What an inspiration!

I was watching CNN while ago and they happened to have a story about a camp in Georgia for kids with Tourette Syndrome. The driving force behind the camp was a man named Brad Cohen, who has TS himself. I googled his name and discovered that he is an award-winning elementary teacher who has written a book about his experiences growing up with TS and becoming "the teacher I never had." On his website he has the video of his appearance on Oprah. I was so moved by his story, and especially the video of the kids in his class and school at the end.

May all of our children be lucky enough to have at least one teacher like Mr. Cohen in their lives!

A new beginning?

Thank you, Mr. President, for reaching out to the Muslim world, for attempting to engage them in a dialogue and in common interests. In light of the President's speech in Cairo, this beautiful version of an old song seemed fitting for the day.

Please visit my new blog

I have decided to start a new blog called "Hands Up," which will be a venue to share activities for fine motor development. I hope you'll visit and, if you know anyone who might be interested, please let them know about it, too.

Memorial Day family camp at NSCD

We spent a long Memorial Day weekend at the Family Weekend Camp at the National Sport Center for the Disabled in Winter Park CO. I use the term "camp" loosely, since we stayed in a beautiful million dollar condo (my kind of camping!). We flew up to Denver on Friday and drove out to Winter Park, where we spent the first night at the Rocky Mountain Hostel and Inn.

Since it was the first night the hostel was open for the summer season, we had the whole place to ourselves! We had a restful night's sleep in a very nice private room and the next morning woke to find a fully stocked kitchen, where we cooked a tasty breakfast.

Then it was on to camp. After settling in to the condo, we took off for Monarch Lake to canoe.

After a picnic lunch, we unloaded the canoes and kayaks.

Marcus gets a quick lesson in paddling.

We paddled to the end of the lake in search of moose, but, alas, no moose were to be found.

Then it was back to the condo for the night. With only one other father and son participating, we had plenty of room to relax.

The next morning we got up early, ate breakfast, and drove through rugged country up the Colorado River to go white water rafting. Unfortunately, I have no photos of the white water, because I was too busy paddling and trying not to fall off the raft!

Marcus and Gabriel did their share of paddling.

We lucked out on the weather, until the last 10 minutes of the raft trip, when it poured a VERY cold rain. We were glad to get into some dry clothes and get back to the warmth of the condo.

The last day we went on a trail ride (unfortunately I don't have any pictures). It was the first time I've had the chance to ride through such spectacular surroundings. Then, alas, it was time to leave.

I am so glad we went on this trip. It was our first family vacation in 13 years, since I never could afford to take time from work. After my heart attack last summer and Gabriel's deterioration during the fall and winter, I felt an urgency to do something special with the boys, to give them some new experiences. The only downside of the trip was coming back home to Texas where the temperatures are in the 90s (groan).

Update: Ups and downs

Since I've been neglecting my blog for the last few months, I felt that I should give you all an update on Gabriel. When I last wrote about him in January, he had finally been hospitalized after all those months of being actively psychotic and non-functional. At that point the plan was to commit him to the state hospital. But once they had him back on Clozapine (the "gold standard" of antipsychotics), he rapidly improved. Within a week and a half, he was well enough that they were able to send him home from the local hospital. In fact, he's functioning quite well on half his previous dose. It's good to have him back.

On the downside, he spent last week in the hospital, because his blood glucose was sky high (875!). We've had to make considerable changes to our schedule and eating habits, and now he's on insulin injections, as well as oral medications. This crisis was a sobering one for me. I always worry about what will happen to Gabriel when I'm gone, and now this fear has increased exponentially. I know that if Gabriel doesn't have someone to care about him and supervise him closely, the path to life on the streets will be short, and that street life would be deadly for him, given his diabetes and his vulnerability.

I also feel what Martin Luther King called "the fierce urgency of now." I know that at some point Gabriel may not function as well as he does now, so I feel an urgent need to make his life as full as I can while he can enjoy it. So Marcus, Gabriel, and I are going to Colorado over Memorial Day weekend to a family camp at the National Sports Center for the Disabled in Winter Park. There are probably a lot of other things I should be spending my money on, but this urgency of now put the camp at the top of my priority list. Gabriel has never seen mountains and never been on an airplane, so I wanted him to have those experiences. In fact, we haven't taken a vacation in about 13 years. Now that I have the free time, I want to take the boys to see some new places and have some new experiences. We are very excited about the trip and I hope to post pictures and video when we get back.

The end of the line: expectations collide with reality

And so I’ve come to the end of the line…the end of my 30 year career as an occupational therapist. I’ve been put on long term disability and terminated from my job. After 30 years of lifting kids at work and at home, the pain from my degenerative disc disease and spinal stenosis is unbearable, and the doctors say I shouldn’t be putting any more stress on my spine. Barring some medical miracle, I doubt that I’ll ever be able to return to this kind of work.

I have to say that, at the end of the line, my expectations had a head-on collision with reality. This certainly wasn’t the way I saw my career ending. It’s not that I ever imagined myself as a supervisor or department head. That’s just not my cup of tea. I hate telling other people what to do…I’d rather do it myself. I am the first to admit that I lack the organizational skills to manage or supervise, and that I have an aversion to paperwork that borders on a phobia. What I always loved about my job was working directly with the kids and seeing the progress they made.

But what I did expect was that all those years of experience would count for something in the eyes of my bosses and colleagues. I was wrong. I didn’t see Gen X and Gen Y coming. I guess I had always assumed that I would be supervised by people who were my seniors or at least my contemporaries, people who had respect for the knowledge and experience I had gained over 30 years. But, no, Gen Y disdains experience, you see. In their eyes, it only makes you out of touch and outdated: a dinosaur. In their opinion, it is irrelevant that I was practicing OT before they were born. So what if I had treated kids with disorders that they had never even heard of? So what if I had personally raised 10 kids with disabilities? (They felt quite qualified to give patients’ parents directions on managing behavior, even though they didn’t have even one normal child of their own.) I must have appeared to have no ambition and did not constantly promote myself, and to them those are signs of inferiority.

And, so, in the final 5 years of my career, when I felt that I had earned a measure of respect, I came up empty handed. When I signed on with the company, I was offered a respectable hourly compensation, based on my extensive experience. It was downhill from there. I first realized which way the wind was blowing when I attended my first Christmas party, when they announced the winners of Therapist of the Year. I’m embarrassed to admit it now, but I actually thought I had a chance that first year. But as I saw all of the 20- and 30-somethings step up to receive their awards, I realized that my time had passed. In meeting after meeting, I heard therapists praised for the astronomical numbers of visits they made each week, and realized that, given my declining endurance and energy, I could never compete. While the parents of my patients were often complimentary of my work, as their children made impressive progress, those positive words were never repeated by the bosses.

And then the downward spiral began in earnest. Those of us who had been offered a higher rate due to our years of experience saw our pay cut by 11%. This was a tremendous blow to me, as it signified a lack of respect for my accomplishments. With the onset of my son’s schizophrenia and then my dad’s death, I struggled with profound depression, but tried to keep plugging away. I was floundering financially because I was never given an adequate number of patients, and then I found out another therapist (one of the self-promoters) who worked in the same area was making 50 visits a week, compared to my 12 or 14. Last June I was given a mediocre job performance evaluation, and I was devastated, as I felt it was an evaluation that would have been given to someone right out of school. I have no doubt that the stress of that evaluation contributed to my heart attack the next month. I got an inkling that my decision to discharge a patient was being second-guessed between another therapist and the manager behind my back. I was quite disappointed that the milestone of my 30 year anniversary of practicing OT passed without mention. And then, the coup de grace: I recommended discharging a patient and his mother called the office to question that decision. Did the case manager and district manager express confidence in my professional opinion? Did they stand up for me and tell the mother that I had more experience than any therapist on staff? Nope…they arranged for another therapist to provide a second opinion, as if I were a rookie therapist.

And so my life’s work comes to an unceremonious end. No retirement party, no testimonials, no gold watch, no nothing. Just an envelope of COBRA forms in the mail and a last trip to the office to turn in my electronic equipment. The words of T.S. Eliot keep going through my head:

This is the way the world ends
This is the way the world ends
This is the way the world ends
Not with a bang but a whimper.

But wait, I do have a testimonial. A few years ago I ran into a former student of mine, a young man with cerebral palsy. He was in first grade when I started working with him my second year of practicing OT, so he was in his mid-30s when I ran into him. When I told him who I was and that I was his OT in elementary school, he grinned and said, "I remember you. You taught me how to write and how to dress myself. You wanted me to be independent. My mother wanted me to be dependent, but you wanted me to be independent!" And that was better than any Therapist of the Year award.

This and that

I've been letting my blog slide lately, I'm afraid. I'm still writing a lot of articles on Helium. I'm really enjoying it, as I'm learning quite a bit as I research various topics. Plus, I have to admit, I'm kind of competetive, so I like watching my articles move up in ranking.

I've also been feeling down. Sometimes I feel so isolated, and it seems like even if I try to reconnect with old friends, I don't have any success. I think that in the past, when I was going through trying times with my kids, I was abrasive and alienated a lot of folks. Or, maybe we just drifted apart. Anyway, on a whim, I called an old friend and we talked a long time. We were catching up on some common acquaintances, and, in an off-hand way, she said something like, "oh, I think that was when Leslie's husband died." I couldn't believe my ears. Leslie and I had been pretty good friends in the past and I had known her husband back when he first came to the US from Croatia, but we had lost touch over the last 10 years. I deeply regretted the loss of our relationship.

And meanwhile, I've had several calls over the last month or two from an administrator at the center where my mother lives, reporting that my mother has been getting very angry and almost aggressive at times with other residents and the staff. I felt like I had been transported back in time to the days when I got all those phone calls from my kids' schools about their behavior! I called her doctor and he prescribed some medication, but it wasn't effective. So I did some research online and found that "inability to control anger and aggression" had been identified as a condition that occurs in 1/3 of people who have had strokes, especially those with left brain strokes and aphasia, like my mother. The recommended treatment was the use of an SSRI anti-depressant. So I called the doctor back, he prescribed an SSRI, and, thank goodness, it seems to be helping. I'm so relieved. I know that my mother is pretty isolated, due to her severe aphasia, and I would hate to think of her spending her last years isolated even more by being unpleasant to those around her. I think it would help her outlook if our family members would keep in touch with her, and I wrote everyone an email to encourage them call or write her, but no one but my brother in Houston has done so. I just don't understand...

Sometimes it seems as if some people have so many relationships, that some become expendable. But the folks tossed aside may lose their only connections.

Links to my Helium articles

I am still off of work on short-term disability due to my back problems. So I've had a lot of time to pursue some of my interests, including writing on the Helium website. I hadn't been active on the site for some time, so, alas, a lot of my articles lost ground in the rankings due to my inactivity. I thought I'd post links to a couple of my pieces that pertain to disabilities, as they might be of interest to some of my readers here.

Parenting a handicapped child (for those who prefer "people first" language, keep in mind that on this site, the title is already chosen for the suggested topic!)

Autism: Why and how to treat toe-walking

And, by the way, I earn a small pittance when people link in.

A glimmer of hope

I have often bemoaned the fact that, after so many years of parenting, I felt like a failure in so many ways. Foremost among those failures was the fact that so few of my children seem to have absorbed the values I hold dear. But every once in a while, there is a small glimmer of hope that maybe, just maybe, something stuck.

My son Jesse has been going over to my mother’s every couple of weeks to give her a haircut, which both she and I have greatly appreciated. But this week Jesse came up with an idea that really blew me away. He said he wanted to go over to see Grandma every week, just to visit, but he was trying to think of something they could do together. I have to say I worry a lot about my mother and the fact that she has so little to do during the day. Her vision is so limited that she can’t read nor does she watch TV; in fact she got rid of both TV s after my dad died. She won’t participate in any of the activities at the center, mostly because she doesn’t think she can due to her vision. She is totally intimidated by even the simplest technology, eg, turning on her radio or pushing a speed dial button on her phone, so listening to audio books isn’t an option. Her main pastime used to be talking with folks, but since her stroke, she can’t even do that.

So Jesse was trying to think of something they could do together. Finally he said, “I was thinking I could read to her.” We started considering what he might read, and I suggested that if he could find a novel set in Oklahoma during the Depression, she would enjoy that. So we came up with “Where the Red Fern Grows” and “Remnants of Glory” as two possibilities. I think my mother will be thrilled. She will enjoy Jesse’s company immensely. He was always special to her, and even during his turbulent youth, she never lost hope that he would “straighten up and fly right.” She is proud that he is so intelligent and was always such a precocious child with an amazing vocabulary, and that he was such a good reader. So she will undoubtedly love listening to him read.

I am so pleased that Jesse came up with this plan…maybe something did stick, after all!

Been there, done that

Blogging has become a wonderful tool for parents of disabled kids. While exploring Blogger, I have discovered so many fascinating blogs where parents celebrate their kids’ achievements, grieve their losses, support other parents on their journeys, vent their frustrations with the medical and educational establishments. They have created a network of support that spans the globe.

With my kids all grown up and mostly on their own, I admit to having a feeling of “been there, done that” at times. I remember my outrage at insensitive or condescending doctors. I remember the ache I felt when my kid was left out or teased. I remember my sweet sense of victory when I successfully fought to have my daughter with severe cerebral palsy educated in regular classes (the first time our school district had mainstreamed a student with such severe disabilities). I remember my pride at accomplishments, big and small.

I also remember that we had it a bit tougher back then, just one generation ago. Accessibility was not yet the law of the land. I had to bump my kids’ wheelchairs up and down stairs hundreds of times. I often had to leave my daughter’s wheelchair outside the tiny restroom stall and carry her in. Most children had never encountered a child with disabilities in those pre-inclusion days, so we endured so many stares and hurtful comments. For that matter, most adults had had limited exposure to disabled kids, and I often had to challenge their stereotypes as well.

But, when I start feeling smug or patting myself on the back for being such a pioneer, I catch myself. Over the last year or so, I made the acquaintance of a woman whose daughter is my age (56) and has cerebral palsy. We have spent a lot of time reminiscing about the 50s and I am struck by how nonchalantly she talks about raising a child with disabilities in that time. She mentions her daughter‘s stint in Girl Scouts: “Of course, I had to be the leader so she could participate.” She talks about signing her up for dance lessons. She tells me matter of factly how her daughter had to manage the stairs at school on her crutches. She recounts how her daughter was almost not allowed to graduate from high school because she couldn’t participate in PE (finally the family doctor, who was on the school board, intervened and got them to allow her to substitute another elective). And she proudly talks about how her daughter went off to college about 300 miles away, with an adaptive bike her dad had made for her to get around campus. I am really in awe of this woman, who, by her own account, was just a “country girl,” who assumed her daughter would have a normal life and made sure that happened in an era when it wasn’t easy.

So, when I read these blogs by parents who have only been on this journey one year, four years, or nine years, I may initially have that “been there, done that” feeling. I may feel somewhat smug or amused: “What? They think they’re discovering something new?” But then I pull myself up short. Yes, they are discovering something new…something that’s new for them. And it’s in the discovery that it becomes real for them.

If only...

For three or four months I have watched Gabriel get worse and worse. In October the psychiatrist at MHMR took him off clozapine, the medication that is the “gold standard” in treating schizophrenia. Within a week, I knew it had been a mistake.

I called MHMR many times, telling them with rising desperation that Gabriel was getting worse by the day. Sorry, I was told, the doctor is booked, the doctor got sent to another clinic on the day he was supposed to see her, the doctor is on vacation for 3 weeks. Meanwhile, the voices became unbearable, the hallucinations were frightening, he paced and laughed for hours on end.

I took him to the psychiatric ER five times. He told them he saw aliens who were trying to kill him (and that sometimes he thought I was an alien); they sent him home. He told them the voices were bothering him a lot; they increased one of his medications and sent him home. He told them he was scared because the mafia was trying to kill him; they put him in the hospital at his request, but discharged him a week later without changing his medication. He told them he sometimes thought about stabbing himself in the head to make the voices stop; they changed his medication, told me to hide the knives, and sent him home. He told them he saw assassins, the mafia, and Jesus; they admitted him to the hospital as a voluntary patient.

Yesterday I learned that they had gotten an Order of Protective Custody, ie, he had been committed. He says that the doctor told him he will probably be sent to the state hospital next week.

I am so angry! If only the doctors at MHMR or the ER had listened to us, if only they had tried to understand how bad things were, if only they had acted to get him back on track early on! We would have been spared months of pure hell AND Gabriel wouldn’t have regressed to the point that he has to be committed.

Reconciled

She was

Unseen.

She knew that the people she met

Simply looked right through her,

As if she were invisible.

She was

Unheard.

Her humor, ideas, opinions

Were met with blank faces, ignored.

Soon she alone listened to her inner voice.

She was

Unknown.

Her darkest fears, her dearest dreams,

Remained unspoken, held within,

Nourished in her secret garden.

Unseen,

Unheard,

Unknown…

Yet somehow she was reconciled to this existence:

Better to be unseen than to only see outer appearance,

Better to be unheard than to speak nothing of substance,

Better to be unknown than to be an open blank book.

Bush's note

So George W Bush left a note in his desk for President Obama. I wonder what it said????

1/20/09 The day we've been waiting for

Tomorrow's the day. We will finally wake up from the nightmare of George W. Bush's two terms to a new day. Unfortunately it will take many, many years, if not decades, for this country to recover from the damage this man has done to our country. In my opinion, he almost managed to do what Osama bin Laden couldn't: destroy this great nation.

I will be glued to the TV to watch the inauguration. I expect that the greatest highlight of the celebration will be President Obama's inaugural address. The second greatest highlight, at least for me, occurred yesterday at the inaugural concert, when Pete Seeger led the crowd in "This Land is Your Land." At age 89, Pete's voice has faltered a bit, but his spirit is as strong as ever.

Back in the hospital

I'll keep this short, since I did another all-nighter with Gabriel at the psych ER last night...seven hours. They admitted him and are apparently going to try to get him back on clozapine, which is the medication that he really needs. I'll keep you all posted.

One minute

I left my camera on this morning and this is just one minute of video it captured. You may find it annoying. You may find it disturbing. You may find it very sad. However it makes you feel, keep in mind that it is only one minute.

Now, multiply that feeling times 60 minutes per hour, up to 12 hours per day, for much of the last 4 months. This is what Gabriel and I have been enduring all that time.

According to the doctors at MHMR, the psychiatric ER, and the inpatient hospital, this is an acceptable outcome for Gabriel. Six months ago he spent his time talking with me, researching stocks, downloading music, playing basketball, going to the movies. No one should have to spend their life like this!

Please help Gabriel go to Johns Hopkins!

Dear Friends,

I am asking for help from everyone I know to help Gabriel get to Johns Hopkins for a psychiatric consultation. If you've been reading my blog, you know that things have been very bad for Gabriel for several months, with very little help from the doctors here. I talked with a psychiatrist at Johns Hopkins today and he felt that a consultation there would be helpful.

I am currently on short term disability again, due to back problems. After missing a lot of work due to my heart attack, my mother's stroke, and Gabriel's condition, money is pretty tight right now. So any help towards reaching our goal would be greatly appreciated.

Here's the link to our fund raising site http://www.fundable.com/groupactions/groupaction.2009-01-12.5144311663/groupaction_view?portal_status_message=Your%20changes%20have%20been%20saved.

To Gabriel

At the bottom of my desk drawer, tucked inside an envelope, is a small collection of my favorite photos of you. Looking at them, I can’t help but smile. What a little imp you were: exuberant, mischievous, curious, happy.

Today those times seem very far away or as if they belonged to someone else. It seared my soul to hear you say that you sometimes want to stab yourself in the head to make the voices stop. I feel so helpless, unable to silence the voices or chase the visions back into the shadows. I would give anything to give you some peace.

Another night at the ER

Maybe the psych ER should just reserve two chairs for Galen and Gabriel in the waiting room. Monday night we spent yet another night there. Gabriel came to my room about 11 PM and said he needed to go back to the ER because the voices were really bad. By this point, I have become the devil's advocate when it comes to seeking "help" there. Once again I reminded him that when he's gone there before, with exactly the same complaint, they haven't done anything. I suggested that he put on his headphones and listen to the radio to drown out the voices, as he usually does. He said he'd try. A few minutes later, he was back, again complaining that the voices were really bad. As I had heard the doctors ask so many times, I asked him what the voices were saying. "They say they're going to kill me...or that I should kill myself." OK, I knew we had to go.

At the ER, the waiting room was full of folks with very tired faces. Listening to the general conversation, I learned that some of these people had been waiting since 2:00 that afternoon. Sigh...I knew it was going to be a very long night. It was a pretty typical crowd. There were a couple of middle aged ladies with teary eyes, a young woman with her boyfriend, a teenaged boy with his mother who compared experiences in prison with another ex-con in the next seat, an intense young man, a homeless man who apparently had just come to get out of the cold rainy weather to sleep someplace warm. For a while we had to deal with an obnoxious woman who had come with her sister and somewhat elderly father, announcing with dramatic flourish that she had come to commit herself. When she wasn't granted immediate entrance to the exam area and was told to fill out the required registration forms, she started complaining loudly in a string of obscenities. "F-ing fill out f-ing forms? No wonder people f-ing jump off f-ing bridges!!" A staff person at the window told her that they'd get to her in a few minutes. So she went downstairs to smoke a cigarette and, when she returned, she was outraged that they didn't take her right back to the exam area, and her ranting escalated, with her family members hovering around her, trying to calm her down. Far from being sympathetic, I was getting more and more irritated. I'm not a psychitrist, but after all these years of living with my kids and dealing with lots of psychiatric disorders, she struck me not as someone who was suicidal, but as someone who had borderline personality disorder, who was there for one simple reason: the drama. She wanted to stir up her family and she wanted the attention. Sitting there, knowing the severity of Gabriel's problems, I was further irritated that she was demanding to be seen ahead of him and all these other folks who had been waiting up to 10 hours. I finally couldn't stand it any longer and spoke up: "You know, other people have problems, too, and some of these people have been waiting since 2:00." Oops. All eyes were riveted on me, and the woman instantly turned her wrath and her obscenities on a new target. I thought she might come barrelling across the room for me. After several minutes of verbal assault, she left with dramatic flourish, shortly before two security officers showed up.

The rest of the night was uneventful. Several folks finally stretched out on the floor to sleep while they waited for their name to be called. By the time they called Gabriel back to see the doc, it was 6:30 AM and we were the only ones left in the waiting room. The effete resident doctor sat aloofly at his desk, reading through the notes from Gabriel's hospitalization last week. He asked Gabriel about the voices. He asked Gabriel if he felt like hurting anyone else: no. He asked him if he felt like hurting himself. I was stunned and frightened by his answer: "Yes, sometimes I think about stabbing myself in the head with a knife to make the voices stop." Now, a couple of weeks ago, I would have been outraged that they didn't think Gabriel should be hospitalized as a danger to himself or others, but, knowing how worthless the latest hospital stay had been, even in terms of observing his behavior and mental state, not to mention adjusting his medication, I accepted the decision to send him home. I did convince the doctor to try Gabriel on a first generation antipsychotic medication, and, with prescription in hand, we left.

Fortunately, as of Monday, I'm off work on short term disability due to my back problems, so I can observe Gabriel on the new medication. As I write this, he's had 2 doses of this med that he is to take 3 times/day, and he was actually talking with me a bit last night. So there is a glimmer of hope...

The best health care in the world?

"Seven years ago, the World Health Organization made the first major effort to rank the health systems of 191 nations. France and Italy took the top two spots; the United States was a dismal 37th. More recently, the highly regarded Commonwealth Fund has pioneered in comparing the United States with other advanced nations through surveys of patients and doctors and analysis of other data. Its latest report, issued in May, ranked the United States last or next-to-last compared with five other nations — Australia, Canada, Germany, New Zealand and the United Kingdom — on most measures of performance, including quality of care and access to it. Other comparative studies also put the United States in a relatively bad light. "-New York Times, August 12, 2007

Many Americans suffer under the delusion that our medical care is the best in the world. Maybe they're equating "most expensive" with "best." Perhaps they're talking about the care the wealthiest, best insured among us receive. Most assuredly they're not talking about the uninsured, the folks on Medicaid, the folks with chronic physical or mental illness, the people who happen to live in states where human services are a low priority. Anecdotal evidence might not give a complete picture, but it's a telling part of the whole...

First, there's Gabriel's continuing sad story. I convinced the hospital not to discharge him on Tuesday, when they had done absolutely nothing for him. I asked the doctor directly, "What was the point of his being there, then, if you weren't going to try to adjust his medication?" I also pointed out that Gabriel himself had asked to be admitted (since doctors seem never to read the charts, I thought this fact might have eluded the doc). He agreed to start Gabriel back on Clozaril. But Friday he called to say Gabriel had not tolerated the drug due to a high heart rate, so he'd taken him off it and was discharging him on the same medications he had been on when he was admitted. I was SO frustrated. I asked him, "So what you're saying is that he will have no life, that he will never be functional again?" The doctor assumed a condescending tone of voice and began lecturing me: "He'll never be normal, he'll never be able to hold down a job..." With great exasperation, I replied, "I KNOW that...how about just being able to carry on a conversation, or do something besides pace and laugh all day?"

Well, I ranted in my car all the way to the hospital and was sinking into despair the rest of the day. Saturday morning I got online and started researching antipsychotic medications and alternatives to Clozaril. I made two important discoveries. Gabriel takes an injectable form of Risperadol and an oral medication called Invega. It turns out that basically they are the same medication! As one article on the oral med was titled, "Invega-Can You Say Patent Extender?" No wonder the combination of the two meds isn't helping much...it's just a huge dose of a single medication, packaged differently. The second thing I discovered was actually some information I had caught in passing on NPR a couple of years ago. The NIMH did a clinical study of the efficacy of different second generation antipsychotics, but at the insistence of some scientists on the study committee, one first generaton antipsychotic medication was included in the study. Now it is a common belief among psychiatrists that the second generation drugs are far superior to the first, but in this study, a moderate dose of the first generation drug was found to be every bit as effective as the newer (more expensive) ones. Plus the old drugs don't have the same serious metabolic side effects as the new ones (weight gain, diabetes, high cholesterol, etc). So why have the old drugs fallen out of favor? According to that NPR report a couple of years ago, it boiled down to the aggressive marketing by the drug companies.

Anyway, if you've managed to read through all of that, the point is that I'm going to ask his doctor to try him on one of the older drugs. He's never been on one before, so maybe he'll do just as well, or better, and might be able to lose some weight and get the diabetes under control.

Second anecdote concerns that pain I've had in my legs for at least 4 years that has severely limited my activities. I used to walk a couple of miles several days a week, even jogged part of the way. Then this pain began, getting so bad when I walk or stand that by the time I walk around the grocery store, my legs are killing me and are numb and I have this tightness in my hips like spasticity. Over the last 4 years, I've become less active out of necessity, gained a lot of weight, developed diabetes, and had that heart attack. Meanwhile, I've been telling every doctor I've seen about this pain, hoping that they would find out what's wrong and do something to help me. One doctor wrote it off as diabetic neuropathy. My current doctor tested my segmental blood pressure, to make sure it wasn't PAD. When it wasn't, she stopped listening to my complaints. Last spring, when I took the boys to the arts festival, the pain and tightness in my legs was so bad, I thought I wasn't going to get back to the car! So the next time I saw the doctor, I asked her if she would order an MRI. I had done enough reading online by then, that I was pretty sure I had spinal stenosis. I had the MRI (she still didn't get it, ordering it because of "back pain" and wanting to check for a disc problem). When I finally got a hold of the nurse for the results, she told me the MRI just showed "normal wear and tear." Shortly thereafter I had the heart attack, so I never followed up with the doctor about the MRI, until the last time I went in. I finally thought to ask her, "Are you sure that MRI didn't show any signs of spinal stenosis?" She checked my chart and said, "Yes, it showed moderate spinal stenosis." I wanted to cry. After suffering this pain for 4 years, not to mention seeing my activities so limited and my health deteriorating, I had finally been diagnosed and the diagnosis had simply been filed away!

So, I did more research and found that 3 years ago the FDA approved a new, minimally invasive procedure for this condition that has given a lot of people back their mobility and their lives. Tomorrow I have an appointment with an orthopedist who does the procedure and am fervently hoping that he thinks I am a good candidate for it.

My point is this: if we have the best health care in the world, why did no one listen to me all those years while my health deteriorated and why did I have to ask for the MRI and why was I told that I just had "normal wear and tear" and why did I have to find the possible solution online and refer myself to an orthopedist? To those who oppose any changes to our health care system, just remember, it might be working for you, but for many folks, it isn't working. Some people are driving a Lexus or Escalade, but many others are driving an old jalopy, others are riding the bus, and millions have to walk.