Author Archives: Jen

Stories of MS Strength

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I started this website with a vision to empower and inspire other MSers who search the internet for multiple sclerosis information, news, and stories. I guess it’s been a little pipe dream of mine because I like to write and I also like to help others (I spent the majority of my short career in the health and public service realms.)

Recently my website underwent a name change, due to copyright infringements with another website. MS Friend became MS Strength in a matter of a week. I think this new name is an improvement, something of an upgrade: this site is gonna rise to its true, gritty, ballsy name. It will keep me on my toes as I attempt to present what I know and what I learn about MS. My own multiple sclerosis story is currently good, as I relax a bit from the chaos, pain, and grit of the last several years. To view my own journey, check out the “Categories” link to “My Personal MS Story” in the right margin.

I’d like to present some other stories of MS grit. I read several blogs and find such courageous people living day in and day out with multiple sclerosis. I’ve been to several seminars where I’ve met other MSers and I have to admit that a few were big sulkers. When I say “sulkers”, I am speaking about people with MS— generally with moderate disease courses— who complain and have nothing but negative comments to make about their lives and their conditions. They don’t appreciate any of the available medications and don’t want to try any of them, they are depressed but make no effort to change their situations, and they bring nothing of their true selves— their true grit— to the table.

The following links lead you to some of the best, current stories of MS strength that I have personally witnessed. These people plug on and demonstrate grit in the face of adversity, which is what MS strength is all about:

All of these MSers demonstrate true MS strength under pressure. It is with honor that I can present their stories to you in an attempt to give you inspiration and strength during troubled times.

Sincerely,

Jen

Posted in News / Research

Multiple Sclerosis and Apathy

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Being a current couch dweller (a loving term for an MSer who finds herself stuck to her couch), I have a lot of time to ponder why. I’m not clinically depressed, because I was twice in the past and both times it took therapy and medication to pry me off of the couch. I’m also not overly fatigued– I’ve been there and know the huge difference. These said conditions can both be severely debilitating and two of the biggest reasons people with multiple sclerosis end up stuck on the couch.

So then what is going on with me?……Simple: MS apathy. This is my loving term for having MS and no steady occupation. I don’t only mean a job; I also mean basic occupation or what fills up the day. Not too many people out in the work force ever think about this. They usually suffer from the opposite: stress. The same is true for stay-at-home moms and dads.

I’ve suffered from apathy in the past. I think it comes from not having a definite, concrete reason to leave the house. I’ve been volunteering two week days and one week night at the library and I have some writing assignments that are keeping me busy, but I have to say that when I leave the library, I sometimes get a twinge of longing to work outside of the home again. This has been a problem for me in the past few years, so I am coming to terms with finding a new path that is more flexible and won’t make me reneg on work commitments.

So the apathy ebbs and flows, just like MS depression, fatigue, and other symptoms. This is what I’ve learned in the past and the following tricks I’m presently using to get “unstuck”:

Scheduling things that are commitments but not demands

When feeling apathetic and in need of a gentle push out the door, try to plan things to get out of the house. These commitments can be volunteer hours, regular visits with friends or relatives, regular therapist appointments, interesting group meetings, fun classes, and so on. They are things that should be done, to get the body up and moving, but not hard demands that lead to guilt and frustration if cancelled.

Scheduling things during the best hours of operation

Are you a morning person with the most energy during this time? Or do you gain speed later in the day? I myself will turn into a night owl if left to my natural rhythms. My Betaseron shots also tend to give me a “hangover”, with slight to moderate flu-like symptoms until about 11am or so. For this reason, I make most of my commitments after 12pm, unless absolutely necessary. This way I have less of a chance of bailing out and feeling bad about it. I also find doing things in small blocks of time keeps me committed and not overwhelmed.

Finding a comfortable level of outside occupation

This always stymies me. It’s difficult to find a happy medium between overdoing it and being completely underwhelmed. Somehow the housework grows boring and the computer overheats, but venturing out can be scary because MSers as a group do not always know what will be okay and what will be completely draining and overwhelming. Sometimes it’s a matter of trial and error. Finding a stimulating but not overwhelming level of occupation can help control apathy.

This is what I’m currently working on as I try to see (yet again) what is just right for me. I’m not completely apathetic, just slightly bored….

Posted in MS and Emotions

Online Freelance Writing Opportunities

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I like to mention financial opportunities that I come across. I know how hard it is to make a decent income and also have multiple sclerosis, so I especially think MSers who journal or blog are perfect candidates for any of the open spots at About.com.

This website is owned and operated by the New York Times Company and it pays a good monthly stipend for first and second year writers ($725.) The site states that writers can exceed the stipend amount with earned ad revenue, so the potential for income can exceed $1K a month, which is pretty good for writing a weekly article and a weekly blog post. About.com has hundreds of topics, with many current openings. Some are a little specific, but maybe you have a vast knowledge about Seattle or needlepointing. Another option is to suggest a topic to About.com (I’m in the process of this, since I couldn’t find an open topic that I could extensively write about.) In any case, those trying to obtain at-home work might find writing for pay a good, flexible solution.

PS: About.com mentions “published writing experience”, but many times they substitute vast knowledge for experience. Browse some of the established topics. And keep in mind that blogs count as great writing portfolios for potential gigs.

Posted in Working/Volunteering Info

MS Brain Stem and Cerebellar Attacks

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The second most common region for multiple sclerosis attacks is the brain stem-cerebellar area, making up approximately 38% of all relapses. There is a term called “Charcot’s Triad”, named after neurologist Jean-Martin Charcot, which describes the most prevalent symptoms resulting from these attacks: speech difficulties, compromised balance, and double vision. Brain stem-cerebellar attacks can cause any of the following symptoms in an MS patient:

Loss of Balance and Coordination

These problems can involve walking, rising to a standing position, using the legs, and/or using the arms and hands. MSers can have difficulties with walking and may sway to one side, or possibly experience vertigo or dizziness (along with nausea.) Loss of coordination, also referred to as ataxia, can affect the fine movements of the hands and make writing, combing one’s hair, and tying shoe laces very difficult. Another manifestation of this damage is an intention tremor, where the hand or hands shake. Patients also describe problems with clumsiness and the coordination of limbs.

Eye and Vision Abnormalities

There are two types of eye problems associated with brain stem and cerebellar attacks. The first is eye muscle jerking, or nystagmus, which causes vision to be “jumpy'” or moving. The second type is eye muscle weakness, or gaze palsy, which can cause double vision.

Speech and Swallowing Disturbances

Problems with speech, also known as dysarthria, can affect the rhythm or pronunciation of words. The slurring of words is one disorder, where a person might appear to be intoxicated. Rhythm can be affected too, and a patient may find herself “scanning” or speaking in a jerky or stuttering fashion. Problems with swallowing, or dysphagia, may also occur.

Trouble with Facial Muscles and Nerves

Weakness, muscle spasms, numbness, and pain may occur in facial muscles. A particular facial nerve that may be affected is the trigeminal nerve, which runs along both sides of the face. This can cause severe pain blasts or dull, achy pain along the cheeks and jawlines.

Tinnitus (Ear Pain and Ringing)

This is a less common problem. In severe cases, a loss of hearing may result. This is generally limited to one ear.

Emotional Disturbances

Inappropriate laughing, crying (emotional lability), and euphoria (exaggerated sense of wellbeing) can be noted with brain stem and cerebellar attacks. These symptoms are considered separate from multiple sclerosis depression, which appears to originate from damage to the cerebrum.

Reference:

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

Posted in MS Symptomology

MS Friend is now MS Strength

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Jen on AC boardwalk

Hey!

I think the alterations for the name change are complete— no more copyright infringements. Being a webmaster/geek and a fan of the mechanics of things, I’m most annoyed with the rebuilding of a ranking with Google. Yes, I’m into search engine targeting, Google stats, and key word optimization. It took about two years for my Suite101.com site to gain decent traffic and become widely searched, and I am part of their large, high-ranking site. So to start here from the beginning again with Google is a bit irritating. But I always think that the turtle wins in the end. And I love a CHALLENGE. I have a whole mess of topic ideas up my sleeve: may they SLOWLY exit my mind and come out through my finger tips onto this site. If you are a blogger, I apologize in advance for mundane and elementary articles, but they are the foundation for more advanced things. Feel free to just say “hello” in the comments sections!

Atlantic City Imax theater

Speaking of challenges, I was recently interviewed by New Mobility magazine about my long social security disability case. They have a website, although they only provide a snippet of the interview (under “MS Life.”) I did find the magazine at my local library. It’s for active wheelchair users as well as MS patients of all abilities, and it’s quite interesting. If you can get your hands on a copy, check it out.

Facebook is quieting down, although I still have my binges. I’ve found Joan (A Short in the Cord), Lisa (Brass and Ivory), and Linda (Brain Cheese) there, to my amusement. I believe they also have MS Society groups to join, but so far I’ve only hitched to HS reunion stuff. Funny to see long lost buddies.

That’s about it for now. Got a writing assignment that I need to get to. I hope to be back here in a few days with a new article, as I patiently wait for the search engine crawlers to once again find my pages and bring me back to life! Lawd, gimme strength (MS Strength)….

Peace out, you crazy cats—

Jen

Posted in Blog

Keeping the MS Glass Half Full

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I am an optimist. I wasn’t always this way. It’s a learned optimism that has worked to my advantage. MS has tested my mettle so many times: taking away my driving ability, my sanity, my energy, my proper bladder and bowel functionings, my career, and my stubborn pride. Most of these things have been restored, or at least brought back to a functioning level. A couple of things are still pending, but I refuse to let this stupid disease get them.

Because it is unrealistic to think that life’s glass can ever stay completely full at all times, I am satisfied with keeping it half full, as opposed to half empty. Here is what I’ve learned about keeping the MS glass half full:

Be the Tortoise, Not the Hare

I used to rush around, giving little thought to what I was doing hour-by-hour. More interested in the destination, not the journey. I didn’t thoughtfully plan for things that gave me true, lasting happiness. Now that I have more time on my hands (maybe too much some days!), I stop to think about what will make me genuinely happy. Or make someone else happy. True, deep happiness is now high on my priority list. I work slowly towards my dreams— having a freelance writing career that will financially provide for myself and my husband, possibly adopting a child, possibly getting a higher degree in something (I love learning new things.)….I think all of these are possible, but with MS they become true, deliberate gifts through slow, deliberate planning. Bill and I like to compare ourselves to Bill and Karolyn Slowsky, the turtles in those cable commercials. Slow and steady….

Don’t Give Away the Emotional Farm

This might sound greedy and selfish. But it’s not: I selectively choose what to focus my mental and emotional energy on. I cannot possibly listen to everyone’s problems, help everyone with their problems, be everyone’s best friend, and expect everyone to listen to my own problems. It’s just not healthy for anyone. When my friends start in with problems, or I find myself venting, we reciprocally do this for a bit, but then we move on. Unless it is something completely traumatic, we all know that it, too, shall pass. I’ve also gotten rid of foul weather friends— those who only like me when they and I are miserable— because they can be worse than fair weather ones. It’s all a matter of self-preservation. I’m a big fan of survival.

Choose Joy

Sounds crazy, doesn’t it? That someone would choose misery intentionally. However, joy doesn’t happen automatically. It must be sought and cultivated. It must be regularly tended and held in the highest esteem. Even during the darkest hours, when MS wants to steal it all away. Say no. And hold onto it tightly because it is rightfully yours.

Find Something You Love or are Exceptional at and Cultivate It

What comes easily for you? Leading others? Writing prolifically? Are you good with numbers? Is it art? Is it your fabulous golf swing? Do you simply have a gift for conversation? Then as the Nike commercials say, “Just do it!” Find that thing that you were meant to do and BRING IT. It will, in return, provide you with so much joy. There is always something you can do, no matter what your condition. Something that is a gift in you.

Don’t Confuse Optimism with Fantasy

Optimism is not thinking that your MS will go away. It is not thinking that being joyful will take away all your money problems and health concerns. I watch my own limited income come and go in a matter of a week and wish I was working full-time again so that we could just go on a much needed vacation. But I will be satisfied with a weekend trip to Cape May or maybe Atlantic City. I’m so glad we’re able to do this again, after several years of totally struggling. No more fantasies about wealth here!

Be Grateful for the Big and the Small

  1. I’m grateful for having a moderate course of MS, because so many people do not
  2. I’m grateful for my tiny shack of a house, because we didn’t lose it when times were the toughest
  3. I’m grateful for my writing abilities, because they will come to sustain me both mentally and financially
  4. I’m grateful for my wonderful husband, who has been nothing but supportive, both emotionally and financially….because I know that so many folks are travelling along this MS journey without a mate
  5. I’m grateful for the humbling experience of accepting help (both emotional and financial) from family and friends
  6. I’m grateful for social security disability insurance and our modest health insurance, because so many MSers are still trying to get by without either, and this is what’s keeping us from complete poverty
  7. I’m grateful for my cat, who is fat
  8. I’m grateful for the sun that shines through my patio door at the present moment
Posted in MS and Emotions

Dan Powell’s MS Story

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This is a touching and honest view of multiple sclerosis from the male perspective. Since the disease predominantly strikes females (as do most other autoimmune diseases), it’s interesting to view Dan’s story and see how MS affects a man’s life. He paints a realistic picture of the disease, but he still exhibits an indomitable spirit. The video was made in 2006.

Posted in Videos

MS Spinal Cord Attacks and Symptoms

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The Spinal Cord, Google Images

Doctors have identified specific areas of multiple sclerosis damage that correlate with specific MS symptoms and impairments. Depending on the location of a lesion (MS nerve demyelination), the resulting damage will affect sensory perceptions, motor skills, vision, balance, swallowing, and so on.

Spinal cord attacks— those that occur anywhere on the spinal cord from the cervical region (the neck) down to the thoracic region (mid-back)— are the most common form of MS relapses (approximately 42%) and can result in the following impairments:

Sensory Functions

paresthesia: unpleasant sensations in the limbs and torso such as pins-and-needles or tingling, buzzing, hot and cold sensations, wetness, banding or tightening around the mid or upper torso (the “MS hug”), or vibrating sensations

Lhermitte’s sign: a very common sensation of tingling or electrical impulses that radiate from the neck down into the arms and legs when the head is bent forward

numbness: this can be mild, with a slight impairment of feeling, or more pronounced, with the inability to sense one’s limbs or trunk, causing problems with sitting and movements (clumsiness)

Motor Functions

spasticity: muscle spasms that cause rigidity and involuntary jerking in the limbs and trunk. The legs are the most common area for this to happen. Spasticity can increase at night or with fatigue, and a common complaint is “restless leg syndrome”, where leg muscles will alternate between jerking and cramping. Muscle stiffness is another problem.

weakness: heaviness and/or tiredness in the limbs. Often noted at “walking through cement” or “having lead limbs.” This can cause problems with walking, standing, and dexterity (including problems with writing and properly using the hands.) Sometimes rest can help limb weakness.

Bodily Functions

bladder and bowel problems: these can include emptying and/or holding the bladder or bowel. The muscles that control these are compromised and problems with bladder infections and constipation can result. Also, urgency can be increased and holding becomes an issue.

sexual dysfunctions: men and women can have numbness and tingling in the genital regions, and problems with erections and arousal

Reference :

  • Rosner, Louis J, MD, and Shelley Ross. Multiple Sclerosis: New Hope and Practical Advice for People with MS and their Families. Simon & Schuster: New York, NY, 2008.
Posted in MS Symptomology
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