A Site You Should Check Out

I received this from Stuart. I hope you will check out his site. It is very useful; kind of a catch-all for all the latest MS news.



Whether an MS patient, a caregiver or a medical professional:
If you are not yet receiving the weekly MS e-Newsletter, titled "Stu's Views and MS Related News", or having access to our website and MS blog, then please consider registering after reading the information found below:

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MS Views and News
http://www.msviewsandnews.org
Our Mission: We are dedicated to the global collection and distribution
of current information concerning Multiple Sclerosis. In collaboration with
other organizations, MS Views and News uses state-of-the-art communication
channels to provide information for those affected by, or interested, in MS.
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Enter a place where information and knowledge is provided for anybody affected by Multiple Sclerosis. This includes the patients, caregivers, medical providers and/or anybody just interested in having availability to MS information.



On our website's homepage (http://www.msviewsandnews.org), you will find a link to register for our website and weekly publication of "Stu's Views and MS Related News", an MS e-Newsletter.



Other features of the MS Views and News website includes:

* Our MS Resources sections of many other Multiple Sclerosis organization weblinks and a video library.

* Find our articles from Ask the MS Nurse and Occupational Therapist. There is a learning .pdf on Achieving Wellness.

* Additionally, click the link found on the left side of homepage to view our Library of MS Archives (http://www.msviewsandrelatednews.com/blog5)



Important information is found within each sponsor Information Ad found on this site. Click each to view beneficial information.



A Must see is our MS BLOG (http://wwwmsviewsandrelatednews.blogspot.com/), where you will find easy-to-read MS articles. Thru this blog you will have access to many other MS informational resources and organizations as well as other MS bloggers. Find the category listings and other links found on the right side column of this blog to help you to better understand Multiple Sclerosis.





On the MS Views and News website, you will find MS Facts and information

in more than (11) different languages. (This is beneficial and much needed

for MS patients or family members/caregivers who don't read or fully

understand English, but need Multiple Sclerosis information).



Once you are registered, you will begin receiving our weekly MS e-Newsletter



MS Views and News, Inc., strives to keep the MS patient and caregiver,

informed and up-to-date with MS News and Information





If you have any information, questions or comments, please send an email to Stuart Schlossman (stuartschlossman@bellsouth.net)





As a Reminder:

I am not authorized to answer specific questions regarding medical diagnosis or treatment.

Should your inquiry deal with such specifics, you should contact a physician or other qualified healthcare provider. If your inquiry is of a more general nature, please feel free to contact me, by email.



Warm Regards, Stuart Schlossman




revised – February 2009

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

MS Weekend

GH and I are leaving this afternoon to travel to Fort Smith, AR. We are participating in a National MS Society workshop for couples dealing with multiple sclerosis, titled "Eight Hours to Lifetime of Relationship Satisfaction." Here is a link to the info.

I think this will be fun and informative. I even convinced my parents to join us there. Although it may be a little weird if the conversations turn to more intimate matters. ;)

On an unrelated note, I am on day three of my Lenten journey to stop smoking. I have not had a cigarette since Tuesday night and I have yet to kill anyone. I have been using nicotine gum to help with the cravings, but OMG, I have been eating everything that isn't nailed down! I did OK on Wednesday, because I was fasting Catholic-style (which means one full meal, two smaller meals and no snacking in-between). But yesterday? Frightening. Please send prayers, positive thoughts, whatever you subscribe to, for me during this test of willpower.

The thing that makes it most difficult is that GH is still smoking, although I hope he will quit soon. It would make things much easier!

I will post about the seminar upon my return. Have a great weekend, faithful readers!

Peace,
Kelley