Author Archives: Jen

Squiggy’s Even Better in Person

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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.

Google Images

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

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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?

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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

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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

Google Images

  • 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

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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

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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

Prelude to a New Article

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Sandy with Crazy Daddy

I’m warming up for a new article. Getting the fingers limber and receptive to WORK. Thanksgiving was very cheerful and fun with the family– my parents, who live in the next town over, have had the festivities since I can remember. I told my mom I’d like to take it over in the future, but right now our house is way too small. We had Easter one year and that was a real hoot. So no major holidays in here, and if I ever do one again, it’s gonna be a potluck and someone else can make the bird (or it’s coming already cooked and garnished from Hinck’s Turkey Farm nearby.) I love one of the mottos from Alcoholics Anonymous: Keep It Simple, Stupid ( K.I.S.S. for short.)

I did have a nasty “shot” hangover from the Betaseron yesterday. Probably one of the reasons people don’t take interferons. I’m usually pretty good on it, and the flu-like side-effects have calmed down over the past few years, but I get what I call a rogue shot– similar to a rogue wave— where the effects are bigger and more turbulent than the shots before it. I get one about every two or three months. It feels like a really intense flu for the day: fever, chills, body aches, nausea, and a mind blowing headache. Lovely. So yesterday the household just lounged on the couches and watched the tube. Even the cat. Very supportive– thanks!

I went to the local community college last week and signed up for an abnormal psychology class, which comes in an online format. I took a library science course online about three years ago and I think the format’s great. Almost like independent study with a once-a-week meeting online. I’m mentally gearing up for this because I need something to do with my wandering brain. Something stimulating and interesting. Starts in January, just before my mind goes into hibernation, so not a moment too soon.

Here is some pretty exciting news: I was interviewed by New Mobility magazine a few months back about my lengthy disability case and one of the editors and then-columnist Josie and I got to talking about other things. She mentioned that she might be looking to pass the MS Life column on to a new columnist. We kept in touch and I submitted a sample column for their January issue. They notified me recently and told me I was hired to be the new columnist for 2009. The MS Life section is published every other month and it contains a profile of an MSer, a piece on coping, a piece on new research, and a wildcard. The January issue will have a profile on Joan from A Short in the Cord, giving information about her fantastic chat room. Parts of the mag can be viewed online at www.newmobility.com and I also found it at the main branch of our library system. The magazine is for active wheelchair users and the MS Life column provides news to those with moderate and progressive forms of MS.

Anything else new and exciting? Probably not. I have to admit that I live the placid, understimulating life of an 85 year old man. Which of course can be good and bad, depending on the day.

Now on to Copaxone and its advantages and its drawbacks…..

Posted in Blog

Avonex for Multiple Sclerosis

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Avonex, Google Images

There are several injectable disease-modifying drugs on the market today to slow patients’ courses of relapsing-remitting multiple sclerosis. These medications are defenses against the number and severity of future relapses and resulting disability. The drugs range in effectiveness and are therefore used for different severities of RRMS. At this time, these drugs are only indicated for relapsing-remitting MS and are not definitely proven to help progressive courses, although a couple of the medications are still used for this purpose. No medications are 100% effective and there is currently no cure for multiple sclerosis.

Avonex* is one of the said injectable drugs, and like all of the other medications, it comes with its advantages and its drawbacks. It is a manufactured interferon— specifically beta-1a— which is a protein that is also naturally produced by the body. Avonex has been proven to reduce the number and severity of MS relapses in patients, as well as the level of disability caused by relapses, and it has been on the market since 1996.

Avonex’s Advantages:

  • The medication is only administered once a week, as opposed to the other drugs, one of which is injected daily
  • Avonex can be received in prefilled syringes or easy packets which can be mixed by the patient
  • The administration of Avonex causes less site reactions than most of the other medications
  • Avonex has more than 10 years’ worth of proven results

Avonex’s Drawbacks:

  • Being one of the interferon medications, Avonex can cause flu-like side-effects (fever, chills, nausea, and aches) for up to two days after a shot is administered
  • Avonex is the only medication that is injected intramuscularly (IM), and so it has the longest needle
  • Avonex can cause any of the following side-effects: depression, anemia, seizures (rare), heart abnormalities (rare), abnormal liver function readings, thyroid abnormalities, and reduced immunity to infections and illnesses
  • Avonex is thought to be the least effective drug for MS because it has the lowest dose with the least amount of administrations. Rebif, another drug with the same chemical composition, is given at a higher dose (subcutaneously or just under the skin) several times a week.

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

Posted in MS Medications

MS Cerebral (Brain) Attacks and Symptoms

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The Brain: Google Images

Surprisingly, the least common area for a multiple sclerosis attack (only 3% of all relapses) is the cerebrum, or the vast area of the brain. Attacks to the cerebrum can cause demyelination to its nerves as well as brain atrophy, or shrinkage. Such relapses can cause the following symptoms in multiple sclerosis patients:

Cognitive Impairments

Although not as common as spinal cord or brain stem symptoms, cognitive disabilities are thought to affect about 50 to 60% of MSers over the courses of their diseases. Such impairments include short-term memory problems, a decrease in reasoning skills, vocabulary deficits (“fishing for words”), and problems with outside overstimulation and internally processing outside situations (confusion.) Only about 5 to 10% of those with multiple sclerosis develop severe cognitive problems.

Depression

Multiple sclerosis depression can be caused by several mitigating factors such as coping with a chronic and debilitating illness, taking medications that cause depression, and non-MS outside stressors (careers, financial situations, divorce, other illnesses, death, and so on.) MS depression can also be organic, or caused by the multiple sclerosis itself. Scientists now know that depression can arise from damage to nerves within the cerebrum. These nerves send and receive messages about emotions, and faulty nerves can misfire messages. Brain atrophy might also be responsible for organic depression.

Tonic Seizures

Although rare (occurring in approximately 5 out of every 800 MS patients), brief seizures can happen when there are lesions and inflammation in the cerebrum.

  • Reference:

Rosner, Louis J., MD and Shelley Ross. New Hope and Practical Advice for People with MS and Their Families. Simon & Schuster: New York, 2008.

Posted in MS Symptomology
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