The physical therapist weighs in

Just heard back from C.'s new physical therapist.

I had sent him video clips of her "walking", if you could call it that, with her left knee perpetually bent and her right one locked. It was a far cry from the desired performance.

Walking C last week

His recommended treatment: A two-week moratorium on that "walking". Instead we're to do brief sessions - ten minutes each, three times each day - of standing her, straightening the left and slightly bending the right knees while rocking her from side to side.

Of course, halting the walking for that long will be a torment for me. Seeing her upright and moving, even in so rudimentary a manner, always boosted my spirits somewhat.

But I'll try to obey these instructions - for the most part - and of course will keep you posted on results.

I'm definitely kicking the optimism habit

The MEDEK therapist works
with C.

It was with with indomitable optimism that I left the physiotherapist a week ago.

Now I'm usually overcome with that emotion whenever we try a new drug or treatment for C. And it can be a huge pain. Because when that something new doesn't live up to my fantastic expectations, I plunge headlong into despondence.

So it was with this therapy session. The method favored by this therapist is MEDEK, the same one we've been using at home with C.

When I brought C. to him nine years ago, he told us that she was too old and big for him to work with. But he and the Hubby bumped into each other recently, hit it off, and he then offered to give it a shot despite her age and size.

At the session, I showed him the sort of walking I've been doing with her. He advised me to replace it with an alternative. It's not strictly MEDEK but he felt it would suit C. better. (He said that even MEDEK's creator, Chilean Ramon Cueves, uses it occasionally).

Here he is (above) trying it out on C.

When C.'s caregiver and I also tried it out there, C. was quite cooperative. So you can understand why that optimism kicked in.

But at home, it was another story. She just refuses to straighten her left knee in advance of stepping with her right leg. I'm forced to straighten it myself which makes the whole exercise far more frustrating and exhausting than it should be.

Of course, it also means that C. is much further away from returning to stepping independently the way she used to about two years ago (pre-liver damage).

A great school - but not for the students

I gave a lift yesterday to a woman I recognized from C.'s "alma mater".

Of course, during the ride I asked her about the state of the school since C.'s graduation. It had switched, at that time, from a private to a government-run school so I was curious about the impact that ensued.

The woman raved about the change. When I pressed her for details, she cited "benefits and gifts to the staff" noting that. teacher's aides, for instance, now work only five instead of six day weeks and only until 2:30 pm.

All in all, she gushed, things are great.

Then I asked her how the administrative switch had affected the children. Were they receiving more therapies, for instance? (While C. was there, the number of therapies per week was piddling. At best, one half hour session per week of physical, occupational and speech therapies).

"No", she divulged readily. "They receive fewer therapies."

"But everybody seems pleased," she added. "I don't hear any parents complaining".

I choked, silently... This woman was unabashedly lavishing praise on the new administrators although the children were suffering.

And those children are entrusted to her care. Not very reassuring, right?

Thoughts anybody?

PS: We didn't manage to get to the neurologist this week as intended. But, for now, we aren't feeling the urgency since C. has grown weary of that mysterious vomiting and has even cut back on her central fevers. The Hubby plans to meet the neurologist next week to discuss strategies for reducing seizures. Yeah, I know, he'll go without C. since she's been thoroughly examined by the pediatrician just last week. Yeah, I know, we never seem to give up the futile fight.

That same old Sisyphean fight against the system

C. being evaluated for a new wheelchair in August 2017
(We're still waiting for it to be approved)

It's been six months since we lodged all the paperwork necessary to convince the health officials in our government to approve a new, subsidized wheelchair for my daughter, C.

In the meantime she continues to spend most of her waking hours in the ill-suited, uncomfortable wheelchair selected for us ten years ago by the "seating expert"/physical therapist in her school.

At our request, our current seating expert who works at a rehabilitative hospital and who specified the new wheelchair, inquired again about the delay. She wrote us that the government person said the requested treatment has been delayed "and they promised to hurry."

Now, even if a wheelchair were delivered to our door tomorrow, it couldn't count as "hurrying". Of course, we are bracing ourselves for a further interminable wait.

And after a two week phone pursuit, we finally landed the physical therapist from our health fund. He showed up last week and put C. through his routine of extremity stretches, advising us to do them with her every day. He said he would return in a month since we're only entitled to 12 sessions per year from the fund.

When the Hubby requested that he provide us with a recommendation for hydrotherapy for C., he poo-pooed its benefits since, after all, our child "doesn't live in the water".

That's the same response, verbatim, he gave us last year.

So once again, the Hubby patiently educated him about the phenomenal benefits our daughter derives from hydrotherapy. And once again, he agreed to recommend that the health fund allot her their maximum of 6 sessions.

That's per year! And note that the rules say we can't get any hydrotherapies via the health fund without his recommendation.

Yes, it is somewhat Kafkaesque trying to keep your severely disabled child at home rather than locking her away in an institution.

This is particularly true in a country as enamored with the institutionalization of people with disabilities as ours is.

The physiotherapist working with C.

I was shocked to learn this week that it admits representatives of our leading chain of large, closed institutions into our classrooms to "educate" pupils about disabilities. So we have our most impressionable population being taught that "inclusion" equals isolating people with disabilities from both families and communities.

Here is what the website of that chain says about its brainwashing program:

"We couldn’t be prouder of this program, which is the fulfillment of a dream for [us]. Working together with the Ministry of Education, we are educating towards change on a grand scale and seeing immediate results countrywide,” said its director and the brains behind the program. The benefit that he raved about was: "a noticeable spike in youth-led volunteerism and social activism initiatives."

My apoplexy peaked when I read that

"to increase this outreach program's geographic reach and professional depth, we have partnered with two non-profit organizations, both leading voices in the fight for disability rights in in this country."

Et tu advocates for the disabled? I have written to one of those non profits about this bizarre partnership and will share with you any response I receive. (Postscript: A day later, none)

Piling on the therapies and the Keppra

It's been a rough three days for C. with seizures up the wazoo, some accompanied by fever, others without. Up to eight major ones a day and many small ones involving only her eyes and mouth (too many to count).

THC didn't work its magic. Nor did Advil when there was a bit of fever so I finally raised the Keppra from 750mg twice a day to 200mg twice a day. The neurologist had advised doing that a few months ago but I put it off, hoping that raising her CBD dose would suffice.

The physiotherapist from our HMO came twice last week and is due for another visit today. He does the same sort of limb-stretching that the other one, hired privately, did only minus the white coat and the almond oil massage, and he does it for 15 minutes instead of one hour. Well, these sessions are totally free so some corner-cutting is to be expected.

C.'s spasticity has become rather serious so we'll also persevere with these stretches on our own throughout the day. So far, no results, though.

At this point, we're postponing starting a new drug recommended by the gastroenterologist to reduce spasticity. You know that cardinal rule: never introduce multiple new med variables simultaneously.

And, after a nine month hiatus, C. is having her first hydrotherapy session today.

I'm hoping she'll function as well, or nearly as well as she used to: floating on her back, kicking her legs slightly, scrupulously keeping her face out of the water. But I have a hunch that won't be the case. Stay tuned for her hydro "report card".

The snapshot above, slightly obscured to protect his privacy, is of our HMO physiotherapist at work with C.

Massage or physical therapy - you be the judge

I finally hired a physical therapist for C. It was the first time she had this therapy since she "graduated" school at the end of August 2016 - and was thrown to the dogs by the powers that be.

Since then her liver crisis and pressure sores consumed all our time and attention. Only now, with those issues resolved, could we focus on her less urgent needs.

I was surprised to discover that few physical therapists will travel to their patients, regardless of the remuneration. And since we aren't up to driving C. anywhere on a regular basis, we were down to one candidate who agreed to come here (she lives a five minute drive away).

The woman was French, nice and gentle with C. But she spent nearly the entire session oiling, massaging and stretching C.'s limbs. Now I'm sure there's no harm in that, and possibly huge benefits of some sort. But it's what I'd expect from a certified masseuse - not a physical therapist.

For the remainder of the hour, she listened to my summary of C.'s medical history and watched me demonstrate MEDEK-standing and describe the MEDEK-walking I used to do with C. in pre-liver-crisis times. (Surprisingly, she'd never heard of that superlative physical therapy method.)

I was impressed by how very calm C. looked and by her repeated "smiles" throughout the session. (Just to clarify: C. hasn't really smiled since her epilepsy struck 21 years ago. But she does stick out the tip of her tongue through the side of her mouth when she is happy and we've designated that her "smile".)

The therapist was confident that we'd see unspecified improvements in the coming week and urged me to call her with a report. But nothing resembling improvement eventuated. In fact for some reason, C.'s standing has worsened somewhat in the last three days. Not that I'm blaming the massage.

Still, desperate times require desperate measures. So with no alternatives around for now, I asked this one to come again. The second session was much like the first. This time, though, I observed more intently and photographed and videoed the routines so that C.'s caregiver and I will be able to do them daily.

But somehow this doesn't pass for physical therapy in my book and so I've resumed the hunt for another therapist who'll work at our place.

Have a look at the photos. What do you think?

The tightrope

I met with C.’s physical therapist yesterday after six weeks of repeated rescheduling. She’s only in the school three times a week which complicated things.

I had low expectations but was pleasantly surprised. She was highly complimentary of the work I have been doing with C. and of C.’s performance. She also had several excellent tips for modifying the exercises I do. She worked with my daughter some seven years ago for about a year. I was unimpressed.

But I must confess I was very uninvolved with the school program back then. I just immersed myself and C. in hours of Medek exercises at home under the guidance of a trained instructor whom we trekked to once every few months. I never shared what I was doing with the school staff. Nor did I solicit their input.

About two years ago, the Medek exercises, which had helped my daughter immensely, became impossible for me to continue. C. had grown too tall and I too old (mid-fifties). So I started doing easier walking exercises and retained only one authentic Medek walk (holding her right above the knees).

It’s not easy to maneuver that “staff-tightrope”: expressing my preferences and enlisting their help while nurturing a friendly relationship with them. They often have fragile egos and with the slightest hint of criticism you can evoke their resentment. Also, the staff in C.’s school have grown accustomed to parents who stay out of sight and mind. What a blessing for the therapists afflicted with burn-out or laziness. And, as we know, there’s no shortage of those.

This week, a mother of eleven was sentenced to four years in prison for abusing her children. She had been doing so with impunity for many years until one cold night, when she locked her mentally disabled son out of the house in shorts and a shirt. His cries finally prompted the neighbors to call the police. I remember reading, prior to sentencing, that several of the older children, now married, defended their mother by blaming her behavior on the birth of their disabled sibling. It made her lose her mind, they argued. So having a disabled child entitles a parent to torture others?

I was disappointed with the sentence. So was the woman’s lawyer but obviously not for the same reason.