The front page of online version of The New York Times has a link to “From M.S. Patients, Outcry for Unproved Treatment“. It reports on Multiple Sclerosis and CCSVI (aka Chronic Cerebrospinal Venous Insufficiency) providing information about patients and doctors who are trying the “liberation procedure”.
The most sobering sentence? “These critics warn that multiple sclerosis has unpredictable attacks and remissions that make it devilishly hard to know whether treatments are working — leaving patients vulnerable to purported ‘cures’ that do not work.”
I hang on to hope with the resignation of a skeptic and await solid science.
The title gives it away, but with which medical professional is a Multiple Sclerosis patient likely to have the most contact?
In my experience, it has been her pharmacist. Most medications are refilled monthly. Between quarterly or annual visits to the neurologist, I believe most concerns about Multiple Sclerosis are related to medications. And in my experience, the pharmacist is the more accessible, knowledgeable source of information about medications and their effects.
The most helpful professionals on my wife’s “treatment team” are the pharmacists at our local pharmacy. In fact, I imagine they know more about the current status of my wife’s health than does her neurologist. The pharmacists are so helpful, they’re on speed dial in my cell phone.
Here are some examples of how forming a relationship with a good pharmacist will make your role as a caregiver much, much easier.
1. Pharmacists know about drugs. Take advantage of the medication education a pharmacist will provide when a new medication is prescribed. Medications come with fact sheets (written in fine print). If you ask, a pharmacist will explain them for you in plain English. Examples of a few important questions to ask about each new medication include:
- What is this medication for?
- Will the patient’s other medications interact with this new drug?
- Do other medications she is taking effect when this one should be given?
- What side effects should we worry about?
- What if she forgets a dose?
- With or without food?
2. Pharmacists really understand drug interactions. It is important to ask a pharmacist about the potential consequences your patient’s prescribed medications may have with over-the-counter medications for such things as cold or allergies. Some drugs interact with each other to complicate or compound the side effects. The last thing you want is to create a problem while trying to treat symptoms of a cold. Pharmacists love to talk about drugs. It’s the reason they went to school for a long time! Take advantage of their knowledge.
3. Pharmacists know what works. Doctors specialize in your body. Pharmacists specialize in what medications do and can do to your body and its processes. More than once a good pharmacist has intervened on a patient’s behalf when he or she noticed the physician’s prescription may not be appropriate. A phone call to the doc is usually all it takes to fix the problem.
4. A good pharmacist can make traveling easier. Ever forget to take important medications on a trip? If you call your home pharmacist. he or she may be able to work with a local pharmacy where you are visiting to provide enough medication for your visit.
5. Your pharmacist can also be a great ally for you in your efforts to communicate with your insurance company about medication authorizations. Pharmacists really understand the whole medication approval process and can give you pointers about relating to insurance companies or provide information on your behalf.
6. Finally, my pharmacist serves an excellent gumbo from his front porch each Halloween night and sets tables in his yard for all the trick or treat parents!
If you’ve ever wondered how new Multiple Sclerosis drugs are developed, evaluated, and finally approved for the market, Bloomberg.com offers a link to the video of the FDA Committee Meeting on Novartis’s new Gilenia, the first pill for Multiple Sclerosis.
After drug testing and before the FDA approves a new medication, a panel of health experts considers the drug studies and, if the panel is satisfied, recommends approval to the FDA for approval. The FDA usually does as the panel suggests.
The panel reviewing Gilenia recommends it as safe and effective for controlling tremors, concentration problems and other symptoms of relapsing remitting MS.
If the medication’s side effects do not derail the FDA’s approval later this year, Gilenia will be a welcomed medication for MS patients because it is the first MS treatment available in pill form. Approval would mean no more routine injections or infusions for those who take it — no more needles or injection site reactions.
Reported side effects of Gilenia include eye disorders, heart problems and lung problems. In spite of these, the panel recommend approval of the drug for the treatment of Multiple Sclerosis.
With each medication they choose to take, MS patients are faced with the persistent question, “Will my MS treatment be worse for me than the long term effects of the disease?” Because this is a new medication, there really isn’t an answer to this question yet. Not enough people have taken it for enough time for researchers to know the long term effects.
In light of the side effects, the panel did recommend Novartis study the effectiveness of lower doses of Gilenia.
More information about Gilenia:
- "First pill for multiple sclerosis safe, effective"
- "Novartis Gains After FDA Panel Backs First MS Pill"
- "FDA advisory committee unanimously recommends approval of Novartis investigational treatment FTY720 to treat relapsing remitting MS"
In Multiple Sclerosis has a History, I wrote, “I didn’t know lumbar punctures have been used for diagnostic purposes since 1913”. I think that piece of the History of MS jumped out at me because lumbar punctures (aka “spinal taps”) give me the creeps.
Believe it or not, (and I am certain she will disagree with this) my wife’s spinal tap was harder on me than it was on her.
After all her other diagnostic tests were done – Magnetic Resonance Images (MRI), Visual Evoked Reponse (VER), electromyograms (EMG), blood work (CBC, etc.), electroencephalograms (EEG) – the lumbar puncture (SPINAL TAP) was saved for last. It’s the one test that actually answers the question, “is this Multiple Sclerosis (MS)?”
The way I understand it, spinal fluid is removed and sent to a lab which uses electroflouresis and looks for oligoclonal bands – don’t worry, I don’t understand it either. If the oligoclonal bands are present in the results, then they, along with the other test results, make it official: it’s MS. (According to Wikipedia, “Approximately 79%-90% of all patients with multiple sclerosis have permanently observable oligoclonal bands“.
Drawing the spinal fluid is a fairly simple, uncomplicated procedure for the doctor and patient. Perhaps, not so much for the husband/caregiver, though.
I didn’t see it all because of where I was standing when it started, but it looked like a very professionally organized medical procedure. My wife sat sideways on an examining table with a nurse beside her at the table’s end. The neurologist stood behind her with a shiny tray of medical instruments.
My wife’s feet were placed on a round, stainless steel stool in front of her beside the examining table. The stool was adjusted to just the right height for her comfort. (Up front, I want to add there was no stool or seating of any kind for the husband/caregiver). I stood in front of her for moral support and to help her remain still.
A little local anesthetic was administered at the spinal tap site. After a few moments of the neurologist asking, “Can you feel it now? Can you feel it now?”, he was ready to begin.
Knowing that medical procedures have caused me to feel a little faint in the past, I focused my attention on my beautiful wife’s face. She, however, wasn’t really in the mood for deep eye-gazing and so I was pretty much to myself. But I did my job well. I kept her still and provided continuous support.
A few minutes into the procedure my wife, doing as instructed, reported to her doctor, “I can feel that. It’s like a little pressure.”
For the first time, I looked over her shoulder at the neurologist. In response to her report that she could feel something, he reached to his shiny collection of goodies. He chose a syringe with a needle and then he did the oddest thing. He tilted sideways a bit.
I looked to the nurse and she was leaning the same way! And the walls, too!
It hit me. I was fainting!
Quickly, I searched for a place to sit. And right in front of me was the stool for my wife’s feet. Perfect!
Then that little part of my brain that often has the last rational thought before it all goes black, screamed into my dark fog, “No! She can’t be moved!”
Searching around the leaning room in slow motion I saw so many things: the tilting neurologist was focused on my wife’s back, the tilted nurse was focused on the neurologist, my leaning wife was looking at me with big eyes and raised eyebrows (she suspected what was coming), the bright surgical lights were dimming, to the left was a doorway. I fell through it and, as it opened, I saw my landing place in the dark: a surgical chair! I crashed!
Fortunately, the room I crashed was empty and no procedures were in progress!
I leaned back in the chair like I were at the dentist’s. The darkness began subsiding. Slowly, I began gathering my senses and noticed a stack of surgical towels and a sink beside the chair. Grabbing a handful of the towels, I plunged them into the cool running water and covered my face waiting for the nausea to pass and clarity of thought to return.
As soon as I felt like sitting up I began pulling the towels from my head. Immediately, a nurse walked into the room through the other door.
She stopped when she saw me. I was not expected. I tried to grin without looking goofy as water dripped down my head and onto my shirt.
“Can I help you sir?”
“No, I think I’m ready to go back in for more,” I replied. Her eyes widened as she backed out of the door.
I walked softly back into the room where my wife, the neurologist and his nurse were still at it. My head pounded. Sheepishly, I stood in front of my wife. Seeing my pale face and wet hair, she knew her suspicion had been true.
“I almost fainted,” I explained softly.
“I know,” she replied.
“How are you doing?”
“He’s almost through”, she offered calmly, continuing to sit still on the examining table.
“That’s good. I’m here for you, Baby”, I offered.
“I know you are.”
Caregiver’s Tip: When forced to observe medical procedures that may cause you to faint, make certain you have an appropriate landing place before the procedure begins.
MS has a history. I highly recommend you explore it for the “big picture” it provides.
“Multiple Sclerosis: a journey through time” is an audiovisual tour of the history of multiple sclerosis. Available in English and German, the online presentation is offered by the German MS Society, Deutsche Multiple Sklerose Gesellschaft (DMSG) and AMSEL Association, a self-help and advocacy organization for MS patients in Baden-Wuerttemberg.
The History of MS gives viewers an excellent overview of the history of this neurological disease beginning in 1395 AD. It’s a very useful educational tool. For example, I didn’t know lumbar punctures have been used for diagnostic purposes since 1913 or that 1972 brought the use of visually evoked potentials to measure the speed of optic nerve conduction as a diagnostic tool for Multiple Sclerosis.
But even more than an educational tool, The History of MS offers viewers a broad perspective. And broader perspectives are important for caregivers.
First, a broad perspective puts your personal situation into a context. It’s easy for some caregivers to feel alone. Others, overwhelmed by the newness of a diagnosis, are confused and without foundation – especially if all they know about MS is the little that most people who are untouched by it know.
Second, because one hears, “there is no cure for Multiple Sclerosis”, the history of medical research is heartening. There is no cure now. But perhaps a cure will be discovered.
Third, having one’s perspective broadened opens one up to experience hope. I’ve considered many times that even if a cure is discovered, it still will not restore the lost neurological functioning. If my wife has lost the ability to walk or swallow, having a cure for MS will only stop those symptoms from worsening. But The History of MS projects into the future, too. It is not unreasonable to think that medical research will, as the presentation offers for 2020, discover a way to repair myelin.
Will myelin repair happen? No one knows. Could it happen? Again, no one knows, but that scientists are imagining it, gives me significant hope!
Website: The History of Multiple Sclerosis
Springtime in the South. I call it “Sneezin’ Season” because the pollen drives my allergies into hyperactive overdrive.
I take one sinus pill at 5:30 in the morning and a different medicine before I go to bed. These are the only medicines I take and they are different colors, different shapes, are in different packages and are dispensed differently. One is in a bottle, the other is sealed in individual packs. No way I could get them confused.
Last evening, I did.
And before I was through, I wasn’t sure if I had taken the proper nighttime medicine or had taken my morning medicine at night. I wasn’t even certain I had taken anything at all!
After scratching my head over what I had actually done, to avoid an overdose, I decided to take nothing (even though I thought I might not have had anything).
I was right. I really had taken nothing. I woke up sniffly and sneezy this morning. I simply confused myself into not taking my nighttime sinus medicine.
I told my wife about my self-inflicted confusion and she laughed. “Imagine how difficult it is to keep it straight when you take all the medicines I take!” She continued, “Sometimes I know I miss taking a medicine because I can’t remember if I’ve taken it or not. So I don’t because I don’t want to take too much. And I wind up taking nothing!”
I got no sympathy from her. Me talking to her about medication confusion is like talking to Noah about too much rain.
But she’s correct. It’s easy to lose track of what medicines one has taken. And the more there are to take, the more opportunities one has for confusion.
I’ve worked for more than 20 years at a children’s home. Our nurses monitor medication administration with documents called MARs (Medication Administration Records). Each time a child receives a medicine, he or she initials the MAR in the proper medicine/date/time location. It’s a record of exactly what was taken and when.
I have no doubt that a personalized Medication Administration Record book will be needed at my house in the future. But after last night, I’m not sure which of us will need it first!
Ampyra [am-PEER-ah], the brand name for a new drug named fampridine-SR, has been approved by the US Food and Drug Administration for the treatment of Multiple Sclerosis. The new drug is the first Multiple Sclerosis drug to enhance some neurological functioning for MS patients.
Dr. Andrew Goodman, chief of the University of Rochester Medical Center’s (URMC) Multiple Sclerosis Center, and his colleague Steven Schwid, M.D. who died in 2008, have studied the newly approved drug for more than 10 years.
Because most MS treatments are studied in terms of the way they slow the disease progression or prevent relapses, this medication required a new way of thinking about evaluating a Multiple Sclerosis medication. Because fampridine-SR restores some function, the study protocols developed at URMC were designed to measure functional outcomes. One study protocol measured the walking speed improvements over 25 feet.
According to the news release on the URMC web site, a significant number of study participants with Multiple Sclerosis increased walking speed by 25%, reported they could walk farther, climb stairs better and stand longer.
As with all MS drugs and therapies, there are significant potential side effects. The Ampyra Medication Guide offers these safety precautions:
- “Your chance of having a seizure is higher if you take too much AMPYRA or if you have kidney problems.
- Do not take AMPYRA if you have ever had a seizure.
- Before taking AMPYRA tell your doctor if you have kidney problems.
- Take AMPYRA exactly as prescribed by your doctor.”
During the last few weeks, I’ve been asked by caregivers (via this blog’s contact form) for help finding support for themselves in their local communities. I take these requests seriously.
In fact, it would be impossible not to because the caregivers include information about their particular needs. Perhaps it’s empathy, or a sense that we’re in this thing together, that always gives me a little sadness when I read requests for help. I so wish there were a way to eliminate Multiple Sclerosis.
While looking over this week’s emails, I realize that there are a couple of general pointers I can offer to caregivers who are looking for support in their local communities. I’ll summarize them here. They may not work for every MS caregiver, but the principles will hold true for most.
1. Find a religious community you feel comfortable associating with. It’s nearly a universal truth: those who seek relationship with God will have an interest in serving their fellow man. If you have lived in your community for a period of time and have participated in a local faith congregation, you know what I mean. Sunday School classes, Bible study groups, all sorts of small groups seek to minister to others in need. If you become comfortable enough with a local minister to be vulnerable and share your need for support, I think the chances are good that you may find exactly what you need.
2. Don’t limit your search to caregiver support groups related to Multiple Sclerosis. The social services department of many hospitals will offer support groups for caregivers in general, unrelated to a specific disease. Again, in their ministry to the community, many churches will offer caregiver support groups.
Can a non-specific caregiver support group be helpful for you? Will other group members be able to relate to your unique needs as a caregiver for a Multiple Sclerosis patient? Probably, yes. Much of the stress related to being a caregiver is unrelated to the particular disease. Much of it is caused by the emotional issues that arise, the interpersonal struggles that come between you and the person for whom you care, the general issues related to scheduling, managing medical matters, financial difficulties, juggling the parental roles of two when only one parent is able to be active. You get the idea.
3. Use the Internet. The quickest way to find a caregiver support group in your community is to use a search engine and search for: “your town’s name” “multiple sclerosis” “caregiver support group”.
For example, I would search for: Ruston “multiple sclerosis” “caregiver support”.
4. National and international Multiple Sclerosis-related organizations have chapters across the country and around the world. These are good resources for caregivers and patients. Take advantage of the connections they have in your community by visiting the web sites of organizations like National MS Society, Multiple Sclerosis Association of America, and the Multiple Sclerosis Resource Center.
5. Finally, don’t give up in your search for support. I cannot stress strongly enough the fact that if you do not take care of yourself, you will not be able to care for your loved one. Find the support you need, even if the search for help is a frustrating process. Among religious communities, non-specific caregiver support groups, the Internet and MS-related organizations, support for caregivers is available in many communities.
Hello Cancer, Goodbye Marriage: A new study shows that men are more likely to ditch their sick spouses, should really be titled, “Hello Illness, Hello Marital Stress”.
The authors, Barbara Kantrowitz and Pat Wingert, are reporting on an article in the November 2009 issue of Cancer, titled, “Gender disparity in the rate of partner abandonment in patients with serious medical illness“. Of course, the research article’s abstract begins by stating the obvious, “Life-threatening illness creates severe stress that may result in marital discord, separation, or divorce and may adversely impact treatment, quality of life, and survival.”
While the Newsweek summary of the findings focuses on couples where one partner has cancer, the original study is of 515 patients: 214 have a malignant brain tumor, 193 have a serious brain tumor with no nervous system involvement and 108 have multiple sclerosis. All were married at the time of diagnosis.
Because Newsweek has summarized the finding of the Cancer article, I’ll not do that again here. I’ll merely point out the obvious: caring for a spouse who has a severe illness is stressful and disrupts marital relationships. Unless one marries a partner who has already been diagnosed, it may be impossible to understand the implications for one’s future which is contained in the small phrase, “in sickness and in health”.
I may comment on this study again in the future because I think it describes a phenomenon that is so very important for multiple sclerosis caregivers to appreciate. And because I know it is possible to build a stronger marriage – even as the chaotic effects of Multiple Sclerosis bang against your marital relationship.
And as fascinating and accessible as the Newsweek article may be, the readers comments to the Newsweek article are worth studying all by themselves. People have a lot of emotion about the issue of spouse abandonment: http://www.newsweek.com/id/223079/output/comments
A few tears caught me off guard early this morning. They slipped down my cheek while I read, of all things, a newsletter from a neurological clinic.
If you know someone with Multiple Sclerosis, you’ll want to read the newsletter, too, and learn about the CCSVI research that is being done at the Buffalo Neuroimaging Analysis Center. (I’ll offer a link to the newsletter at the bottom of this post.)
The tears weren’t because the article described a brilliant research technique or procedure. Although, the research is incredibly significant. Nor were the tears because of fancy wordsmithing on the part of the author.
A simple thing happened.
As I read the article about CCSVI, I felt the feather-light touch of potential hope. My heart swelled and my brain shouted, “I want my wife healed!” And my eyes dripped with the hope.
Then, of course, there’s reality. It’s still too early to know whether CCSVI causes MS. Nor does anyone know yet what the best treatment will be if CCSVI is determined to be the cause.
While the research continues, here’s what I do know.
I know I hate that she self-administers injections without any obvious return. I hate that she’s more miserable when she takes the treatments hoping to forestall future decline, than when she doesn’t and risks accelerated decline.
I hate that she has trouble walking and can’t run, that words don’t pop out quickly the way they once did. I hate that she has no stamina and that she takes medicines without immediate reward. I hate that she wakes most days with intense headaches. I hate that she can never go as far she wants for as long as she wants.
I hate Multiple Sclerosis. I flat-out, passionately hate it.
And so with tears behind my eyes, I pray the researchers exploring CCSVI are close to finding answers to questions about the cause. And I pray real, effective treatments will follow.
I’m waiting with tears behind my eyes.
Newsletter link (PDF File): Buffalo Neuroimaging Analysis Center CCSVI Newsletter
On a recent evening, my wife and I were sitting in the living room, both of us reading and sipping hot chocolate before we ended our day. She, snuggled in a dark pink sweater and wrapped in her light pink afghan, caught my eye as I sat in my chair. She smiled.
“I enjoy the peace of our life together,” she said, “and I enjoy knowing I don’t have to worry about you leaving me.”
At first I thought she was talking in reference to the novel she was reading.
I raised my eyebrow. “I didn’t know you had ever worried about me leaving,” I offered.
“I did. Not a lot, but I did. It was right after I was diagnosed with MS.”
I remembered her telling me about a lady in her MS support group whose husband left her after they learned she had MS. At the time I thought she was simply sharing information. And I remembered (about that time) she also mentioned she had read in a book about spouses who leave their partners after learning of an MS diagnosis.
I’d like to think my commitment to her has always been so blatant and obvious that she never would have wondered about me leaving her. But then again, after she heard of a husband leaving his wife, after reading a chapter in a book about it and after living with me and my disbelief about the neurologist’s diagnosis, I can see how the fear of me leaving may have felt very real.
We’ll soon return to our honeymoon cabin to celebrate our 20th wedding anniversary. I’ve never considered leaving. She’s been the center of my world and has always held my heart. She’s God’s best gift to me and is His most constant and present expression of grace for me. Theologians may quibble about that, but I have no doubt that God loves me: He gave me her.
While I wish she had never experienced the fear of being abandoned, I think I understand the emotional dynamics. And I’m certainly glad she navigated her way through her fear and enjoys our relationship without concerns.
How did I miss her fear? I think it was because in those early months following her diagnosis, I spent a lot of time trying to do what guys tend to do most when they feel like they’re losing control … I tried to fix things. I focused so much on the practical things required for us to handle MS well that I overlooked her fear. I spent so much time being a cheerleader that I missed her concerns.
(Besides, if I’m learning to give shots in her stomach, buying books about MS, and bumping up my life insurance so she’ll be taken care of if I die first, how on earth could she think I’d consider leaving?)
While I made good plans for the future, I missed some of the important emotional content she was experiencing. I assumed she, like me, looked into the future and saw us always together. But it wasn’t so clear for her then. I’m glad it is now.
I know husbands can disappear when their wives are diagnosed with significant illness. (And some wives leave when their husband is the patient.) Just this past week, I heard from a friend about a woman who’s husband left her after she learned she has cancer. It happens often enough that it may even be normal for someone who is diagnosed with Multiple Sclerosis or an other chronic illness to wonder if her or his spouse is going to remember the “in sickness” part of the marriage vows as well as they remember, “and in health.”
Even partners in solid marriages can be fearful of abandonment. If you think you need to reassure your partner that you’re in it for the long haul, do it.
If you’ve paid attention to information on the internet related to Multiple Sclerosis this month, you’ve certainly seen references to CCSVI or Chronic Cerebospinal Venous Insufficiency as a proposed of Multiple Sclerosis.
“Chronic Cerebrospinal Venous Insufficiency” is the name given by Dr. Paolo Zamboni to the backward flow of blood into the brain due to constricted veins which should drain blood from the brain. Dr. Zamboni is the Director of the Vascular Diseases Center at the University of Ferrara in Italy.
It’s too early to know whether CCSVI will be found to cause Multiple Sclerosis, but researchers are focusing their attention on it.
A good introduction to CCSVI is found in today’s BuffaloNews.com in an article titled, “Study could hold key to MS treatment“. Dr. Robert Zivaidinov is the Director of the Buffalo Neuroimaging Analysis Center and the principal investigator of the first major study of Dr. Zamboni’s controversial new theory that blockage in the veins that drain the brain cause Multiple Sclerosis.
Dr. Zamboni’s theory is controversial because it stands against the current assumption that MS is an autoimmune disease. The treatment of choice if Zamboni is correct is apparently angioplasty of the brain veins. This has been referred to as ‘liberation therapy’.
Important things to remember
First, while one is tempted to become excited about a potential cure for MS, I recommend against it. A lot of theories and potential treatments have been ruled out. Many more are currently being tested. If you had become excited about each, so far, you would have been disappointed by each.
Second, remember that a “cure” for MS will probably not undo the damage already done to the brain by Multiple Sclerosis … whatever the cause. “Cure” simply means an end to the disease process and progression.
Finally, if Dr. Zamboni’s hypothesis is found valid after further research, I imagine some pharmaceutical companies may have some explaining to do.
Here are links to additional information about CCSVI:
MS Anger and Chronic Cerebrospinal Venous Insufficiency (with Video and Diagrams)
Today’s Herald Tribune in Sarasota, Florida, offers an excellent story of one couple’s journey of love. The subtitle, “A Manatee County man’s devotion to his wife seems limitless“, summarizes the story of Oliver and Phyllis DeSofi. Mr. DeSofi is a committed husband and MS caregiver for his wife.
Don’t miss this story … “One couple’s journey of love“.
MultipleSclerosisSucks.com, subtitled, “How to Suffer from a Chronic and Incurable Disease without Appearing to be a Total Loser”, is a site MS caregivers should revisit from time to time.
You should probably go no more than a year between readings of “The MS Perspective Kit“. It offers a unique way to help one understand what living with Multiple Sclerosis is like. The lessons involve such things as rubber gloves, a woman’s high-heeled shoe, a roll of duct tape, and a large pot of coffee.
Through a healthy dose of humor, the author (who remains anonymous) does an excellent job of sharing the experience of an MS patient in terms that make the experience real for others.