Monthly Archives: September 2009

Grapesurfer Wine Fundraisers for MS

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.

Two Examples of MS Strength

“….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


MS: What Will the Neighbors Think?


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!


MS and Genetic Research Survey

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.

MS Break and Labor Day Weekend

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.