Walk MS

Spring has arrived and all over the country, MS chapters are holding their annual Walks. The Tulsa Walk is April 4. If I had more advance notice, I would have formed a team, etc. However, with short notice, I decided to volunteer (I'm not up to a long walk, although I am ambulatory); I think I'll be in the MS information tent.

I hope to meet some of the staff of the OK Chapter and get more info about becoming a peer for the newly diagnosed. GH and I also want to become active in a support group.

If you can spare a few bucks (even as little as $5), please help me in my fundraising efforts. You can donate directly via my personal page.

If you happen to be at the Tulsa Walk, please find me and say hello!

Peace,
Kelley

Sounding Off About Montel's Appearance on Oprah

I wanted to write this earlier, but I decided to wait until I had cooled off a bit. I was quite disappointed with the misinformation passed on during this show. I hope some of you brothers and sisters will join me in writing to Oprah to express our disappointment. That is, if you agree with my take on the show.

Although Montel's crying was touching and perhaps pulled at some heartstrings, somehow it felt very hollow to me. I felt his main purpose on Oprah was to sell his book. Which is fine. But do not try to sit there as if you are the spokesperson for everyone with MS. You do not speak for me! And you definitely do not speak for me if you are feeding the public incorrect information.

Case in point, Montel stated that there are 1.5 million people in America with MS who each suffer differently with the disease. Yes, everyone suffers different symptoms, but 1.5 million people? According to the National MS Society website:

In the United States today, there are approximately 400,000 people with multiple sclerosis (MS)—with 200 more people diagnosed every week. Worldwide, MS is thought to affect more than 2.5 million people.

Granted, these numbers are not the most reliable. There is legislation in the works to remedy this. However, I believe 1.5 million is a bit of an overestimate. OK, so the number of people in the U.S. with MS is questionable, but why am I so aggrevated? Read on.

Dr. Oz says suffocation caused by chest hugs is the leading cause of death for people with MS. Another leading cause? Suicide.

Excuse me? Suffocation?! Where did they get that figure? It is my understanding that only those with extremely advanced cases of MS die because the diaphragm does not cooperate. Way to scare the crap out of anyone watching who has been recently diagnosed! Oprah herself even said that Montel was battling a "life-threatening" illness. Uh, no. MS is not life-threatening. It is a chronic illness that must be managed, not beaten. At least that is what I need to believe right now to keep living. I was so outraged by the above statement that I had to do some research on my own. I feel vindicated, because I found that:

Very rarely [emphasis mine], there is a rapidly progressive course leading to death. MS itself is almost never the cause of death [again, emphasis mine]; death results from accompanying complications or infections. Generally speaking, the life expectancy of those with MS is at least 75 percent of normal. (from Life With MS)

Also, in the Journal of Neurology, Neurosurgery, and PsychiatryI found a study regarding survival and cause of death for MS patients. I could not get access to the entire article (I'm cheap), but the abstract had the following information:

Median observed survival time was 38.0 years from symptom onset. Mean age at death was 65.3 for women and 65.2 years for men. Mean age at death in patients dying from MS-related causes was 62.5 and 69.3 years (p<0.001) MS-related causes had a younger age at disease onset (32.5) compared with those dying of unrelated causes (36.8 years) (p = 0.01). Cause of death was related to MS in 57.9% and unrelated in 42.1% of individuals. In 27% of patients, "MS" was absent from the death certificate. The most common cause of death was respiratory disease (47.5%). The standardised mortality ratio was 2.79 (95% CI 2.44 to 3.18) so that MS patients were almost three times more likely to die prematurely relative to the general population.

I believe I am correct in assuming that yes, MS does shorten your life expectancy somewhat, but you are just as likely to die of heart attack, cancer, stroke, getting hit by a bus, as you are of dying from MS complications.

I only wish Oprah had an MS specialist or someone from the National MS Society on the show to educate the public on the real facts about MS. I also wish that the audience had seen other facets of MS, not just Montel's experience. The public should see a normal person with normal income trying to live with the disease. We don't have gyms in our homes or personal trainers. Many cannot afford the disease-modifying drugs that Montel feels are a "reminder" that he has a chronic disease. That "reminder" is a lifeline for me.

Is some MS education, even incorrect, better than none at all? Please post your thoughts.

Peace,
Kelley

Random Ramblings

The couples seminar in Arkansas was really eye-opening. It is part of the Relationship Matters course from the National Multiple Sclerosis Society. When we arrived at the hotel, GH and I were informed that we had won the random drawing for an upgrade, at no additional cost to us, to the Presidential Suite! Awesome! The suite had a sitting room, kitchen, bedroom, two bathrooms and a Jacuzzi. Wow! We had a nice relaxing time in the hot tub.

The seminar itself was to teach us about peaceful conflict resolution. At one point, the couples were divided into two rooms, those with MS and those who were the spouse. Of the ten or so couples, the female of each couple had MS and the males were the caregivers. Surprising. GH told me that the conversation in the spouse room could have been the script of a movie scene, in that these men really let down their guard and spoke of some very emotional subjects. My dad was even moved and he's usually the stoic one who makes wisecracks to lighten any emotion-laden situation.

Bottom line, if you can attend a workshop of this nature with your partner, I highly recommend it. Although GH and I have our disagreements, we learned that we communicate much more than the average couple. We also learned that our life is a picnic compared to others dealing with MS. But we already knew that, and we are so grateful that everything is okay right now and we are realistically prepared for whatever may come our way.

New subject. GH and I are throwing a joint birthday party for our dads this Saturday. His dad will be 90 on St. Patrick's Day and my dad turned 70 last Friday. We will probably have about 50 people through the course of the day. We spent last weekend shopping, cooking and housecleaning for the party. Although I took everything at a slow pace once we returned from shopping, I was grounded for about 48 hours afterwards. I didn't even do any of the heavy lifting, as GH dusted the ceilings and ceiling fans, shampooed the carpets and other difficult tasks while I went through some of my "piles" of stuff to reduce clutter. I woke up on Sunday fully intending to go to Mass, but my legs were heavy AND cramping, so I turned off the alarm and stayed in bed. The most productive thing I did was make a ton of spaghetti sauce for baked spaghetti while GH sliced the brisket he had smoked the day before.

I am happy to have this party, as I love both of these men dearly. GH's dad will probably move in with us in the next 6-12 months, although he is still very independent and still drives. However, he gets lonely, as he is still getting used to being a widower.

Here's the thing that really pisses me off about other people. Why are some people so selfish? A particular person in GH's family kept saying he wasn't sure if he would be able to come, as he has to work. We gave him a month's notice about this party! This is someone who we did not ask to help with the expense of the party, just show up to make GH's dad happy. That's all. It's only a four-hour drive. GH and I have gone to that town and back home in one day to fulfill family obligations before, so why can't he? And others in GH's family have not even bothered to reply to let us know if they will or will not show up. I find that incredibly rude. In short, they are all acting like a bunch of spoiled brats who can't part with any of their precious time to do something nice for someone who loves them dearly. I makes me so effing angry!

That's another issue. Pre-MS, I was always a very patient and tolerant person. Seriously. Now, my fuse is incredibly short and I have no tolerance for behavior like this. My question is, can this be the "MS personality" that I have heard/read about? I witnessed this to a much worse degree with my mom who eventually went into a horrid clinical depression. Or, am I just getting older and crochety? ;) Any comments are welcomed!

Peace,
Kelley

What's All the Fuss About Vitamin D?

After reading quite a bit about vitamin D deficiency in those of us with MS, I decided to ask for testing on my vitamin D levels at last week's physical.

The results are in! The "normal" or "healthy" measurement of Vitamin D is a number from 30 to 80. Mine was 9. Therefore, I will stop by the pharmacy on the way home from work to pick up my prescription-strength vitamin D pills. The doctor was not only concerned with the MS aspect of this, but also bone density issues.

The fact that I had to specifically request this screening really irks me. One would think that a medical professional would know that once a person is diagnosed with MS, the vitamin D levels should be screened. This is not news. Articles were published regarding this topic back in 1984.

Nonetheless, I encourage all of you dear readers to get your vitamin D levels screened at your next blood-letting. You are your best advocate!

On another note, all of my other test results were positive. With the exception of elevated LDL cholesterol levels. Not in a danger zone yet, but with my family history (both of my parents go to the same PCP as I do and both have high cholesterol) the doctor would like me to make a few dietary and lifestyle changes before we go the medication route. I read that giving up smoking could help in that area, too, so here's to one week of being smoke-free! Yay!

How many of you in the MS blogosphere have been tested, what were the results and are you on supplements? Inquiring minds want to know!

Peace,
Kelley

It's Awareness Week, Kids!

Please promote to your friends and family that this is National MS Awareness Week. Check your local chapter for events in your area this week. I would love to attend the OK Chapter "Storm the Capitol" day (my terminology), but I have to do that pesky work thing.

Since I'm probably too late to organize a Walk or Bike team for this year, I will focus my energy on next year. Don't be surprised if I hit you up for a donation!

Peace,
Kelley