Author Archives: Jen

Traveling with a Medical Condition

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***I’m off to Las Vegas for a few days: a much-needed break from the “slow” life. I wrote this traveling tips article a few years ago, but it still holds true. I’ve found many of these ideas to be very useful and energy-conserving and I hope they help you too.

I’m Vegas, baby!.. LUCK be a LADY….

When traveling with MS or any medical condition, it’s good to take steps to make the journey as smooth and enjoyable as possible. Follow some or all of these ideas on your next trip to save time and energy. The list is not exhaustive, but it pinpoints basic tricks that can help those with medical conditions get the most out of traveling:

Pre-Trip

  • Leave your destination phone number and address with a friend or family member
  • Get doctors’ notes for any injectable or questionable medications you bring on a train or airplane
  • Carry a small, portable sharps container for injectables
  • Keep all meds and prescriptions in your carry-on case in the event that your luggage is lost
  • Bring extra prescriptions in case you lose your medications en route
  • Give yourself extra time to avoid unnecessary stress and fatigue
  • Use luggage with wheels/ long handles to avoid carrying it from place to place
  • Use the bathroom right before boarding the plane or train (airlines make you sit with the seatbelt on for a while after take-off)
  • Avoid excess drinking of any liquids before boarding or going on a road trip and also just before landing
  • Make use of assistive devices such as canes and wheel chairs to avoid fatigue
  • Ask for seats near an exit if you are physically handicapped

During Trip

  • Use assistive devices to avoid fatigue on such journeys as nature walks, amusement parks, and all-day excursions
  • Keep hydrated to avoid fatigue
  • Avoid prolonged sun exposure
  • Keep medications with you in a convenient place such as a purse or backpack
  • Know where local hospitals are
  • Ask theme parks if there are special services for those with disabilities
  • Wear ID bracelets that indicate medical conditions (example: epilepsy) in case of emergency
  • Be prepared and patient enough to make pit-stops— Hey, at least you’re out there!

Post-Trip

  • Repack early for less stress
  • Do the same things that are listed for the pre-trip
  • Have your taxi or ride pull right up to the curb of the airport or train station for luggage transport
  • Have your ride come nice and early
  • If there are baggage porters, utilize them (remember to tip well!)

Keep an open mind when traveling and you can have a fantastic time. Just because you have a medical condition, you don’t have to miss out on the fun and adventures of traveling. Give yourself extra time, know the information about your destination, and utilize any assistive devices to make your journey easier. Don’t be hard on yourself and expect perfection because even those who are in “perfect health” sometimes need assistance. Lastly, ENJOY!

Posted in MS and Assistive Devices

Musician Victoria Williams Has Multiple Sclerosis

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I have a quirky, folksy music CD that I bought back in the early 1990’s. That was a time when “alternative” music— part of the independent, non-pop genre— was intersecting with a movement called “grunge”, or unpolished music played by bands in their garages. The particular CD I’m referring to is by southern alternative artist Victoria Williams. And what especially draws me to this musician is her own multiple sclerosis experience.

Williams grew up in a conservative Louisiana family in the 1960’s. Admittedly awkward and quirky, she went on to study French and music in college while playing acoustic guitar for a local band G.W. Korners in venues around Louisiana and eastern Texas. Williams ended up leaving school and traveling to Colorado and eventually California, working at odd jobs and entertaining others with her guitar-playing. She established Los Angeles as her permanent residency in 1984, while landing an unsuccessful recording contract with EMI records.

Williams later signed a contract with Geffen Records and released the 1987 album “Happy Come Home” to little fanfair. At the time she was married to another songwriter (Peter Case), but this ended soon afterward and Williams went on to record her second album “Swing the Statue” in 1990 with an independent label. This began her notoriety as she started to tour with the likes of Neil Young and Lou Reed (1992.)

At around this time Victoria Williams began to experience a lot of weakness on stage, and she found herself having trouble walking. Shortly after, she was diagnosed with MS and needed to use a wheelchair. During this time her musician friends Matthew Sweet, Lou Reed, Pearl Jam, Soul Asylum, and others did a benefit series of concerts and a CD compilation of Williams’ songs for the Sweet Relief Foundation, a fund for artists who do not have health insurance.

Williams rebounded from the intial attack and went on to remarry, appear in the feature film “Even Cowgirls Get the Blues” (1995), and record several more albums—“This Moment: Live in Toronto” (1995), “Water to Drink” (2000), and “Sings Some Ol’ Songs” (2002.) She continued to tour with other bands for several years, and now currently plays guitar and sings with an LA band The Thriftstore Allstars, where she has ongoing show dates at the club Pappy and Harriet’s.

***For further information, see the Victoria Williams Biography and Fansite.

Posted in Others' MS Stories

MS and Affording a Disability Lawyer

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Winning a social security disability insurance (SSDI) case can be very difficult, especially if you’re young and not completely incapacitated. Many disability case processors do not know the harrowing effects that multiple sclerosis can have and how fatigue and weakness alone can keep an otherwise motivated person from maintaining a steady, well-paying job. Sometimes it’s necessary to employ a disability lawyer to secure the case. And it is affordable, because reputable lawyers make it this way.

When I found myself going from a full-time, busy health career to a part-time, low-stress library job, I sensed that my multiple sclerosis would become an obstacle from that point forward. My premonition couldn’t have been more on-target: because of my MS, I began to have problems with fatigue and leg weakness that hindered me even at the library. A few years ago I was let go from the library due to MS-related absences, so I applied for social security (my sketchy employment had been a problem since 2003, so I knew it was time to seek some help.) My first application for disability was rejected about five months later, so I called my local MS Society chapter and inquired about disability lawyers.

I phoned and met with the first lawyer the MS Society recommended. He informed me that about 80% of his clients were through the MS Society, and he won about 95% of his cases. I felt very confident. But what made me feel the most secure was his payment policy: he would represent me and actively gather my evidence and and he would receive payment only AFTER he won my case. It was his gamble, not mine. He would receive payment through my accumulated back-pay, either a flat fee or 20% — the lesser of the two. This completely put my mind at ease and we moved forward. My case went on for 2 and a 1/2 years (from my initial application until my court appearance after my second rejection.) I doubt I could have presented as thorough a case to the judge— my lawyer presented full medical and work files with doctors’ and employers’ notes and surveys that he largely obtained himself— and so I was completely grateful to have employed him to represent me. The case dragged on so long that I ended up paying him the flat fee because it was less: between 15-20% of my back-pay.

I have come to note that this is the standard, ethical procedure for disability lawyers. They should not demand any sorts of fees up front— initial consultation or otherwise. The fee schedule is in place to afford middle- and lower-income clients a fair shot at SSDI. Anything else is unethical.

**To find a reputable disability lawyer, contact your local MS organizational chapter (The National MS Society in the United States.)

Posted in Social Security/ Disability/ Medicare

Been Away

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I’ve been away from the website for about a week now and I’m trying to get back in the groove. I think I’ve finally kicked the sinus infection that dragged on and on for about 3 and 1/2 weeks(!) Things here are quiet, snowy, and cold…I’m finally resuming my library volunteer day work, which I haven’t been to in about four weeks. Bill will be reviewed at work soon, and his boss already informed everyone that they will not receive any kind of performance raises this time around. Which is annoying but understandable since he works for a small financial company and the stock market is in shambles. We’re glad he still has a job at all! But he’s going to push for another week’s vacation which won’t cost the company anything.

My one gripe about all of this is the ridiculous health insurance premiums we keep paying. Our insurance is pretty thorough (I’m very grateful), but we are paying about a third of Bill’s take-home income— or almost one of my modest social security checks— to cover the premiums. So it’s still like we’re living on one moderate income. I’m putting my feelers out to find more paid, steady writing opportunities (work I can manage from home and continue to manage even during an MS relapse.) Difficult but doable. No one ever said affording multiple sclerosis was easy…

Come on, Obama! We need better, more affordable health coverage here in America….

Posted in Blog

Alemtuzumab Clinical Trials

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I recently received this email from a PR representative promoting the study of the drug Alemtuzumab for multiple sclerosis in global clinical trials. I have seen this pitch letter floating around at other websites, and I’m posting it here in case any readers are interested in participating:

Hi Jen,

My name is Brenna Fitzgerald and I’m writing to you from Fleishman-Hillard, a communications company, contracted to create awareness regarding two clinical research studies in multiple sclerosis. As your blog chronicles your journey with multiple sclerosis, I wanted to let you and your readers know about two global clinical research studies that are seeking adults with relapsing-remitting MS.

The Comparison of Alemtuzumab and Rebif® Efficacy in Multiple Sclerosis (CARE­MSSM) I and II studies are designed to determine the safety and effectiveness of the investigational drug alemtuzumab as compared to the FDA-approved therapy Rebif (interferon beta-1a), in adults with relapsing-remitting multiple sclerosis. The studies will look for differences between these drugs on the progression of disability and in the number of relapses (flare-ups) and brain lesions caused by MS. The studies also will compare the side effects of the drugs and monitor for risks during and after treatment.

Current therapies require frequent, long-term administration. When compared with no treatment, they have been shown to reduce the number of relapses, slow the formation of MS associated lesions in the brain, and impact progression of disability. A need still exists for more effective therapies to further slow the progression of disability.

Studies measuring investigational treatments against standards of care are advancing knowledge of these drugs on the disabling effects of MS, which may impact the patient’s quality of life. Every patient in the CARE-MS studies will receive active treatment; there is no placebo. Participation in the CARE-MS trials may offer participants the opportunity to help advance research in the treatment of MS while taking a role in their healthcare.

Alemtuzumab, Rebif, the annual dose of steroids, and study-required procedures are provided at no cost.

To be eligible to participate in the studies, volunteers must be between the ages of 18 and 50 (CARE-MS I) or 18 and 55 (CARE-MS II) and meet specific criteria, including having a diagnosis of RRMS and first experiencing MS symptoms within the last 5 years (CARE-MS I) or 10 years (CARE-MS II).

For more information about the studies, please call 1-503-432-4725 or toll-free
1-888-404–MS-CARE (United States only) or visit www.CARE-MS.com. There, you will find additional information about the studies and an online prescreener, which will allow people with RRMS to determine if they meet initial eligibility requirements.

If you find this information useful, I hope you will consider sharing it with your readers and posting 1-888-404–MS-CARE and a link to www.CARE-MS.com on your blog.

Best regards,

Brenna Fitzgerald

Account Executive

Fleishman-Hillard, Inc

855 Boylston St | Boston, MA 02116

Posted in News / Research

Having MS and Being Sick with a Bug

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I’ve been flattened by some bug for the past 10 days and I have to say that having multiple sclerosis makes the ordeal that much worse. I’m not sure if I have a lingering cold or maybe something more serious, but I am just starting to re-emerge from the sickness that has been holding me down. And yes, it’s very frustrating.

I don’t know if non-MSers understand how infections are compounded by an autoimmune disease. Since we folks with MS are continuously being attacked by our own immune systems, when we get sick with a “real” foreign threat the risk of our MS symptoms worsening or our immune systems launching new autoimmune assaults (or MS relapses) increases. The immune system of someone with an autoimmune disease– MS, lupus, Crohn’s disease, ulcerative colitis, and so on— can go completely out of whack when the body is fighting a real threat such as an infection, trauma caused by an accident or surgery, or an emotionally-stressful situation. The body becomes very vulnerable to an attack from the immune system itself.

My other frustration lies with taking an immunosuppressive medication— one of the disease-modifying injectable meds— that has a tendency to make me feel worse when I am already sick with something. I take an interferon medication that lowers my resistance to infections and causes flu-like side-effects that are mild to moderate. On a normal day, the side-effects can be slightly annoying, causing headaches or mild fever/chills or maybe absolutely nothing, but when I’m sick with an infection the injections cause me to spike a fever, have bodily aches and pains, nausea, and often a blasting headache. UGH. I sometimes forgo a few shots during these sick times, although I have to admit that the injections have helped me to lead a somewhat symptom-free life during MS remissions. And my MS relapses have slowed down considerably since starting the drug a little over three years ago. So it’s a nonstop battle of weighing the pros and cons of my disease-modifying medication.

One thing I do find interesting about having MS is that it can sometimes work as a barometer to forecast oncoming illnesses. When my usually-dormant symptoms rear their ugly heads, I am often tipped off about a new infection. This has been the case with bladder infections, which I’ve come to experience since my MS diagnosis which was a little over three years ago. Bladder infections can be pretty vague at first– lethargy, a little nausea, and maybe some stomach upset. My MS symptoms become a great forecaster of oncoming bladder infections and other illnesses.

Posted in Blog, MS Symptomology

2009 Upgrade

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Welcome to 2009. It’s still cold and dry here, but the house is warm and cozy. Bill and I have fixed some things on the homepage, including the comments feature which is now back on. The last 8 or so articles have “comments off” posted at the bottom, but starting with this post the comments are again accessible and we’ll hope for the best in terms of not attracting so much spam–PORN sites, auto insurance ads, casino ads, weight-loss site ads, and so on-LOL! And the previous comments from before the html blunder are still on the pages, so not too much of a casualty. I’m staying away from the html for a while……

******UPDATE: I’ve fixed the comments feature for the 8 or so articles that were affected by the blunder..

Jen (a smile)

Posted in Blog

Large-Print and Audio Books for MS Patients

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I often find myself listening to audio versions of my favorite print books. As an MS patient, I have some mild cognitive impairments that make me easily distracted when trying to read. My attention span has gotten shorter as the years have gone by, and instead of throwing my hands up in frustration and giving up on reading, I pop a CD or cassette book into my portable stereo and put on a headset. This has worked well for me because I can really only concentrate on the speaker as I’m relaxing on my bed. I’ve found this works well for any abstract reads where I have to give my full attention to the subject matter.

Audio and large-print books are also great for those with residual visual impairments due to optic neuritis or double vision. Large-print books allow for reading with less eye strain and audio books eliminate this hindrance. Libraries are good, free sources for both of these options. Many libraries have extensive sections for each, with both popular and not-so-known selections available. If you are unable to get yourself out to the library, many systems will deliver library materials to your home.

Posted in MS and Assistive Devices

Tweaking the Website

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Hi there…

I’m working on some stuff to enhance this website. The “comments” html has been messed up for a while now and so Bill and I are working on fixing it for 2009. We have been getting a lot of spam, but hopefully the problem will die down in the coming year. Other than having a small cold, things are not too bad here. The MS is currently at bay and I’m considering taking an 8-week yoga class at my local high school. I’ve been putting this off since the summer and I think now it’s time to get back out there. The volunteering at the library is on hold during the holidays but will resume again in January. And my first column for New Mobility’s MS Life section will come out January 1st. There will be a profile about Joan (A Short in the Cord) and her great chat room.

Things are peaceful here as 2008 comes to a close……Here’s to better health, prosperity, and sanity in 2009!

Sincerely,

Jen

Posted in Blog
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