Written by Mandy on Tuesday, September 30th, 2008 in Caregiver's Corner, Emotional Issues, Links.
We have learned that there are few things more important than our simply enjoying our time together no matter where life may take us. MS, despite what you might think, has in some ways done us a favor. It has made our marriage stronger by teaching us that while time is the most precious of all commodities, the moments we spend together are more precious still.
Written by Mandy on Monday, September 29th, 2008 in Emotional Issues, General, Links.
When it comes to multiple sclerosis, are you an optimist or a pessimist? Is it possible to be both?
Lisa Emrich (Brass and Ivory) says, “It’s difficult for me to sort out whether I’m pessimistic or optimistic or skeptic or ignorant.” I’ll second that.
I call myself a pessimistic optimist.
Written by Mandy on Wednesday, September 24th, 2008 in Emotional Issues, Family, Links, Symptoms.
“Don’t worry, I’ll rally before then.”
“You’d better hurry up and get better, we’ve got that trip coming up.”
“I’m sure I’ll be getting better now… I’ve got so much to do next week.”
Even as we speak the words, we know how meaningless they are, but MS plays mind games in our house.
Does MS play mind games in YOUR house? Read the rest of our story here.
Written by Mandy on Monday, September 22nd, 2008 in Emotional Issues, Links, Symptoms.
Hello. Allow me to introduce myself. I am MS; that’s short for multiple sclerosis.
ABOUT ME:
I enjoy tricking your body into attacking its own myelin, the material that protects the nerve fibers in your central nervous system. I know I’ve done a good job when the signals traveling through your CNS are interrupted, causing all manner of crazy symptoms, from simple numbness and tingling to paralysis or blindness. I manage to hold off medical intervention for as long as possible by masking symptoms, and even disappearing altogether for long stretches of time. For sport, I sometimes masquerade as other diseases. By the time of diagnosis, many patients have had their sanity questioned.
Written by Mandy on Friday, September 19th, 2008 in Caregiver's Corner, Emotional Issues, Links.
“I wish you didn’t have MS but, since you do, welcome to the club.” There was an instant connection through this crazy thing called MS. Once you meet up with another person living with MS, it’s as though you’ve given the secret handshake for an exclusive club. Even if you’ve just met, there is an instant connection of shared experiences and questions.
Written by Mandy on Thursday, September 18th, 2008 in Caregiver's Corner, Emotional Issues, Links.
I’m going to let you in on a little secret. I hate Mandy’s MS with all my heart. But I love Mandy more. I know that it’s not her fault and I’d do anything to rid her of the disease. But that doesn’t stop me from resenting MS and what it’s taken from us in terms of the limitations that it has put on how we live our lives. Mandy understands this and feels the same way. The thing to take from this is that we fight MS together. We have a shared hatred of the disease. We both own it, just as it owns us.
Written by Mandy on Wednesday, September 17th, 2008 in Caregiver's Corner, In The News, State of Health Care.
If you are a caregiver, or interested in caregiver issues, be sure to tune in on Thursday, September 18 for a live webcast announcing the launch of Ask Medicare, a new initiative for caregivers. This promises to be a valuable resource for those caring for loved ones over age 65.
During the one-hour Webcast, you will be able to:
· Learn about Medicare’s new online resources for caregivers
· Post questions to CMS Acting Administrator Kerry Weems & experts from AARP, J&J and other organizations
· Browse the new Ask Medicare Web site
· Sign up for the Ask Medicare e-newsletter, which is dedicated to caregivers
Now is the time to make your voice heard!
Ask Medicare Live Webcast
Thursday, September 18, 2008
12:00-1:00pm EST
CLICK THIS LINK TO REGISTER
Cross posted on BlogHer
Written by Mandy on Wednesday, September 17th, 2008 in Emotional Issues, Links.
“I’ve had such a hard time acknowledging I even have a disease. I’m a pain in the ass I think. I think of you all the time. You have 100x the issues and you seemed to have so much more grace and patience.”
That statement is an excerpt from the email of a very dear old friend. She shared some of the happiest times of my life, and supported me during the very worst time of my life. We’ve drifted apart since I moved hundreds of miles away, but the bond of friendship is a strong one, no matter how infrequently we speak.
Written by Mandy on Friday, September 12th, 2008 in In The News, Links, Symptoms.
I was surprised to meet up with a train on my visit to a local shopping mall. I was even more surprised to find that I was supposed to give it the right of way. Life with multiple sclerosis can be strange and complicated.
Written by Mandy on Tuesday, September 9th, 2008 in Links, Symptoms.
Life at the office can get interesting when you bring MS to work.
Tuesday, it was, “Wow… can’t believe you came in!”
Wednesday, it was, “Hey, you’re still lookin’ good!”
Thursday, it was, “You look like Tim Conway.”
Written by Mandy on Sunday, September 7th, 2008 in Extras, In The News, State of Health Care.
We just received an update on a previous post, MS: Misunderstood Around the Globe. Tae Kwon Do silver medallist Kirsten McLaughlin sent this message:
===
Kirsten McLaughlin Says:
September 7th, 2008 at 7:24 pm e
Hi there, I’m Kirsten McLaughlin and I just want to let you know that the decision has been overturned, im have now been awarded higher rate care and mobility components. Also thank you for your support by putting my story on your site.
Best Regards
Kirsten McLaughlin
===
It’s a pleasure to share good news once in awhile! Thank you, Kirsten. Our thoughts are with you.
Written by Mandy on Friday, September 5th, 2008 in Links, State of Health Care.
It gets an eye-popping response. An incredulous look. A momentary stare. That’s what happens when you get specific about the numbers. The numbers being the dollars and cents of health care.
Written by Mandy on Wednesday, September 3rd, 2008 in In The News, Links.
Public release date: 3-Sep-2008
Contact: Anne Carlantone
acarlantone@robinleedyassociates.com
914-241-0086
Robin Leedy & Associates, Inc.
Montel Williams MS Foundation announces recipients of 2008 research grants
Organization distributing $325,000 to forward research on early detection, myelin restoration and new treatments for multiple sclerosis… Read full press release here.
This press release about research grants given by the Montel Williams MS Foundation, contains a bit of fascinating information:
“multiple sclerosis affects more than one million people in the United States”
That’s a statistic that I hadn’t heard yet. The National MS Society generally puts the number at 400,000, which I’ve always thought was too low. Interestingly, this topic was just discussed on The Health Central Network’s Multiple Sclerosis Central.
Obviously, there is a lot of confusion on just how many people have MS.
Written by Mandy on Tuesday, September 2nd, 2008 in Extras, In The News, Links, State of Health Care.
Written by Mandy on Tuesday, September 2nd, 2008 in Caregiver's Corner, Emotional Issues, Family, Links.
Multiple Sclerosis– especially Relapsing-Remitting MS– will drive you crazy. I’ve been asked to fly cross country to give a seminar on a website promotion package that I’ve put together for a national trade organization. The conference where I’m going to speak is in Las Vegas, NV. So I said “Sure, I’ll do it.” and informed Mandy that we’re going to Las Vegas for a few days. I thought she might enjoy a little trip. Well, I said this a few months ago when Mandy was feeling pretty good. But like each of us knows, MS has a sense of humor– it lurks in the shadows, waiting for something that you really want to do before deciding to waggle it’s finger at you and say, “Not so fast– …
Read the rest of Jake’s story here:
Scaredy Scouts
