MS Maze

The necessity of advocating for ourselves when it comes to health care is detailed in a report by CNN Medical Correspondent Elizabeth Cohen. It is a piece of advice I shall take to heart.

“I learned that I must always remain in control, double-check everyone’s work, and trust no one completely. I must have been sheer hell to be around. But I know that my cantankerousness saved my life on several occasions.” - Actor and Author Evan Handler

“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.

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

My daughter is dating a young man who is confined to a wheelchair as a result of spinal cord injury, and it has profoundly affected the way she sees the world.

You can read the rest of this story here:
“Handicapped People Steal Shower Chairs”

Company is coming! Some out of town relatives are stopping in for a quick visit. They are embarking upon a twelve hour drive with two small children, so arrival time is anyone’s guess!At first, I was so excited by the prospect of this visit, that I got carried away with plans. I decided on a menu which would satisfy the adults as well as the children, planned out sleeping arrangements, and decided on the breakfast menu. Then I realized that in my excitement I was getting way ahead of myself. Fatigue has been stalking me of late, and my legs have once again become weak and wobbly. I have to work smart these days. I suddenly had a mental picture of myself trying to time a dinner based on a twelve-hour car trip, and wondering what I wo…

You can read the rest of this post at The Health Central Network:
Have a Backup Plan

Happy Birthday, Mom (Jake)

Your Health is on the Line (Mandy)

Thank You, Professor Pausch (Mandy)

Caregiver Jake senses “A Shift in the Wind” and longs for few days at the beach.

Sunshine and Moonlight’s “O Sole Mio Sundays” gives a tip of the hat to our own Jake Crest, caregiver extraordinaire.

Thank you to all the caregivers, who do what they can to ease our burdens. And thank you, Sunshine, for your kind words.

The state of the economy is front and center in virtually every newspaper and newscast. The mortgage meltdown, stock market troubles, job losses, and increasing costs of everything from food to fuel are impossible to ignore. These are trying times for the family finances. Health care is a major budgetary item and can take quite a bite, but if someone in your household lives with a chronic condition, such as multiple sclerosis, that bite could be a whopper. Continue…

“What do you mean ‘You can’t see.’!?,” I asked. We were speeding north through Maryland on Interstate 81 heading to NJ for a family weekend. Mandy was a little quiet and, when I glanced over, I saw real fear on her face. In a slightly panicked voice, she said that for the past 15 minutes she had strange wavy lines coming in and out of her field of vision. They had started appearing towards the peripheral areas. Now those lines were obstructing everything and, in places, shutting out vision altogether. With a mix of terror and confusion, she looked at me and said that there was a big hole in my head. I was stunned into silence. Continue…

An MS Maze Recommendation:

The summer issue of MSFocus magazine (a publication of the Multiple Sclerosis Foundation) features an article by Chris Tatevosian, author of the book, “Life Interrupted, It’s Not All About Me.” Titled, “The Gang’s All Here,” this uplifting story is an interesting read you won’t want to miss! (pages 50-51)

If you are not a current subscriber to MSFocus, click here for more information on this wonderful quarterly print publication. There is no charge for the magazine and you can subscribe online in a just a few moments.

Congratulations, Chris. Best of luck to you!

One thing leads to another. So said the doctor recently, just before arranging for another specialist and more rounds of tests. Try as I might, I just cannot escape the merry-go-round of doctors, tests, and insurance woes. Continue reading, “Doctor’s Appointments: The Money Drain.”

I live with two women. There’s my wife, Mandy, the woman that I first came to know – strong, confident, and independent. Then there’s the other Mandy, the one that makes an appearance now and then, uninvited, and proceeds to toss strong, confident Mandy out the door without so much as a ‘nice t’see ya.’ Continue…

Mandy: “Join me in my new commitment!”

Jake: “The Importance of Patience: What a Car Accident Taught Me”

Detective Ferguson climbs tentatively to the top of the step-ladder. Nervous and perspiring, he is completely overwhelmed when he reaches the third step. His fear of heights manifests itself in the form of dizziness and he collapses in a near-faint. Alfred Hitchcock’s 1958 classic thriller, “Vertigo,” starring James Stewart, uses unique camera angles and imagery to capture the fear of heights as never before. There is one small problem with that. Vertigo is NOT fear of heights. Until recently, I, along with many other people, drew my knowledge of the subject from that movie. Just further proof that life does not imitate art.

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Two things happened upon hearing her neurologist at Johns Hopkins utter the words “This is MS” while examining the MRI films of her brain. First, there was a feeling of exoneration. We weren’t crazy. All the inexplicable on-and-off-again symptoms that were plaguing Mandy had their roots in an actual, true-to-life disease. Then the other shoe dropped and we froze. Though we were afraid to say it aloud, we each thought the same thing – ‘what now?’

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