msf_staff: (Kasey)
Six Questions with...
Six Questions with Tim Carr, retired TV reporter


1. How has MS changed your life?

MS has made me a more compassionate and self aware person, one who is concerned about others particularly those who may be enduring a life altering illness.

2. What is the most important thing you’ve learned since your diagnosis?

I’ve learned that doctors and other medical experts don’t know everything and are quite often proven wrong when it is time to deal with a sickness. I’ve also learned that while not everybody that lives with MS has the same experiences, you can’t let that cause anxiety and worries in your life.

3. How have you found support?

First of all, I have my wife. She is my caregiver and conscience. I also have many friends and associates who are keeping a good eye on me. I’ve also found support from the various MS agencies and my treatment providers. I get a lot of support from my MS peer support group. My church congregation is a major supporter.

4. What is the best coping tip you’ve picked up?

I’ve come to realize that what ever the situation, it won’t last forever so you should not let it consume you or your life.

5. What is your favorite MS- or health-related website?

I go to MSFocus and the national and local MS Society websites.

6. This is the bonus question! What question would you like to ask our readers?

What does a person with MS look like?

Your answer?

Everybody else.

Really I think that sums it up, Tim! What do you think, readers?


P.S. to people who came over from other sites: You can still join the discussion! Our blog supports openID (meaning if you have a blog on another site, you can probably use that to sign in as an openID commenter) or you can comment anonymously.
msf_staff: (Kasey)
Six Questions with...
Six Questions with Stuart Schlossman of Stu's Views and MS News (an MS advocate, blogger, source for MS information and MS peer).


1. How has MS changed your life?

Hmm, tough question!! Well, I want to think that it's made me a better person. When not having a disability, we tend to see the world differently.

I was diagnosed with multiple sclerosis in 1998. After the usual few months of "why me?" I decided I was "chosen" to acquire this illness and with the use of my "big mouth," I could help to lead others... I want to leave my mark upon the world, letting others know that there are those who fend for them.

So, in answer to the question, how has MS changed my life? It has made me a more caring and attentive person -- towards most people. MS caused me to change from being obnoxious and abrasive to now being obnoxious and abrasive  and a "humanitarian.”

2. What is the most important thing you’ve learned since your diagnosis?

That much good often comes from bad things... There is always an equaling offset. All the good people that I may not have met, had I not been "chosen" and all the good that I have been able to give of myself, for those needing what I provide. Read more... )
msf_staff: (Kasey)
Six Questions with...
Six Questions with: William L. “Bill” Brayer - Founder of MS Helping Hands


1. How has MS changed your life?

From having my own business and being very active to adjusting as to what I can do and forget what I can’t. The best thing I did was to become an MS volunteer and founded MS Helping Hands-MSHH & the MSHH Donor Closet as both provide services & resources that are not provided by NMSS and other local social services agencies.

2. What is the most important thing you’ve learned since your diagnosis?

How serious MS really is and that there are NO two people with MS alike. The general public still doesn’t have full knowledge of the disease and what the people and families of those with MS have to go through and how their lives have and will change.

3. How have you found support?

From the Sno-King support group that I have co-facilitated for over 20 years and from the MSF. My wife, family, church and friends have been very understanding of my symptoms and what I am no longer able to do.

4. What is the best coping tip you’ve picked up?

Live each day as if it were the first day of your life and enjoy it to it’s fullest. You may have MS, but MS doesn’t have you.

5. What is your favorite MS- or health-related website?

I actually cruise the Internet to learn all I can from many sites.

6. This is the bonus question! What question would you like to ask our readers?

What would you do if the shoe was on the other foot?

Your answer?

I hope that I would never turn away from someone I love or care about because she or he had a disability.

Really good question, Bill! What do you think, readers?


P.S. to people who came over from other sites: You can still join the discussion! Our blog supports openID (meaning if you have a blog on another site, you can probably use that to sign in as an openID commenter) or you can comment anonymously.
msf_staff: (Default)
Six Questions with...
Six Questions with: Jude M. Hubber, Director of Customer Relations with the largest relay race in the world and a lover of life.


1. How has MS changed your life?

MS has changed my life in many ways. Most importantly it has taught me to reprioritize and realize I have strengths I might never have used before. I now let certain limitations open up doors I once never dreamed.

2. What is the most important thing you’ve learned since your diagnosis?

To be positive every day, and never let a bad moment carry to the next day.

3. How have you found support?

My family. Not everyone is as lucky as me. That is why I believe the MSF is such a great group. Being open is a great way to find support. If you have a question, just ask.

4. What is the best coping tip you’ve picked up?

Laughter. Don’t take things so seriously. Nothing in life is worth not laughing about. If you can’t laugh, smile. We teach children how important smiling is, but somewhere along the line we forget to teach ourselves the same thing.

5. What is your favorite MS- or health-related website?

Msfocus.org and espn.com.

6. This is the bonus question! What question would you like to ask our readers?

Do you hide that you have MS from anyone and why?

Your answer?

No! If I am afraid of being fired because I have MS, then I don’t want that job anyway. People need to be smart about making sure they are employed, but don’t lead a separate life just to feel more stable. The stability is nothing without honesty.

Jude is definitely open about his MS, as you can see in his MSF Ambassador video. It's an interesting question for our readers: Have you hidden your MS? How do you feel about it?


P.S. to people who came over from other sites: You can still join the discussion! Our blog supports openID (meaning if you have a blog on another site, you can probably use that to sign in as an openID commenter) or you can comment anonymously.
msf_staff: (Kasey)
Six Questions with...
Erika Bolin, Producer and Writer


1. How has MS changed your life?

How hasn’t it? I have slowed down and have taken a look at what has to be, what I want to be, and what is. I made some changes – all for the best – and I am now thriving again.

2. What is the most important thing you’ve learned since your diagnosis?

I must speak up for myself and learn to be my own advocate. But equally important, I also learned to ask for and accept help.

3. How have you found support?

Luckily I love to do research. I found the Multiple Sclerosis Foundation (among others). Through the foundation I discovered a reading library, a grant program, and a device program. I have been overwhelmed with the help they’ve given me I have come to realize I am not alone – even if my family is three states away.

4. What is the best coping tip you’ve picked up?

I am a huge dog lover. I read or heard somewhere live with MS fatigue properly you should think like a dog. Play then nap. Play then nap. And I would add, eat a well balance meal for your breed (LOL), drink plenty of water and not too many treats!

5. What is your favorite MS- or health-related website?

I have no one MS portal I go to. My favorite site is Pogo.com. It is a free game site I use medicinally (LOL). I believe in keeping my brain active. With all the choices, I can play as my mind is able. Just pop balloons or a game of team cards! My brain keeps firing up and on.

6. This is the bonus question! What question would you like to ask our readers?

What’s your biggest fear about being diagnosed with MS?

Your answer?

Many think their lives are over when first hearing they have Multiple Sclerosis. This is not a death sentence and progression is different for all. By becoming adaptable and flexible you can still have a great life! You can’t change the diagnosis, but you can also make sure it doesn’t change you: the inner you. Grieve, get mad, get sad, then meet back up and notice the sunset is still really beautiful – even if you now need help to get out and see it.

Let's hear your answers now - What's your biggest fear?


P.S. to people who came over from other sites: You can still join the discussion! Our blog supports openID (meaning if you have a blog on another site, you can probably use that to sign in as an openID commenter) or you can comment anonymously.
msf_staff: (Kasey)
When I recently polled our readers about what you'd like to see in this blog (and thanks to those of you who responded), some of the options were "Interviews with interesting people with MS", "Links to other sites of interest to people with MS", and "Discussion topics." Well, I realized I can do several of those things at once! Why not just ask the interesting people with MS what sites they like to use, and what topics they would like to discuss?

So I give you now a new feature of this blog: Six Questions with...

While I'll probably end up doing interviews once or twice a month, I decided to kick things off in style. From now until World MS Day (one week left!), we will have an interview a day! Starting with:

Six Questions with...
DAVID LYONS; TV/Film Executive Producer and founder of The MS Bodybuilding Challenge


1. How has MS changed your life?

I have always been a driven and motivated person. But having MS has made me realize that there is nothing that can stop me from my goals and it has motivated me even more to accomplish what others say is impossible.

2. What is the most important thing you’ve learned since your diagnosis?

I’ve learned that the world does not revolve around what I want just because I have MS, that I cannot pity myself for having the disease and that I need to make a difference so that people will pay attention to the MS cause.

3. How have you found support?

Through The MS Bodybuilding Challenge, which is my odds defying battle to compete in a National Physique Committee bodybuilding contest, I have found support from all over the world. What better way to get people to rally behind you then to do something that no one has ever done before?

4. What is the best coping tip you’ve picked up?

Never dwell on the disease. Focus on your goals and accomplishments and you won’t have time to cry over MS. Who’s listening anyway?!

5. What is your favorite MS- or health-related website?

I have to say my own site http://www.themsbodybuildingchallenge.com. I hear from people all over the world that what I am doing is an inspiration not only to MS patients but to healthy people. I didn’t get MS to inspire the world but now it is a by-product. How neat is that? Become a supporter.

6. This is the bonus question! What question would you like to ask our readers?

If you could do one thing to inspire people and bring awareness to the MS cause, what would it be?

Your answer?

I’m already doing it and it’s called The MS Bodybuilding Challenge!

Okay, readers! Let's discuss David's question. What one thing would you do?

P.S. to people who came over from other sites: You can still join the discussion! Our blog supports openID (meaning if you have a blog on another site, you can probably use that to sign in as an openID commenter) or you can comment anonymously.
msf_staff: (Anne Marie)
Sometimes, being empowered means doing something you never thought you'd be able to do. For some people, that might mean traveling across the country and taking a cruise. For others, it might be a physical challenge, like snorkeling or walking through the ruins of an ancient city. For some of our cruisers today, it meant holding a snake in the St. Maarten Zoo! Who knew that would be required?

Thursday was our visit to the last island on our trip, St. Maarten, which is a territory of the Netherlands on one side and France on the other. Both sides are lovely, filled with shopping and adventure. As with Wednesday, we had beautiful weather, clear and breezy. The trip to the zoo took about 30 of our group, most in wheelchairs or scooters, to explore the Dutch side of the island, starting with the local birds and animals.

After visiting with talking parrots, colored ibis, and some very cheeky monkeys who liked to throw sand from their enclosure, part of the group headed back to the ship, while others continued to explore the island. In the afternoon, we gathered again for trivia featuring some of our alumni cruisers, MSF staff, and speakers. Who broke their hand while punching out a fifth-grade classmate? We won't tell, but here is one hint: it was a lovely young lady!

Alumni cruiser Melanie Lorenz said she got in a lot of shopping at this port, but she made time to come to the quiz show too, where her veteran cruiser status came in very handy as she guessed clue after clue about her friends from past trips. "Every year, I enjoy this," she said. "There are some people here who I only get to see once a year.”

Tonight is our last formal night, giving everyone a chance to dress up. Tomorrow, our speakers begin again, covering MS symptoms such as cognition difficulties and speaking problems. Stay tuned!
msf_staff: (Kasey)
I just got an email that our RSS feed (which you can find here on LJ as [livejournal.com profile] msfocus)was added to Alltop's MS page. Alltop is apparently a service that aggregates RSS feeds by topic - they call it an online "magazine rack." I was really impressed with how the information was organized. It's nice to have all the newest MS headlines at your fingertips. How cool is that?

Also, did everyone see the segment with David Osmond on American Idol last night? (I remember when Alan Osmond was diagnosed, but I didn't realize his son had MS as well.) I just love it when MS gets national media attention! The more people learn about the disease, the more support there is for the cause. While he's probably not one of the contestants I'll personally root for (I have very strong Idol opinions, you see), I do wish him the best in the competition and hope he continues to speak out for people with MS.
msf_staff: (Kasey)
One week left, folks! If you live in the U.S. (or its territories) and want to apply for a Brighter Tomorrow Grant, now is your chance!

≈ A little over a week ago, I had the pleasure to meet David Lyons, of The MS Bodybuilding Challenge when he came to tape an interview for our website (here). I love how, for some people like David or Wendy Booker, a diagnosis of MS just turns their determination into overdrive and they set out on these quests. It's amazing, and I have a huge amount of respect for it (though, as a devoted couch potato, I can't claim to understand it).

≈ I'd love to know what those of you reading this would like to know about the MSF or our staff. I thought of posting some pictures of the office and/or staff - kind of a 'virtual tour' thing. Any interest?

≈ Finally, and apropos of absolutely nothing, this Saturday (9/27/08) is Museum Day here in the States, and Smithsonian Magazine is offering a FREE pass for two to museums and cultural institutions all across the country! All you have to do is print it out from their site. To make this even remotely on topic for this journal, let me just point out that most of the museums give accessibility information on their websites, so if accessibility is a factor for you, remember to check it out prior to your visit.
msf_staff: (Anne Marie)
If I were so inclined, I could easily spend eight hours, five days a week (basically my entire time at the MSF!) reading about MS. Even if I managed to get through all the books, websites and medical articles that publish daily, there would still be hundreds of blogs and personal websites to catch up on.

I start each morning in the communications department checking medical websites and journals for the latest news about MS. If that is the meat of my day, reading the MS-related blogs and creative postings all around the Internet is the dessert. I save my favorite ones for the very last, enjoying their wit, wisdom and way with words in the hopes that some of it will carry over into my own day’s writing.

Because the biggest part of my job is editing articles for MSFocus, the Foundation’s quarterly magazine, sometimes I’m lucky enough to find the most moving writing about MS right in my inbox. Since I started working at the MSF this spring, I’ve discovered how many artists, writers and particularly poets there are among you.

Where it often takes me hundreds of words to describe how I am feeling, so many talented people are able to get the complex emotions associated with MS across in just a few spare lines of verse. That’s one reason why we created the new Voices forum on the MSF website. We wanted to create a safe space for people to share their work and talk about what inspired them. And, it’s not just for poetry -- other writers, artists and photographers are welcome, too.

Here is one of my favorite recent posts, called “Attitude” by Stephen Knapp. Read more... )

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