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If you were living in an ideal world with your most ideal healthcare, what would it consist of?

How would you relate with your primary care provider?

What would be your role in your heathcare?

How much time would be available to you to work with your careproviders?

What would the environment be like?


I invite you to dream huge when answering these questions. Do not aim for what you think is realistic. Aim for most perfect imaginable scenario.

Thanks you guys for your generous contribution to this. Each of your answers mean so much to me.

Z
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Wow, you guys! I have a week left before I have to start formatting my project. I would love a few more stories if you have it in you. They can be very short. They can be anecdotal. They cn be long, lighthearted, intense...whatever.

Z

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If you could give medical professionals to-be one important piece of advice to bring with them through their training and future practice - something they would never forget, what would it be?

Z

PS - And how are you doing today?
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Below represents a chronology of some of my experiences with medical professionals that reflect how their personal beliefs influenced their professional judgment.


1968 - I broke my neck fracturing the third and fourth cervical vertebrae causing long-term inflammation of my spinal cord resulting in quadriplegia.


1968 - When my temperature rose beyond 108° (that was as high as thermometers gauged at the time) Doctors told my parents "Duane will probably not live through the night and even if he did you wouldn't want him to because he will be ’a vegetable.’” (Upon hearing about what the doctors had said in the months following, I thought I wanted to be a tomato if I was going to be a vegetable. I later learned that tomatoes are a fruit not a vegetable.)


1968 - Doctors told me that the average lifespan for a high-level quadriplegic was about seven years but because my injury was higher than most that I can probably expect to live only five years.


1968 - Doctors told my parents they had two options for dealing with me. Either put me in a nursing home or a state institution. They said: “You have five other children and you should just forget you have a sixth. Putting him in an institution will allow you to focus your love and attention on your other five children."


1969 - When my parents took me to the state institution I had proud flesh growing out of one of the holes drilled into my head for traction tongs. Because proud flesh has exposed nerve endings it was very painful making it was very painful when anyone touched the proud flesh. My parents shared this information with the Nurses Aide who was attending to me upon my arrival. She said "Wait a minute" and returned with a straight edge razor and cut off the proud flesh. My parents looked on horrified as the blood ran down my head and neck forming a puddle in the nape of my neck.


1969 - Physical Therapists in the state institution would strap me on to a tilt table used to help a person adjust to being upright and to promote weight on their feet aiding circulation. For months they put me on the tilt table and my head would fall forward with my chin resting upon my chest. The physical therapist would tell me to hold my head up. When I told them I couldn't they said "Stop being so lazy." One day when talking to one of the doctors doing his residency at the institution I told him about this experience and explained that I was working as hard as I could to hold my head up but I just couldn't. He believed me and ordered x-rays of my neck that showed my vertebrae hadn't fused making it impossible for me to hold my head up without surgery to fuse the vertebrae. With the surgery fusing my vertebrae I was then able to hold my head up.


1969 - The state institution was viewed as a laboratory of sorts - they of course called it a "Teaching Hospital." Preparing me for my neck fusion required me to be and traction tongs for two months prior to surgery. The orthopedic surgeons had heard of some new tongs (Gardner-Wells cervical tongs) that they thought would be a better option than Crutchfield tongs. The new tongs required drilling holes into my skull just above my ears (lower temporal region). I was in pain for the two months prior to surgery because the Gardner-Wells tongs rubbed a sore on the top of my scalp. I told the doctors about my pain and they decided they should move the tongs up higher on my head. After drilling one hole into my skull above the existing hole they realized it would put too much pressure on my skull and could fracture it. So, they decided the new tongs didn't work and drilled two more holes into the top (upper temporal region) of my skull to use the Crutchfield tongs.







1970 - I was awakened at 2:30 a.m. in the morning while in a rehabilitation center to find the night nurse stroking my genitalia. Because at that time I used an indwelling catheter placed directly into my urethra, it was very painful to have an erection and have someone stroking it. I told the nurse to get the fuck away from me. She told the doctors about me swearing at her but of course left out the other details. The doctors threatened to send me home unless I apologized to the nurse. I was too embarrassed to tell them what had really happened and so I had to apologize to her with the head administrator of the hospital and the head nurse present. It was humiliating.


1970 - This is in an incident that didn't involve my medical care but it is a memory that has haunted me since it occurred. There was a guy named Mike who was a truck driver and his truck was hit by a freight train causing him significant brain trauma. Mike's brain trauma caused him to exhibit very violent behavior so he had to be strapped into his chair and his bed. It took for orderlies to restrain him enough to get him in and out of bed. After a few months, he was taken away and the orderlies told me he was having a lobotomy. He came back to our ward with the light in his eyes gone, his head hung down as he sat in his chair, and he drooled and showed no emotion.


Another young man named Steve came in a few months later after an accident involving his Mustang and a freight train. Steve exhibited the same behaviors like Mike did but after a few months the swelling in his brain subsided and he was no longer violent. I was furious with the doctors because I believed that they could have given Mike more time to let his brain heal.


Ongoing - there is a pervasive sentiment I encounter from physicians and other medical professionals that I should submit to the "sick role" they would assign to me. When I tell them that I work full-time and lead a rich and full life, the cognitive dissonance within them elevates to the point where it looks like their head is going to explode. Rather than coming up with therapeutic approaches that would maximize my health while allowing me to maintain the other important aspects of my life, they say that unless I stop working and dedicate myself full-time to therapy that I can't expect to achieve optimal health.


These represent a few situations and I'm sure there are a myriad of other instances that seem to be eluding me today. If I come up with others, I will write them to you at another time. I hope this is helpful.
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Tell me a story about a time you were at a crossroads. Did you have an important decision to make? Were you about to make a life change? What did you do?

Z
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Have you ever heard a story that has changed your views or beliefs? If so, what was it?

Z
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When I was born, it was hailed as a miracle. Three months early, I was put in the incubator for two months and then released to my parents with a heart monitor. The doctors mentioned 'possible developmental delay'. But aside from walking on my own a little late, things were going 'smoothly'. I got sent to a Shriner's clinic at 10 when my right foot started slapping the ground. I got poked and stretched, then sent home. I asked my dad what happened, and he said, 'Everything's negative' but would not tell me anything besides that. I was curious, but soon let it go and went back to being a kid, forgetting about the visit.

At 16, my mom mentioned that I had cerebral palsy. I started to connect the dots and realized maybe that was why I got picked last for sports teams, and preferred individually competitive sports to measure against my own best time. In grade school, I also remember being teased for walking differently and startling easily, but not knowing why. In high school, after many years of being active and trying my best to keep up with able-bodied people, with a roind of nasty shin splints I lost my interest in competitive sports. Instead, I buried my nose in books to find interest and meaning in my life. As a late teen, I noticed a slight tremor in my hands or a little limp on the right leg, but thankfully no pain or much noticeable spasticity at that point.

Fast forward to my mid twenties, still in denial. I could no longer do service work, due to increased fatigue and pain in my lower back, knees and feet. I chalked it up to 10 years of intensive, repetitive labor, often the only work that was available while going through undergraduate school. Before I got worn out, I worked as a coffee barista, book store clerk, cashier, housekeeper, and child care worker. Luckily, I was able to find some part-time gigs that involved translating, telephone work, peer counseling or tutoring. Over the years, marching over 100 miles in different protests as an activist certainly didn't help my condition either. But then again, I was still in denial until I hit a brick wall.

Increasingly troublesome bouts of spasticity, fatigue and arthritis began to affect me. I still did not connect this with cerebral palsy, since I was told at 16 that it 'never gets worse'. Finally, I did some research and found this to be true, but that people with CP still went through the aging process earlier.

I went to a national clinic for adults with CP. I was excited that they might know of others like me. They greeted me and said 'Oh, you look great!' because I was pleasant and could walk and stand for the brief periods required. After being poked and prodded, the paraphrased consensus was, 'You seem fine, there doesn't seem to be a much of a problem here.' I left pretty upset, feeling unheard. The same feeling of hopelessness reared its fearful head with a neurologist and another CP specialist local to the city where I lived at the time. One told me, "There's nothing we can do for now, come back when you get worse" and "Actually you are lucky compared to the more severe cases." Another said, "There must be a psychosomatic reason." I felt guilty and second-guessed myself, thinking "Well, maybe they are right. I am really stressed out. But what now?"

As the months wore on, it didn't matter if I was in a good, bad, or neutral mood. Soon, I could no longer stand for more than ten minutes, and often had noticeable spasms in the legs. One rehab specialist refused to sign off on my insurance for a wheelchair because she said I "would get too used to it" and wanted to 'wait and see' how I did in rehab before authorizing a wheelchair. I was baffled, wondering how I would be able to get to work or rehab during bad days. Because of this, I was unable to secure a wheelchair to fit my needs and lost my last part-time job as a counsellor.

Meanwhile, chatting with other adults and young people online who also has CP, I realised that I was not alone. I came out to my former GP with this diagnosis after he knew me for a few years, and he started to treat me differently, speaking louder sometimes or talking in a patronizing tone.

Now I finally found a practitioner who treats me with dignity, trust and respect. Even though she is still learning about CP, her proactive attitude in helping me access the services and resources I need makes all the difference in the world.

Doctors, I would ask them several things.

Please do significant research if you claim or are willing to know how to treat anyone with CP. Our problems are real, even though they begin neurologically, and cannot be wished away as a simple case of the blues or anxiety. Pain is real, whether or not we 'feel' good emotionally because of how the pain affects us. Please read your pubmed articles and neuro journals from other countries like Japan, Canada and Norway to find out that we have aging issues much earlier than the average population. Because of this, we need regular checkups to monitor potential secondary conditions, with specialists if necessary. Lung, eye, ENT, gastrointestinal, bladder/gyno, joint and neurological function may or may not be affected as we get older. But you should check anyway because chances are, changes will happen as we get older-- just like anyone else, except anywhere from 5-30 years earlier than the non-CP affected population.

Please work with us to find out what accomodations we might need *before* the office visit. You need to believe us when we say we need to acquire assistive devices, even if you can't tell easily. Comparing us to other patients will not help our situation, but rather serve to try keep us in denial to our physical detriment or become lost to the system out of frustration. Be our advocates with the insurance companies, and not mere gatekeepers, to improve the quality of life that we deserve. Remember that the labels 'mild', 'moderate' and 'severe' are often confusing as we could be diagnosed at one 'level of involvement' but might show characteristics of others as we get older. No label or outward appearance can pre-determine the level of pain, fatigue or mobility challenges that often face us, whether we are 17, 22, 30 or 45 years old.

Everyone who is affected with CP can be challenged with a variety of conditions in a unique way. This might make it a scary or frustrating prospect for a provider who would feel more comfortable curing or treating someone, then moving on. But if you trust us to be partners in our own care, we can help you learn more and become further empowered to help us. Just give us a chance to do so.

I hope that someday doctors will step up to the plate and become true advocates of the disabled and stop accepting freebies from the pharmaceutical companies. One of the most frustrating things is that many of the treatments that would help improve function and quality of life for people with CP (and many others with neurological conditions) are not covered by most insurance plans. This includes TENS units, acupuncture, myofacial massage, biofeedback, hydrotherapy, and more.

It would be great if you could encourage your local state, city or corporate insurance plan to consider these as viable options for your patients. Support national certification boards for alternative healing practices in their quest to be recognised with professional standards. With some research, there are many studies to be found that demonstrate effectiveness of these treatments in improving quality of life and function for many neurological conditions, including CP. As you are probably aware, pills often come with their own side effects, long-term physical/cognitive complications, and risks for intolerance/addiction. Surely you are concerned about these and would be interested in finding healthier alternatives to help patients live full, active lives. Take that risk and become an activist at the local and/or national levels. Your clients will thank you for it!

Signed,

Nik L
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What was the last compliment someone gave you?

Z
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Do you have a story about a time when you felt really great about your medical care? A time where a doctor or care-provider really listened and empathized with you?

Z
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Hi all. I thought I would post a quick "hello" to the group.

My name is Jen. I live in Massachusetts.

I have severe ADHD, bipolar disorder, panic/anxiety disorder, and some OCD tendencies. I was originally diagnosed with just depression about 12 years ago. My psychiatrist refused to believe that there was anything wrong with me above and beyond a little depression. I started out on Zoloft, which had some nasty side effects, so I ended up going through a year or so of "human guinea pig" trials. Over time, I have tried just about every anti-depressant out there. I've had mild to horrible side effects including massive weight gain (which really helps someone who is already really depressed). We finally settled on Wellbutrin, which seemed to help, although I was still experiencing severe symptoms that weren't being helped by the Wellbutrin and still my doctor refused to even consider that there was something more wrong with me.

After 7 years of being basically mis-diagnosed and 7 years of med trials and tribulations, I moved out of the city and decided to find a new psych doctor. By chance, I stumbled upon a clinical nurse practitioner that specializes in ADD/ADHD. After talking to me and having me fill out some questionaires, she believed that I had severe ADHD with co-morbid bipolar disorder and panic/anxiety disorder. She started me on Adderall and had me take some cognitive tests. I scored HORRENDOUSLY on the cognitive tests. The letter I got from the Psychiatrist that interpreted my results basically said that I shouldn't even be functioning on a daily basis. While I don't think things were quite THAT severe, I certainly wasn't functioning very well.

Once I started on the Adderall and Ritalin and got the bipolar disorder and panic/anxiety disorder under better control, I felt like an entirely different person. My psych doc also referred me to an optometrist that tested me for convergence insufficiency. After I was diagnosed with the convergence insufficiency and started eye therapy, I felt even more like a different person. I had been seeing double on and off and had other eye problems for as long as I could remember and I just assumed they were normal. I had no idea that my eyes were contributing to the severe ADHD. Between the eye therapy and the new meds, I felt better than I had felt in years and years and years. I still had some ups and downs and went through more med trials, but I have been on the same meds for about a year and a half now with great stability. I even survived the death of my mother a few months ago without falling into a deep, severe depressive state (not to say that I wasn't upset and depressed, but it wasn't debilitating). My psych doc isn't perfect, but she's made a significant difference in my life, especially after 7 years of mis-diagnosis.
Current Location:
Work
Current Mood:
awake
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