When Therapy Runs Out

We have almost exhausted my father’s allotment of therapy for his stroke. Will supplemental insurance make a difference? For now he is seeing an acpuncturist twice a week.

Sometimes it feels like we are going in circles.

In order to get better after his most recent stroke, my father needed therapy. He could only tolerate so much therapy when we started. And then when he could tolerate more, and was starting to make progress, we had to decide how much therapy and which therapy to keep.

As you may have guessed, Medicare will only provide a certain amount of money for therapy. To complicate matters, speech and physical therapy funds come from the same bucket. And speech and physical therapy are what he needed the most.

We have already seen a difference in how easily he is able to sit up once he is moved from a wheelchair to a bed at therapy. When he was attending weekly, not surprisingly, it was easier for him.

If he needs therapy to get better, goes to therapy, then tolerates more therapy and makes progress, but then has to stop, how will he get better?

If he needs therapy to get better, goes to therapy, then tolerates more therapy and makes progress, but then has to stop, how will he get better?

I have looked into supplemental Medicare plans, but that will not help his current situation and get him addditional therapy.

A family member might be able to add him to his insurance, but that might not happen until next year. Which means my father, who is still making an effort to get better, will go half a year without therapy.

I asked what it costs to pay out of pocket for therapy, and it is not cheap.

The good news is he makes progress with mental stimulation exercises, particularly math and multiplication tables. He is now up to the “6” times tables and one of the activities persons at the skilled nursing facilty is supposed to review them with him (in addition to being mentally sitmulating, it is something he enjoys). For some reason his mind remembers addition and subtraction easily, but multiplication has become a challenge.

He continues to move his left arm slightly during occupational therapy exercises. The left side of his body was paralyzed whe he had his stroke last March.

And he recenlty moved his left thumb.

While these are all minor improvements, they are still cause for celebrating. I remind him that each small improvement will lead to more, and the more he is able to move, the easier it will become.

Acupuncture is going well, and his traditional Chinese acpuncturist immediately recommended herbs that have helped with his circulation. His skin color looks healthier, he is more alert and he is holding his head up better.

He is now tolerating twice-a-week appointments.

It is slightly easier for him to close his mouth, which is important for swallowing. Swallowing is still difficult, but when he closes his mouth and then “chews”, it is a little easier for him to swallow. But oftentimes he must be prompted verbally to do so, and sometimes verbally as well as physically (tactile sensation on his chin and tongue are usually the triggers to get him to swallow).

It is slightly easier for him to close his mouth, which is important for swallowing. Swallowing is still difficult, but when he closes his mouth and then “chews”, it is a little easier for him to swallow. But he must be prompted verbally to do so, and sometimes physically and verbally (tactile sensation on his chin and tongue are usually the triggers to get him to swallow).

We have our light moments.

My significant other, who is fluent in Mandarin, taught me to say, “I speak a little Chinese.”

Like an eager tourist, I tried out my Mandarin on a native speaker. My father listened, and then he started to laugh. I asked if my Chinese was OK — I wasn’t sure if he knew it was Chinese — and he nodded. Then I asked him to tell me if it was good (thumbs up), so-so (rotating hand side to side), or bad (thumbs down).

He graciously said it was so-so.

It reminded me of the time I called him several years ago to tell him I was taking a Mandarin class. He said to tell him something in Mandarin. I did. But he had trouble understanding me, so I repeated it a few times.  Then he said to just tell him in English.

His acupuncturist helps me translate and speaks a few words of Spanish to me sometimes because she knows I am part Mexican. A few times she has teased him, in Mandarin, for not teaching me to speak his language.

 

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My father, at acupuncture last week. Electric pulses course through some of his nerves when small clips at the end of the different colored cables attach to some of the needles in his face and body. Acupuncture has helped his paralyzed side move a little, improved his flexibility, and given him more energy and strength to participate in physical and occupational therapy. By being better able to participate in therapy, he has gotten stronger, and able to sit with little or no assistance at times.

 

And at a recent acupuncture visit he moved his left arm. He lifted it when I asked. It was a very natural movement, immediate and deliberate. For a second or two I forgot the left arm has not moved since the stroke last year. Then the realization hit me.

“Hun hao (very good),” I exclaimed. “You raised your arm, that’s great!”

And at a recent acupuncture visit he moved his left arm. He lifted it when I asked. It was a very natural movement, immediate and deliberate. For a second or two I forgot the left arm has not moved since the stroke last year. Then the realization hit me.

He could only do it once, and knows whether he can or cannot move it. It fascinates me to hear his occupational therapist ask him in Mandarin if he can move his arm or if he can move it again after an exercise. He answers honestly, and immediately.

Our trips to USC Keck Medical Center for outpatient rehab have become less frequent for the moment, which is why I increased his acupuncture treatments. It seems to me it is a little easier for him to close his mouth, and I wanted to get his feedback. So I asked.

Google translated for me and when I played the question for him in Mandarin, he listened. Then he nodded.

 

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Google translated my question to my father into Mandarin, and then I played the translation for him to hear. My father has shared with me that my Mandarin is so-so (which is generous of him) and I translate and play back questions or phrases whenever possible.

 

This might sound like a simple question. Or an odd question. But for a person recovering from a massive stroke — who cannot eat and has difficulty swallowing, closing his mouth and being able to keep it closed, and command the muscles to obey and move and swallow — the ability to answer that question affirmatively is quite a feat.

Practice makes it easier. And having someone help him practice when he is not at USC for therapy, or with his acupuncturist or with me, is a challenge. We will soon see if with some additional training the staff at the skilled nursing facillity will be up to the challenge of helping him perform some basic exercises to trigger a swallow.

 

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I recently provided this list of common words the staff at the skilled nursing facility can use with my dad. At least one nurse expressed interested in learning Mandarin when I mentioned during a training session I translate words to Mandarin to make it easier for him to understand what I am asking. 

 

He is scheduled for a visit with my acupuncturist later in July. Some readers of this blog may recall I had a complicated ankle injury that involved damaged nerves, a sprain and a minor fracture. I had difficulty moving my toes, could not move my foot to the left and was on crutches for half the year.

My official diagnosis was Chronic Regional Pain Syndrome (CRPS) which in severe cases make life extremely painful and dibilitating. Not to say that my time on crutches was a pleasure. I rarely take medication, I prefer the natural route. But the pain was so severe at times I had to take pain meds, and then suffered the side effects.

The CRPS was causing false pain messages to be sent to my brain and with physical therapy and acupuncture, I was eventually able to walk and run again. My acupuncturist essentially “rewired” me so that messages would no longer travel on the paths that were sending the pain message to my brain.

I am curious how this will help my father after a stroke. I know that it will, that has already been made clear. But with her particular bag of tricks, things will get very interesting.

 

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My father, after an acupuncture treatment. 

A Stroke, and Both Our Worlds Are Changed

My father still has difficulty holding his head up, among a laundry list of other ailments. While he has made progress, it is his continued inability to swallow, and speak, that has me worried. But I also wonder if seven months after the stroke, he has tired of fighting.

In March, my father had another stroke.

Stubborn by nature, he had not checked in with his primary care doctor for almost a year leading up to the stroke and had not been taking his heart and high blood pressure medication regularly. He had some difficulty walking, and a fall from late 2013 still affected him. But he lived independently.

I remember the day, it was last year, when he told me his ex-wife passed away. I later learned it was around the time he stopped taking his medication. Apparently, he knew her when they were young, in Shanghai, and I think she was the love of his life.

He was calm and clear about how it happened, he showed no emotion, but talked in a soft tone. I almost cried, and wanted to embrace him, but hugging is not something my father and I did regularly. That may sound harsh and cold. And he was.

For most of my life, until I graduated from college and began working my way into a jounalism career, I did not speak with my father often. It was easier not to. Eventually, the rage and disappointment gave way to acceptance and forgiveness. There were occasional lunches and dinners before the stroke. But ours is still a complicated relationship.

Since March, I have debated if I should share what has been happening with him, and by extension, with me, and my past. And my family’s past. There is much we have not said to each other about a difficult upbringing that included frequent fights between my parents and a divorce after he left our home to live with another woman.

I know we wasted an enormous amount of time blaming and ignoring him. Of course, I understand I cannot change the past, but I am keenly aware of the hurt that lingers. I feel as if I have been keeping a secret, and now, I am letting some of you in on it.

Since March, I have debated if I should share what has been happening with him, and by extension, with me, and my past. And my family’s past. There is much we have not said to each other about a difficult upbringing that included frequent fights between my parents and a divorce after he left our home to live with another woman.

Writing is usually therapeutic, but it also means experiencing the hurt all over again. I have started and stopped various drafts about my experience with hospital and nursing facility staff; about researching different types of strokes, nursing homes and about recovery from a stroke; and possible places for him to receive electrical stimulation on his throat to help him swallow and possibly, speak again.

He has not uttered a word since March. It is ironic, given how much he yelled and enforced his will verbally when we were growing up.

My father is Chinese, hence my last name, which means “heart” and has a silent “H”; my mother is Mexican. They came to the U.S. in the late 60s, if I’m not mistaken, met in Los Angeles and married in the early 70s.

It was made clear to me by both parents that my gender meant there were certain things I could and could not do, despite having really good grades and being a pretty responsible kid. My father was stern and demanding, and he was the undisputed head of the household. Unlike many of my Latino friends’ fathers growing up, he cooked, often.

He also constantly tinkered with the old cars that sat in our driveway. I like driving through the city and enjoy road trips, probably because of the many Sundays we spent travelling to what seemed like distant cities in his 1963, banged up, white Chevy Impala.

I enjoy shopping for groceries in downtown L.A.’s Chinatown because we spent so much time dining and buying the proper ingredients for dinner there. I am independent and stubborn, like him. But he did not teach us his language, and I will likely forever be an outsider in that world. I do speak Spanish, quite well, and can still have a simple conversation in French.

All of this played in my head as there was a point after the stroke when the doctors did not think my father would make it. I decided to traverse the city to see him, and thought about the countless times we drove down Wilshire Boulevard.

I now lived walking distance from this major street. It was my route to the subway, and the first part of my journey to his bedside. I hopped on the subway from my Koreatown apartment and transferred to a bus that would take me from downtown L.A. to the hospital in Alhambra.

Driving there, without traffic, would take about 30 minutes.

But that was not a drive I wanted to make on my scooter.

I now lived walking distance from this major street. It was my route to the subway, and the first part of my journey to his bedside. I hopped on the subway from my Koreatown apartment and transferred to a bus that would take me from downtown L.A. to the hospital in Alhambra.

I felt I needed to tell him that I forgave him, and that I would help him if he wanted me to. I started writing a story on the bus, on my phone, and I remember passing one of his favorite restaurants at Garvey Avenue and Atlantic Boulevard in Monterey Park.

By the time I got to the hospital, my nose was puffy and my eyes were red. My father opened his eyes when I called to him, and once the nurse left the room, I began to say what I wanted to say. He began to shake, and his face contorted, but I don’t think he made any noise. Tears began to stream down his face. He was crying.

I was relieved he could understand, but then I felt badly for upsetting him. I took him by the hand and told him it was OK, that there was still time, including time for him to teach me Mandarin. (I studied Mandarin for a semester and I barely passed. My pronunciation is apparently horrible. When I called my dad one day to tell him I was taking the class, I said something to him in Mandarin and he asked me to repeat it. After a few more attempts and he still couldn’t understand what I was saying, he said I should just tell him in English.) I also told him that it was up to him, and how much effort he was willing to put into his recovery.

The last week has been pretty difficult, for me and for him, as he had just returned from an 11-day hospital stay due to pneumonia. It’s likely his own saliva went down the wrong pipe and into his lungs. He was receiving great care at Glendale Adventist Hospital, and the speech therapist there was using electrical stimulation on his throat.

After some initial frustration, and a visit by me during a session with his therapist, my father began to swallow various types of liquids and gooey substances. He would need several months of this before we would see real progress, but because his pneumonia was on the mend and his lungs were clear, he was discharged back to the nursing facility.

I don’t have any real complaints about the care at the nursing facility, but unfortunately, they do not offer vital stimulation for his throat during speech therapy.

I’ve spent almost a week looking into how to make this happen for him off site. Insurance is never easy, but I was able to speak with a live person after several messages and being routed to various departments, and she will let me know how and if therapy away from the nursing facility will happen. (If you’re curious, this is the link for what I’m looking into).

My emotional state was already shaky, and I was looking forward to attending the first-ever Laguna Film Festival in Orange County. The first short documentary, called “Alzheimer’s: A Love Story,” broke my heart into even more pieces. The film opens with two men, one sitting in a wheelchair with a homemade birthday cake in his lap that the other man is holding. The man’s head droops forward as he sits in the wheelchair. The other man is trying to get him to sing or blow out the candle. We later learn the man in the wheelchair is in a special treatment facility for Alzheimer’s Disease and the other man is his partner of more than 40 years.

The man in the wheelchair immediately reminded me of my father.

My father still has difficulty holding his head up, among a laundry list of other ailments. A tube connects to his stomach from a machine that feeds him liquid nutrients. I was told early on that one of the most important things in recovery is a person’s ability to eat solid food again.

While he has made progress, it is his continued inability to swallow, and speak, that has me worried. He remains at a high risk for pneumonia because he still cannot swallow. I also wonder if seven months after the stroke, he has tired of fighting.

While he has made progress, it is his continued inability to swallow, and speak, that has me worried. He remains at a high risk for pneumonia because he still cannot swallow. I also wonder if seven months after the stroke, he has tired of fighting.

I can only wonder what thoughts are locked inside his head. While he can nod or blink his eyes for “yes,” and shake his head for “no,” he often refuses to answer. He will simply stare back when you ask him a question or look away. I have attempted to have him spell out words to me, but most of the time he has refused.

At the hospital, he did hold a pen and attempt to spell “yes,” but he lacks control. I was going to see if he could touch the screen on my tablet to spell during my last visit, but he was too tired to wake from his sleep. Apparently, he had been rather active the day before, and it was the same week he returned from the hospital.

Tomorrow my father has an acupuncture appointment, and electrical stimulation is now part of his physical therapy. That therapist will be using electrical stimulation on his shoulders and neck, to help him with head control, and by extension, possibly with swallowing. Cross your fingers.

The couple on the left in the photo are my godparents. My parents stand next to them, and my father is on the right.

Am I crazy, or is this business as usual for Aetna and the medical group?

Hello boys and girls. 

It’s almost Halloween, which must be the reason Aetna and Angeles IPA, the medical group that my former doctor belonged to, are acting crazy. 

And by crazy I mean doing what they do to make money and not care for patients. 

Is this what the resistance to affordable health care for everyone comes down to? Fear of the loss of the status quo? 

As you may recall, I was on crutches for almost six months. It took a fight with Aetna and Angeles, meaning tons of calls, emails, a formal appeal, and lots of waiting, to find out that no, an MRI would not be authorized. Despite the fact that X-rays revealed nothing that would explain why I couldn’t walk months after what was supposedly only a routine ankle sprain. Despite the fact that I had limited control of my toes, and had a visible bruise near my toes. Despite the fact that I had so much pain in my foot that I could not bear weight on it. 

A second opinion doctor would go on to say that I needed more than an MRI to determine what was wrong. Indeed, two visits to a neurologist, another orthopedic surgeon, a bone scan, and a pain management doctor would reveal the reason my foot was turning blue. I had nerve damage, which was causing poor circulation, in addition to a minor fracture and partial tendon tear. 

Aetna then tells me they will reimburse me for the MRI I had done out of pocket. I decided to pay for an MRI before I saw the second opinion doctor as I felt the insurance company and the medical group were not going to help me. And I needed answers. Did I mention my foot was turning blue?

Now, more than 90 days after I submitted all my paperwork to Aetna for a reimbursement, they tell me I will not be reimbursed in full. Since Aetna decided to retroactively approve the MRI, my plan calls for a $100 co-pay for that procedure. Therefore, boys and girls, $100 will be deducted from what I paid out of pocket. 

My response: Aetna and Angeles, you’re full of it. 

You deny the procedure, and in the meantime, my ankle and foot weren’t getting any better. Each doctor I went to after I switched physicians and medical groups wondered why various procedures and tests were not done sooner if the X-rays didn’t provide enough information. 

That, boys and girls, is a great question. Perhaps it is something Aetna and Angeles would like to answer in court. 

This is the last straw. I have been more than patient.

I told Aetna I expect a full reimbursement. 

Aetna says my plan’s co-pay applies and they’re sorry no one told me the $100 would be deducted from my reimbursement. They also said I should contact the medical group, to see if there is anything the medical group can do for me.

Passing the buck so soon, Aetna? 

Oh, for the love of Aetna

Thank God, Allah, Buddha and La virgen the Paris Baguette bakery is nearby.
Thank God, Allah, Buddha and La Virgen the
Paris Baguette bakery is nearby to help me through trying times.

Today, boys and girls, we’re going to hear about a physician assistant at an orthopedic hospital who lacks bedside manners. We’re also going to hear about the continued frustrations as a certain someone navigates the health care system, hoping to find an answer for why she still cannot walk, two months after her injury occurred.

For those of you following along, you may remember I had an appointment scheduled at the orthopedic hospital today. The first appointment I could get was with a physician assistant (PA), which was a little more than two weeks after the referral was authorized by Aetna. I decided to take it, thinking the sooner I got to the specialist, the sooner I would have an answer about this ankle of mine.

I guess insurance companies don’t work on logic.

The PA said we’d have to try a variety of things before the insurance company would authorize an MRI. As I stared back at her and noticed how much make up she was wearing, I wondered if I was really hearing this woman correctly. After an xray of my foot (not the ankle) revealed there is nothing broken or fractured there, the PA offered me a cortisone shot. For the pain, she added, after my mouth fell open.

“No offense, but I’m not interested in just dulling the pain,” I responded. “I would like to know why I cannot walk. It’s been two months since this happened, and I’ve been on crutches for two months. Do you see my wrist?” I held up my bandaged wrist, which is hurting as I type.

“My arm and wrist, and entire body hurt. From the crutches. Because I cannot walk. So I would like an MRI. Don’t you think that if my ankle isn’t broken or fractured, I need an MRI to figure out what is going on?”

The PA bows her head, like I’ve hit her across the forehead with my crutches, and takes a deep breath.

“It’s not me,” she said.

Apparently, the insurance company will likely not authorize an MRI at this point, in her experience. They will want to wait six weeks to see how the physical therapy goes and if there is any improvement or change. She says requesting the MRI now could just be a waste of time.

A waste of time? I’ve already spent two months on crutches. Waiting. Initially, I was waiting for my insurance application to be authorized. Then for referrals and more authorizations to specialists, who all seem to be quite busy. When I get in a visit to my primary care physician, he seems to smile and nod a lot and say, “Hang in there.”

And what exactly is physical therapy going to involve on my ankle if they aren’t even sure what’s wrong with it?

I’m glad we ruled out the possibility of any broken bones in my foot.

But why is there still a bruise near my toes? And why can’t I stand for more than a few seconds without any pain, let alone walk? Why do I still have pain in my ankle when the PA touches it. (Initially, I thought she was just squeezing it really hard. But when she touched the left ankle the same way, we both realized there is still pain there. I guess I’m just getting used to the constant ache.)

To wrap up our conversation, the PA mutters something about the bruised tendons that will eventually heal and how I should check in after six weeks. I’ll get a call in two weeks about physical therapy and if the MRI was approved.

Oh, there is one other thing I could do if I want the MRI now, the PA said.

I could pay for it.

The $3,000-$5,000 it would cost if I paid for it out of pocket.

“Yeah, sure,” I say.

And for the pain in my wrist and arm, I have to go back to my primary care physician so he can request another referral for the orthopedic hospital to see me about my arm and wrist. Then, maybe, I will get physical therapy for the rest of my body.

I’m guessing that if other patients are getting the same run around, that $10 co-pay starts to add up.

To help me through my frustration, I picked up some pastries from the Paris Baguette down the street from my place.

I did get a nice ankle brace out of today’s visit. I can wear two matching socks again. For the uninitiated, with an ankle wrap/bandage, you need to find a loose sock to wear over it. Your other foot can still wear a normal sock. But I’d rather have an MRI than a new ankle brace any day.

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The Crutches Chronicles – Chapter 10, or is it 20?

splint

The latest chapter in the Crutches Chronicles has our protagonist waiting oh-so-impatiently for her appointment at an orthopedic hospital. It seems it has taken ages to get to this point: she might just be getting an MRI done on her ankle next Monday.

OK, not ages.

Just two months.

After waiting for my employer’s health insurance plan to kick in (which should have happened in February, but what’s a few months?); explaining the situation to my newly appointed primary care physician (PCP for short); two trips to the urgent care facility for a CD of the X-rays of my foot over two days, and two calls to the urgent care facility to ensure my records were indeed sent to my PCP; a week’s wait for authorization for a referral to the orthopedic hospital; and a two-week wait for an appointment with a Physician’s Assistant, or PA, at the orthopedic hospital, I will finally see a specialist about the ankle.

And, and, it is possible I could have an MRI done the SAME DAY, according to the paperwork I received. Wow. Not have to go back to the insurance company for authorization and then wait for another appointment? Oh my God, Becky!

The ankle is not broken and not fractured, but still, I cannot walk or put pressure on it. A bruise is still visible where my toes connect to my foot. It is an effort, still, to wiggle my toes. The calluses on my hands have healed thanks to the wristbands I put on the crutches, which I may need to pad with another set, but I still have rough spots on each palm. As I mentioned, my left arm is still hurting a bit, and my left wrist hurts, especially when I type. Which is never, right?

A trip to Good Samaritan Hospital’s ER was needed last Wednesday due to the pain associated with the fall days before. The pain was mostly in the left arm, but the good doctor decided a splint would be needed for a few days to hold the ankle in place, and perhaps start the healing process.

It felt better having a splint on the ankle than just the beige ankle wrap, which unfortunately I cannot locate at this moment. I am now without a splint and while my foot is lighter, it feels more vulnerable.

Physical therapy is likely part of the plan going forward. But that will not be known until next Monday.

Hopefully I will have an answer for people who ask, “How much longer are you going to be on crutches?” Some people don’t see the humor in the answer, “What crutches?”