Tuesday, May 29, 2012

New Study about MS and Marijuana Stirs the “Pot”

The Unspeakable Bits; From A Life With MS

A small – but loud – study released last week about the use of smoked cannabis (marijuana) for symptoms of multiple sclerosis has sent smoke signals around the MS community. As clinical cannabis (often called “medical marijuana,” or MMJ for short) is not legal in most states – only 16 states have MMJ laws according to the site ProCon.org – and against federal law all together, the topic certainly seems like an “unspeakable bit”….

Note: It is important to point out that even in states where MMJ laws are on the books and purport to protect patients with a number of conditions from harassment and prosecution, a 2005 US Supreme Court ruling negates all of these state laws. No matter where you live, the use of marijuana is a federal offense. Also, the act of smoking marijuana (the method studied in this report) has health risks in and of itself.

The National MS Society’s Facebook page was flooded with comments and shares when they posted a link to their story about the study, prompting me to change course for my intended blog for this month.

That the study was conducted with science behind it, in the form of objective measures of pain and spasticity, rather than subjective reports from the research subjects, and was specific to people living with MS, is what made so many of us sit up and take note. Using the clinically accepted Ashford Scale to grade observed spasticity, a visual analogue scale for pain symptoms, and clinical control subjects who thought they were smoking MMJ but were not, researchers came to the conclusion that MMJ may be able to help with these two common MS symptoms.

As the study only followed 30 subjects, much more work needs to be done on the topic. The Society, in conjunction with the University of California – Davis, is currently recruiting for a new study that will compare both inhaled (smoked) and tablet forms of MMJ with a placebo.

I said that the study was “loud.” My phone rang a few hours before the study was released, with a local TV station requesting an interview for the evening news, and TV and radio stations around the country offered pieces on the study all day long.

When I blogged about the study on Everyday Health’s Life With MS Blog and mentioned it other places in the MS community, I was assured that it is a topic of much interest for people with MS. Many lamented that they live in states where it is not legal, so they do not try MMJ; others spoke of the benefits they have received and some told of the fears they have as they know they are breaking the law in seeking relief.

One aspect of MMJ that must be considered is consistency. Like apples, for example, marijuana is a plant and can vary in its chemical components. Just as some apples are better for baking than for eating raw, some tart and others sweet, or one variety crisp while another is mealy, each variety or “strain” of MMJ offers differing levels of a number of compounds researchers believe may help with some of the symptoms of MS. Where one obtains MMJ, the reliability of the source, the consistency of the strength, the legal issues in play in your area,all affect what actually happens between thinking about and really using MMJ.

Another contentious issue in the use of MMJ is that this study showed an increase in fatigue and cognitive impairment when using the drug. I don’t know about you, but “getting stoned” isn’t what I’m looking for in a symptom-management therapy, and I’ve enough fatigue with which to contend as it is.

As you can see in the interview I linked to above, I use MMJ for a very specific symptom and in very limited quantities and circumstances. My doctor (also interviewed in the piece) has given his go-ahead for me to use MMJ and asks about its effects with each clinical visit. Even though I use sanctioned patient cooperatives to obtain MMJ, I have found a variance in what I have purchased; differing “strengths,” variable effect and peripheral side-effects can and do change often.

There is much more research and plenty more conversations to be had on the topic and it is not an easy or one-sided conversation in store for us. It is, however, a conversation that I find important and I am thankful that the Society has given us this platform to have said exchange of ideas … no matter on which side of the debate we currently stand.

Wishing you and your family the best of health.



You can follow Trevis via his Life With MS Facebook Page on Twitter and on the EverydayHealth.com “Life With MS” Blog. And also, check out his bi-monthly blog for the UK.

Friday, May 25, 2012

Get Control of Needle Fatigue

Writer, ms.about.com

Certainly, I bet most of us who are on one of the injectable drugs (Copaxone, Rebif, Avonex, Betaseron, Extavia) started out with intense trepidation about injecting ourselves when we started treatment. If I told each of you to think back to that first moment where you (or a loved one) were holding a syringe, knowing that the medication that it contained had to enter your body through that sharp silver needle, I am pretty sure that this is one of those emotionally-charged moments that is permanently seared into your memory.

But, one way or another, most of us have managed to ratchet down our terror of the needle to strong dislike for the whole process. And so, week after week (or day after day, depending on your medication), we stick ourselves. Yes, it hurts. Yes, it is annoying. Yes, it takes time and sometimes leaves marks. Yet, we keep on injecting.

Then comes what I think of as the moment of enlightenment. It's that day when you miss an injection for one reason or another. After a moment of shock, it registers with you that nothing is really different after a missed injection, except you didn't experience that moment of pain or the lingering ache at the injection site. You got to see what it was like to be a "normal" person, someone who never injects medication into his or her body. You realize it is kind of awesome to be that kind of person.

This, at least for me, started me down a path of fighting temptation, the temptation to just give myself a break from my daily injection every so often. It also opened up a window to feelings of being tired of it, just sick of the whole thing. When I first started on treatment, I was listening to the people who told me that I was "lucky" to have MS at a time that there were so many treatment options available to me. I convinced myself that it was a privilege to inject myself every day, as the medication was not available in the past or even currently, to some people. I didn't like the injection, but I did it because I was supposed to.

However, once I realized I was tired of it, I was suddenly really, really tired of it. I would be surprised by unexpected tears when I was unwrapping my syringe. Hitting a nerve now brought on rage, whereas before I would have just whimpered a little and carried on. For the first time, I used the words, "It's just not fair!" This was a low moment in my life with MS, but it was how I felt and I poured my negativity into my feelings about that syringe.

Since I didn't want to quit treatment altogether, I knew I had to reign in these feelings a little before they spiraled out of control. Here are two of the things that I do to help me fight "needle fatigue":

Have a ritual: I try to do the same thing every day and just insert the injection into the middle of more pleasant things that I do. I inject myself after a hot shower and before I have a cup of hot tea and snuggle my dogs and my husband on the couch at the end of the day. Having something nice afterwards reduces my feelings of resentment at the whole thing and turns it more into an annoying chore that is rewarded when it's done.

Play music that you like: This may be just enough to distract you or lift your mood while you inject. It may be that you love to hear Pachelbel Canon in D lilting through the air. Others may love to blast some heavy metal that makes them feel invincible or a specific song that reminds them of a happy moment. Choose what works for you.

Talk to a friend: I have a friend that I can call if my shot hurts more than usual or if I just want a little sympathy. She always knows what to say and before I know it, we are discussing things that completely take my mind off of the whole thing. There are times when a phone call with her is my "reward" for getting through my injection. Reach out to loved ones who will support you and tell you that you are great. Avoid people who might tell you to "stop being a baby" or "that things could be worse" – injection time is not the occasion for "tough love."

Congratulate myself occasionally: As many of you have probably noticed, the mention of self-injection to people without MS often brings gasps of horror and cries of "I could never do that!" We all probably felt that way before we started injecting ourselves, but we worked through these feelings and now we do the unimaginable, every week or every day. That is an accomplishment.

There are other tips and ways that I trick myself into getting the medicine into my body, but I think we all have to find our own way here. It is important to realize that needle fatigue is normal, but needs to be dealt with, rather than just noticing that you don't seem to be injecting your meds very much anymore or allowing yourself to begin really dreading the injection process. Recognize these feelings, do what you need to in order to work through them and get on with the rest of your life. Remember, the actual injection only takes a moment. Allowing it to become bigger than that is a waste of time and emotion that could be spent doing something much, much more pleasant.

What about you? What little tricks do you have to get through the moments when you just don't want to stick yourself? Share your story with others.

Tuesday, May 22, 2012

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

Marie Cooper
Writer, MS Renegade

Although I am a relatively smart person, I can admit to having done some pretty dumb things in my life. A lot of the dumbest things came after finding out I had MS. I thought if I listed the top five, it might save someone from repeating my blunders.

MISTAKE # 1:  Not immediately making long-term financial plans.

I was eight weeks into a brand-new job in 2005 when I was hospitalized with transverse myelitis, which was followed by a diagnosis of MS. I should have looked into disability right away, even if I wasn’t ready. I should have learned everything I could have about it.

Instead, I went back to work way too soon and focused on keeping my job instead of maintaining my health.

Despite worsening symptoms that were seriously compromising my mobility and function, I kept pursuing a high-stress career that I was both good at and enjoyed. I ignored the handwriting on the wall regarding my own future.

After two frantic years of working 12-hour days, being on call 24/7, determined to prove that MS would not impact my performance, my position was eliminated and I was out of work. Before finding a new job had never been a problem. But things were complicated now.  I couldn’t “pass” any more. Now I needed assistive devices, a cane or a walker or more frequently, a wheelchair, to get around. Huge red flag for hiring managers, although, of course, there is almost no way to prove that. 

Two years have passed. Realistically, I am unlikely to ever return to the work force. I am just too sick. I have finally applied for disability, now that my savings are gone and I am in dire financial straits.

MISTAKE # 2:  Not immediately looking into more accessible housing.

I adore my cozy, 1930s seashore home. It is my dream house. I bought it completely on my own, with no help from anyone, and I have been inordinately proud of it. When we moved in I pulled up ratty old carpet, painted, plastered, fixed, planted, you name it. It is a charming place, full of sunshine and color, where guests settle in and are reluctant to leave because it is so comfy.

I used to be able to blow through the house in an hour, vacuuming, dusting, mopping. While running a few loads of laundry. While setting the sprinkler out for the garden. While dragging garbage out to the garage.

I never anticipated that one day it would take monumental effort to get up the three small steps from the back door to the kitchen. I can no longer do stairs. Or clean the house. Or dig in the garden. Or paint or do any of the things I so reveled in when I bought my house. I, quite simply, cannot take care of it anymore.

If I had made plans early on to move to a smaller home or apartment, one that would be easy to clean and could accommodate my wheelchair, my life would be so much simpler. Yes, I will miss my house and mourn it forever. But the stress of trying to maintain it is sucking the life out of me. And now that the market is horrendous, I will be lucky to get any equity out of it at all.

MISTAKE # 3: Not having a frank discussion with my children about my illness in the beginning.

I have four grown children. They are good people with good hearts and I know they love me. But they are really struggling with accepting the harsh reality of how sick I am.  I have done both them and myself a disservice by not forcing us all in the beginning to sit down and talk about what MS is, what might happen and what we were going to do about it. I have always been The One In Charge, strong, bossy, doing it all. My husband died when the kids were little and I have misguidedly tried to shield them from pain ever since. By pretending I was fine, by acting as though there was nothing wrong, what I’ve done has caused even more pain.

So do whatever you have to in order to get your family on the same page and to an understanding of the potential progression of the disease. You might never get to a really bad place, but being prepared together is so important.

MISTAKE # 4: Not taking people up on their offers to help.

My amazing friends and my wonderful sister have stood by me for decades through sorrow and joy. And through MS. They were there for me from that first hospitalization. Always, always, always offering help. “What can I do?” they would ask. And what have I replied? “Oh, nothing, I’m good.” I have said this when I am up to my eyeballs in laundry, dishes and housework that was getting harder and harder for me to do.

It has taken me years to finally admit I need help. And lots of it. I am incredibly lucky that everyone is still around offering, because those offers do tend to fade as time goes on and people tire of asking when they are repeatedly turned away.

MISTAKE # 5: Not taking care of myself.

I found out I had MS. Did I start eating really wholesome food? Did I do whatever exercise plan fit my abilities? Did I take my myriad of medications regularly and carefully? Did I rest and avoid stress as much as possible? Did I make sure I got plenty of sunshine and fresh air? Did I force myself to get out and socialize so I wouldn't get depressed?

No. No, no, no, no and no.

I kept working incredibly stressful jobs and hours. I did not focus on nutrition. I swam for a while, until I broke my shoulder. But when I couldn’t swim any more, I did not look for an alternate way of staying fit. I avoided friends and stayed in my room, in my bed, with the shades drawn. Medication?!? Tuh, (I spit on the floor), I don’t need no stinkin’ medication.

That is how you spell D. E. N. I. A. L. With some stupidity and stubbornness thrown in. Yeah, really helpful coping mechanisms.

BOTTOM LINE : You don’t need to panic, but do yourself a favor and make plans. You might never need to use them, but get your safety nets in place. My denial has cost me dearly. 

For additional information and resources – including SSDI, accessible housing, talking to you children about MS – call an MS Navigator at 1-800-344-4867 or Ask an MS Navigator at MSconnection.org.

Friday, May 18, 2012

North Star

Douglas Winslow Cooper
Something my beloved wife, Tina, recently said to me on our porch made me want to reassure her of the constancy of my love for her, a love that has lasted 49 years so far. Reunited with me almost 20 years after we had separated upon my graduation from college, Tina told me about her multiple sclerosis before I proposed to her, and we have faced her progressive disability together. 

Tina nearly died eight years ago of a respiratory infection due to her MS. In his foreword to our memoir, our primary physician, Dr. Richard Walker, referred to our triumph over death in a 100-day battle in the Critical Care Unit of the Orange County Regional Medical Center. He wrote: “Their love saved them both.” He understood.

We thank God daily for Tina’s survival, and almost daily we thank IBM for its generous retiree medical benefits that have supported around-the-clock critical care nursing in our home from a dedicated set of RNs and LPNs. I worked for a decade as a research scientist at the IBM Watson Research Center in Yorktown Heights, N.Y., my favorite job. We have been very fortunate in an unfortunate situation to have so much assistance.

To illustrate the steadfastness of my love for her, I told Tina to picture the North Star, toward which the axis of our rotating Earth points steadily, day and night, fair weather or foul, seen or unseen, always north. Likewise, home or away, attentive or distracted, I assured her, I remain wholly in love with our heroine.

“I love you, too,” she replied.
Douglas Winslow Cooper, Ph.D., a retired environmental physicist, lives in southern New York State with his beloved wife, Tina Su Cooper, a former editor at the Encyclopedia Britannica and mother of two. Tina was first diagnosed with MS in 1981 at the age of 37, and she has been quadriplegic and ventilator-dependent at home for almost eight years. Tina is the central figure in Dr. Cooper’s book, Ting and I: A Memoir of Love, Courage, and Devotion, available from Amazon, Barnes and Noble, or their website, tingandi.com. 

Tuesday, May 15, 2012

Lessons relearned by accident

Dan and Jennifer Digmann

I stood over Jennifer and shouted the foulest one-syllable obscenity in the book as she writhed in pain on the bathroom floor.

This never should have happened on my watch as her caregiver.

And as I stewed how I was going to get my loving wife up off the floor, all she kept saying was, “I’m so sorry! I’m so sorry! I’m so sorry!”

Me too, Jennifer. Me too.

I was angry at multiple sclerosis and at myself because I had let my guard down. She was apologizing because she knew I was blaming myself for this unfortunate incident and that I was going to have to somehow get her back into her power wheelchair.

This specific moment and reality in our life together actually started several months earlier when we noticed the sponginess of our bathroom floor. The seal along the threshold of the roll-in shower had started leaking water and was damaging the floor underneath the linoleum.

Looking into our options to fix the floor, we assessed other areas in the bathroom we needed to repair and improve. In addition to replacing an upright linen closet that our cat, Cooper, and Jennifer’s power wheelchair, Grape Ape, had managed to damage, there was one major modification we had to make.

Jennifer had always wanted to spit into the sink.

A standard vanity made it impossible for Jennifer to roll Grape Ape up so her knees were under the sink and she could use it just like everybody else. With a new roll-under sink, Jennifer could more easily wash her hands. Use the towels. Grab a Q-tip. Brush her teeth. Spit in the sink.

Indeed, how much so many of us take for granted.

With the vision and construction skills of our friend Cliff, our bathroom was quickly making our accessible dream a reality. Ah, yes. The realities of life with multiple sclerosis. More specifically: life between two people who have MS.

After staying with Jennifer’s parents for a few days while Cliff overhauled what likely is the most important room in our house, we returned home to a nearly completed bathroom.

An industrial-strength fan was strategically positioned in the room’s center to turbo-dry the grout in the now leak-proof roll-in shower. Looking to use the bathroom, the fan’s noisy whirr muffled our voices as I attempted to help Jennifer transfer to the toilet.

It was a routine activity we complete several times each day. As we always do, she put her arms around my neck and I straddled her right leg, slightly squatted, wrapped my arms around her back and locked my hands together. She counted, “1, 2, 3.” I helped her up, and there Jennifer stood holding the grab bar to the right of the toilet as I went around to guide her in the transfer.

I could tell something seemed a little off in her stance. So I asked her, “You got it?”

She said something, but I couldn’t quite make it out. Again, the fan’s noisy whirr muffled our voices.
“You got it?”

She said something I still couldn’t understand, and I then watched in helpless horror as her legs melted and she crashed knees-first onto our newly tiled bathroom floor.

This never should have happened on my watch as her caregiver.

But it did, and it painfully reminded us of how important clear communication is between people with MS and their caregivers, families and friends.

In this instance, we should have turned off the fan. Had we turned it off to get rid of the noise, I would have understood Jennifer when she was telling me that her knees were not locked and she wasn’t ready for me to let her go to stand on her own.

As Jennifer and I have discovered through our nearly seven years of marriage, communication goes beyond controlling the noise in the room. Among other qualities, we’ve found communication also includes honesty, empathy, listening and patience – HELP.

Honesty. Tell each other the truth (being mindful to not hurt each other’s feelings) so you never spend time second-guessing what the other person is thinking or needing.

Empathy. Always put yourself in the other person’s shoes and look at the situation from that person’s perspective.

Listening. Open up your ears to hear and understand what your caregiver or loved one is saying and ask questions to ensure you understand and you both are moving forward together.

Patience. Take the time with each other to be honest, empathetic and listen.

We are both on the same team and are doing the best we each can do to ensure we beat this disease together.

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.

Friday, May 11, 2012

Do you panic in the sun?

Julie Stachowiak, PhD 
Writer, ms.about.com

I'd like to think that I am a rational person, guided by logic and good common sense, but then it gets hot outside and that goes out the window.

Like most people with MS, I am heat intolerant. Many of my symptoms get much worse in hot weather. I am pretty much constantly fatigued, with a headache. I have tremor that makes it hard to do tasks requiring precision with my fingers, such as typing a message on my phone. My feet tingle throughout the day and feel like they are on fire at night.

Despite all of these increased symptoms, I can hold things together pretty well. The big exception to this is when I am in direct, hot sun. Then I get literally frantic. I actually get scared at how quickly I lose control of all rationality in that situation.

An example of this is when I pick my girls up from school. Even the walk across the parking lot and down a short stretch of sidewalk can bring me to the edge. If one of the girls has to stop while we are in the sun to do anything – tie her shoe, save a ladybug or pick up a pencil that someone has dropped – I lose it. I'm sure I sound deranged as I scream, "You know Mommy can't be in the sun! Hurry up! This is making Mommy freak out!"

I have had similar incidents with friends who innocently choose to walk in a straight line across a sunny patch, rather than dashing from shady spot to shady spot. Even the dogs have been on the receiving end of my crazies when they pick the wrong place to stop and relieve themselves.

This is not just unattractive. It is also not fair to the people (or animals) who I am with. On top of that, it really is a scary feeling to get that out of control.

I have been trying different things to minimize my reaction to being in direct sun. Here are a couple of things that have allowed me to be calm in the sun for limited amounts of time:

Wearing a hat: It is not just the physical discomfort of being in the sun that causes me to get so frantic. The brightness of the sun also makes it seem so much more dramatic. I have found that wearing a hat (that’s right, a big, floppy hat like your mom used to wear at the beach) makes me feel much more comfortable in the sun, despite the temperature.

Carrying a cold drink: I got the tip a long time ago to freeze plastic bottles filled with water or diluted juice and to carry them with me. I can drink the liquid as it melts and hold the bottle against my neck or face to cool down.

Pre-cooling: Before I go into the sun, I sometimes take a cold shower. Making myself uncomfortably chilly buys me some time in the heat.

Those are just a few of my little workarounds to tolerate short periods in the sun. Of course, I realize that all of this can be avoided by staying inside in a cool, dark house from May until September. However, like most people, I have obligations that make this impractical. Besides, it doesn't sound very fun.

I am in no way advocating that people with MS (or anyone for that matter) spend a great deal of time in direct hot sun.  The days of hanging out on a towel at the beach are in the past, due to the risks of skin cancer.  However, being able to get from place to place during summer months will usually require some moments in the sun. A little preparation can greatly minimize stress and make it possible to actually have a good time during the hot seasons.

Do you have any tips for surviving the sun? Please share them with us.

Tuesday, May 8, 2012

The human connection

Travis White
As I’ve learned over the past several years, MS can create a kind of cabin fever.  For some of us, it’s hard to get out and about and mix it up with our fellow humans.  Others may just lose the desire.  For me, a variety of factors could combine to isolate me. 

I work out of an office in my home.  I visit my clients virtually.  I find that e-mail is a very productive way to communicate.  I’m an adjunct professor at the University of Denver but many of my courses are online.  Some of my students are thousands of miles away so I never actually meet them.  

That means I don’t necessarily have to go out of the house every day.  Fortunately, I have a wonderful wife who kicks me out every now and then just for my own good. I also make excuses to go out and visit my clients face-to-face (if nothing else, it’s a good way to pick up additional work). In addition, I’ve hired a trainer at the local gym who knows that I have MS and has tailored an exercise routine accordingly. And I  just hang out at Starbucks from time to time.

Though I’m not a social butterfly, I generally like people and enjoy their company. Yes, there are a few that I just can’t stand – but even they can stimulate my argumentative side in positive and productive ways. 

I’m determined not to let “MS cabin fever” make my situation worse.  Mixing it up with other humans is critically important to your mental health.  Not doing it regularly can drive you bonkers.  If you feel the fever rising, call a friend. Or even an enemy. Virtually anyone can stimulate your humanity and help keep you sane.

Here’s a tip – if you don’t know who to call, then call MS Friends 1-866-673-7436 or visit MSconnection.org. There’s always someone available who can help you make the human connection.

Wednesday, May 2, 2012

The Funk

Have you ever been mad but really can’t figure out why? I can’t explain or understand the reason, but for the last couple of weeks I have been upset at the world. I am in what some people might call a “funk.” This is where no matter what you do or what good happens you can’t seem to be happy. In my case, if I won the lottery right now I would be mad over paying the obligatory taxes!

This space is not new to me, but I always have a difficult time handling it. Unfortunately, it causes me to watch life pass me by. The worst part is I have been slapping my new-found frustrations in the faces of those around me--i.e., my husband. I receive his hints on ways to conserve energy as insults. I take his suggestions of traveling when the sun is down as belittlement.  My responses to his ideas are often aloof and abrupt.  Sometimes I don’t recognize what I am doing until it is too late and we are both mad. The “funk” makes me want to sit at home and do nothing. The last thing on my mind is going out in public and mingling.

But despite how I treat him, my husband still tries his best to keep me involved and interested in the world around me.  In order to push through the” funk”, I have been halfheartedly agreeing to venture outside of my four walls hoping that an outing will snap me out of it. So far it has not helped. Going out actually seems to be making it worse.  Being among a bunch of able-bodied people bothers me. Jealousy? You bet!

When I see individuals walking around in the mall or jogging at the park I wish I could join them. I become envious and bitter just by seeing people enjoying themselves. I can’t do what they are doing because of my body’s heat intolerance, lack of balance and my biggest nemesis, fatigue. My resentment makes me blind to having fun. This reality ruins the purpose of the entire outing. Again, I seem to play a mere observer.

I try to focus on what I can do, but that trick can only take me so far before I begin to reminisce about days of old. The measures I used in the past to stop the “funk” aren’t as effective anymore. My attempts at outside excursions have fallen short and thinking happy thoughts seem more like a cliché than a remedy. 

To be honest, I think this particular “funk” is because I’m quickly getting weaker.  Every time I sit on my scooter I feel as if it’s sucking the strength right out of me. Everything is hard. My “new normals” are coming faster than I can accommodate; faster than I bargained for.

In the end, all I did was let loose a healthy little cry. Seems like every now and then that’s all I can do.