December, 2008 - MS Strength

Monthly Archives: December 2008

Squiggy’s Even Better in Person

Posted on December 8, 2008 by Jen Leave a comment

This weekend was pretty event-filled: we celebrated my bro’s 40th birthday with the family on Saturday, then on Sunday Bill and I trekked to central Jersey for the commemoration of two of our Nat’l MS Society chapters merging into one big organization. There was a luncheon with awards for local volunteers— both individual and corporate—and some people were on stage telling their MS stories. A young woman benefited from the Society’s scholarship program (her mom has progressive MS and their family needed help sending her to college.) Two MSers talked about the support they receive from programs and volunteers. And one woman told of her fears as she recently took on the role of caregiver to her husband. A quiver in her voice silenced any rude conversations going on at the tables. This one got me on the verge of a waterfall of tears myself and I was happy to be wearing a baseball cap to obscure my overflowing emotions. Funny that other MSers don’t tend to get me choked up (usually): it’s the families and loved ones left in the wake of this awful disease that tap my deeper emotions. I witness firsthand the grief, anxiety, fear, and frustration they go through.

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By this point in the afternoon, everyone needed a comical break. Enter David Lander, aka Squiggy. Lander took the stage and told us about his meeting Michael McKean, the other half of the team “Lenny and Squiggy” from the old sitcom Laverne & Shirley. Now I love to laugh (probably inappropriately at times, but oh well—SUE ME!) I find that laughter keeps me from blowing a gasket on a lot of days. So Bill and I were almost on the floor listening to “Squiggy” tell of his adventures in Hollywood. And then Lander talked about his life with MS. I posted about David recently, so I had a particular interest in seeing him in person.

After the talk, lunch ended and people were able to speak with Squiggmann and have him sign a book or two. Bill and I of course got on line. When it was our turn we thanked him for coming and keeping MSers laughing. He then mentioned that by the time he got on stage (there was a 45-minute delay during the lunch), he had no idea what the hell he was talking about. We asked him if it was because they didn’t feed him lunch while he was waiting and he replied that he never eats before one of these things because he’s always afraid he’ll start BURPING! Howls of laughter. Now Bill and I have this fantastic memory of our hero David Lander, aka Andrew Squiggmann. Thanks again, David!

PS: Lander has a website about his life and coping with MS, and he accepts email:

www.davidllander.com

Posted in Blog

Rebif for Multiple Sclerosis

Posted on December 5, 2008 by Jen 4 comments

Google Images

Rebif, or interferon beta 1- a, is a manufactured medication used for the treatment of multiple sclerosis. Interferons are naturally-occurring proteins produced by the immune system and they help to ward off infections, although it is not fully understood how interferon medications aid against multiple sclerosis attacks.

Rebif, which has the same composition as the disease-modifying medication Avonex, was introduced in Europe in 1998 and approved by the U.S. FDA in 2002. With regular use, Rebif has been proven to be 30 to 40% effective in reducing multiple sclerosis relapses in some patients. Just like the other disease-modifying medications, *Rebif is not a cure for multiple sclerosis, and it is not effective in every patient.

Rebif Advantages

Rebif is administered three times a week, making it one of the least-administered disease-modifying medications

Rebif has a higher dose and administration frequency of interferon beta – 1a, so its effectiveness is considered higher than that of Avonex’s, which is the same interferon

Rebif comes in easy-to-administer syringes

This medication has a proven track record (in Europe) dating back to 1998

Rebif Drawbacks

Being one of the interferon medications, Rebif can cause flu-like side-effects: fever, chills, nausea, and body aches

Rebif can cause any of the following other side-effects: depression, anemia, seizures (rare), heart abnormalities (rare), abnormal liver function readings, thyroid abnormalities, and reduced immunity to infections and illnesses

This medication needs to be refrigerated during certain circumstances

*any decision to take medication should be thoroughly discussed with your doctor

References: The U.S. Food and Drug Administration, The National MS Society, All About MS- Rebif

Posted in MS Medications

A Neuron Gene Linked to Multiple Sclerosis?

Posted on December 4, 2008 by Jen 4 comments

I received a recent article from my Nat’l MS Society chapter about the discovery of a defective gene that might be linked to multiple sclerosis. Of course I sat up and paid attention! Scientists worldwide have been trying for years to establish a definite genetic link that may run in families and increase family members’ risks for developing the disease. There are plenty of clans who have several members living with MS, and they can trace back generations of people who also had it. So finding a link can be the beginning of targeting a defective gene and possibly creating medications to protect fragile genes in MSers or establishing vaccines to prevent the disease…… Well, let’s just say science is off to a good start:

DNA Double Helix, Google Images

A study in Europe found that specific genes within long neurons (metre- or yard- long) that transport signals between the brain and spinal cord are actually defective in a group of relatives living in The Netherlands. The type of gene, known as KIF1B, has the job of “powering” signals within these long neurons, thereby sending important information between the brain and the spinal cord.

A second study examined this gene among a larger group of northern Europeans and learned that there is a slightly higher incidence of MS in people who exhibit this mutation.

At this point it is not clear whether the defective gene causes MS attacks (due to the immune system viewing the mutations as foreign matter?), or the genes leave the neurons especially vulnerable for MS attacks in those who already have multiple sclerosis (due to the length and fragility of such neurons), causing more damage to these neurons compared to those of MSers whose KIF1B genes are not defective. In the meantime, this discovery leads scientists to more genetic testing which includes studying MSers with the mutation versus those without. Such further research could help to establish how the defective nerve tissue deals with an MS attack, thereby posing a possible link between the gene mutation and degenerative MS compared to standard KIF1B genes and less progressive MS.

*For more information about this breakthrough research, see the news article provided by The National MS Society: New Jersey Metro Chapter.

Posted in News / Research

What Impacts Multiple Sclerosis

Posted on December 3, 2008 by Jen Leave a comment

I’m sitting here, glass of red wine in hand, and I’m thinking about how I love to people-watch. I’ve always been one to observe human behavior and what motivates people to act as they do. I can’t help it: I’m pretty intuitive by nature and I just naturally wonder what makes other people tick. Especially when people have MS.
Microsoft.com

Are you an MSer? Are you reading this because someone you know has multiple sclerosis? Do you work with someone who has it? Well, there are many factors that can positively or negatively impact a person who has this illness. I’m talking about stuff above and beyond the usual symptoms, frustrations, and limitations that the disease imposes. Outside things come in and shape an MSer’s reality, view point, and overall experience with MS. We as a population have such varying degrees of the disease that sometimes it’s hard to completely relate to one another, let alone with non-MSers. Throw in outside and unseen stressors and sometimes it is as though we are all from different planets (which of course we aren’t, but sometimes it seems this way.)

As someone within the MS community, I try to analyze a situation with another MSer as something that is incomplete: I don’t have the entire picture of that person and I don’t want to make hasty judgments because I have not walked in that person’s shoes. If you are also an MSer, you can probably relate to the following negative and positive impacts. And if you love someone with MS, this may shed some light on what a person with multiple sclerosis deals with above and beyond their condition and how it impacts them, for better or for worse. Helping to foster positive situations can be a gift to yourself or your loved one.

Of course these lists are not exhaustive….

Negative Impacts

Being overworked: Having MS and needing to work because of financial needs can sap the stamina of someone who already has a limited energy supply. The same holds true for an MSer who has too many daily demands. Both situations cause a great deal of stress, fatigue, and worry.

Not being in the workforce: On the contrary, being out of work can feel demeaning, depressing, and confusing. Msers face the challenge of making meaning out of a very unstructured, slow existence.

Financial problems: MS can be the source of this, but it isn’t always. The loss of a spouse’s job or a new or ongoing financial burden can be weighing heavily on a person with multiple sclerosis.

Relationship problems: Not having a partner to help with the stress and decisions of MS can be very taxing. So can having the wrong partner, having family animosity, or having problems with friends.

Other health issues: So many MSers have problems on top of their disease. MS isn’t the only illness and dealing with other problems such as depression, migraines, arthritis, other autoimmune disorders, cancer, a heart condition and so on can try a person’s emotional stability.

Family health issues: The families of MSers get sick too. Aging parents who need extra care and medical attention, spouses or partners who have their own health issues, and children who have health and/or learning problems can challenge MSers to stay focused and calm.

Positive Impacts

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Steady, nonjudgmental love: Having family and friends who love and care for a person with a chronic illness can bolster them and help them to stay positive and less stressed. It motivates them to help themselves and take care of their MS.

A safe, quiet place to oneself: Everyone wants to feel calm and sane throughout the day. Having a “room of one’s own” can make someone with MS feel calm, rational, and able to cope with life’s difficulties.

Enough money to live on: Having enough income to live modestly but happily can make all the difference between being a stressed and upset multiple sclerosis patient and a calm, grateful one.

An occupation or outlet: Everyone needs to feel useful, wanted, and vital. Sometimes with MS this becomes a big problem, as abilities change. MSers need to have something important and worthwhile (yet not overwhelming) to do with their time.

Help from others: This includes forms of support from other MSers, counselors, and help from family and friends. An MSer can thrive, even in the face of adversity, with a little help and encouragement. And the reduction of stress can certainly bring about positive change.

Posted in MS and Emotions

Betaseron for Multiple Sclerosis

Posted on December 2, 2008 by Jen 2 comments

Betaseron, Google Images

Betaseron, or beta – 1b, is an interferon medication that is manufactured and used for the treatment of relapsing-remitting MS. Interferons are naturally-occurring proteins produced by the immune system and they help to ward off infections, although it is not fully understood how interferon medications aid against multiple sclerosis attacks.

Betaseron was the first disease-modifying medication to be approved for the use of slowing multiple sclerosis activity: on the market since 1993, it has proven to be approximately 30 to 40% effective against MS relapses and their resulting disability (in some patients.) Just like the other disease-modifying medications, *Betaseron is not a cure for multiple sclerosis, and it is not effective in every patient.

Betaseron Advantages

Betaseron has the longest track record of effectiveness out of all the disease-modifying injectable medications

This medication comes in easy-to-mix kits. Prior to assembly, it does not need to be refrigerated, so it is very easy to store and transport.

Administration is every other day

Betaseron has an ultra-thin needle, which makes injections less painful

Betaseron Drawbacks

Because it is an interferon, Betaseron can produce temporary flu-like side-effects: fever, chills, body aches, nausea, and/or headaches. It can also cause depression, lowered immunity to certain infections, and liver and thyroid abnormalities. Patients need to be monitored while taking this medication.

Betaseron has the second most administrations among the disease-modifying medications

This medication can cause injection site reactions: pain, redness, itching, and swelling

*any decision to take medication should be thoroughly discussed with your doctor

References: The U.S. Food and Drug Administration, The Nat’l MS Society, All About MS- Betaseron

Posted in MS Medications

Copaxone for Multiple Sclerosis

Posted on December 1, 2008 by Jen 4 comments

Google Images

Copaxone is a synthetic, injectable medication for relapsing-remitting MS. On the market since 1996, glatiramer acetate (its generic name) has been proven to reduce the rate of relapses in some multiple sclerosis patients by about 30 to 40%. It has also been proven to reduce the amount of new MS lesions a patient may develop, thereby slowing the amount of accumulated disability. Copaxone’s chemical composition is supposed to mimic actual proteins in the body, and it is thought to lure an immune system attack away from real protein-based myelin, or nerve coverings. Like any other MS medication, *Copaxone is not a cure for multiple sclerosis, and it is not always effective in every patient.

Copaxone Advantages

this medication is not an interferon, so it does not create the flu-like side-effects that are common with interferon drugs (Avonex, Betaseron, and Rebif)

injections come conveniently premade

Copaxone has over 10 years’ worth of proven effectiveness

this medication does not cause depression or liver/thyroid dysfunctions like interferon medications can

Copaxone Drawbacks

Copaxone is a daily injectable– it has the most amount of administrations out of all the disease-modifying injectable meds

Copaxone needs to be kept refrigerated during certain circumstances

this medication can pose several (rare but brief) side-effects: chest tightening, anxiety, shortness of breath, and flushing just after administration. It can also cause injection site reactions: redness, swelling, itching, and pain

*any decision to take medication should be thoroughly discussed with your doctor

References: All About MS- Copaxone, The U.S. Food and Drug Administration, Nat’l MS Society (U.S.)

Posted in MS Medications