Author Archives: Jen

Website that Focuses on MS Technology

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I recently received this email about a website that connects MS patients with technology solutions to better adapt to daily living. Check it out:

Hello Jen,

My name is Ellen Kampel – I work for Microsoft and am a person living with multiple sclerosis (MS). I am reaching out to you on behalf of a great program in which I’m involved: The MS Technology Collaborative. The Collaborative is a partnership between the National MS Society, Microsoft and Bayer HealthCare Pharmaceuticals, dedicated to connecting people living with MS to technologies that can help them overcome MS-related challenges and live better.

The goal of the Collaborative is to provide technology solutions for people living with MS, many of which are affordable or free. Our Web site, www.MyMSMyWay.com, offers an online interactive tool called “Snapshot” that prompts users to answer a series of questions, after which they receive a customized report with technology solutions specific to each person and his or her particular challenges. We also offer technology tips submitted by members of the MS community, a monthly column that I write with a leading accessible technology expert, and information on the types of technology available.

Lastly, I wanted to share with you a bit of a preview about our newest and most exciting initiative – we’re in the process of building a free online game that addresses the cognitive challenges of people living with MS. The game will provide cognitive exercises that target some of the main cognitive challenges faced by the MS community. It’s being developed in consultation with individuals living with MS as well as medical experts who specialize in researching and treating this condition.

With so many people finding strength and courage through your blog, I thought that both you and your readers might be interested in the resources available at MyMSMyWay.com.

I’d also like to invite you to be one of the first to preview our game this spring. Do you think that you’d be interested in reviewing the game prior to its official launch and providing your feedback? If so, please let me know. I’d love to have you involved in our efforts.

Thanks for your time, and I look forward to hearing from you soon.

Best,
Ellen Kampel

Posted in MS and Assistive Devices, News / Research

Lift Me Up

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I’m usually not one for religious music (this song is considered part of the Christian Rock genre), but I believe it has a message that transcends ideologies:

Posted in Videos

Facebook Application Lists MS Walk/Bike Events

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I recently received this email about a new Facebook application that helps readers find MS walking and biking events. It is for current Facebook users, although starting an account is very simple. Fellow MS bloggers as well as MS communities can be found on Facebook.

Jen –

My name is Brian Reid and – in the interest of full disclosure – I work with Serono on their MS LifeLines program. Last week, they launched a Facebook application that is designed to help people find National Multiple Sclerosis Society-sponsored walks and bike rides and connect with others who are also participating. There’s no commercial subtext here – the intent is to raise awareness.

The application is online here: http://apps.facebook.com/mschampions.

I know that you’re already involved in an event, and we want to make it as easy as possible for everyone who participates (or who wants to participate) to plug into the community, so anything you can do to share with your readers would be appreciated.

Thanks for the great blogging,

Brian Reid

Media Director | WeissComm Partners

P 703.402.3626 | Skype brianreid

“Healthcare Agency of the Year”

www.wcpglobal.com

Posted in Fundraising Info, News / Research

MS and Low-Dose Naltrexone (LDN)

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For the past several years there has been a bit of a cult following with a drug called LDN (low-dose naltrexone) . While writing at Suite101’s health site, I encountered several readers with MS who promoted the drug in comments sections, as well as a fellow health writer (with hyperthyroidism) who valued and wrote about its merits. There wasn’t much known about the drug then except that it wasn’t FDA-approved for multiple sclerosis patients and it wasn’t clear whether the drug could actually slow MS disease progress. Just recently I read an article from the National Multiple Sclerosis Society’s Momentum magazine with a current view about LDN. Here is what Dr. Allen C. Bowling, a neurologist and professor at the University of Colorado-Denver and Health Sciences Center, reports:

What is Low-Dose Naltrexone?

Dr. Bowling addresses the fact that LDN is getting a great deal of coverage on the internet, including various websites that are run by low-dose naltrexone organizations. Although LDN is reported to help patients with multiple sclerosis, it is considered a CAM or complementary and alternative medicine because it has not been extensively tested for effectiveness in patients with MS. Currently naltrexone is approved for opiate and alcohol addiction, with patients being treated with doses of roughly 50 milligrams/day. Patients who take LDN for MS use about 1.5 to 4.5 milligrams/daily, hence the name.

Naltrexone, which may increase endorphin productivity and increase the body’s sensitivity to it, could very well reduce pain and inflammation, as well as stabilize overall mood. It also may decrease the formation of free radicals (considered harmful) and thus protect nerve cells from injury.

LDN Studies, to Date

Not a great deal of low-dose naltrexone research has been done. Here are some recent studies and their results:

  • Two small, preliminary studies of LDN for EAE (experimental autoimmune encephalomyelitis which is an animal model of MS) found that LDN decreased nervous system inflammation, immune cell activation, and possible disease severity. These studies were presented at the annual meeting of the European Congress for Treatment and Research in MS (2008.)
  • A small clinical trial on humans with MS (reported at the same meeting this past year) was conducted at the University of California-San Francisco. 80 people were treated for 8 weeks with either LDN or a placebo. The LDN showed no effect on physical functioning, but it showed an improvement in some patients’ mental health and pain symptoms.
  • 40 primary-progressive MS patients in Italy were studied in 2008. LDN was administered for 6 months, although there was no placebo-treated control group for comparison. Patients noted an improvement in spasticity, but no effects on depression, fatigue, or overall quality of life. Some patients reported a worsening of pain. Only one patient showed a neurological worsening during the treatment.

What Does this Mean to MS Patients?

Dr. Bowling stresses that the preliminary studies still don’t show enough evidence that LDN effectively reduces multiple sclerosis inflammation/nerve attacks in humans and thereby slows MS’s progression in patients. The studies are a good start in the discovery of what low-dose naltrexone is capable of, although the studies on EAE were done on animals and not true MS patients, and the other studies were brief and the results were conflicting.

Questions Dr. Bowling—as well as other neurologists– still have:

  • Does LDN truly and consistently decrease the severity of MS symptoms?
  • Does LDN slow the progression of relapsing and/or progressive MS?
  • Is LDN safe to use on a long-term basis?
  • Does LDN interact with conventional MS medications?

In the meantime, low-dose naltrexone continues to be considered a complimentary and alternative medicine and is being further studied to determine its ability to slow disease progression (like other disease-modifying meds), its long-term safety, and its ability to effectively treat symptoms. At this point, many MS patients have been able to acquire it for “non-MS” use.

For further reference:

Bowling, Allen C, MD. “Low-Dose Naltrexone (LDN): The ‘411’ on LDN.” Momentum, the Magazine of the National Multiple Sclerosis Society. Spring 2009, pp 44 – 46.

Posted in MS Medications, News / Research

MS and Identity

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Joan at A Short in the Cord recently mentioned that she sought the guidance of a life coach through the Multiple Sclerosis Association of America. First of all, I didn’t even know that the hub of this association exists right in my area: Cherry Hill, NJ. Secondly, I didn’t know that anyone associated with MS was available to instruct us on what to do NEXT. I’m presently considering enlisting their aid.

I’ve wrestled with identity problems for the past five years or so, as I stopped working in my fast-paced health career (radiology) and began searching for part-time, low-stress work. I’ve had the advantage of my husband’s income to keep us from having to move in with one of our sets of parents, but in today’s world there are always more and more monthly bills, taxes, and unexpected medical expenses. So the advantage has in no way been an excuse for me to sit back and do nothing. To this day we still need whatever I can contribute (social security payments et al), and then some. I always wonder about stay-at-home moms (or dads) who elect to do this.

The search for my new career— and therefore a big piece of my identity— has been ongoing. What can I realistically do? Will I have to settle for something “just to pay the bills”? In the past (pre-social security days) I did online customer service work to help us stay afloat. But I like the right to the “pursuit of happiness” that lies within our Declaration of Independence. I’m an independent, career-minded girl who wants to pursue something fulfilling and joyful. My quest within the past five years has led me to part-time library work, which has made me so happy and fulfilled that I’ve questioned why I ever became an ultrasound tech in the first place. Like finding the perfect mate: there is a seamless fit. But because of my own long relapses, maintaining the identity of a library staff member has become all but impossible. In the past year I’ve returned to a volunteer status with our library system. It’s much safer, both physically and emotionally. I can live with it because I still identify as one who makes a difference in this public service realm. That’s what’s so great about libraries: there are few boundaries between the ranks.

On the home front I’ve sought writing opportunities, since writing is one of my biggest passions. I’ve identified myself as a part-time freelance writer who specializes in health topics. Seems to encompass my areas of interest and experience. But lately I’ve found myself looking to branch out into other areas of writing because, to be honest, I’m burning the candle at both ends with the health writings: this site and and the MS Life column. I love both, but I don’t want to soley identify myself as an MS writer, much as I don’t want to soley identify myself as an MS patient. So I’m now in active pursuit of non-health writing work. It’ll come; I just need to be more patient.

In my personal life I have a hard time identifying with non-MSers. In my safe little haven I can imagine that I’m normal and can do everything everyone else can, but when I get out into the world with those who don’t think twice about having kids or careers or non-stop days, I am sorely at a loss to identify. Reminds me deeply that I have MS and that I am at home, tenaciously looking for my own purpose. In the same vein, I cannot always identify with other MSers because we are all so different in backgrounds, disease statuses, and present situations. Although I have an easier time relating to this second group of folks. We have the common thread of navigating the frightening neurological unknown.

I haven’t a clue whether I’ll identify myself as a mother, as a successful and fulfilled writer, or as a personally-fulfilled MS patient in the near future. The road is long and winding and all aspects of life are never completely identifiable.

Posted in MS and Emotions, Working/Volunteering Info

MS Awareness Week: March 2 – 8, 2009

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The National MS Society (in the United States) hosts an MS Awareness Week to raise consciousness about the disease. Many activities— already in motion but spotlighted during this time— are open to anyone who’d like to get involved. This year’s theme is MOVE IT:

Walk MS: the annual walking event that recruits thousands of participants who raise pledges for the Society. People participate as individuals, as family and friends groups, and as corporate groups.

Bike MS: this ongoing event recruits cyclists— both novices and Olympic-worthy athletes— for routes of varying difficulties. Again, pledges are raised and teams can be formed.

Volunteering: chapters need volunteers for the above-mentioned activities (I’ve volunteered several times for both and have enjoyed the camraderie and the new people I’ve met) as well as in-office support for local chapters.

Advocating: MS advocates are sought to push for government funds for MS research. Anyone can advocate.

Donating: donations for the MS Society are sought year-round.

Make Your Mark: write on the “MS Wall” and leave your personal note.

Post a Video to YouTube: make your own statement and post to the Society’s YouTube page.

****So much more: check out all the other ways to spread MS AWARENESS this week. And remember to be AWARE year-round.

Posted in Fundraising Info, News / Research

Keeping an MS Medical Journal

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When I first developed multiple sclerosis, it was so vague and weird that I couldn’t quite describe the sensations to others, particularly to my family and friends. How do you explain fleeting neurological symptoms that sound like you’re having a stroke? Explaining to my then-primary doctor what was going on seemed even more challenging: he wanted to know WHAT kind of numbness I had. Did it feel like pins-and-needles or did the area lack ALL feeling? When did it come and when did it go? Was it restricting any of my activities and did it ever become painful? At this point I began a medical journal where I logged symptoms, durations, my feelings about these symptoms, dates, things that worsened these symptoms and so on. This journal has become my guide to my history with multiple sclerosis and a basic reference that I bring along with me to my doctors’ visits.

Keeping an MS medical journal is easy. Here’s what I find helpful:

Narrow a Medical Journal Down to One Topic

If you have more than one ailment— many of us do— then separate the problems into different journals within a notebook. Keep MS information in one area and (for example) low blood sugar, or hypoglycemia, in another section. Sometimes it’s difficult to tell where symptoms are coming from (particularly in the case of multiple autoimmune diseases) but if the illnesses are unrelated try to keep them unrelated in the journal to focus on what is precisely going on with each illness.

Be as Specific as Possible

I look back at my medical journal and my memory is jogged: I had this episode of vertigo at this point in time, I took this medication, my neurologist said such-and-such, the vertigo tapered off at such-and-such time. I would never remember this on my own and I’m glad that I took such descriptive details. Referencing entries with specific dates, durations, performed tests, my feelings about the symptoms, what medications I took, whether said medications helped or did nothing, and my doctors’ opinions has helped me to keep a mental idea of my MS journey thus far. It’s still of course mysterious, but I feel a little more in control of what’s going on.

Regularly Update Your Status, Including the Good Times

Being well is a point of reference within the journal. It’s important to document this as part of the journey. Just checking in every few months keeps the journal updated and current.

Record Feelings about the Attacks and the Symptoms

I was able to see a pattern of anxiety and depression which I shared with my therapist because of my noted feelings within my medical journal. The psychological elements are definitely a part of the greater whole.

Remember to Bring the Medical Journal Along with You to Doctors’ Visits

This journal aids not only you but your treatment team in better knowing your disease history and present status. You can also immediately record what your doctors say, requesting proper spellings and exact information. Sometimes it all sounds like mumbo jumbo if you wait until you get home.

Stick to the Basics

I don’t know about you but I prefer to keep this sort of journal in a standard wide-ruled notebook. I don’t get fancy and I keep to the basics of my case. This isn’t my autobiography; it’s a book of facts I need to keep. A basic notebook works for me.

Posted in MS and Assistive Devices, MS Symptomology

Skiers Raise Funds for MS: Birkebeiner Races

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I used to love to ski. I went a few times with my high school friend and her family, and also during our senior trip to New York State. Something about the fluid movements and the challenge of staying upright really thrilled me. Plus I enjoyed the snow. I remember feeling so proud when I advanced to the intermediate slopes (although I’d watch young whippersnappers — some looked like they were only four years old! —race past me with NO poles. Crazy.) I was happy and felt accomplished on the intermediate slopes considering I didn’t take up the sport until I was 15 years old. My high school buddy, on the other hand, was a pro on the advanced slopes because she had been downhill skiing since SHE was about four years old.

Now I look at cross-country skiing as maybe a new option. I’ve been off the downhill slopes for too long and my balance is sub-par, but I think the flat trails could offer some needed exercise and a way to improve my balance/stamina. When I recently read about an MS skiing fundraiser at my local NMSS website, I was intrigued. Here’s what’s happening in Wisconsin this week:

From February 19 – 21, the 36th annual American Birkebeiner cross-country races will be in full swing. Birkie Skiers for Cures, in collaboration with the National Multiple Sclerosis Society, have created a fundraiser similar to the NMSS’s biking and walking events, with participants raising pledges. There are four races including the 50K American Birkebeiner, the 54K Birkie Classic, the 23K Kortelopet, and the Johnson Bank Prince Haakon 8K. Participants raising a minimum of $2,500 will receive an invitation to meet and ski with Norwegian ski Olympian Bjorn Daehlie. Those raising $250 or more will be entered into a drawing to meet the skier. Of note: Daehlie’s mother suffers from multiple sclerosis and has been the source for his quest to find the cure.

****To learn more about this event, visit the American Berkebeiner website.

Posted in News / Research

Back from Vegas

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I made it back from Las Vegas in one piece, although I have to say that the return flight home had a long delay because of high winds at the Newark (NJ) airport. We touched down at 2:30 in the morning with the wind tossing our plane like a crumpled piece of paper. We didn’t hear about the other Continental flight that didn’t fair as well in Buffalo until later that day. I’m thankful to be back on solid ground…

Nothing too crazy went down in the City of Sin. My mom actually kicked both my friend’s and my own butt in stamina as she dragged us around the strip. We finally used the bus system on the third day because we were so tired from walking. But I have to brag that I generally kept up with both of them……..On the second night we all took an evening limo ride along the strip and caught several free exhibits/shows outside of the casinos, including our own Bellagio’s fountain show (pictured below.) We also went to the top of the Stratosphere casino to get an aerial view of the city. Really cool!……Gambling-wise, I LOST the least amount of money: $70. We pretty much stuck to the poker and blackjack machines because the minimum bets along the nicer areas of the strip were usually $10—- too rich for our blood! Although we did make some $1 wheel bets downtown…….The highlight of the trip was last Wednesday night when we saw the Cirque du Soleil “O” show: it had a continually changing pool of water that would be about 15 feet deep (at its deepest) and then revert back to a solid floor! My cousin, who used to be a summertime announcer for high-diving shows at our local theme park—-Great Adventure—- kept in touch with one of the high-divers that he worked with who later joined this troupe of acrobats. So we got a backstage tour after the show was over. Boy, those Cirque people stay in tip-top shape!! Really pretty cool…..

I had a fantastic time and this was just what I needed to get my GROOVE back. Although there’s no place like home.

Posted in Blog
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