Living with chronic disorders


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A few weeks ago, I submitted an opinion in response to someone who wrote about his lack of help for schizophrenia. It made me realize, even after working with the patients and gamut of brain disorders, paranoid schizophrenia is likely the hardest and most misunderstood to diagnose and treat. To get a glimmer of what this does to parents of an adult schizophrenic child, I urge you to read Peter Earley’s book, Crazy: A Father’s Search Through America’s Mental Health Madness.

This book deals with personal and legal issues for these parents and offspring, with a focus on how it is to help a psychotic child who thinks nothing is wrong, along with the poorly interpreted laws about care these patients. Factor in the incredible costs for psychotropic drugs and treatment, and people go untreated.

With indigent victims, doctors often use the cheapest drug available, such as Haldol. More harm than help can be the outcome. Newer drugs, Clozaril, Zyprexa, Risperdal, and Abilify, etc., control symptoms better, are costly, and are rife with rotten side effects. Caregivers, parents, and friends have to be well-informed about these drugs and their effects on patients. One effect, for example, is obesity, because patients always feel hungry, desire unhealthy foods, and are lethargic, putting them at high risk for becoming diabetic and/or obese, suffering liver function abnormalities, etc.

Adhering to a drug regimen is extremely difficult, and most of us don’t have a clue!

The few number of psych beds available also add to the difficulty. When a bed is urgently needed, there will likely be none available, because the public hasn’t demanded it and governments still make cuts to this pressing need. Every citizen needs to become aware and let our legislators know about the unfortunate segment of sick people who are let down. I care deeply about mentally and emotionally ill folks because of my nursing work and having friends with mental disorders. Think of the awful use of incarceration of mentally ill people, instead of adequate therapies. Plus, incarceration is far more costly than good treatment in a supervised setting. Another personal interest is because of a dear cousin committed suicide because of inappropriate treatment for bipolar disorder. I also have a good friend who has had to have her medication used in her bipolar regimen adjusted many times because of awful side effects to her eyes and thyroid.

As for living with chronic situations, I’ve dealt with those, although mine are nothing like a person with a psychiatric disorder. For years I’ve had chronic tinnitus, vertigo, dizziness, and have had to follow a restrictive diet and meds to control this. This can be very hard; nothing has worked for years.

About three years ago, I had polymyalgia rheumatica, terribly painful. The treatment was Prednisone, starting with heavy doses and titrating down to zero for around 22 months. My life of mood swings, concerns about the possible loss of vision, crying jags, insomnia, depression left me feeling as if an alien had invaded me.

Please understand: I’m very grateful that I learned how difficult a long-term illness is and what it does to the patient and family. My illness wasn’t a lifelong sentence that schizophrenia, bipolar disorders, and related brain disorders are. We all need to be help and hope to those who receive such a diagnosis and what it does to victim and family.

Please help raise awareness, write and call your legislators, foster hope for such people who have lifelong brain disorders.

Be their hope.

Bobbie Paxton is a retired nurse who lives in Iowa City.

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