I am not sure when I first found Stuarts blog and website but I get most of the ideas for my MS Post from him. I wanted to give all the other MS patients out there the link to both of his sites and information about him. I re-posted this from his website with his permission.
About Stuart Schlossman – Updated 12.16.09
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MS Patient, Writer, Blog writer, Editor of Stu’s Views and MS Related News and Founder of the ‘MS Views and News’ organization
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My name is Stuart Schlossman and I Have MS. Relapse Remitting to be more specific.
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I live just outside of Fort Lauderdale, Florida. I have been married since 1988 to Patrice, and have two grown daughters and three grandchildren. When I am not resting I have three dogs that keep me busy and I volunteer as a co-facilitator for the National MS Society, as well as for MS Views and News.
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I was diagnosed with relapse-remitting MS in December 1998 after several years of symptoms including headaches, blurred vision, fatigue, vertigo, carpal tunnel syndrome, Bell’s Palsy and leg stiffness.
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Having gone through the process of checking for a brain tumor or other severe problems, MS was finally diagnosed. Although I was relieved to learn that I didn’t have a tumor, I was still dumbfounded and was severely depressed for many weeks.
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After meeting other people with MS, I felt I had to help those whose symptoms were worse than my own. I don’t see MS as a disease – for me it is an illness, one that I had to do something about. I was once in denial and then realized that I was “chosen” to have this illness. Chosen for the mouthpiece that I have and the desire to help others.
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I formed an independent support group but wanted to achieve more. I contacted the National MS Society and a year later became the Committee Chair of the South Florida, Coral Gables MS Walk event. Every year my MS Walk Team, Team Hot Shots, has raised lots of money over the years. It is great to know that a part of this money is being used to fund patient programs in the local area, and a percentage is also used to fund research. For me, the Walk is both therapeutic and empowering. After Chairing the Coral Gables walk for (5) years, I went on to chair the Ft. Lauderdale walk for a couple of years. Last year, was my last, in chairing walks as I have found that with the time that my body allows, I need to concentrate on what I do best.
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In 2003, with my cognitive functioning worsening, and fatigue becoming an even greater issue, I found it increasingly hard to concentrate and carry out my job as part-owner of a business and in April 2003 I stopped working. This wasn’t easy but it did mean I had time to help others with MS.
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In 2005, I decided that I would like to do more so I designed and helped to organize The MS Health Expo for the National MS Society’s chapter here in South Florida. This first event took place in January 2006 and has continued to help many affected by MS each year. Most beneficial is the panel of MS professionals that lead a Question and Answer (Q&A) session.
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I have co-facilitated a local MS support group since the early 2000’s. This support group has become more of an Education Program and continues to meet once a month. Guest speakers are invited to discuss the issues and topics faced by the members. Topics have included a wide range of needs by the MS patient. For me, the group is about educating and empowering people with MS and their caregivers to make the most of their lives through better management of the illness. Each year, we have our holiday party and Santa (ahem) comes for a visit to put needed smiles upon those that attend this yearly function.
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Sorry to be jumping around with the context but In approx 2005 – (my memory is horrible so I really do not know if 2004 or 2005 ), I began writing archiving information in a blog called Stu’s Views and MS Related News, which was later superseded by the current version, Stu’s Views & M.S. News. It is the blog postings that provide most of the information found in each week’s e-Newsletter.
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“Stu’s Views and MS Related News“, is an e-Newsletter that I began sending to just those involved with the support group in about 2001. Then more and more were learning of the information that I was sending each day and eventually I had to stop sending daily messages as the information just continued to surge (via my knowledge of the internet) and the amount of people asking to be registered climbed to such heights that it made it impossible to send the information daily. In approx 2005 I had to begin only sending the newsletter once per week as the information was clogging people’s inboxes as I was one of the few, sending MS related informational e-Newsletters as that time. Now there are many organizations doing the same thing and many have coined my phrase: “e-Newsletter”.
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Recently when looking at notes of mine so that I could write this profile, I noticed that back in 2007 when I was doing an interview for the MS International Federation (MSIF), I reported that 900 people were receiving my e-Newsletter. However as of today’s writing (December 16, 2009), I can say that I am now sending this e-Newsletter to e-recipients in (58) countries and upwards of 6000 are reading it directly from me, each week.
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I and/or “MS Views and News”, can be found on Facebook, Twitter, Live Journal and Linked-In.
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Monthly, our site is viewed well in excess of 100,000 times by people from all over the globe. Oh yes, I do love the internet. My vision for this organization is for MS Views and News to globally raise the level of education and awareness to millions of people impacted by Multiple Sclerosis.
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I want to empower people with knowledge via my website, e-Newsletters, blog and by providing education programs that I know as a patient, is needed by my peers.
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For that which I have been doing, others are taking notice. Many large MS organizations, such as the National MS Society, The MS Foundation, The Heuga Ctr, (now known as Can Do MS) and others have asked and continue to ask me to post items to my blog with regards to their organizations or with regards to topic information that they want greater exposure. In reward I guess (best to say) some have done interviews of me, like the MSIF did in 2007 and the MSF has written of me a few times.
Most recently, the National MS Society added this to their website: “Ex-Salesman Uses Net to Inform, Persuade” – Posted in April 2009 to the National MS Society’s website.
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At one time and not too long ago, I was still extremely active. But the disease has caused me to make major modifications to my lifestyle, which I am sure that many with Multiple Sclerosis can understand. My fatigue hits hard each day and then this seems to cause secondary symptoms such as vertigo, blurred vision or the annoying tingling. I live with headaches most days and otherwise have varying pains, including skeletal pain, cramps and spasticity. I cannot type for long as my fingers cramp or ache. I cannot sit for too long or my body stiffens. I cannot stand for long or walk too much because I lose balance. Fatigue strikes everyday. Usually at about the same time, but sometimes it fools me and arrives a little earlier or a little later, depending on my activities.
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Fortunately, I do what I do, from the privacy of my home office. I stop as often as needed to take breaks, take a nap, and read or to just play with my dogs
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I have used many of the different MS medications and advocate their usage for all MS patients.
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What may good for one patient may not be for another. Hence the reason for different products such as Tylenol, Advil and Motrin. Same principal, behind this. All who have Multiple Sclerosis should be using one of the FDA approved medication to delay progression of their disease.
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My current motto is: “Why Accept Disease Progression”? Especially when there are so many choices, thanks to broadening MS research.
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I hope that one day there is a cure for all of us living with MS and then a way to be found to reverse whatever damage has been done to our bodies and minds by this illness.
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Dr. King once proclaimed “I have a dream”.
Well, Stuart also has a dream. My dream is a world in which all men and women with MS can live independent of this disease (illness).
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The information found above was updated by me (Stuart Schlossman) on December 16, 2009
Since December 2009 – Our newsletter as of this mention (April 2010 ) is now being received in (72) countries
I haven’t done a MS update in awhile so I figure now is a good time to catch everyone up on how I have been doing. I have an infusion this Friday and than a MRI on the 21st after work. In September of 2011 the company I work for switch insurance companies which means that I had to miss a infusion and I am still trying get to back to feeling great again. I am glad that the Tysabri does make me feel good once it gets built up in my system. I have been on Tysabri for about 3 years or so and for me that is huge. When I was younger I refused to stay on a treatment because all the medications that they had for MS then made me so sick.
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