Tuesday, June 26, 2012

You Need to See Your Regular Doctor, Too

Writer, ms.about.com

If you are like me, when I think of my health, my multiple sclerosis dominates my thoughts. I run through my inventory of which symptoms are acting up and if I think my medications are causing side effects. Usually, it's only when I have an ailment that is causing severe discomfort, like a cold or stomach virus, that it occurs to me that there is more to my physical health than my MS.

However, as unfair as it might seem, people with MS are subject to the same health problems as those that preoccupy people that are not living with MS. We have the same lifestyle and aging issues as everyone else. We have to consider preventative care for things like heart disease, high blood pressure, cholesterol, our weight and our blood glucose as we age. Women need to get mammograms and pap smears on a regular basis. We need to keep up with immunizations, as well as visit dentists and eye doctors.

In addition to the risks that apply to everyone, there are special risks that we have that are directly or indirectly related to our MS, but that our neurologists may not really be aggressive about checking or equipped to diagnose or treat. Some of these things include:
  • Osteoporosis: People with MS are more likely to have osteoporosis (loss of bone density). This is usually due to a number of factors, including limited mobility, low levels of vitamin D (which is essential for calcium absorption) and excessive use of corticosteroids (for instance, many Solu-Medrol courses over a short period of time). Your doctor can order a bone scan to test for osteoporosis.
  • Depression: Depression can be a primary symptom of MS. It can also be indirectly caused by the losses and unpredictability of the future associated with MS in some people. While neurologists can certainly prescribe antidepressants, successful treatment of depression can be a lengthy and complicated process, often requiring many months of trial and error to find just the right regimen of medication at precise doses. Your neurologist or general practitioner should be able to refer you to a psychologist or psychiatrist to handle your depression, preferably one with experience treating patients with MS.
  • Vitamin deficiencies: People with MS tend to have low levels or deficiencies of vitamin D and vitamin B12. Your neurologist may or may not be able (or willing) to order these tests for you, but in many cases, you will have better luck with your general practitioner in getting these tests run and put on a treatment plan.

The bottom line is that our neurologists are not a one-stop shop for our health maintenance. There have been times when I asked my neuro about one health issue or another, and he would wink and say, "That is not my department. You need to see a real doctor for that."

So, make an appointment to see your regular doctor, whether that be an internist, a general practitioner or a gynecologist. Get the rest of yourself checked out. The last thing that any of us needs is additional health problems that could have been caught early or prevented by taking action and seeing our doctors.

Friday, June 22, 2012

On the road with MS

Dan and Jennifer Digmann

Dan: This summer, Jennifer and I are planning our vacation around a trip back to Iowa to celebrate with my family. In addition to the expected late-July birth of my sister’s first baby, August 23 marks my brother’s third daughter’s – and Jennifer’s goddaughter’s – first birthday.

It’s a big trip for us that we’ve made countless times, and it’s the one that has taught us how to strategize traveling on the road with Multiple Sclerosis and a disability. Just ask Jennifer.

Jennifer: When I started dating Dan nearly 10 years ago, I remember thinking I never was going to see where he grew up in Iowa. After all, his hometown is more than 500 miles from where we live in Michigan, and I had concerns that most people don’t have when they travel.

Because I no longer drive, am in a wheelchair and need Dan’s assistance making transfers – specifically in the restroom and into bed at night – I wondered how I was going to make that trip. Where was I going to find accessible restrooms along the way?

Since my MS diagnosis, I’ve realized the importance of nice, clean ADA-compliant restrooms. And especially now, they need to be fully accessible, complete with taller toilets, grab bars and enough space for me, my chair and for Dan to help me transfer. Rest areas off the interstate highways are our top choice.

Dan: The nice thing about these rest areas is that they’re marked on state maps, which helps Jennifer and me plan for scheduled stops along the way. Many of the newer or remodeled rest areas offer fully accessible family restrooms. These are the easiest to help with the transfers and provide more privacy.

When a rest stop doesn’t specifically have a family restroom, attendants always are willing to post the “Closed for cleaning” sign on one side of the women’s restrooms for Jennifer and me to use.

Jennifer: And when that isn’t an option for Dan and me, I find it’s just as easy to clear it with any women in the restroom by asking, “Do any of you mind if my husband comes in to help me?” Fortunately, I’ve never had anyone say they minded Dan’s presence in the ladies room. Truly, this is a fact of life and most people are very understanding.   

A word of caution though: Not all rest areas are fully accessible. Some, even though they’re marked with handicapped-accessible signs, fall short in providing stalls big enough for Dan, my chair and me.

If on your travels you don’t come across an accessible rest area, we’ve discovered it works to try newer fast food restaurants or service plazas and larger gas stations. Many of these feature accessible facilities, and more often than not the cashier is willing to keep watch for you when getting help from a caregiver of a different gender.
Dan and I had had nearly a decade of trials and errors to make our travels more manageable in spite of MS and our accessibility concerns. We’ve merely scratched the surface on things we’ve found helpful in traveling with MS or any disability.

Remember that traveling is supposed to be enjoyable, and it can be with the right preparation and some flexibility for unforeseen situations. And if there was a less than accessible facility or if someone went out of his/her way to help, make sure to send cards or emails to provide your constructive feedback or thanks to those people for their assistance in making your trip a great one.  

Combined Dan and Jennifer Digmann have taken on MS for more than 25 years. Jennifer was diagnosed in 1997 and has secondary-progressive MS; Dan was diagnosed in 2000 and has relapsing-remitting MS. They live in Michigan and were married in 2005. They are authors of the book, “Despite MS, to Spite MS,” (available at amazon.com), and write for HealthCentral.com and their own blog, danandjenniferdigmann.com.

Tuesday, June 19, 2012

The Five Best Things I Have Done Since Being Diagnosed with MS

Marie Cooper
Writer, MS Renegade

As I noted in last month’s post, the mistakes I made since being diagnosed with MS were all pretty big and dramatic. The best things I have done since diagnosis are mostly small and practical, banal even, but they helped all the same.

Best Thing #1: Writing my blogs
Hands down, blogging is the best thing I’ve ever done for myself, period.

I have been writing since I was old enough to know what it meant, but I never made the time or had the courage to put it out there or try to have anything published. 

Then came blogging. I had been thinking about writing a blog for a while, but I was really apprehensive. I took my time, did a lot of preparation and then, nervously, took the leap.

Well, I have had the best time writing these blogs! My readers are utterly wonderful and many have become true friends. I have received feedback that is so touching, so kind and so encouraging it has been a real gift. 

My point here is, do what you love. You deserve it. It’s time. When we have a chronic illness, it is easy to fall into a life that is limited. We don’t feel well and everything is an effort. But try and ask yourself, what is the passion that you have been too busy for? This is the chance to cultivate the things that are most meaningful to you. 

Best Thing #2: I acknowledge what my body is telling me.

Me? Listen to my body?!?  Hahahahahahahaha. The only thing I ever listened to was the voice in my head that ran persistently into the future, telling me all the things I had to do. It. Never. Stopped. For. One. Minute. Then came MS.

In the beginning, I ignored my symptoms. I DEFIED them. I kept working, cleaning, shopping, doing, doing, doing.  And I paid the price with regular relapses, needing a course of IV steroids to get me functioning again. I had more and more residual deficits each time. It took forever, but I finally allowed myself to respect the fact that I needed to listen for cues and anticipate my needs before they got to a crisis point.   

Best Thing # 3: My “overbed” table

Go ahead, laugh.  It is, after my laptop, my most treasured possession in the world. After my diagnosis with MS, I was juggling my entire life on my bed and nightstand. Juggling unsuccessfully, I might add. So a friend suggested getting “one of those tables like they have in the hospital.” I am a nurse and I have seen unspeakably disgusting things on bedside tables. I can cope with these things professionally. But I certainly didn’t want those memories lingering near my own bed.

So I resisted. And I spilled things and lost things and sat on things because my bed was a disorganized mess. In desperation, I priced what are called “overbed” tables. I was delighted to find they had a different name: laptop tables!! Well, these didn’t conjure up memories of basins or bedpans for me.  What’s more, they were reasonably priced. So I bought one. And I love, love, love it.

It has a tilt top side for my laptop, a solid side for books, cups, plates, etc., and wheels that allow it to be pushed out of the way. The wheels are probably the weakest link as they will not roll over anything thicker than a human hair, but that is just a quibble. I stitched up a big tote bag with half a dozen pockets that hangs over the side of the table to hold my knitting, my iPod, my mobile phone, CDs, pens and notepads. It is like another limb.

Best Thing #4: Reach-y thingies

Whether because of the numbness and weakness in my hands or because I am simply clumsy, I do not know. I just know I drop and/or knock over everything. And, because of being so spastic and weak, I have the darndest time picking up the things I have pitched to the floor.

It took years before it occurred to me, but with a lightning strike of brilliance (yes, that is sarcasm), I finally bought several reach-y thingies. I do believe that is the technical name for them. [Note: the technical name is reachers.]

I bought ones that fold in half for the kitchen and bedroom, and that have wide, rubberized tips so I can pick up a variety of things. For the den, where I sew, (this was extra brilliant) I bought one with a magnetized tip because I am sick of playing 500 pick-up with the cups of pins I am perpetually spilling.  Voila! Now all I have to do when I need a pin is stick my magnetized reacher on the floor and I come up with a dozen. I usually come up with a dozen other things as well, but we won’t talk about that.

Best Thing #5: Admitting I have MS

Crazy, huh?  That having MS would be on any sort of “Best Things” list?  Having MS certainly isn’t the best of anything. 

I resisted the MS label for a long, long time. Denial is a great protective mechanism for a while. It is a good place to hide while the shock registers in your brain. But, when you’re in it, it is really hard to discern when denial goes from protective to destructive. For me, it was damaging when I wasn’t taking care of myself or accepting help because I refused to accept that I was sick. MS has no tolerance for not taking care of yourself. It is a punishing disease that punishes you even more if you disregard it. By admitting I have it, I am free to take better care of myself. 

That is the uniting theme here in my Five Best Things – do what is best for you. What is best to make your life simpler, happier, healthier. I am not a fan of the saying, “If life gives you lemons, make lemonade.” Life is hard enough at the best of times. My opinion is, if life gives you lemons then you have too many dang lemons. And I don’t even like lemonade. But we are stuck with this disease and taking good care of ourselves is the best way to cope. I suppose that could be considered a form of making lemonade out of lemons. Although if I have to make something, then what I’d really like is lemon vodka. :)

Saturday, June 16, 2012

When Do You Tell Strangers That You Have MS?

Writer, ms.about.com 

Immediately after getting diagnosed with multiple sclerosis, I didn't really tell anyone. I was so secretive about the matter that I scraped through my PhD defense — the moment that I had been working toward for six years — almost doubled over with pain from the MS "hug." I was so fatigued that I remember putting my head on my knees and falling asleep in the hallway after I had been excused so that my committee could discuss my fate. When a point in my thesis was criticized, I wept, overwhelmed by the entire emotionally and physically painful experience.

I didn't tell most people that I was close to about my diagnosis. I did share the news with some family members, but even then I was vague about the details. I certainly had no urge to tell strangers that I had MS.

After a couple of months, however, I got more used to the idea that I was now a person with MS. I decided that by acknowledging it openly, I was going to gain power over my diagnosis. MS couldn't hurt me if I put it out there for the world to see. I told my circle of friends, then a wider circle of acquaintances. When I ran out of those people, I started sharing with strangers.

I dare say that I "overshared" about my MS. I told people about my MS when I was standing in line at the grocery store, checking out library books or petting their dog. I didn’t really notice at first that many people didn’t quite know how to react to this strange woman telling them about her disease — a disease that many people perceived as crippling and devastating. To their credit, many people were sympathetic. However, a large percentage of these strangers just wanted to get away from me — I made them uncomfortable, overstepping social boundaries and revealing stuff that was really none of their business. They didn't know how to react, not knowing whether I was brave, crazy or desperate.

After awhile, though, I no longer felt compelled to dump my story on anyone with whom I made eye contact. I guess I found a balance, an uneasy peace with my disease that required more looking inward.

Now I am more moderate, I think, with how I discuss my MS and with whom. Clearly, in my role as a person who writes about MS, I have an outlet for discussing MS-related issues. However, talking about MS to people who are also living with the disease is different. We are all in this together and I don't hold back much. I do not feel like we are strangers.

With people who do not have MS, however, usually there now has to be a pretty good reason for me to tell them about my MS. I will share if, for instance, I have a symptom that is bothering me at the moment. By this, I usually mean something visible, like a tremor, that is pretty obvious to both of us. It could also mean that I am feeling fatigued or confused and would like to make things easier for both of us by lowering expectations of myself and my performance in a situation.

I can also tell them in a way that does not make them uncomfortable. If I have a pretty good rapport with the person and the timing seems right — not within 30 seconds of meeting them, for example — I can usually find a soft and easy way to mention my MS. In no way do I ever want to convey that my MS is "no big deal," but I also don't really need to dump all over someone with the full reality of living with the disease.

There are many nuances and microdecisions that go into when and if to reveal one's MS status to people. Certainly, the question of whether to disclose during a job interview is not to be taken lightly and many people will warn against this. We also all have our ideas on when to reveal our MS to someone we are dating — some say immediately, others say wait until it is serious.

However, when it comes to sharing with strangers whom you will probably never encounter again or who have a limited role in your life (your favorite waitress or the neighborhood mail carrier), how you proceed is up to you and may differ with each circumstance.

So, what about you? When do you tell strangers that you have MS? How do you tell them?

Tuesday, June 12, 2012

Drawing the line

Susan Skoney

Those who require daily assistance, like me, can understand how anxious I felt when my trusted and devoted aide, Laurie, took a much-needed vacation with her family. 

Well, what was I going to do? Panic? That would’ve been great, but didn’t solve the problem at hand. I needed to find someone who could step in, take care of me, get me to appointments, help me prepare meals, and yip at my kids if they need it (and they do). I’m embarrassed at how self-absorbed that “little me” moment sounds, but it is scary to have strangers taking care of the most private aspects of your life. I’ve been so lucky and blessed to have Laurie. But aides get sick, aides have family obligations and they absolutely need time off!

Finding substitute help can be difficult and nerve-racking, at best. I’ve had some pretty interesting, if not scary experiences with aides and have had to draw the line a few times. Once we tried out a replacement when Laurie was away for a few days. She did not work out. I could have overlooked her refusal to do dishes or to help me with household tasks, but her need to share the intimate details of her love life and her interest in my prescription drugs were where I drew the line.

Another agency once sent an aide who was extremely fragile from years of smoking. She would use my walker to hold onto to keep from falling over during her violent coughing fits. This was a big problem since I was also using the walker to keep from falling over. 

Then there was the vegan who would not help prepare meals that contained meat. In addition, she would not use the microwave because she thought the radiation was deadly and the cause of my MS. I could have worked around these limitations, but when she started trying to convert me to her religion I had to draw the line again. 

My personal favorite was the lady who quit before I could have the “it’s not working out talk” with her. She seemed fine at first and came highly recommended, but I should have gotten a clue when she fumbled in her purse for a new fentanyl patch as we were heading out the door for an appointment. She told me not to worry because the patches helped her to breathe. Breathe? I found her sound asleep sitting at the kitchen table later that day.

Anyway, Laurie did it! She found two very capable subs with whom I am comfortable coming into my home, helping me with my personal care and taking care of the household activities. I’m sure you all have experiences of your own to share about drawing the line, but better yet, tell me about the caregivers in your life who are totally fantastic. In the meantime, I am going to figure out a way to give Laurie a raise!

Susan Skoney was diagnosed in 1999. She lives in western New York with her husband Michael and children Hannah and Alex. She worked many years in public relations and advertising, and has just started writing about her MS in the last few years.

Friday, June 8, 2012

Making hard decisions about what we can and can't do

Writer, ms.about.com 
I'm a little sad right now, but proud of myself for making a grown-up choice. I was supposed to be getting ready to go to the Americas Committee for Treatment and Research in Multiple Scleroses (ACTRIMS) conference in San Diego to report for the National MS Society, as I did last October from ECTRIMS in Europe.

It's a perfect situation for me, an epidemiologist who has MS and loves to write about it. Perfect, except for the fact that this assignment is also really demanding – physically, as well as mentally. I know from my past experiences at ECTRIMS that when other people were settling down to relax after a long day at the conference, I was opening up my laptop to make sure I captured the day's highlights accurately. When other conference attendees were discussing the conference over lunch, I could often be found eating a bag of potato chips and trying not to let the crumbs fall onto my keyboard. It was exhilarating, but it was exhausting.

So, when the Society asked me to attend ACTRIMS and blog about it, I was initially beyond excited. I started wondering what new breakthroughs and controversies I was going to hear about and what news I would be bringing to people with MS.

However, then I thought about how I was feeling. The weather was starting to get pretty warm when I received the formal invitation. I was in the middle of a pretty bad fatigue cycle that starts to happen in the spring months and gets worse as we head into summer – I keep going, but my days are punctuated by naps and I climb into bed and crash pretty early at night.

None of this was compatible with covering the ACTRIMS conference. As badly as I wanted to go, I realized that I would not be able to do a good job in covering important topics. I'll admit that I was pretty tempted to "fake it" and go anyway. Not only would that not be fair to the Society or anyone reading the blog, it would also be something that I would remember forever as the time that I didn't do my best.

So I made the very hard decision to turn down the offer to blog ACTRIMS. I am sad about it, but I am also proud of myself. The whole experience made me reflect on what living with MS could really mean: Besides the daily struggles, there are times when I just have to stay behind and be left out of the fun. As much as I dislike this phrase, it is a truism – life isn't fair sometimes.

I thought I would put down some of my thoughts around making difficult decisions and how the process can be made a little bit easier:

Be honest with yourself. First, I have to look at reality under a harsh light in terms of my symptoms and abilities. Then, I have to accept that reality. This is harder than it sounds, because most of us go through life cramming too much into our schedules and taking on too much responsibility. To say, "I can't do that right now" goes against many years of making it work, no matter what.

Be honest with others. This is also not in our nature. When someone asks how we are doing, most of us reply with a smile and an automatic "fine." I do it all the time, but then get annoyed that someone is expecting more from me than I feel up to. The vast majority of people can handle the truth. When I had my conversation with my friends at the Society about not being able to cover this conference, I told them how my symptoms were affecting me and that I wouldn't be able to do a good job for them. In return for the truth, I received concern and support. I felt much better after having this conversation that I was dreading.

Keep it in perspective. I had to remind myself that having to turn down this invitation doesn't mean that I will never get another opportunity like this. Instead, I should treat each situation as its own event without generalizing the rest of my life. True, I may not get to attend my cousin's outdoor summer wedding or take that evening class that I was interested in. Maybe it is something bigger, like having to turn down a "dream job" that would be too physically demanding or even that another baby might be too much to handle. Yes, these things are disappointing, but no one says that dreams can't be changed (or adapted) and that my life is not wonderful, even if it is different than how I had pictured it.

What about you? How do you deal with your limitations and making tough decisions about your abilities?

Wednesday, June 6, 2012

Traveling with MS – A Surprising Turn

Martin M. Shenkman

Traveling with MS can be a challenge. Even without a walking aid, carrying medication that should be refrigerated through airport security checks, dealing with severe fatigue— which, in accordance with Murphy’s Law, comes at the most inconvenient times--can all be pretty tough.

I have a vivid memory of the last flight    with my wife, Patti, who has MS. You know the feeling when you and masses of people are waiting at the gate for your flight and it is delayed 20 minutes, and another 20 minutes, and another …? Most folks just get annoyed and buy another mocha cappuccino. But when MS fatigue hit Pattie with a vengeance, what could I do? I could make Patti a bed using my coat, sweatshirt and whatever. The only location for this poor excuse for a bed was the terminal floor. So I stood over her while she rested, trying to prevent passengers running for planes from stepping on her. A better mode of travel had to be found.

On a drive one day the idea popped up: Let’s buy an RV. Just for perspective, we had about as much experience with an RV as Robin Williams did at the beginning of his comedy RV. While it was more of a joke than a serious plan, we went exploring. The main idea was that, if fatigue kicked in, we would have a bed available; if travel prevented obtaining food compliant with the Swank diet we follow, we would have our own kitchen on wheels. And there would be no more hassles looking for ice to keep Patti’s medicine cool, as we would have a fridge in tow. RV sales during the heart of the recession led to a deal we couldn’t refuse. The next thing we knew, we owned an RV. Next we had to figure out what to do with it!

Reading blogs, articles and more, it has become apparent to me that  people living with MS and their caregivers often find solace, meaning and a means of coping by doing something proactive to help others facing similar challenges.

Heading off on our new RV journey, Patti and I wanted to make something more of our travels than just a vacation. Thus was born our private charity, RV4TheCause. As we travel, we lecture to consumers and professional advisers on estate, financial, tax and legal planning for those living with MS and other chronic illnesses. We’re assisted in this effort by a distinctive and beloved wingman, our Norfolk Terrier, Elvis, a licensed therapy dog. No one can get a group smiling like Elvis.

We opted not to limit our efforts to MS, since the challenges people with MS face are similar to those faced by people with many different chronic illnesses. Most importantly, financial planning for life with a chronic illness entails many similar modifications no matter what a person’s particular situation might be, although obviously tweaks must be made for every particular illness. To date, we’ve logged in about 15,000 miles and 35+ presentations. This spring we just logged our longest trip 6,200 miles and a month of time away from home and work from New Jersey to Las Vegas.

While not everyone can solve their travel difficulties buy purchasing an RV, you don’t have to give up the things you enjoy because MS has gotten in the way. There are little (and big) modifications you can make to your previous travel routines. In fact, I’m sure many of you have found creative solutions to your travel challenges. What tricks have you found to make traveling with a disability more enjoyable?