If you have a disease, does that name you? When you accept the reality of a diagnosis, do you become that illness? This topic is discussed at our next meeting and also relates to Parkinson’s Disease Awareness month.
Are you bipolar or do you have bipolar disorder?
Two weeks from now KosAbility’s monthly meeting on Sunday 24 April (4pmPT/7pmET) will feature a story on the difference between having and being an illness, and how one person made the change. The particular illness discussed is bipolar, but the topic is important no matter what health issue you face. The author, BrainNinja, is KosA member Alexandra Lynch’s girlfriend and BrainNinja will respond to comments through Alexandra. (How new age, a channelled discussion!) For me, maintaining the having/being distinction is essential to how I feel about myself living with the ick of tick-borne diseases. Many who advocate Lyme awareness call themselves Lymies and this short-hand label can be useful, but it brings baggage I don’t want to carry. I’m more than Lyme disease and Babesiosis — in fact they are the background of my life now, even though I’m not cured.
Parkinson’s disease — Our challenges don’t define us, Our actions do.
April is Parkinson’s Disease (PD) Awareness Month. Nearly one million people in the US have PD, and 60,000 more are diagnosed annually. Parkinson’s is a disorder affecting brain chemistry in an area of the brain controlling movement and coordination. It’s chronic, progressive, and has no cure yet. PD progresses very slowly and many things can improve symptoms so its easy for people to think they have come up with a “cure”. Thus, some of the books and online help information are misleading or inaccurate. More information and reliable resources provided by wilderness voice are below the video.
Perhaps the most well known face of Parkinson’s is actor Michael J. Fox who was diagnosed in 1991. His foundation supports people with PD and promotes research into cures and means of slowing down disease progression. His foundation’s motto reflects the topic BrainNinja discusses in her upcoming story for KosAbility: Our challenges don’t define us. Our actions do.
what is parkinson’s And What helps?
Parkinson’s is a defect in the metabolism of alpha-synuclein, which leads to the early death of dopamine producing neurons, and other problems. The anti-leukemia drug nilotinib is alleged to remedy this metabolic defect through molecular signaling magic, but this has yet to be properly proven. There are good results from a phase 1 trial.
A remarkable thing about PD is that the placebo effect is therapeutic. Anything that gives the patient hope: treatments, or even visits to doctors’ offices, causes the release of dopamine, which is what the PD brain is short of. So as a result, placebos cause a real improvement in symptoms. Exercise is good for PD. Perhaps this is related.
Treatment of PD centers around the care and feeding of dopamine.
There are 3 kinds of drugs for this purpose:
- Carbidopa / Levodopa – replace the missing dopamine
- MAO-B inhibitors - slow down the body’s destruction of dopamine
- Dopamine agonists (“DAs”) – increase the sensitivity of neurons to dopamine
This last category, DAs, are dangerous drugs and should only be used as a last resort. They can cause impulse control disorders. This refers to compulsive gambling, sexuality, or eating. Some patients who had previously been responsible citizens have lost everything due to dopamine agonist induced compulsive gambling or sex. Many patients did not realize the drug was causing it. DAs often cause impairment of the autonomic nervous system’s ability to regulate blood pressure, which is often wrongly blamed on PD itself. This can result in inability to stand without fainting, and serious injury from falling.
more help and info for Parkinson’s
forums
books
KosAbility is volunteer diarist community meeting the last Sunday of each month at 4pm PT/7pm ET. We embrace people living with disabilities, who love someone with a disability, or who want to know more about the issues. Our use of "disability" includes temporary as well as permanent health/medical conditions, and small, gnawing problems as well as major, life-threatening ones. Our use of "love someone" extends to cherished members of other species. Our discussions are open threads in the context of this community. Feel free to comment on the diary topic, ask questions of the diarist or generally to everyone, share something you've learned, tell bad jokes, post photos, or rage about your situation. If you are interested in contributing a diary, contact Besame or wilderness voice. |