MS: Today I Feel Angry

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I have to admit that my feelings about my status quo change almost daily. No matter how much I try to rope in my moods and put on a mask of gratitude, I most certainly do not FEEL gratitude every waking moment. Just the nature of the MonSter I suppose.

I’ve become acutely aware of my feelings over the past several years and I notice a pattern: I go through cycles of low-level depression/anger every couple of months. It’s a vicious loop, but I imagine it just goes with my personal situation: being out of the workforce at the tender age of 38. I am not feeling sorry for myself or asking for sympathy, but merely acknowledging how I feel. Feelings ARE legitimate and with multiple sclerosis (or any other chronic illness) they can and WILL fluctuate, depending on the circumstances of the day. So I feel the low simmer of anger today as I sit here and feel underproductive, underutilized, and definitely underpaid! Where went that career I was promised in my early 20’s?…

A lot of days I DO NOT feel angry. I feel downright blissful and productive and appreciated. These are usually the days when I leave the house to volunteer or be with family and/or friends. Full days that remind me of how I used to be. Today is no such day. I need to self-start and motivate myself to study for a class test (I’m taking a psychology class which I do, in fact, love.) And some days I find this very tricky. I have also been sending out job inquiries with little response. So I stew….. I try to explain this pervasive feeling of anger / depression to others who don’t have MS and I don’t think I’m fully understood. The anger stems from a lack of utilization. I am like a slightly older toy, sitting and waiting for use because I am still mobile and physically viable, just slightly slow and gently worn. Under the right conditions and with a little care, I can work and be useful.

Here are some things I’ve found that really burn my Bunson:

  • I look at my years-old clothes in my closet, and I wanna bag everything up and bring it to Good Will. But I haven’t any extra money– because I’m underemployed— to buy a new winter wardrobe. The same holds true when I wanna pitch all of my old housewares/bedding/linens and I realize my money’s already spent.
  • I see some able-bodied person landing a journalism job outside of the home and I wish it was me.
  • I make contacts for new writing opportunities and I hear nary a response! This one REALLY singes…
  • I haven’t a grasp of where the day will go— too much free time— and I long for a no-brainer schedule.
  • I KNOW I should be making a reasonable living as an educated, full-fledged adult and I am NOT.

Now I admit that a lot of this anger is trivial, but that’s the way it is. Some days are just not the “full-of-gratitude, I’m-successfully-fighting-my-MS, I-won’t-let-this-condition-ruin-my-mood” sorts of days. Nothing wrong with that. The feelings are honest and they too shall pass. But they are real and they have a right to be acknowledged.

Posted in MS and Emotions

Grapesurfer Wine Fundraisers for MS

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I came across this awesome Massachusetts wine distributor that custom-makes fundraising wines and wine packages for interested organizations. Grapesurfer has been around for several years and has collaborated with the likes of David Ortiz, Dan Marino, Ken Griffey, Jr.,  AND several of the National Multiple Sclerosis Society’s regional chapters.

The founders, Andrew Graff and John Corcoran, reveal the process: they are able to buy the wine varietals well below market price (due to good will amongst distributors/wineries/suppliers), allowing organizations to receive 100% of the online retail profits towards their fundraisers. These guys have found an innovative— and tasty way — to let consumers donate to their chosen charities as well as to start fundraising efforts for their own organizations.

Posted in Fundraising Info

Two Examples of MS Strength

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“….beauty remains, even in misfortune. If you just look for it, you discover more and more happiness and regain your balance.”

~ Anne Frank

Some days I open my email and/or read my comments and I’m blown away. Today I’m having this sensation as I behold an email with the above quote from Herrad, my reference that I turn to again and again when I need to understand MS tenacity, steeliness, and absolute bravery. I haven’t been over to her blog Access Denied – Living with Multiple Sclerosis as of late ( I do have her blog and a small collection of other blogs in my Google Reader treasure trove.) I DO follow along silently and listen to her story: I sometimes feel that responsive words are not necessary. I suggest you take a look, as she is a fantastic and emotional storyteller.

The below comment I received on my About page (as often happens when people come across this site through search engines or just by accident.) I DO appreciate them and they make me realize that I’ve touched others, maybe in moments of sadness, joy, weakness, or strength. Thank YOU for making my day, Bruce, and I’m honored that YOU’RE bookmarking ME…. 🙂

Hey Jen,

I’m part of the minority (males) who was also diagnosed late in life. I’m currently 53 and was diagnosed just before Christmas in 2007.

I probably had MS for a much longer period but a serious rollover auto accident back in 2000 and the physical aftermath hid the real cause for a slowly developing limp and my mobility issues.

I’m lucky enough to still be working at the same job I have had for over 36 years but I am also worried about the future. I came out of the MS closet just before last Christmas to two upper management co-workers and shared my condition with two more this past week.

Kudos on your web-site! I have bookmarked it and look forward to visiting it regularly as a resource. As my condition changes I am starting to go back in the research mode to educate myself.

It’s obvious you are a glass half full lady and I believe that helps. My motto which I told my bosses when I shared my condition with them was… I still had a great head on my shoulders and I could still get across the room when needed… it was just going to take me a little longer in the future.

Regards,
Bruce


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MS: What Will the Neighbors Think?

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I’m remembering back when I lived with my friend more than a decade ago. She had a townhouse and was very mature: she also had a stable job, a mortgage that she financed on her own, a pet, a decent car—okay, she was 8 years my senior so it made perfect sense– but what I most recall about my time there was the family next door. A husband and wife in their thirties with a young son. We often spoke to the husband and saw the boy playing out in the front or back, but the wife was rarely seen. My housemate finally told me that the wife had multiple sclerosis.

I’d heard of MS and what it meant long before I developed it. Although before I began displaying symptoms, I had some preconceived notions about the disease. Don’t most people? Seems that to REALLY grasp the ins and outs a person might have to live with multiple sclerosis. So at that point in time the disease was still shroud in some mystery. Were people quickly disabled? Were there effective medications? And this neighbor barely left her home. I was a bit confused.

On Halloween one year, we (me being immature and dressed like a ghost and my housemate looking like a woman in her 30’s with a young trick-or-treater) stopped by the neighbors’ home and this woman came to the door. She was a bit slow, but she displayed no other signs that revealed her chronic, debilitating condition. And she was NICE! I don’t recall if I ever spoke with her again during my time in that townhouse. I am very close with my friend who still lives there, and she told me fairly recently that this woman declined, possibly because she had no outside or online support networks or helpful treatment options, and so her husband and teenage son moved her into an assisted living center nearby. This broke my heart: if I had known how isolated she was, and that I too would eventually have MS, I could have done more. But what do we really know about our neighbors behind closed doors?

When Bill and I moved to our home about 5 years ago, we immediately met some of our neighbors. The ones diagonally across the way were quiet and childless, like we were. The guy next door was also quiet and worked nights. I still find myself talking to him over our backyard fence in the late afternoons. Our next door neighbor was elderly and scattered, but clean and pleasant. The neighbors across the street seemed very friendly and outgoing and I found myself bonding a bit with the wife. She worked in social services. I decided to reveal my illness to her and no one else.

During a time of extreme stress a few years ago– I was beginning a disease-modifying med, in the midst of a severe relapse, and I had just lost my job— I remember my friendly neighbor calling to me from across the street to make sure I was okay. Thank you, I thought. I needed the interaction to feel less like an isolated housewife and more like a part of society. I was often by myself in MY house and I wondered what the other neighbors could possibly think about a young woman home day-in and day-out with no children.

It was about this time that I began to observe my neighbor’s husband, who was legally blind and used a stick to get around the yard. He was amazing! I didn’t pry into the reason for the blindness. Did it really matter? I would often see him ducking into a cab in the morning and returning later in the day. He was getting out and living his life and I vowed that I would follow his example. Being unemployed and on disability did not give me a license to sit back. I was well enough to still get out and contribute to society (although the recent bout with double vision gave me a healthy fear of getting back into the world.)

Very recently I spoke to my neighbor about an issue and we got on the subject of emotional counseling. I revealed to her that I saw her last name and address on my health insurance provider’s list when I was looking for a therapist to deal with my MS a few years back. I had no idea she was a clinical psychologist. She paused and said, “Jen, my husband is the psychologist. He sees patients on a regular basis during the week.” At this point my resolve increased ten-fold. This man, my neighbor and whom I knew so little about, was treating patients while at the same time coping with a serious disability. He would venture out into his yard, stick in hand, with what looked like little regard for what the neighbors thought. He sat on his porch and listened to National Public Radio. I even saw him jump in our river last summer and swim without any guidance.

I now know there is something within all of us–MS or not—that is indomitable and can thrive despite some of the roughest challenges. It is within me and it is also within you. And really: who cares what anyone else thinks!


Posted in MS and Emotions

MS and Genetic Research Survey

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I read this on Lisa Emrich’s website and felt the need to pass along the information:

Earlier today, I was contacted by Virginia Hughes who is a freelance science writer with a special interest in genomics and disease, specifically autism and schizophrenia. She is participating on an ethics panel at the 2009 Cold Spring Harbor Laboratory (CSHL) conference on Personal Genomes. Virginia says that “they’ve asked me to comment on what I think is the current and future appetite for genetic testing among people who belong to various disorder advocacy organizations, such an MS organizations.”

Virginia is looking for solid numbers to include in her presentation, so she created a survey about our thoughts on Multiple Sclerosis, Genomics, and Genetic Research. The survey is simple – only eight short questions. Virginia would appreciate receiving at least one hundred responses so that the results might show some meaningful trends. Perhaps we could spread the word and get even more than that.

Please complete the survey and be sure to mention the MS blogs and groups where you often read MS-related information.

Thank you,

Lisa Emrich
(Brass and Ivory)

***Feel free to copy/paste this post in its entirety and post it on your blog and at your favorite MS forums, message boards, and social networks.

Posted in News / Research

MS Break and Labor Day Weekend

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It’s honestly great to have been away from routine multiple sclerosis writings. Although the condition is a big part of my life, I try not to let MS rule. And I have the luxury of being well enough to actively seek respite, but seasoned and knowledgeable enough to never take the respite for granted. The summer has come and gone and my mind’s been elsewhere. I’ve maintained some writings here and I will see some changes occur in September concerning my New Mobility work as well as an innovative project that will also be starting.

Enjoy your end-of-summer weekends and the possible new beginnings that this time of year often bestows.

Posted in Blog, Videos

How the National Telecommuting Institute Works

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I recently received an email from someone questioning a call they got about working for the Internal Revenue Service. Since I posted about NTI and their at-home employment for people with disabilities, I want to now clarify that the National Telecommuting Institute is a non-profit organization based out of Boston, MA. In order to be considered for employment with them, you must go to their homepage and click on “New Applicants Start Here.” This will lead you to a general information page about NTI and then you may browse current openings by clicking the link to the upper left of the page. If you find a job that interests you, you may click on it and fill out an application towards the bottom of the page. Then NTI will contact you to interview you and assess your computer skills. NTI contracts with the Internal Revenue Service on a yearly, seasonal basis, and they do offer work with them. However, solicitors calling about working for the IRS have no connection with NTI. You must make contact with NTI first in order to be considered for employment.

Posted in Working/Volunteering Info

My Interview with a Journalism Student

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I recently had the opportunity to be interviewed by Madeline Eubanks, a journalism student at the University of Washington. She was piecing together a story about the benefits of technology for MS patients. Another writer and I were mentioned for our websites, as well as MyMSMyWay.com for its technology collaborative.

Interesting piece:

People living with multiple sclerosis are using blogs to create a network of similar patients to share tips, experiences and important information.

MS is an autoimmune disease that targets the central nervous system when the body’s defense system attacks the myelin sheath that surrounds the nerves, disrupting nerve signals. This chronic disorder can lead to disability and death.

“I was looking at my son,” said Jaime Hagarty, an MS patient, discussing one of her MS relapses. “And I couldn’t even tell you what his name was. I knew he was my son, but I just couldn’t match that up cognitively.”

Hagarty said that when she was diagnosed in 2004, she felt like she “lost control” over her life. In March 2006, Hagarty started a blog called My MS Journal (http://mymsjournal.blogspot.com/) as a “creative way” to deal with her illness. Within a week of opening the blog, Hagarty received comments from people “all over the world.”

“I didn’t think that anyone would care about what I had to say,” Hagarty said. “I never expected to have the response I did because I never figured anything I had to say, and what I was going through, would mean anything to anyone else.”

Hagarty has been named a Top Health Blogger by the Multiple Sclerosis Community of Wellsphere.

“I realized that there were people out there with MS who were going through similar things,” Hagarty said. “I realized there was this great network out there. That really inspired me to do something more than just a journal. I started to make it a one-stop shop for people with MS. I wanted it to be a resource for others going through the same thing.”

Hagarty’s blog has not only helped other people. She’s also helped herself. “My blog has saved me. When I started my blog, it opened up a whole network of people like me,” Hagarty said. “It has helped me understand my illness.”

Jennifer Gerics, age 38, was diagnosed with MS in 2005. Gerics maintains a blog called MS Strength (http://www.msstrength.com/). She started blogging in 2008.

Gerics covers a wide variety of topics. Some of her topics include book reviews such as “Women Living With Multiple Sclerosis” by Judith Lynn Nichols, MS off-market drugs like Low-Dose Naltrexone (LDN), and the first World MS Day on May 27, 2009.

“I just wanted to tell my story and give others positive encouragement,” Gerics said.

Blogs are one of the several technologies MS patients are turning to. On July 16th, MS Technology Collaborative, a team sponsored by Microsoft, Bayer Health Pharmaceuticals, and the National MS Society, launched the three “Brain Games” to help MS patients exercise the visual, dexterity, and cognitive functions of the brain.

Ellen Kampel, a public affairs manager at Microsoft, is a co-author of the Tech Connect column at MyMSMyWAY.com, and has lived with MS for thirty years. She has also tested the Brain Games.

“It’s kind of like brain aerobics,” Kampel said.

Kampel’s MS symptoms include temporary losses of vision and the muscles in her hand “locking up.” When these symptoms occur, Kampel uses other technologies such as voice recognition software.

“It’s important that technology can adapt to the changing needs of the individual,” Kampel said.

Elizabeth Morrison is a physician at Cascadia Multiple Sclerosis Center, a clinic that serves about 320 MS patients. She has a mild case of MS. Dr. Morrison is also on the MS Technology Collaborative steering committee and was a beta tester for the games. She has referred the games to some of her patients.

“It’s nice to have something free and online and easy to access,” Morrison said.

Dr. Morrison also mentioned the Snapshot Tool of MyMSMyWay.com that indicates symptoms patients are having, such as cognitive issues or motor control problems. When the basic symptoms have been found, the Snapshot Tool guides people to different resources, such as text readers or voice activation.

“The sky is the limit when you have resources,” Morrison said. “There are all kinds of amazing technologies that are available for people.”

Hagarty is “grateful” for the assistance technology has given her, especially for the network her blog uncovered. “It’s nice to have that support system,” Hagarty said. “It’s nice to know that you’re not alone.”

Posted in Blog, News / Research

MS Brain Games

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Those with multiple sclerosis are often affected by cognitive problems– lesions within the brain can alter memory, verbal comprehension, and analytical skills. Two online games work to build mental stamina and accuracy, as well as comprehension for increased brain speed:

1. I was recently contacted by the website initiative MyMSMyWay.com to review its resources: adaptive online help, needs assessments, and the new MyBrainGames application. Having tried out the games, I’ve noted the use of memory-building (remembering a list of items), association-building (making connections with words), dexterity-building (using hand movements to “reach” for things or “jump/duck” to avoid other things), and identity-building (picking out like items) applications.

Players can track scores and watch their progress over time. There are several levels for the games so players can also advance their individual skills. With the website’s adaptive technology, players with visual impairments can also alter settings for the best screen view, something not often considered on regular internet games.

MyMSMyWay.com is a fantastic website that thoroughly examines helpful adaptive technology specifically for MSers. It is also run by people with MS who KNOW first-hand about impairments.

2. Another valuable internet game that can stretch Msers’ mental skills is oddly located on Facebook. This interactive community has many games and one in particular proves to be quite challenging and speed-testing. “Who Has the Biggest Brain” can be accessed through a Facebook account and it tests analytical, calculative, memorizational, and visual processing skills. I found this game more difficult— it involves complex calculations and memorizations— but I enjoyed the pace and found myself going back to increase my score. The downshot with this game is that there are no easy screen alterations for better clarity: the game is intended for the general population.

Posted in MS and Assistive Devices

MS News

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Decreased Cancer Risks for MS Patients?

A recent Swedish study yielded an interesting statistic about its country’s multiple sclerosis patients: there was a noted lowered risk for developing various forms of cancer. Dr. Shahran Bahmanyar (of Sweden’s Karolinska Institute) lead this study which tracked the records (over the course of 35 years) of roughly 20,000 Swedish MS patients v. approximately 200,000 people without MS.

Findings included a 10% lowered risk for a number of cancers. Specific types included pancreatic, ovarian, stomach, lung, prostate, and lymphatic. Says Dr. Bahmanyar, “We speculate that the lower risk for cancer among people with MS could be a result of lifestyle changes or treatment following diagnosis.” The lowered risk was also slightly more pronounced in female MS patients.

*For more information about this study, see Medscape Today.

The Global Idea: A Community Blog for Travelers

Do you ever wonder where you can find helpful, practical tips for your vacation that pinpoint easily-accessible transportation, tourist sites, and accommodations? And do you want to inform others about the great travel tips you’ve already learned? Well, some wise folks at the website The Global Idea came up with a fantastic idea: a travel Wikipedia (an online encyclopedia which is updated and changed by its readers) for those with special travel needs.

The Global Idea is set up with a main page (featured travel destinations and instructions for contributing are presented here), a FAQ page, a help page, an online store, a travel blog written by the creators, a link to important websites, and an extensive destinations index which spans the entire globe.

*Visit www.theglobalidea.com to access this travel Wikipedia.

Posted in News / Research
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