 |
 |
angela hamon wrote: > I have noticed a paradox. . .There are people who claim they can cure Parkinsons with vitamins, or healing touch, or prayer, or even claim there is no progressive disease called P.D. I have seen people asked to leave church for good because prayer did not work. GNC store salesmen have stolen money from confused patients who were just out trying to exercise, stealing by coercing them to buy unwanted or unsafe products, while promising to cure them. > > Then there are Drs with terribly harsh treatments, DBS gone wrong, where the person cannot swallow, or speak, or has no tremors because of too much dopamine inhibition, so no involuntary movements and no voluntary ones either! Treatments for the dementia such as anti-schizphrenia drugs known to induce dyskinesia, which can result in full blown parkinsonism in persons who don't already have it--and nightmarish symptom escalation for those who do. I have seen Reglan induced convulsions to treat wasting, in people who needed swallowing therapy, IV feedings, and patient people ready to feed them. > > > I am all for a cure, and it would be a miracle, but when will the medical community see Parkinsons for what it is--a chronic disease requiring management, treatment plans, vocational rehabilitation, and lifestyle changes along WITH cutting edge medications? There are a few who do take this wholistic approach, but unfortunately not enough. There are careful dosage adjustments, symptom diaries, and patient education sessions, but nowhere NEAR enough. > > When will the focus be on the underlying dopamine loss and the painful tremors and symptoms you cannot see, wasting and weight loss, memory and learning impairment, instead we socially and medically seem to focus on an unsightly tremor, or look shocked when someone falls frequently, because it inconveniences us. > > As a caregiver I have seen people who are obviously stage 2 or 3 saying their Dr is not really sure they have Parkinson's disease. Their spouse is sure, their employer is sure, clergy is sure, and they do not hesitate to tell the sufferer. Harsh treatments, spinal taps, some (not all) surgeries, and giving up on patients is not the way to manage this situation. I just wish there was a better way to go about getting a differential diagnosis, prompt treatment, and less ping-ponging of patients who are trying to work, raise their families, or in some cases, just see their 21st birthday. No one wants to go to the doctor every day, no one wants to be tens of thousands in debt. Most disabled people want what healthy people want, and are willing to work many times harder to get it. > > Thanks for listening. > angela in NC > I am a Mother and caregiver to brain injury patient. who has a name. > Her name is Margey. Margey. a person with feelings. unlike her doctor. > > > Angela: I understand why you may feel the way you do. But let me try and defend what appears to you as a cold and indifferent doctor. Doctors are first and foremost scientists. They are fascicle with numbers, biochemistry, anatomy and comfortable with staying current in their sub specialty by reading stacks of journals and books. Doctors are always subject to a lawsuit for something they did not know. Their ability to correctly interpret observations and then act with impunity to help the patient does not require the doctor to project warm fuzzy feelings to the patient. What you want in a doctor is one that consistently makes the best medically based decisions. What you give Margey is not available from this doctor. How much trust should Margey invest in her doctor ? Looking at the number of years they have spent exclusively studying movement disorders is a good measure of their commitment to doing whats best for the patient. ned > > > ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn