Illness in One Word: WORK

Prompted to think of a four letter word which I might use to describe life with chronic illness, my mind kept returning to the word WORK.

Busy with work:
While blinded with optic neuritis 10 years ago, I managed to make every rehearsal and scheduled performance without missing a step. All except the one 'kiddie concert' I missed the Tuesday I visited three eye doctors (including my own optometrist, a retina specialist, and a neuro-opthalmologist). Although the high-dose oral prednisone caused my hands to swell up to twice their size, I don't recall cancelling any piano lessons. The MRI showed inflammation around the optic nerve but no brain lesions (so no MS). Perhaps I still felt invinsible although I couldn't see.

Unable to work:
Just over five years later, I was being diagnosed with MS. At first my neurologist called it transverse myelitis (and probable MS) while I was being infused with high-dose steroids. The following weeks I couldn't work, I couldn't sleep, I couldn't stay awake. I was a loopy lump on the couch who developed shingles just weeks later.

Working hard:
During twice weekly occupational therapy, I worked really hard to make my left hand come back to life. Some of my fingers had become useless and the strength of my grip was measured at one pound. That was a very long two months under the excellent care of a hand specialist.

Hardly working:
When rheumatoid arthritis flared so extremely to cause carpal tunnel syndrome, I couldn't play the piano. I couldn't hold objects. I couldn't stand to touch anything. I had piano student moms who assured me that I could still teach although I couldn't demonstrate. Now how's that for trust and confidence? During this time, I was hardly playing my horn professionally.

Health is work:
Keeping up with the doctor's appointments, prescription refills, mental health, and symptom management is a full-time job in itself. Sometimes I simply don't want to schedule that next appointment or making another run to the pharmacy. Sometimes I want to pretend that I don't life with multiple chronic diseases.....but that is never possible.

Satisfying work:
After starting this blog, I discovered people online who accepted me as I am. The MS community has been most welcoming. Writing here has led to other opportunities to write about my chronic illnesses online where I can hopefully make other patients feel just as welcome.

So when asked about living with chronic illness, the word which comes to mind is WORK. Without work in some fashion, I wouldn't be happy. I wouldn't feel alive. Work is very much different than gainful employment and I hope that we all can find ways to 'work' which are satisfying.

Ask me tomorrow and the word might be something completely different. Such is the changing nature of living with a chronic illess. Always there, always the same, but always changing at the same time.

Crazy Snow!! 2010

There used to be a bench over there. Where'd it go?

Hard to tell, but the heavy snow has made this WIDE tree look kinda skinny.

The picnic table on the deck (4 ft off the ground) is hidden under snow.

Let's go see just how much snow is really on the deck and which didn't blow away.

Snow, Ampyra, Ouchies

Hi folks,

I've been busy around the blogworld lately with the extra research which went into my AMPYRA post over at HealthCentral and other posts yet to be published. If you haven't read it and commented, it would be great if you did. (Some of the folks over there seem to be more highly impressed as the number of comments and page views increase on a post. Personally, I become more impressed by other, non-measurable aspects of our wider community online.)

If you didn't see the news, Acorda announced that AMPYRA will carry a wholesale pricetag of $12,850 for a 1-year supply. I called the 1-888 number to ask about patient assistance and share what I learned in the comments to this post.

Tuesday night, it snowed in the DC area again. Schools were cancelled but that wouldn't stop my music students from coming to lessons. So I had to make way for them to safely enter the music studio and offer a place to park. This required the shoveling of snow on long walkways and in the driveway. It was heavy wet snow, but thankfully was melting rather quickly. (Still needed to be shoveled, however.)

When I first came in, I needed to sit for quite a long time so that I could make it up the upstairs to take a shower. I made it up the stairs but was walking "like a drunk" and needed to sit for a good long while. Today, I am SORE, stiff, and still walking slightly funny.

Looks like we are about to be hit with a massive snow storm on Friday night/Saturday with up to 2 feet of snow. I went to the grocery store today to get just a few items and it was a zoo. I am so totally over the snow right now. I won't be able to shovel out of this next storm myself and hope that the guys who dug us out of the last big storm will do so again this Sunday.

Bringing the bags of groceries to my car and then into the house, I was reminded that I really do have rheumatoid arthritis. I should have practiced better joint protection strategies. Now my fingers hurt in addition to my arms hurting from yesterday's shoveling. Booo.

So tomorrow is a rest day. This body is serving me well, but deserves some TLC.

Annual Price for AMPYRA set at $12,850

For comprehensive information regarding Acorda Therapeutics and AMPYRA, read my HealthCentral article.

Acorda Therapeutics Announces Pricing and Patient Assistance Programs for AMPYRA (dalfampridine)

• AMPYRA Wholesale Acquisition Price Set at $1,056 per 30-Day Supply
• Patient Assistance Program Launched for Uninsured and Underinsured To Provide AMPYRA at No Cost
• Co-Pay Program Implemented To Help Manage Out-of-Pocket Expenses
  

HAWTHORNE, N.Y.--(BUSINESS WIRE)--Acorda Therapeutics, Inc. (Nasdaq: ACOR) today announced the wholesale acquisition cost (WAC) for AMPYRA™ (dalfampridine) Extended Release Tablets will be $1,056 per 30-day supply (60-count pill bottle), an annual cost of $12,850. AMPYRA was approved on January 22, 2010 by the U.S. Food and Drug Administration (FDA) as a treatment to improve walking in patients with multiple sclerosis (MS). This was demonstrated by an increase in walking speed. AMPYRA is expected to be available in March 2010.

Acorda is launching a comprehensive set of services to ensure broad access to AMPYRA for people with MS, including patient assistance and co-pay programs that will be open as soon as AMPYRA is commercially available.

“AMPYRA is the first medication indicated to improve walking in people with MS, one of the most debilitating challenges associated with the disease. Acorda’s goal is to ensure that cost is not a barrier to any person with MS who may benefit from this important medication, regardless of their level of income or healthcare coverage,” said Ron Cohen, M.D., President and CEO of Acorda Therapeutics. “To that end, our assistance programs account for people who are unable to afford their medications but whose income or healthcare coverage often exclude them from other patient assistance programs. And regardless of income, people with private insurance can benefit from our co-pay program, wherever allowed by law.”

AMPYRA Patient Support Services

Acorda has established AMPYRA Patient Support Services, a dedicated resource for healthcare professionals and people with MS. Experienced customer care agents will be available to help healthcare professionals process prescriptions, work with insurance carriers to facilitate coverage, and direct patients to available assistance programs.

The AMPYRA patient assistance program is being managed by a third party organization with extensive experience in coordinating patient benefits. Patients who meet income and other requirements, regardless of their insurance status, may receive AMPRYA at no cost. This may include Individuals who have limited healthcare coverage.

Acorda has also put a program in place to help individuals with private insurance manage their co-payment costs, where allowed by law.

Healthcare professionals and people with MS can contact AMPYRA Patient Support Services at 888-881-1918 from 8:00 a.m. to 8:00 p.m. Eastern Time for more information about AMPYRA, and to learn more about the patient assistance and co-pay mitigation programs.

Important Safety Information

AMPYRA can cause seizures; the risk of seizures increases with increasing AMPYRA doses. AMPYRA is contraindicated in patients with a prior history of seizure. Discontinue AMPYRA use if seizure occurs.

AMPYRA is contraindicated in patients with moderate to severe renal impairment (CrCl≤50 mL/min); the risk of seizures in patients with mild renal impairment (CrCl 51–80 mL/min) is unknown, but AMPYRA plasma levels in these patients may approach those seen at a dose of 15 mg twice daily, a dose that may be associated with an increased risk of seizures; estimated CrCl should be known before initiating treatment with AMPYRA.

AMPYRA should not be taken with other forms of 4-aminopyridine (4-AP, fampridine), since the active ingredient is the same.

Urinary tract infections were reported more frequently as adverse reactions in patients receiving AMPYRA 10 mg twice daily compared to placebo

The most common adverse events (incidence ≥2% and at a rate greater than the placebo rate) for AMPYRA in MS patients were urinary tract infection, insomnia, dizziness, headache, nausea, asthenia, back pain, balance disorder, multiple sclerosis relapse, paresthesia, nasopharyngitis, constipation, dyspepsia, and pharyngolaryngeal pain.

For full Prescribing Information and Medication Guide, please visit: www.AMPYRA.com.

About AMPYRA (dalfampridine)

AMPYRA is a potassium channel blocker approved as a treatment to improve walking in patients with multiple sclerosis (MS). This was demonstrated by an increase in walking speed. AMPYRA, which was previously referred to as Fampridine-SR, is an extended release tablet formulation of dalfampridine (4-aminopyridine, 4-AP), which was previously called fampridine. In laboratory studies, dalfampridine has been found to improve impulse conduction in nerve fibers in which the insulating layer, called myelin, has been damaged. AMPYRA is being developed and commercialized in the United States by Acorda Therapeutics, and by Biogen Idec in markets outside the U.S. based on a licensing agreement with Acorda. AMPYRA is manufactured globally by Elan based on a supply agreement with Acorda.

About Acorda Therapeutics

Acorda Therapeutics is a biotechnology company developing therapies for multiple sclerosis, spinal cord injury and other nervous system disorders. The Company's marketed products include AMPYRA™ (dalfampridine), a potassium channel blocker approved as a treatment to improve walking in patients with multiple sclerosis (MS), as demonstrated by an improvement in walking speed; and ZANAFLEX CAPSULES^® (tizanidine hydrochloride), a short-acting drug for the management of spasticity. The Company's pipeline includes a number of products in development for the treatment, regeneration and repair of the spinal cord and brain.

Forward-Looking Statements

This press release includes forward-looking statements within the meaning of the Private Securities Litigation Reform Act of 1995. All statements, other than statements of historical facts, regarding management's expectations, beliefs, goals, plans or prospects should be considered forward-looking. These statements are subject to risks and uncertainties that could cause actual results to differ materially, including Acorda Therapeutics' ability to successfully market and sell Ampyra in the United States and to successfully market Zanaflex Capsules, the risk of unfavorable results from future studies of Ampyra, the occurrence of adverse safety events with our products, delays in obtaining or failure to obtain regulatory approval of Ampyra outside of the United States and our dependence on our collaboration partner Biogen Idec in connection therewith, competition, failure to protect Acorda Therapeutics’ intellectual property or to defend against the intellectual property claims of others, the ability to obtain additional financing to support Acorda Therapeutics' operations, and unfavorable results from our preclinical programs. These and other risks are described in greater detail in Acorda Therapeutics' filings with the Securities and Exchange Commission. Acorda Therapeutics may not actually achieve the goals or plans described in its forward-looking statements, and investors should not place undue reliance on these statements. Acorda Therapeutics disclaims any intent or obligation to update any forward-looking statements as a result of developments occurring after the date of this press release.

Monoclonal Antibodies in Development for MS

What are some monoclonal antibody treatments in development for MS?

At present, several additional monoclonal antibodies are being studied as investigational treatments for MS. They are not currently available for routine use in the treatment of MS.

Rituximab (Rituxan®) is a monoclonal antibody directed at B-cells (CD20+ B-cells) and have been reported recently to be efficacious in treatment of relapsing-remitting MS. Studies in primary progressive MS did not produce statistically significant results. This drug is FDA approved for treatment of rheumatoid arthritis and non-Hodgkin’s lymphoma. (Read more about Rituxan in Rituximab Infusion: My First Experience)

[Note: I believe that ofatumumab, a fully human monoclonal antibody focused on CD20+ B-cells, will replace rituximab in studies in MS. See listing in clinicaltrials.gov.]

Alemtuzumab (Campath®) is another monoclonal antibody directed at lymphocytes (CD52+ B-cells) which is under continued investigation for treatment in MS. Campath was found to be more effective than Rebif in early relapsing-remitting MS. Both rituximab and alemtuzumab are associated with longer-term immunosuppression (6 to 12 months). Serious immunological and infectious complications have occurred with these agents.

Daclizumab (Zenapax®) is FDA approved for the treatment of kidney transplant rejection. Zenapax is a humanized monoclonal therapy which targets CD25+ T-cells and blocks IL-2. It is off-label for MS and people with relapsing-remitting and transitional MS are treated with this agent. Most often these people have failed several other treatments. Efficacy has been demonstrated in off-label experience, two small phase II studies, and a larger multi-center phase II study. Currently, a longer duration multi-center phase II trial is in progress in Europe. Rash, fever, and occasional overgrowth of lymph nodes have been observed in people on long-term therapy with this drug.

Read this post in its entirety:

Monoclonal Antibodies: Treatments in Development for MS

Have Some Respect for the Living Please

On December 7, 2009, my 85-year old grandfather died in his sleep while his wife of 46 years slept beside him. This was on a Monday morning and his funeral was held on the following Wednesday. I attended that funeral as did my mother, the 3rd child of 5 children my grandfather had with his first wife, now deceased.

My grandfather's second wife is Bonnie. I grew up having 4 great-grandfathers, 2 great-grandmothers, 2 grandfathers, 2 grandmothers, and a Bonnie. I never called her grandma, granny, grandmother, or any of those other endearments. To me, it was completely natural to call her by name. That's what my mother called her step-mother and so I grew up following suit.

I love my Bonnie, who had two sons and two granddaughters of her own. Our families knew each other but didn't really mingle much over the years. There was always a his-hers aspect to the greater family dynamics, but perhaps what was not spoken of so much was what was truly theirs together....a lifetime of joys, sadness, family, and life. A lifetime of love.

Bonnie buried the love of her life the 2nd week in December just a couple weeks before Christmas. Then less than a month after Christmas four of her grown stepchildren came to their house to go through and distribute his personal belongings and those he had kept of his own father's. One child was missing in this misadventure and that would be my own mother who was not told of this gathering, before nor after.

That is, until today when Bonnie called to talk. She is an 86-year old woman who has lost her husband and longtime lover. She is alone in a large house which now has empty space where my grandfather's memory once lived. Bonnie was surprised to learn that not one of my mother's siblings told her of their gathering. No one invited her. Nor did anyone think to wait a few months so that Bonnie could take her time in being close to him through his personal treasures.

However, my aunts and uncles did choose what items to allow my mother to keep, or rather which ones to set aside on her behalf without her knowledge. Who knows what those things are but we at least know that they are not the lawnmower or weedwacker which were taken. Tell me, who takes lawn equipment from the home of a grieving widow who still has to take care of the lawn?

I am so upset by this. Upset for my mother whose siblings worked in pseudo-secret. Upset for the loss of an opportunity to see for myself (someday) what treasures my grandfather had saved through the years. But mostly, very much upset for my Bonnie who is alone and sad and will still be grieving for many moons to come.

I wonder if anybody took the brand new unused wallet which I had given my grandfather a few years ago before I learned that he had stopped using a traditional wallet after his was pickpocketed some decades earlier while on vacation in London.

In a related funny story, for several years I gave my grandfather wonderful books, ones which I was sure he would greatly enjoy. However one year he finally asked that I give him no more books. It was that Christmas that he finally confessed that he never read books. The Dallas Morning News was enough to satisfy him.

Back to this story. The gathering of siblings apparently happened a couple of weeks ago and since that time my mom had spoken with two of her siblings, but neither of them breathed a word of what they had accomplished. Not even to inform her of what they decided she might be interested in keeping.

Bonnie doesn't have a computer and certainly doesn't follow my blog, but I will make it a point to send her my love. For not everybody grows up with their very own Bonnie. I am truly a fortunate girl.