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

“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.”

“Oh.”

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.”

Caregiver’s Tip:

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.

“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:

Study could hold key to MS treatment

New York researchers testing MS theory

MS Anger and Chronic Cerebrospinal Venous Insufficiency (with Video and Diagrams)

National MS Society Article with Questions and Answers

Don’t miss this story … “One couple’s journey of love“.

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.

Resource

MultipleSclerosisSucks.com

Of particular interest to Multiple Sclerosis caregivers will be the Family Caregiver Alliance Fact Sheet on Multiple Sclerosis. In addition to common information about MS, the fact sheet includes important information about cognitive problems caused by MS and their impact on caregivers.

For example, “About 50% of people with MS will develop some cognitive problems. Symptoms include a slowed ability to think, reason, concentrate or remember. Only 10% of those who develop cognitive problems experience symptoms severe enough to interfere with daily activities.”

The factsheet reports the most common cognitive problems include:

• Memory recall, particularly remembering recent events.
• Slowness in learning and processing new information.
• Difficulty with reasoning, such as analyzing a situation, making a plan and follow through.
• Poor judgment.
• Impaired verbal ability, such as slowed speech or difficulty coming up with a needed word during conversation.

While the FCA Factsheet on Multiple Sclerosis will interest MS caregivers, the entire web site of the Family Caregiver Alliance is an incredibly helpful resource for caregivers. Visit http://www.caregiver.com/ and learn more!

PubMed Central exists by Congressional mandate. Any researcher funded in whole or in part by the National Institutes of Health must provide the resulting manuscript to the NIH for publication electronically. Concerned that so many journals were providing free abstracts of research but charging fees for access to full journal articles about research which had been paid for with public funds, the NIH adopted an open access policy.

What does this mean in real terms? It means you can read the full text of 42,807 journal articles related to Multiple Sclerosis.

Here’s the link: http://www.ncbi.nlm.nih.gov/sites/entrez?db=PubMed

In the future, World MS Day will be held on the last Wednesday in May. This is an important effort and I expect among the results will be increased attention on Multiple Sclerosis. Visit the World MS Day website and see what may be going on locally in your area and around the world! You’ll also find free downloads and information about MS.

As I recall the conversations I overheard during the event, I noticed common themes. In order of frequency, first was the concern about doctors who do not listen, second was a concern over medications, and third was the common concern about the cost of medical care. With good reason, these three themes seem to be common undercurrents when patients gather.

I’ve said it before: every person I’ve met with MS has been tenacious, determined and tough. They make most of us without MS seem like whiners. While they may be slowed physically, I’ve not met anyone who let their MS symptoms or their experience of Multiple Sclerosis stop them.

It’s sadly ironic to me, then, that the most common complaints I heard were about issues that are out of the patients’ direct control and are related to medical care: doctors who will not listen, medications and side effects, and the cost of care.

Assuming the stories of helpful doctors who made housecalls and treated patients like they were extended family are actually true, the medical professional has taken a left turn somewhere along the way. I know that’s a generalization, but it seems to be the experience of many.

When the practice of medicine as a profession is turning into a business for profit it must become bottom-line focused. The doctor can’t listen because she has too little time, medications are a two-edged sword solving one problem but causing others, and costs are structured so shareholders receive the best returns at patients’ expense. That’s the world we live in.

The Value of an MS Support Group

The issues I overheard the group members share are actually one of the many reasons an MS Support Group is a good thing for patients and caregivers. A good support group is an oasis where one can relax in the presence of others who share their experiences, advice, knowledge and (most importantly) their support.

Caregiver Tip: Become involved in an Multiple Sclerosis Support Group. It may be one of the wisest things you and the person for whom you care do.

I watched her in the kitchen from my chair in the living room as she literally had to think to slowly put one foot in front of the other to walk across the kitchen. (I need to write about how tough and tenacious she and other MS patients I know are in their fight to get things done. I’ve never met an MS patient who was a quitter.)

I told her yesterday that I think we need to visit her neurologist again before this leg problem gets too out of hand. It’s been a couple of years since she’s had an exacerbation so, on the average, it’s time for one. We talked and I mentioned I thought her doctor would prescribe the steroid IV for a few days. She said she dreaded it because of the effects that follow it for two or three weeks.

Easter is upon us so I took my daughters dress shopping today. As time goes by, either I’m getting better at it or they’re growing more patient with me. My youngest walked out of the dressing room in something I thought was too low on top and too high on the bottom. Just as I finished telling her to bend over and touch her toes, a friend walked up and said, “Rick, that is so 70’s. That’s a cute dress.” And that sealed the deal for my daughter. And when we returned home, my wife loved the little dress, too.

Anyway, our shopping done, we were getting in the minivan when my wife called.

“Guess what!” she exclaimed.

“I don’t know. What?” I asked, wondering why she sounded so excited.

“For the last two hours my legs have been fine! I’m walking without my cane!”

Just like that.

So what happened? Was it a random symptom? Is this just momentary relief or will her legs be fine now? Does she need to see the neurologist? I don’t know. I can’t answer any of these questions. I do know she seems more steady this evening and while she couldn’t walk around the block if she had to, I can tell she is walking much better.

This random symptomology is one of the really weird things about Multiple Sclerosis. Unlike symptoms of other things, MS symptoms often seem random. I prefer a more orderly, Newtonian symptomology where symptoms are the consequence of action. Hit your thumb with a hammer and you feel pain. Eat too much spicy food and you experience indigestion. MS isn’t like that.

Part of the reason is that drugs are made by corporations that must return value to shareholders. To do this, they must sell drugs. To sell drugs, pharmaceutical companies have paid doctors to promote their drugs. The money paid to doctors is an expense which increases the cost of drugs. That’s the business.

One step beyond the business, though, is corruption. At least one drug company has pleaded guilty for paying doctors to recommend drugs for diseases for which the drug was not approved. And there are new allegations the drug company may have known the drug was not even effective against the diseases for which it was being promoted.

That’s all background.

Pfizer Inc., the world’s biggest drugmaker and the company that created Neurontin, has said it will begin (next year) disclosing all payments of more than $500 it makes to doctors.

According to the MSNBC article, “Pfizer to disclose payments to doctors next year“, Pfizer is doing this “after introduction last month of legislation to require such disclosures, and revelations of astronomical payments to some doctors that were not revealed to universities and hospitals that employed them.” In other words, this is an example of another corporate entity becoming interested in transparency only after regulatory requirements change.

While politicians suggest this is a good move because there is so much public money that passes to drug companies, I believe the real value in this is that it makes transparent the relationship between a doctor and the medications the doctor prescribes.

Here’s what I like about it: suppose a doctor makes a presentation to an MS support group and talks extensively about one of the MS injection therapies and only mentions the others in passing.

Don’t you want to know whether the doctor is focusing on the one medication because he or she finds it really is the best medication and not because he or she is being paid to give a speech? As I wrote in September of 2007 in “MS Medication, Insurance Coverage and 2 Ounces of Gold“, I sure want to know!

Here’s why Pfizer’s decision to report these payments to doctors is important. Pfizer pleaded guilty in a legal settlement related to an accusation it had illegally paid doctors to prescribe Neurontin for uses not approved by the FDA. Pfizer paid penalties of $430 million for paying doctors to prescribe billions of dollars of Neurontin to patients with diseases for which there was no evidence of Neurontin’s effectiveness.

Newsweek has a good article that summarizes the Pfizer/Neurontin legal issues: “Pfizer’s Headache: Lawsuit charges drugmaker was deceptive about Neurontin.”

Pfizer’s behavior offers the clearest example of why transparency in the doctor/pharmaceutical company relationship is important.

Interesting to me is that while Pfizer paid $430 million (about one quarter’s sales of Neurontin), no physician was charged. I think this must be why: Doctors have to be able to trust the information they receive from pharmaceutical companies. Certainly, no physician with integrity would prescribe or promote a drug they did not believe to be effective.

Caregiver Tip: The quickest way to get to the point of this issue with a doctor about a prescription medication is to ask, “Do you receive money from the drug company that makes this medication?” Once that is on the table, you can then talk about whether or not the medication is being prescribed because your doctor really does believe it will be effective.

Today, I’m changing the tagline to something much more positive and more reflective of what the MSCaregiver blog has become: “Tips and Info for Multiple Sclerosis Caregivers”. The content will not change because of the new tagline. Nor will anything else about the blog change. I just realized I’m tired of the “can’t make it better” notion.

In fact, that initial phrase, “doing your best when you can’t make it better,” is the antithesis of what caregivers do. We do make it better. I know my wife is healthier and happier as a consequence of me doing my best to make things better. Her life is better.

New idea! The tagline will be, “Doing Your Best Does Make it Better“. I’ll try that for a while and see how it feels.

Today, the CBS News Early Show presented an interview with Edwin McClure, a young MS patient, who participated in a Northwestern University trail which involved using a patient’s own stem cells and chemotherapy. McClure’s family says he is “cured”. The researchers describe the trial as a treatment of symptoms. Either way, the results presented look very promising. This is definitely a study to keep our eyes on.

Here’s a link to information about the study on the ClinicalTrials.gov website: http://clinicaltrials.gov/ct2/show/NCT00273364

(PhysOrg.com) — A delay in traffic may cause a headache, but a delay in the nervous system can cause much more. University of Missouri researchers have uncovered clues identifying which proteins are involved in the development of the nervous system and found that the proteins previously thought to play a significant role, in fact, do not. Understanding how the nervous system develops will give researchers a better understanding of neurological diseases, such as multiple sclerosis and Charcot-Marie-Tooth disorders.

Burnout – a state of mental, physical and emotional exhaustion — leaves people feeling hopeless about the future. While the focus of the article is on workaholism, the tips from therapists on staying healthy in stressful environments are perfect for caregivers.

For example, one tip is, “Nurture your spirit. Do something just for yourself, whether it’s listening to music, exercising, getting a massage, reading or writing in a journal.” It’s a quick read that may remind you that putting on your own oxygen mask first is important.

Caregiver Tip: Remember to keep yourself in good health, clear minded, and emotionally healthy. You cannot care for others if you do not care for yourself.