MS Maze

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.

Read Jake’s Story Here

“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.

Read the rest of my story here.

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.

Read the rest of Jake’s 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

“You know, I wonder what it must feel like to be inside a body that’s in such incredible shape.” A second or two went by with no answer. Quizzically, I looked to my right. Mandy was looking back at me. She wore a pensive look when she responded. “I know,” she said. “I was actually wondering the same thing. I can’t even arch my back the way those girls do.” I felt the Beast settle back on the couch between us. It was smiling.

You can read the rest of this story here:
Olympic Musings

Happy Birthday, Mom (Jake)

Your Health is on the Line (Mandy)

Thank You, Professor Pausch (Mandy)

I have multiple sclerosis. My husband, Jake, is a caregiver. We’re a bit uncomfortable with that term because we’re not sure that it truly applies. Someone recently suggested “care partner,” and that seems more suited to our particular situation. He knows I love him. But, sometimes, I’ve got to give a little care to the caregiver.

Read “Caring for the Caregiver”

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.

“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…

Face it, after you’ve been a caregiver for a while, you find it almost second nature to keep one eye on the person in your charge. But when that person has relapsing-remitting MS, as does my wife, there are times when the remitting part overtakes the relapsing part. That’s right — there are times when the other person just… feels good. Continue…

Sometimes the difference between a miserable day and a good day rests solely on your ability to cast aside pride and simply say the words, “I was wondering if you could help us.” Trust me, the first time’s the hardest. Full Story…

Last post I spoke about how when my wife, Mandy, succumbs to fatigue so common among MS sufferers, that we figuratively say goodbye to each other, knowing that MS is going to once again steal from us that which is most precious… our time together. Yesterday was such a day, but MS played no part. Continue…

Multiple sclerosis should come with a warning label. “Caution: MS may cause presumptuousness in strangers. Use patience and wear thick skin.” Continue Reading…

Caregiver. Maybe you need one. Maybe you are one. This blog is written from the perspective of someone who found himself in the position of making a choice to become a caregiver. You’ll note that when talking about being a caregiver, I said that I chose to become one. That’s because Mandy, my wife, was not my wife when she was first diagnosed. We were living together, but not married. Now I won’t say that I didn’t give marrying Mandy a second’s thought because of the MS, because I did. I may have been foolish and in love, but I’m not stupid. Continue Reading…

Romantic Marriage