Faster, better…

Archive for the ‘Dystonia’ Category

Dystonia is a motion disorder. As luck would have it it struck me. It deprived me of gainful employment – or maybe the treatment did. I won’t ever know for sure.  Like any sudden and serious health problem getting and keeping good medical services has been a challenge as has affording those treatments.  It sure seems to me that something is amiss in the dystonia community and that is the lack of a Bill of Rights or a list of patient expectations. Before I get to that list let me take you through part of my journey. The trigger to write this was reading about a pharmaceutical company’s willingness to help some dystonia patients with medicinal costs. When I expressed an opinion on my Face Book page my opinion was deleted by my favorite dystonia advocacy group. I focused my point a bit and have written here.

Botox is a very expensive drug used to stop dystonic movements in muscles.  Many dystonia patients require it every three to four months. That was the regimen I was placed under until I started asking questions about my treatments and wondering if the treatments were worse than the cure. There is some truth, in my mind, that the treatment was worse than the cure but that it didn’t have to be that way. Had the clinic used a better approach toward a standard of care, I might still have a job and a great burden could have been lifted more quickly than it was.

My botox treatments cost the insurance company over $2000 each and individually between $280 and $300 depending on the quantity of the botox injected. (Easiest earnings for 15 minutes work I’ve ever witnessed.)  The overall performance of the clinic, their finance people, staff, and ombudsmen was, in my opinion, not worth the price.

Dystonia patients were recently presented with the alluring possibility that pharmaceutical  companies may be willing to help dystonia patients with the prices of their medicine. That may be great for a very small percentage of patients with no or poor insurance. It does not speak to the over arching problems faced by rare disease patients seeking diagnosis and treatment for the very first time. It doesn’t even begin to deal with the question as to whether or not such injections are even the first best approach.

Having one spouse unemployed is a hardship even when paying an out of pocket cost of $1200 a year. Maryland property taxes have tripled since 2003, food prices are up, heating oil is outrageous, Annapolis is thinking of new exciting ways to take more of our money, and gas prices! Need I say more? When seniors are faced with escalating costs and then discover that the treatment for their condition is a quarterly contribution of $300 not including any other health condition even a family with some income is pinched.

I finally had to decide whether the pulling, discomfort, and the pain of dystonia was easier to deal with than having the disease decide my economic future. It wasn’t easy. It took a lot of thought and prayer. There’s no way that many dystonia patients like me would qualify for drug assistance from a pharmaceutical company. I’m sure these companies would all insist that we spend retirement savings, sell a home, hock jewelrym or change lifestyles rather than “qualifying.”  But again the cost of the botox was just part of the expense.

My spouse and I have worked hard all of our lives. We cannot support the outrageous costs of the medical industry. We want to deal with our frailties and yet have a decent quality of life.  We want the opportunity to make these decisions based on knowledge we glean from our clinics, our own research, and our own personal response to the disease. I never felt like the clinic offered us any other option other than injections and continued expense.

The sudden generosity of pharmaceutical companies toward dystonia patients may have some PR advantage for those companies  but those of us already dealing with the disease and paying for services are feeling pinched, big time.  These gestures won’t help us. What dystonians  are without is a Bill of Rights that protects us from clinics and drug companies that might be over charging or using the checks from our insurance companies to fund research.

Our insurance companies are paying a fortune for dystonia treatments.  The patient’s contribution is no small cash amount either. As a dystonia patient, my return on investment was not what I expected. The medical provider made a ton of cash in my first year with dystonia. Last year’s treatments did absolutely nothing to improve my quality of life, in part because the the treatment had no basis in a standard quality of care. It was pure guess work. The injections actually made my quality of life worse and in fact made it impossible to seek employment.

The clinic never set financial expectations. My family went into the treatment not knowing what it would cost and it would be eight months before we clearly understood. Alnost two-thirds of a year’s bills came due at one time. The clinic never once spoke about the money. Dealing with their accounting departments was a horrific experience. Misinformation and confusion ran amok.  Not only did I have the onset of dystonia to cope with but I was also at war with the medical provider.  (The medical provider frequently blamed the insurance company, but in my research on all issues I investigated I found that not to be true.)

There was no defined standard of care for a new dystonia patient, billing practices were confusing and inaccurate, and doctors could not explain why repeated telephone calls made to them by my primary family physician were never returned. The arrogance was stifling. As I told one doctor at the clinic it was like being a bad episode of House.

As a dystonia patient, I think I’d rather call it like I see it. Dystonians remain victims to the disease and their providers. I’ve talked to many that have gone from doctor to doctor and clinic to clinic for years getting no help or bad help. It made no difference that I supposedly selected one of the best clinics. Like many dystonia patients I’m back on the road, perhaps from doctor to doctor, looking for one that can include me – the patient – in on their plan for my treatment. All I ever wanted was a doctor to care and to set my expectations. Oh yes, and not make the situation worse e.g. do no harm.

Strangely enough I’m back to work part time. It’s getting easier every week. I continue to believe that the poking, prodding, filming, and injecting had more to do with research than patient care.

Dystonians with insurance may be an easy mark to some clinics. I fully understand why insurance companies push back, and insist on accurate medical information,  something my clinic failed to provide and which caused the excessive billing delays. My last bill for an appointment in mid-November arrived in the first week of March. What has the clinic said about their “practices.”  They said something to this effect and I quote from memory, “Well yes I have heard that. The money we get primarily goes to research and to fund clinics. No one likes to endow administrative staff. The administrative functions then tend to suffer for lack of funds.”

While I can, I’m living with this disease. The physically-limiting side effects caused by botox drug experimentation have subsided. The effects of the mind-altering drugs are gone because I no longer accept that a person in pain has to remain numb and stupid the rest of their life in order to suit the medical profession’s latest whim on pain therapy. The ONLY anti-pain options ever suggested  by doctors were more or different useless drugs. (Some of them potentially addicting and one that caused unbelievable side effects.)
I’m happier now, coping as I have all through life with any difficulty that confronted me. I am all for being positive, but I’ve decided I’m not going to submit to the power of medical authority without asking questions. I’m going to walk when I feel cheated, argue when I’m not being heard, demand an audience when I feel ignored, ask for an accurate prognosis, and make sure they clearly understand what hurts and when. I refuse to remain a pin cushion on which doctor’s experiment using over-priced drugs. I came to this opinion after asking my doctor to briefly discuss my pain concerns and then hearing her say, “Well hurry up. I have other patients to see.” Listening to what I had to say was not part of the treatment nor was reading any of the written communication I provided.  Oh and calls to the ombudsman go to voice mail. Go figure.

Dystonia advocacy groups push back on the unsatisfied dystonia patient when negativity is perceived. Their theory is that if we all remain positive everything will be good someday. It’s not up to me, the dystonia patient, to publicly speak my truth or debate the standard of care. In so acting, the advocacy groups tend not to deal with reality and in turn alienate the people they most care about. Well I am inherently positive. I’ve just developed an, “I’m not going to take bad treatment anymore,” philosophy.  But out of negative experiences come positive change. Here’s my shot at that change:

I believe in this very positive Dystonia Patient’s Bill of Rights:

1. Dystonia is a rare disease. Planned, individual treatment is a necessity. A treatment care plan should be established. Clinics should make sure a physician is taking the time evaulate a patients progress during treatment, responding to patient concerns, and evaluating the success or failure of treatments. When one neurologist is scheduled to inject many patients with botox in one day another evaluative session should be scheduled. Doctors should avoid treating based on typical patient or averages. There is nothing typical about a dystonia patient.

2. Dystonia patients have personal physicians they trust. Telephone calls made by those doctors to neurological clinics should be returned and the doctor’s questions answered.

3. A hospital financial counselor should sit down with EACH new dystonia patient and outline the potential costs, billing periods, expected waits, and patient responsibilities. The dystonia patient should have the right, and be encouraged to have, a responsible representative with them at this meeting.

4. A dystonia patient should expect to get answers to questions when calling the dystonia clinic with questions in between visits.

5. Patients should be given forms on which to describe pain, muscle movement, mental acuity, vision, exercise, pain medicine intake, and success or failure of recommended approaches to pain therapy.

6. Mind-altering depression medications should be given only for clinical reasons and the patient monitored carefully.  There is a difference between being scared, unhappy under the circumstances, and being clinically depressed. Use of such medications as a pain therapy  should be discouraged.

7. Patients should learn early on what if any effect this disease will have on their job or their ability to work and the doctors should be ready to support the patient with a disability application in the event the patient’s condition warrants.

8. Alternative approaches to pain management and pain in general should be discussed and offered.

9. Use of addictive drugs, in cases where such use is not warranted, should not be the primary approach to pain management.

10. The patient may have a representative with them in any dealings with their clinicians or therapies. Patients and their representatives may take notes or or make recordings for later review.

11. A fair price is charged for services to every patient.  The clinic shall provide a place at the clinic where patients can discuss billing issues and make payments while visiting the clinic during normal business hours.  A customer management system shall track all calls made to or received from the patient.

12. A hospital ombudsman follows up or makes unsolicited contacts to rare disease patients to survey the patient’s concerns or lack thereof.

13. A clinic should remain aware of the patients past experience with previous doctors and the journey, positive or negative, that brought them to seek treatment. Having compassion for the rare disease patient is essential.

This list of very positive expectations evolved from a list of negatives encountered in my first year of Dystonia treatment. I encourage every dystonia patient to share what they would add to this list.

Noel reached out to me. Had it not been for the ADS and Noel Valerio I would have very little knowledge bout the disease that changed my life in 2009. Not every doctor is qualified to make these botox injections. The first doctor I encountered actually made the first year with the disease much worse than it had to be by making injections in the front of the neck and by using too much of the drug. Only by finally assuming responsibility for the way I was feeling was I able to have the courage to terminate my relationship with that government clinic and begin a search for another neurologist. To the first doctors I was a novelty to be videotaped and laughed at. Their lack of understanding caused dysphonia, muscle atrophy, confusion, and real pain.

The real sad part about dystonia is that some doctors pretend to understand what they are doing. The honest ones will say it is out of their field of study. The pretenders are making life even worse for their patients.

The ADS is bringing dystonians together and that will create a group of rare disease patients that understand treatments better than their physicians so we can no longer be misdiagnosed or taken advantage of.

It took eight months for the government clinic to begin billing properly. It wasn’t until then that I knew my cost out of pocket was $280 to over $300 per visit even after insurance. The insurance company paid over $2500 a visit to a government “research/learning” hospital where there was no standard of care or treatment plan. The doctors there would not even return the calls made by my personal physician. I suggested to a neuro-psychiatrist at the government clinic that it was like being in a bad Dr. House episode. i began to see dystonia as a money-making opportunity for clinics rather than as a disease where a cure was in my future.

Awareness is everything. Every dystonia patient is different. The treatments are not the same. the pain and muscle issues are from mild to extreme. The SSDI folks make their “determinations” using psychologists and mystery doctors that read the reports of doctors that really have no idea what they are confronted with. The result is a group of severely handicapped patients that are misdiagnosed, misunderstood, and financially unable to get treatments even with insurance. There is story after story, including mine, dealing with the inability of doctors to correctly diagnose this motion disorder. In the beginning of this disease it is not uncommon for patients to be in extreme pain and discomfort for months or years until they stumble across a doctor that understands.

I went for two months believing that I might have had brain cancer. It cost me a new job and prevented me from looking for a new one for over a year. The old emploter looks at me like I’m a mental case or contagious. It’s much harder finding work when your head and eyes move differently than everyone else.s The uneducated among us treat dystonians as though we are indeed contagious or might be unpredictable mental cases. (You know, bad for business.)

No one knows why I have dystonia. That’s the hard thing to understand. I didn’t break anything, It just happened.

Don’t count on disability either. That SSDI money has already been wasted away. Like social security it is a false promise the politicians never intended to fulfill. The government makes it extremely difficult to get the help you need and it’s even worse when you have doctors employed by the state in which you live. In one year’s time my doctor may have seen me a total of one and one half hour’s time across four brief visits. When i wanted to ask questions i was told. “Hurry up i have other patients to see.” Botox can’t wait once the bottle is opened. The tv lawyers that claim they are there for you when you need it are really only after easy money and open and shut cases. When your government doctors won’t tell the state SSDI folks they think you have a disability you’re screwed.

Most everyone is alone in their misery these days but especially when your medical crisis is unknown and painful. That’s why I’m thankful for Noel, the ADS, and for Oprah WInfrey’s network for airing this segment.

At age 15, Sara Langille has made it her mission to educate people about dystonia while fundraising to find a cure for the disease, which her father was diagnosed with about two years ago.

via Teen whose dad suffers dystonia takes up fight against disease – Local – News – The News New Glasgow.

(Sarah, the rest of us with Dystonia are also very proud of you! Thank you! All the best to your dad.)

Previously, Dauer and his colleagues used genetic engineering to create the same mutation in mouse DNA that causes the disease in humans. These mice had a neural specific defect similar to the brain-specific abnormality in human patients with dystonia.

Read the ENTIRE story at news-medical.net:

via Research explains brain’s susceptibility to dystonia.

Mrs Lane, 52, says she was refused surgery for the brain condition dystonia by one health authority, despite the treatment being available to patients living a few streets away in another health area.She lives in Spondon, just inside the area covered by NHS Derby City.

via Grandmother refused brain surgery that she could have if she lived 200m away | Mail Online.

(No good comes from socialized medicine. Obamacare will do the same thing.  Jennifer we dystonians are4 all praying for you.)

March 30 at 10:37am American Dystonia Society will hold topic specific support teleconferences on Saturday April 3rd at 12PM EDT and Sunday April 4th at 9PM EDT. Saturday Teleconference Topic “Support for Loved Ones” April 3rd, 12PM EDT, 11AM CDT, 10AM MDT, 9AM PDT will focus on providing a forum and support group for secondary victims of Dystonia, our spouses, partners, children, and close friends. They too have needs to share experiences with others. Encourage your loved ones to join a support group just for them. Sunday Teleconference Topic “Dealing with the Disability Process” April 4th, 9PM EDT, 8PM CDT, 7PM MDT, 6PM PDT will focus on providing a forum and support group for Dystonia Patients that have dealt with the SSDI application process. Whether you are thinking of applying, applied and were successful or not, did it yourself or hired a lawyer, call in and share your experiences and help others cope with the frustrations and uncertainties. The dial-in number is (605)477-2100 and the participant access code will be 421467# for both teleconferences.

American Dystonia Society will hold topic specific support teleconferences on Saturday March 27th at 12PM EDT and Sunday March 28th at 9PM EDT.

The Saturday teleconference will be focus on Parenting with Dystonia for parents who have Dystonia and either raised children, are raising children, or planning a family. Sharing experiences to help one another cope with something that is difficult even for healthy people.

The Sunday teleconference will cover Botox Experiences, both good and bad. We would like people to share their experiences and expectations. This will be particularly useful for newly diagnosed patients.

The dial-in number is (605)477-2100 and the participant access code will be 421467# for both teleconferences.

The American Dystonia Society is holding another Support Group teleconference this weekend. Dystonia patients and their caregivers and spouses are encouraged to attend. Meet others just like yourself. You are not alone. When you have the disease you are considered a member. ADS will never ask you for a dime. I’m a member of ADS and I support what they do. Join us on FaceBook and visit our website.

Don’t forget American Dystonia Society support teleconferences this weekend Sat 12PM EDT. Sun 9PM EDT. The dial-in number is (605)477-2100 and the participant access code will be 421467# for both teleconferences.

FDA NEWS RELEASE

For Immediate Release: March 9, 2010
Media Inquiries: Sandy Walsh, 301-796-4669; [email protected]
Consumer Inquiries: 888-INFO-FDA

FDA Approves Botox to Treat Spasticity in Flexor Muscles of the Elbow, Wrist and Fingers

The U.S. Food and Drug Administration today approved Botox (onabotulinumtoxin A) to treat spasticity in the flexor muscles of the elbow, wrist, and fingers in adults. Spasticity is common after stroke, traumatic brain injury, or the progression of multiple sclerosis.

“Muscles affected by spasticity have increased stiffness and tightness, which may lead to pain, difficulties with hygiene and other activities of daily living, and may affect how a patient looks,” said Russell Katz, M.D., director of the Division of Neurology Products in the FDA’s Center for Drug Evaluation and Research. “In clinical trials, treatment with Botox was found to be beneficial to patients with upper limb spasticity.”

Botox works by temporarily blocking the connections between nerves and muscles, resulting in a temporary paralysis of the spastic muscle.

Botox has a Boxed Warning that says the effects of the botulinum toxin may spread from the area of injection to other areas of the body, causing symptoms similar to those of botulism. Those symptoms include swallowing and breathing difficulties that can be life-threatening.

The most common adverse reactions reported by patients with upper limb spasticity were nausea, fatigue, bronchitis, muscle weakness, and pain in the arms.

Botox has not been shown to be safe and effective treatment for other upper limb muscles, spasticity in the legs, or for treatment of fixed contracture – a condition that affects range of motion. Treatment with Botox is not intended to substitute for physical therapy or other rehabilitative care.

Botox is manufactured by Allergan Inc. of Irvine, Calif.

(RareDiseaseDay.us) “Alone we are Rare, Together we are Strong”

From the Rare Disease website: “Each year, World Rare Disease Day will be observed on the last day of February (Feb. 29 in leap years and Feb. 28 in other years). Our goal is to draw attention to rare diseases as an important public health issue that cannot be ignored.

In the U.S., a rare disease is one that affects fewer than 200,000 people. This definition comes from the Orphan Drug Act of 1983 and is slightly different from the definition used in Europe. There are nearly 7,000 rare diseases affecting nearly 30 million Americans. In other words, as many as one in ten Americans are suffering from a rare disease.”

Join me and my fellow Dystonians and celebrate rare disease day. Help anyone you know with a rare disease by increasing awareness. Please visit the Rare Disease Day Website.

This musician with dystonia taught himself to play the violin with his good arm. He also has focal dystonia but in his arm and not is neck or face.

NeuroLogica Blog » Desiree Jennings – The Plot Thickens.  This article at the NeuroLogica Blog, by Steven Novella, MD, is an exceptional inside look at the so-called Dystonia Girl story that so many on the Internet have for some reason passed around as humorous.

Dystonia is not fun, it isn’t funny. It is a painful movement disorder with life-changing consequences. It is not fully understood other than it is a unique physical neurological condition. The two-hundred-fifty-thousand of us that have the third most common movement disorder in the US just below Parkinsons, did not appreciate all the bad press. At least I didn’t. We like awareness to avoid discrimination and to help  gain understanding and acceptance as any handicapped individual would like but not poorly researched news hysteria.

I applaud Dr. Novella for his candor.

Found this blog post through Twitter. Thanks @celtic_mist. Dystonia and Diet.