MS Maze

It’s a fine line, when a spouse is also a caregiver. In 2004, when I received a diagnosis of MS, I had NO choice in the matter. The man in my life DID. Imagine the task of having to weigh that issue and actually choose. No, he never hinted at his thought process and, no, he never showed the slightest sign of indecision, but I have to assume there was some wrestling going on there. We were married the following year.

I have Relapsing/Remitting MS, so much of the time the role of supportive spouse is sufficient and I take care to maintain my independence. I want him to think of me as his wife, not his patient.

Sometimes we’re in that middle ground, and I’ll ask him to carry something, or I’ll leave a chore or two undone. We’ve worked out a silent system of sorts. If I leave the laundry basket full of clean clothes at the bottom of the stairs, he’ll pick it up on his way by and so forth. We hum along like a well-oiled machine in this mode.

When we reach that full blown relapse, however, Jim becomes the caregiver. Without much fanfare, he takes over my chores, the driving, the shopping, shuttling me to the doctor. He’ll call my office and let me sleep in. When I shower, I’m aware that he’s got one precautionary ear tuned in for signs of trouble. He’ll load and administer my daily injections when necessary. Several times a day, I’ll hear his voice coming from our home office, “Hey, Babe…how’re you doing out there?”

MS is clearly OUR issue, not mine. While I carry the load of the physical manifestations of MS, Jim carries the load of the on again, off again caregiver and spouse. Together we share the burden of medical and health insurance woes and working our lives around the relapses. It is a challenge we accept and share as a couple. He does what is needed without hesitation or complaint. In return, I show my appreciation whenever and however I can.

Whether it’s your spouse, your parent, your sibling, your child or a friend, be aware of the silent burden of your helper or caregiver. I sometimes keep symptoms and frustrations to myself because I don’t want to complain too much. My guess is that my husband does the same.

Show your appreciation. Pay attention to the little things as well as the obvious things that are done on your behalf. Imagine how you would feel should roles be reversed. It’s not so easy to watch someone you love struggle.

Have you hugged your caregiver today?

originally posted September 12, 2007

We shed no tears, but bid a fond farewell to Jake and Mandy Crest as they ride off into the sunset.

When we started blogging in the summer of 2007, we felt strongly about maintaining our privacy, not only for ourselves, but for those whose lives are interwoven with our own. “My name starts with A, so I’ll stick with that — I’ll be Amanda,” I decided. Taking the name Jake, Jim said that if my name really was Amanda, he’d be calling me Mandy. One of my sons came up with the Crest part and our alter egos sprang to life.

As our blogging blossomed and we expanded to other sites, Jake and Mandy took center stage. In time, we realized that we could be much more effective if we were to “come out” and be ourselves. Projects that were begun under Jake and Mandy continued, but we used our real names for other ventures.

With the last of the ongoing work of Jake and Mandy Crest reaching its conclusion this week, Jake and Mandy become nothing more than sweet memories, but Jim and Ann shall carry on. However you’ve come to know us, we remain dedicated to reaching out to others — patients and caregivers alike — who live with multiple sclerosis.

We invite you to visit us on MS Maze where we will continue to slog through the maze of multiple sclerosis and health care policy issues.

As always, we encourage comments, questions, and emails. We love to hear from you!

email: writer@webcampone.com

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Care2 Reform Health Policy

The day of our local National Multiple Sclerosis Society Walk finally arrived and Jim and I were pleased to wake up to a gorgeous spring morning. The two of us raised $1,445 and for that we thank our generous supporters.

The crowd seemed a bit larger than in previous years and we were surprised when the society acknowledged those present who raised more than $500. I was one of three. One woman wasn’t available, so the it fell to a fellow MSer and me to lead off the walk to the sounds of the olympic theme.

Jim was right with me, knowing that it wouldn’t be long before I would fall behind. Indeed, it was less than 30 seconds before my pace was overtaken, but luckily it wasn’t a race. I haven’t been using my cane these last few weeks, but experience told me that 3-5 miles would feel more like 50, so I took my trusty fold-up cane along.

Rather than going through town this year, the MS Walk trail was an actual trail through a very woodsy park. It was beautiful and it felt great to be out in the fresh air and sunshine. Early on we spotted one person with a walker, but we didn’t see any other canes or wheelchairs this year.

Following the posted arrows, we turned on to a dirt path strewn with rocks and tree roots jutting up from the soft ground, forcing me to watch my feet as I walked. Aware of my unbalanced and uncoordinated appearance, I clutched Jim with my left hand and allowed my right arm to flail about wildly on to the other side, as it often does when my balance is threatened. Woe to the person hoping to pass me on the right.

I really wasn’t terribly concerned about my appearance on this particular day, this being an MS Walk and all. I considered myself to be a living example of MS in action, a single morning in a single life of one MS patient. As fate would have it, I was in far better shape this year than I was for some previous walks.

Still, it took only 15 minutes before I released my folding cane from its harness and put it to use. Good grief — there’s a hill up ahead! Maybe to some people it would be considered nothing more than an incline, but to me it was a hill, the first of several to come, along with patches of mud that made the cane more of a hazard than a help. But I wasn’t alone. No matter how far behind we were from the main group of walkers, Jim was there to support me, both emotionally and physically.

Being the loving care partner that he is, he grumbled about the chosen walk route and my obvious difficulties. Then again, I could have chosen the shorter route that the society always marks off for people who have trouble, but I declined. It’s important to me that I push the limits of my abilities right now. It’s not hard for me to imagine that at some point I’ll have to settle for being a virtual walker. When that day arrives, I will know that while I could… I did. I think I did my husband proud.

It took us an hour and 20 minutes to finally reach the finish line — hot, tired, and thrilled to have done it again. Within 30 minutes of arriving back home, I was powerless to fight the call of a nap and let myself give to sweet slumber.

Although the scenic walk was pleasant, it seems to me that by walking a more public route, we would stand a better chance of raising awareness of this disease and the organization that fights for us.

The cause is still a mystery and the cure for MS is a long way off. Unfortunately, diagnosis is coming at an earlier age than ever before and pediatric MS is on the rise. This debilitating disease is hard enough to make peace with when you are in midlife — our hearts go out to those who must face that challenge earlier. THAT’s why we help to raise funds for research… THAT’s why we work to educate and support others… THAT’s why we walk for those who no longer can…

“Can we talk for a moment?” he asked while waving to me over our backyard fence. I like this guy, a lot. He’s quite a bit older than me, but fit as a fiddle. One of those guys who, when you look at him, you cross your fingers and silently hope that you look and feel as good when you’re that age. Dropping my rake, happy for the break, I walk to the fence to chat. I know from experience that we can easily talk for a half-hour or so unless his wife, a very nice woman, comes over and begins telling her versions of his stories. When that happens, the time spent talking can easily double.

“How are you?” I ask. The look in his eyes tips me off that something is wrong even before he can answer. “Not so good,” he says. “Mandy has Multiple Sclerosis, right?” I was only half surprised that this was a question. Like so many people, the details of other folks health issues tend to fade quickly with the every day goings-on of their own lives. “Right,” I answer. He nods, “We think my granddaughter has it too.” It was said matter-of-fact, but worry etched his face…

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Sorrow for our Granddaughters

Jake offers advice for the MS Caregiver:

Here’s the truth as I see it. Once you become a caregiver to someone with MS, life will never again be as it was before the diagnosis. The faster you accept that as fact, the better off you’ll be and the quicker you’ll be able to move forward with our new goal of pretend normalcy. Whenever Mandy and I start down the road of wondering aloud about what our lives might have been like without MS, one of us will eventually look at the other and utter an oft-heard phrase: “It is what it is.”

Life doesn’t come with guarantees. No guarantee of happiness, no guarantee of financial security, no guarantee that you’ll have a big happy family, no guarantee of anything — except for one thing. That your life will be full of unexpected and unexplained events. You can tell yourself that there’s some grand plan, that things happen for a reason, but I’ve dismissed that line of thinking. We’ve given up all pretense of believing that some master plan simply called for Mandy to contract MS. To me, life is like running across an active battlefield with your eyes open, senses on fire, every ounce of your life’s training and experience being pulled into use. With all that going for you, sometimes you’re just going to get hit.

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New to the Game?

The financial impact of multiple sclerosis cannot be overstated, whether you have medical insurance coverage or not, it becomes a large part of your struggle with the disease. Like it or not, MS and money are go hand in hand.

So what if you find yourself among our country’s nearly 50 million uninsured? Continue to research and pursue all insurance options. In the meantime, there are other resources available to the uninsured, but it’s going to take some time and a great deal of persistence.

Having MS and no insurance — or inadequate insurance — is a bitter pill to swallow. I cannot in good conscience say that you will be able to access all the services you need. We just have do the best we can with the resources at our disposal. And by all means, contact your representatives in congress. Put a human face on the state of health care!

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Guide for Uninsured Multiple Sclerosis Patients

March is National MS Education & Awareness Month. For those of you who come here because you either have MS yourself or live with someone who does, March is just another month and you most probably don’t need to be made any more aware of the ways in which MS affects your lives.

On the other hand, for those who have come in search of some understanding, to them I can only say “Welcome,” advise them that MS is not catching, and suggest that they stay awhile to read some posts here on the site. Many, such as those written by my wife Mandy, who lives with MS, will not only educate, they will inspire…

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For Us, Every Month is MS Month

It was just a few weeks ago that I looked at my wife, Mandy, and asked with some trepidation, “I don’t mean to sound crazy, but are you SURE that you’ve still got Multiple Sclerosis?”

Hope, it seems, springs eternal and although I consider myself a pragmatist, I still fall victim to its seductions. Mandy looked at me quizzically, and said ominously, “Yes. I’m sure.” The look on her face made me realize that I had asked a very foolish question because even though we were now nearly five months without any major relapse, the MonSter stalks Mandy every day. She feels it, but has become very good at hiding it. As for me, I fall victim to ‘out of sight, out of mind.’

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What Goes Up Must Come Down

During the past month, my wife, Mandy and I have made some new friends. Friends with names like @thepaintingdude and @mike2mb. Although the chances of us ever having a face to face meeting with them are pretty slim, we know a lot about them. Using a phrase that is getting more and more use today, we ‘found them on the Internet.’

How we found these folks is the interesting part. Why we found them, and others, is a whole other story. But what I think may be the long-term consequences of having found them is why I’m writing this post.

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Do you know the moral and ethical values of your physician? If you think it doesn’t matter, think again.

This week, the “Right of Conscience” rule became reality, courtesy of the outgoing Bush administration.

The rule allows health care workers–including doctors, nurses, office workers, maintenance staff, pharmacists, etc.–to refuse not only to perform procedures, but to dispense information, offer referrals, or participate in any way in procedures or issues that would conflict with their moral beliefs. Designed to…

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Right of Conscience Rule and a Slippery Slope

President-elect Obama has made health care reform a cornerstone of his economic recovery plan.

Skyrocketing costs, it’s argued, could be slowed if patients health records were kept in a centralized database, accessible over a network and easily read by authorized healthcare professionals. Cost-savings created by a reduction in the duplication of labor, as well as a reduction in misdiagnoses on the part of physicians caused partly by inaccurate information given them by patients and caregivers, make up the gist of some very persuasive arguments in favor of  moving the United States into systemwide digital health records. Taken at face value, the argument seems to make a lot of sense. After all, who among us wouldn’t be happy, should we…

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The Debate over Digital Health Records

Right after Thanksgiving I wrote a piece titled “Wheeeee!!!” in which I stated that Mandy and I succumbed to Wii madness, purchased one of the video game consoles, and planned to delve into the world of Wii, Miis, and daily fitness tests. We guessed that perhaps, because of the physical nature of Wii gaming, playing Wii would actually prove beneficial to Mandy who, like so many others, suffers from Relapsing-Remitting MS.

Now, after a month of playing, we believe that we were correct and that Wii is proving itself well worth the investment. At the risk of being a commercial for Nintendo, I’m going to plow ahead and talk about our experience to date.

Read Jake’s post in its entirety:

Mii Too!

The holiday season is upon us. For many, the lights are not quite so bright as in years past. Parents wrap gifts for the kids, emotions contained amidst a continuous flood of depressing economic news heaped upon them by the media. 401K statements, which were once greeted with anticipatory grins as envelopes were torn open are now things to be avoided. Bad news can wait another day.

Setting aside the blatant financial incompetence demonstrated by banking and investment professionals, my concern as it relates to caregivers and those in our charge has to do more with health care and, most importantly, health insurance. In a nutshell, it stands to reason that we’re going to see a sharp increase in the number of families unable to find and/or afford health insurance.

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Cratchet, your fired! by Jake Crest

Wheeee!!!!

I know this might seem a bit childish, but while Mandy and I were out of town visiting family over the long Thanksgiving weekend, I discovered something that a good portion of the game playing public already knows. I was introduced to Wii, a game machine by Nintendo that has apparently captivated gamers and non-gamers alike and that has been making tremendous inroads into the adult market.

While Wii-’bowling’ with my niece, it occurred to me that this simple game might be able to help my wife, who suffers from relapsing-remitting MS, get a little exercise in order to keep her muscles toned. My suspicions were confirmed as I watched Mandy Wii-’box’ with an opponent, her arms thrashing wildly as she worked feverishly to pummel her Wii-generated opponent.

Read: Wheeee!!!! by Jake Crest

“Funny, we spend our lives waiting for tomorrow. You know what I mean. Someday this will happen… and someday that will happen… but it never happens today. It’s like that old sign you’ll see outside restaurants and bars that proclaims, “Free Beer Tomorrow.” Well, you can go stand and wait for as long as you want, but I guarantee that you will never be standing there on a day that’s labeled ‘tomorrow.’ Tomorrow is, after all, always at least one-second out of reach.”

National Family Caregivers’ Month got Jake to thinking. So how does free beer figure into it? Find out by reading Jake’s latest post on The Health Central Network’s Multiple Sclerosis Central.

Read:  Free Beer Tomorrow, by Jake Crest