. In this post I’ll call her D.  (Of late, her favorite online handle was DeathByChemo so I guess she expected this on some level.)
 
Both of us never had kids, but she did tell me once that while she couldn’t see herself having children, she also couldn’t see herself getting old without adult children. At her memorial, her husband explained that she had discovered that she loved volunteering at the local animal shelter, and that the strays they had adopted had become their kids. That makes sense.
 
The Beginning
I met her in the early nineties when we found ourselves working in the same document delivery company, catering to professional researchers in the SF bay area and around the rest of the country. It was a pretty low-level job but with ties to local university libraries at Stanford and U.C. Berkeley, for example, and highly educated colleagues from the area.  It led to some of the strongest, wittiest friendships I have in my life.  It led to our “posse”.
 
By the time I met her I had already been given the MS diagnosis.  While I was very open about it, I did not show any symptoms. And like I understood from my first neurologist, I was probably going to be “out of the woods” in another year or two. We considered it, then, for the most part, disregarded it.
 
The Middle
Once we went car camping (kamping with a “k” because you go to someplace like KOA, get an assigned space, pitch your tent—if you’re using one, not naming names!—by your car and share a common restroom with other campers). We scoffed at this type of camping but also recognized that we were too lazy (was this the beginning of my fatigue?) to do anything more.
 
When my torso unexpectedly went numb (now known as the MS Hug), we decided to take advantage of the numbness and went to get my belly button pierced, giggling all the way.  We started an imaginary rock band, envisioning that we wouldn’t actually play instruments, but could spread rumors of our existence ala SpinalTap and took to calling ourselves “The Übergrrls”.  The name sticks to this day.
 
Eventually, most of us moved on from that job and almost all of us married.  But we still kept up with each other, adding other girls (and a few boys) to our posse as we went.
 
When I began to show MS symptoms exacerbated by the heat, I moved to a cooler area, the California coast. Another moved with her husband (and cats) to Japan, then to Berlin.  D. and her husband eventually moved down to the central valley section of California where she had grown up.
 
Staying Connected on Social Media
In late 2015, D. started having pain from blood clots that were developing in her legs. She went to her doctor and was diagnosed with ovarian cancer.  The doctors congratulated themselves for “catching it early,” rushed her in for surgery and felt it went very well.  The plan was that for a while after D. would go for chemo and radiation therapy, then it would be over. We’d all tell stories about it into our old age. We exhaled and pretty much went back to our usual routine.  
 
We had already set up a group in Skype with everyone’s email I called “The Girls”  and were able to see and kvetch with each other simultaneously and regularly. 
 
Later, as that got harder for D., we discovered the free messaging app, WhatsApp, where we once again arranged a group where we could post whenever and then whoever else was around could simply chime in. Even in Berlin, with its nine-hour time difference, we all felt connected.
 
Would You Rather?
Then came more bad news: the cancer was in her liver, the lesions inoperable (tumors too deep). She decided she wanted to keep fighting; that meant more chemo. She developed painful neuropathy in her legs and arms.
 
Recently she was bemoaning the lack of dexterity she was now experiencing in her hands, presumably from the chemo. Still, she said, I’d prefer ovarian cancer to MS. 
D.:  The chemo that breast cancer patients get often causes lymphedema. That’s one side effect I don’t have to deal with with the drugs that I’m on
me:  its wry-funny how we view other things as worse then what we have
me:  i don’t have pain which a lot of MSers have
me:  but they might still be able to walk
D.:  I know. Lymphedema is awful. It’s like having a beach ball of fat hanging off of you that’s not even really fat and you totally didn’t deserve it. But it looks like fat.
me:  so would i trade?
D.:  I don’t give a f@#$ about being bald. But apparently there a class action lawsuits filed by breast cancer pussies because chemo made them bald. Breast cancer has a 90% survival rate. Ovarian cancer has a 90% death rate. And the breasties are whining about hair loss.
D.:  Good question. Walk or pain? I often ask myself if I could get something back would it be my hands or my legs. I would love to feel runners high again. I would also like to be able to cut my toenails, pick my nose, and sign my name to a paycheck.
me:  i take living bald to dying with hair hands down
D.:  Yeah that’s not even a close one. And I take ovarian cancer over MS. You’re going to outlive me, but I had 49 years of perfectly normal walking and nose picking.
D.:  Ovarian cancer is [unintelligible] Stupid Siri. But to be fair I’m probably still mumbling from the Dilaudid
me:  thank god i still have nose picking
me:  😉
D.:  Braggart
 
 
DAweddingdress[1]
 
 
Related stuff
 
 

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Wash but don’t rinse

I discovered no-rinse laundry soap for hand-washing. Genius!

12oz-Soak-Yuzu-Shop[1]

I spend most of my time on the second floor for now.  But my laundry facilities are on the first floor. I decided I should wash some of my things upstairs and hang them to dry overnight in the shower area.
 
I began to search on the web, looking for recommendations on soap to use on hand wash.  I was not specifically looking for how to wash delicates or yarn for knitting or baby things, for example, but when I discovered this review for hand wash detergents, all those things were mentioned.
 
This led me to Soak where I discovered the idea of no-rinse laundry. This may be a no-brainer for you, but for me it was genius!  So I ordered some from the manufacturer and found that it works!
 
With Soak, any dirt comes out in the water, and whatever is left in the item evaporates.  No rinsing required.
 
What is No-Rinse and  How Does It Help MSers?
 
Skipping the rinse second step works for a lot of MSers like me who deal with fatigue and/or have troubles with their hands.  Also, when you work far away from your laundry facilities, you really have to weigh your choices.  Do I expend my limited energy and mobility to carry bed sheets downstairs more than once a week?  I vote no.
 
Many times, I wake up, fill the sink with warm water and a small squirt of soap, then dump my pjs in and give them a swish or leave them to soak until lunchtime. Then I hang them to dry on my clothes rack in the shower.  This works!
 
If I’ve had any “accidents” at night, I will mark place with yarn, then wheel into bathroom, finish my ablutions, then grab a rag, get it wet with the treated water, shove it into a plastic bag (to protect my lap), then wheel it back to bedside and scrub the marked area. I then leave it to air-dry.  It is usually fresh and dry by bedtime. Pee spots conquered!
 
All-Purpose Formula
 
According to their website, Soak uses a cleaning formula that’s “great for all fabrics, including wool, cashmere, and silk.”
 
It smells wonderful, and no-rinse means “less work, less water use, and a lower likelihood that you’ll damage your dainty duds with too much handling.”
 
I also discovered that chemistry is important in soap types.  You see, chemistry is different in different types of soap.  In that same article, I read that another soap contains lanolin which “tends to attract dirt and grime…” after you wash with it and since it doesn’t evaporate, you must rinse it out of your garment.  
 
Last week I spilled some coffee on my shirt and tried it on that, just soaking it to see its cleaning power.  Alas, it didn’t work as well, but it’s worth the trade off and just soaking still got a lot out.  I assume I will need to scrub first next time.
 
You can get it from Amazon too!

 
 
Related stuff
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I celebrate a carepartner: my Dad

A poem I wrote to my dad for Father’s Day.

 

DadDaughter of one, sister of one,
married to one, friend to many.
I will never know
how it feels to be one.
But I can thank you.
For everything you've tried
to teach me.
And all the things I've learned anyhow
from watching you.
To be kind, like who I am and strive
to be a better me today
than I was yesterday.
To be curious about new things
and trust my own research.
To let those we love
make big, spectacular mistakes
then help fix what we can
and stay out of it if we can't.
To be polite but pick my battles.
Listen and consider alternatives.
Walk (or roll!) gently on the earth.
To try to age gracefully.

–lorna 

Happy Father's Day, Dad.  I love you, and thanks!

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When you have trouble falling asleep

Try these suggestions the next time you have trouble falling to sleep

Sometimes I have trouble falling asleep. I don't like to take more meds than I already do. So instead, I mentally check my bladder (to make sure I don't have to pee) and the room temperature (to make sure it is not too hot or too cold), then try these:

White noise
On my first night in this house, I realized that where I had placed my bed would never be conducive to sleep. The house was right at a "t", where one street feeds into another, in a near-to-the freeway, albeit quieter after dark, residential-ish neighborhood. The one bedroom was facing the "t".

Also the house was close to the local fire station, and a friendly neighborhood bar. That night I discovered how light of a sleeper I am!

The very next day, I moved my bed around so my eyes would not be in line with the headlights of oncoming traffic, bought black-out curtains and an industrial strength white-noise machine. I love it and have turned it on for most of the nights in the 15 years since. When traveling without it, I often turn on the radio and just tune it to static at bedtime.

Alphabet counting
Next, I get into bed and assume my favorite sleeping position. Then I pick a category (bands, tv shows, movies, high school classmates, etc.–right now I'm doing four-syllable words–A aforemention, B beautiful, C celestial) and begin to run through the alphabet in my head, trying to think of something related to each letter. I usually get no further than K.

Legs up the wall
Finally, if I still can't get sleepy, I push myself up, turn the opposite wat on the bed, with my head nearer the foot of the bed and laying flat on my back, slide my legs up the wall (over the headboard and perpendicular to the bed).

I fling my arms up over my head or fold them over my stomach. I usually stay that way for 5-10 minutes, but I have actually fallen asleep that way once or twice.

These ideas may help you fall asleep but if you have trouble staying asleep, you should talk to your doctor about it.

As the MS Society, for example, says "Getting a good night's sleep helps to alleviate many common symptoms of MS, including chronic fatigue, mood and memory problems. Daytime naps can also help, but only if napping does not interfere with night-time sleep." (Hughes, 2016)

For more information about MS and sleep disturbances, see the society's page on Sleep.

Related resources

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Recent MS studies

On SIRT1 and nanoparticles

Recently, some exciting M.S. research results were forwarded to me by friends.

In May 2013, results of an M.S. study was reported in Inside Stanford Medicine, a publication by the Stanford University School of Medicine. The study itself, entitled "Expansion of oligodendrocyte progenitor cells following SIRT1 inactivation in the adult brain” was published in the journal Nature Cell Biology (Nat Cell Biol. 2013 Jun;15(6):614-24).

Usually, the protein SIRT1 is considered to be beneficial for health. However, in M.S. and other demyelinating diseases, inactivating it seems to show that it then stimulates the production of neural stem cells that make the myelin sheaths.

The work suggests that SIRT1 may normally limit the production of myelinating cells after childhood development and that it has to be inactivated to again allow the production of these cells.

These researchers think that eventually it may be possible to induce the brains of patients with M.S to heal themselves by blocking SIRT1. Of course, lots more research is needed. 

Another trial, "Antigen-specific tolerance by autologous myelin peptide–coupled cells: a phase 1 trial in multiple sclerosis" (Sci. Transl. Med. 5, 188ra75 (2013) suggests that reintroducing a patients' white blood cells back into the body, like a Trojan-horse, secretly carrying modified myelin antigens, results in the immune cells starting to recognize myelin as harmless. It only had nine participants, which is “too few to be called a study” according to our primary doctor, but it does suggest an exciting new line of research.

And nanoparticles, which are cheaper and more readily available than a patient’s white blood cells, are proving to be just as effective as delivery vehicles.

This is good news! I’m really interested in stem cell therapy, and this seems to me to be a way to get it without first entirely knocking out the existing immune system.

So go, go, go!

But researchers still don’t know what causes the disease.

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My left hand

I am still waiting for my first dose of the oral MS med. In the meantime, I am wrestling with a splint on my valuable, only-working left hand.

A horse! a horse! my kingdom for a hor…er, thumb!

I am still waiting for my first dose of the oral MS med and the requisite 6-hour observation immediately after.  In the meantime, I am wrestling with a splint on my valuable, only-working left hand.

At the beginning of this episode, I started to get pain in my left wrist.  After I complained several times to OH, he finally got me to make an appointment with The Quarterback. (I tend to down-play any health anomaly at first aand maintain that doctors are too important to be bothered.  Notice anything about that? Avoidance = Denial!)

­­­­­­­­­­­­­­­­­­­­­

Fearing carpal-tunnel, I was relieved to hear her tell me it was tendonitis.  She wrote me out aprescription for 6-weeks of hand-therapy and another for extra-strength ibuprofen.

My-splint

The next day, we drove up the freeway a few exits and pulled into the parking lot of a local gym.  The hand therapy office was upstairs.

I was still in my wheelchair so I had called ahead to ask about accommodation.  I was assured that I could use the elevator in the gym.

But instead, when we got there, we were confronted with the first of two "lifts" to get to the top floor. This was "the elevator." I wheeled into the first, which was only big enough for me and my chair.

Once OH had made sure that my brakes were locked, I pushed the button to raise the platform while he climbed up the handful of stairs and met me at the lobby level.

I rolled out of the cage and OH wheeled me over to the taller lift, and we repeated the procedure. 

It was sooo slow and shook violently as I reached the top. I was annoyed by that but OH told me later that waiting for me and suddenly seeing that, "took 10 years" off his life.  [Awww, so sweet!]

He pushed me into the therapy suite and we were directed to the small office at the back.  By this point, I was not impressed at all and muttered to OH that in my opinion, I only needed to come this one time, and then could do the exercises or whatever by myself.

He told me to reserve judgment and we entered the office.  And met the two very trained and super friendly therapists.  I will keep the appointments.

I learned that the tendon that runs from the middle of my thumb to my elbow had become swollen and inflamed.  Amazingly, the tip of my thumb, and the rest of my fingers are controlled by other tendons.  The therapy consists of gentle stretching and heated massage. 

Then my hand was traced and the markings were transferred to heavy plastic, cut out and warmed in water until it was pliable. 

Finally, I was instructed to rest my elbow on the table in front of me and hold up my palm, bend my finger to my thumb in an "ok" sign, where the warm plastic was wrapped around my thumb and wrist.

The plastic hardened, straps were affixed, and I've been instructed to not take it off for six weeks, except for temporarily, to gently wash, stretch, and massage.

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Goldil-OCTs and the three chairs

Last week I went for my Optical Coherence Tomography (OCT) test.

Last week I went for my Optical Coherence Tomography (OCT) test.  The tech was running way behind, we were told.  She was accidentally double-booked, we were told.

As I sat there, I discovered that I was glad that this test was not a “fasting” test, glad that I was not waiting on an empty stomach.  [So sad that this is my first thought.  Welcome to our sandbox!]

Probably when I see the test results, I’ll be way more fascinated, but right now I am struck more by how awkward it was to transfer myself from my wheelchair to two different chairs and a swivel stool, then back to my wheelchair 45-minutes later.

The test started with me plopped down in a comfortable, padded executive chair and holding up a “mask occluder” [ha! It took me ten minutes to find out what that was called!] over each eye.

AMASK-T
Executive-chair

First covering one eye, then the other, I read the eye chart lines down as small as I could go.  Additionally, after each time I covered the opening with the pinhole screen and tried again.  [Curious, but this helps!!]

Next I switched back and forth between each eye fixating on the center dot of an Amsler grid so the tech could determine the accuracy of my central visual field.

Then I lurched over to a basic, hard plastic office chair facing the far wall with another eye chart.  Again using the occluder I read aloud the increasingly smaller letters on that chart.

Visitor-chair
Rolling-stool

Finally, I pitched forward to a revolving stool.  I knew it swiveled but didn’t realize how hard that would make it to lean on while shifting over.

I suddenly had visions of me as a character in an I Love Lucy episode [do I have this series on the brain? (see here)] trying to stay on the stool as it tried to spin me off!

When I finally got seated and righted, my left eye was taped closed.  I was told to lean slightly forward, rest my chin on the chinrest and press my forehead against the camera frame, then fixate on a pinpoint of blue light.

The tech told me I could blink whenever I wanted, just to keep staring at the blue light, that this part of the test would go fastest if I just held still and stared straight ahead.  First one eye was tested, then the patch was switched to the opposite eye.

Finally she removed the eye patch and put “numbing” eye drops in both eyes.  She then gently placed the rounded tip of a tool that looks like a pen directly on each cornea to measure the intraocular pressure of each.

Next test will be a dermatologist for skin-cancer screening.  [I suspect all these tests are required because of things a few patients contracted in clinical.trials–to make sure those things are not already “on board.”]

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Yet another swerve

It seems that I continuously need to educate myself about my central nervous system, my immune system and how every new MS therapy works and what it is intended to do. Although I was never interested in science, I’ve become at least curious over the last twenty years.

It seems that I continuously need to educate myself about my central nervous system, my immune system and how every new MS therapy works and what it is intended to do.

Although I was never interested in science, I’ve become at least curious over the last twenty years. 

I also learned that I could inject myself in the thigh weekly with a 1-1/4 inch intramuscular needle for about 3 years on my initial first-line therapy and then, after I developed severe liver toxicity and had to discontinue that one, daily with a 1/2 inch subcutaneous needle for almost 8 years on the next one.

Although I had always before been averse to taking any kind of medication, even aspirin, once I relented to this I started accepting the drug recommendations of doctors and other health care professionals.

I’ve sat through a 6-week IV course of steroids, a 6-month IV chemotherapy regimen, and two episodes of IV infusion with a second-line therapy.

In the past ten years, I’ve had a liver biopsy, a gamma radiation procedure, and many MRIs.

From one therapy, I learned that it is not more beneficial to suffer through fever and that taking acetaminophen to squelch it is not a cop-out.

From another, I learned that icing the area before I injected, as recommended by the nurse, made it painfully excruciating; using heat instead worked way better.

This underscores the idea that what works for one person does not work for another.

After my allergic reaction to it has disqualified the most recent therapy, I am now poised to try the next one, a new oral medication for MS.

Before I start, I have to go for an optical coherence tomography (OCT) test, an EKG, and a skin-cancer screening.

Like I said, I will now need to educate myself on this drug and why I need these tests.  Watch for future posts!

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My big adventure riding the little bus

I called the county’s transit system to ask about services for the disabled. They requested that I make an appointment with them, at their offices, to assess my abilities and needs. The paratransit agency would pick me and my electric scooter up outside my house in a paratransit van at 12:30 for a 2:00 appointment,

After some temporary confusion and delays [with my old-new neurologist leaving to get married] I finally got assigned a new-new neurologist. 

We met with him and confirmed that I'd had the blood test which determined that, at least right now, I did not have the antibody in my blood that could even make it possible to develop the dreaded viral brain infection while receiving the monthly infusions of medication, as previously reported.

Again, this is not a cure.  As with all the other treatments we've tried so far, the goal is to stop or at least slow down the progression of the disease.  But there is still no objective test of how effectively, or even whether, it is working.    All I can use is my self-reporting.

Is the fact that, at 46, I can still ambulate around the house, albeit only when aided with a walker, evidence that previous treatments have been at least partially successful?  Or is this how far the disease would've progressed in me even without any medication?  I can't know.

Anyway, finally last month, OH drove me to a certified infusion center (the closest to me, in a rheumatologist's office in my county but still a few cities away), where I was hooked up to an intravenous (IV) line and the super-drug was dripped into my arm for an hour. 

Then the needle was removed but I was observed there for another hour to make sure I didn't have a negative reaction.   Finally, OH, who had just been hanging out in the waiting room the whole time, was able to drive me home.

Which started me thinking about arranging some sort of regular pick-up by public transportation so that OH wouldn't have to just wait around for me once a month.   So I called the county's transit system to ask about services for the disabled.

They requested that I make an appointment with them, at their offices, to assess my abilities and needs.  The regular buses, you see, are already required to be "accessible to passengers in wheelchairs and limited mobility." [Whatever that means!]

[On another website, I found this description: "…buses are equipped with lifts or ramps that can be used by people who use mobility devices or cannot climb steps…Each bus also has a kneeling feature that lowers the front end so the first step is easier to reach. If you have difficulty boarding the bus, ask the operator to lower the front end or deploy the lift or ramp."]

The paratransit agency ["…special transport services for people with disabilities" outsourced by my local county transit district] would pick me and my electric scooter up outside my house in a paratransit van at 12:30 for a 2:00 appointment, then bring me back when it was over.  The fare, which is usually $2.50 each way, would be waived at this time and OH had the option to ride along, too. [In the end, I went alone!]

So, on Thursday, Nov. 3 at 12:15 [to be safe], I was waiting outside on my scooter at the street-level [my house, if you recall, is on the downslope].  OH had to make a quick trip to the hardware store, so I was proud of myself for getting up into position by myself to wait.

Then, it began to rain, gently at first. [This was the reason for his urgent trip to the hardware store, trying to get the house buttoned up before the winter rains.]  OH arrived and whipped out an umbrella for me while making "tsk, tsk" noises and urging me back inside to wait.

As soon as I wheeled back into the house, the van came.  So back out I went.  The driver, 'Sam' [names have been changed], mechanically lowered a ramp, I wheeled up onto it, he attached a padded belt around me as protection, then mechanically raised me on the ramp. 

I wheeled off the ramp and continued into the van.  'Sam' then asked me if I could transfer myself to a seat and put on a seat belt, I did so, then he wheeled the scooter into place and secured it with straps, folded up the ramp and shut the door.  Then he climbed behind the steering wheel and off we went!

At about 1:30 he pulled up to the building, lowered me down to the sidewalk, and pointed me towards the front entrance before driving off.  I scootered through the automatic door and into the lobby, where a worker leaned out of an office and said he'd be right with me.

[As an aside, although my appointment was scheduled for 2:00, I appreciated this flexibility and was hopeful that it forecast an early return home for me.]

Just like at the DMV, I had my picture taken and my fingerprint scanned into the computer.  I tried to sign the digital signature pad [another aside: it took me ten minutes on the Internet to find out what that 'thingie' was actually called!] but I couldn't. So, instead 'Joe' digitally photographed my state ID card.

Then he walked with me on my scooter back into the warehouse-like room for the obstacle course.  First, he asked me to scooter up a ramp and into the simulated regular-sized bus, perform a u-turn in the aisle, and back up to park the scooter face-forward in the front area of the bus. 

And although "seats on either side of the bus near the front fold up to allow room for securing mobility devices," I couldn't even properly execute the u-turn to get there.  It wasn't wide enough for me and my scooter.

At this point, I was in the faux-bus, facing backwards, and unable to turn around.  But even after he and I concluded that yes, I was unable to u-turn, I was still trapped!  I could turn a bit then go forward a little, then into a pole, turn the other way, go back a little, then into the fare box.  

In the end, 'Joe' squeezed by me and pantomimed how I could affect the u-turn and get out.  After I finally made it, he slid a sensor on my finger [a pulse oximeter!] and checked my pulse.  This would be repeated again multiple times.

Next was the obstacle course.  I had to navigate a cracked sidewalk with uneven pavement, then push a crossing button, wait for the light to change, then simulate crossing the street before the countdown ended, then drive over a brick pathway, then traverse a winding path cut through raised cobble stones.  After which my pulse was taken again.

That was one time.  I did the whole thing again 4 more times, including 4 more pulse readings. And after every iteration, 'Joe' asked me if I wanted to stop, or if I thought I could do another.  [I did notice that my vision had started to waiver, but I wasn't going to concede that I needed to stop…]

Finally, he decided that we had finished [or did he read that in my pulse??] and walked me back to the waiting area.

He told me that he'd be mailing me a packet of introductory material within 7 to 10 working days, then left me with another disabled rider to wait for the return ride.  She and I sat there for another hour [while my vision cleared and my core temperature came down] with a monitor showing old episodes of 'I Love Lucy.' 

At one point 'Joe' came back, apologized for the delay and gave us packages of crackers shaped like goldfish.  Apparently, the rain was causing traffic mayhem.  In the end, he arranged a taxi-van for us.

The entire episode took over six hours; I was home about 6:30pm and went to bed shortly thereafter.  And while OH was proud of me for doing it and I was proud of myself for setting up this option, it has now been a week and I still feel overtired.

I will do this again–am intending to take it for my monthly 2-hour infusion sessions–but hope that next time is not as arduous as this, as testing to prove I am too disabled to take the regular bus!

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OT/PT Two-step

Where I discover why MSers have physical and occupational therapy.

As I talked to MSers on the helpline, I began to notice that those already on SSDI and Medicaid had regular physical and occupational therapy.  The therapist would even come to his or her house!

[In fact, often times the repeat callers were just waiting for a therapy appointment and called to chat until then.  Nice. Well it is “peer-to-peer” so…uh… glad to help!]

I surmised that this was a service that those permanently disabled and on Medicare, for example, routinely received as part of this assistance.

Then I wondered why none of my health care team had ever mentioned it for me.  Not my general practitioner, my neurologist, his assistant, or even my counselor.  Was it because I was still working and thus enrolled in private health insurance which considered that an unnecessary service?

I set out to discover whether it was available to me, and whether it even would be helpful for me.

I asked my new primary doctor about it and whether she could prescribe it for me, preferably with a service that would come to my house.

[I don’t drive anymore and OH will have to have hernia-repair surgery in the near future, so I thought that home visits would make more sense.]

Sure enough, she was shocked that this had never been recommended to me, and within a week I had an appointment with a physical therapist who would come to my house.  An occupational therapist would also be calling.

Since I wasn’t sure what goals each would arrange with me, I was a little dubious.  What kind of exercise plan should I be doing, given the reality that my disease is neurological and slowly progressing?  If I exercise to build muscle, won’t that just atrophy again when I can no longer move it?

But it’s now been a few weeks, and I’ve met and been assessed by both and am feeling cautiously optimistic. 

The first time she came, the physical therapist checked my vitals, then gave me a handout of simple exercises she wants me to do daily.  Lastly she asked me to climb our staircase with her so she could see how I was managing it.

She was very pleased that I was still able to make it, but she told me that I probably would need to have a stairlift installed eventually, and not to wait until then to research options.

Next, the occupational therapist came.  I wasn’t exactly sure what kinds of goals that therapist would make either.

But she took my vitals as well, and then we walked around the house where she made recommendations for simple household changes to make things easier and safer for me.

She had me sit at my desk to see the ergonomics, and then told me that it would be better if I had a worktable that was lower than my desk and tilted towards me, or even to hold my laptop on my lap. [Oh, that’s why they call it that!]

She suggested a shower chair, even though OH had already built corner seating in the walk-in shower.  She was concerned about me bathing without him when he was in the hospital, for example.

[The next day he found one at the end of the day of an estate sale, and got it for free!]

We talked about goals I might want to set.  I’d wanted to learn to write with my left hand for years since my right hand had become uncontrollable, and although I knew how to fall, I wanted to learn how to get back up.

I admit that the same arguments I’ve made about building muscle apply here, too.  And when I asked my new, new neurologist [my old, new neurologist left to get married] if I should bother, he said diplomatically, that since I’d already begun, I should try it for two months then decide.  If it made no difference, I could quit at that time.

But he also pointed out that it made sense to him to try to keep as flexible and mobile as possible if, for example, a cure was discovered in my lifetime.  So I’d be ready to take advantage of it.  He said “I’m just sayin’…”

So I’ll commit for a few months at least.  I’ll keep you posted.

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