Multiple Sclerosis: What EVERYONE Needs to Know

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“People just don’t know about it.”

October 22, 2012

There are two things many people say that irks those of us that have Multiple Sclerosis:

  1. “It’s that Jerry Lewis thing, isn’t it?”
  2. “But you look so good!”

No, it’s NOT that Jerry Lewis thing.  Jerry Lewis represents MD—Muscular Dystrophy.  MS stands for Multiple Sclerosis. Two extremely different disorders.  As we MSers talk to each other, we get discouraged that MD has had a national figure representing and fundraising for them.  We wish we had a national well-known person that could do the same thing for multiple sclerosis. 

So many people are not aware of MS.

Nor do they understand it.

If people really understood MS, they would know not to say “But you look so good!”  We would like to respond back “Thanks, but we sure don’t feel as good as we look!”  Why?  Because multiple sclerosis is largely an invisible disorder.  People automatically associate MS with walking problems and wheelchairs.

Being a disease of the central nervous system, potentially anything controlled by the CNS can be affected:  sensory functions, sight, cognitive/emotional functions—in addition to motor functions. These MS symptoms are not only invisible; they are extremely common and very disabling. Some examples include fatigue, weakness, bladder/bowel/sexual problems, numbness and tingling sensations, loss of sensation, balance/coordination issues, loss of vision, pain, dizziness, depression; the list is enormous.

Someone who understands MS would also know the detrimental effect any type of heat has on a MSer, whether it’s from the temperature, a fever, the time of day or a hot flash.  Or that staggered walking is not from too many drinks, but rather from a loss of balance/coordination due to damage in the brain.

Also, since many symptoms are invisible, many people do not realize that someone may have MS.  Or, because they don’t see a cane, brace, or other disability device, it is assumed that a MSer is okay.  It is hurtful to get dirty looks and remarks when a “normal-looking” person with MS gets out of the car in a handicapped space; their ability to walk before their legs start to wobble may be just ten minutes or 100 steps.

So, both awareness and understanding are needed.  To survive MS, we need a tremendous amount of support, not only from our friends and family, but from everybody.  Physical, mental, emotional and financial support.  Support for us individually due the difficulties and disabilities we live with; and support for the MS community as a whole financially–to fund research for curing MS, preventing MS, and restoring lost function due to its damaging effects.

I started an Orange Ribbon campaign recently with the Arizona Chapter of the National Multiple Sclerosis Society.  We MSers and some of our friends and families have just about finished 5,500 orange ribbon pins that represent multiple sclerosis (like the pink ones that stand for breast cancer).  Our goal is to have them ready for distribution at the Phoenix MS Walk on November 3rd.

We want to create more awareness, and when strangers ask us “what’s that orange ribbon for?” we will explain MS.  We will be advocators and educators.

So if you see someone wearing an orange ribbon on their lapel or shirt, it means either they have MS or someone that they know has MS.  We make them ourselves using orange satin floral ribbon and safety pins. 

During one of our ribbon-making sessions, a woman asked “What do you say when someone asks what MS is?  It is complicated and difficult to explain.”  Keeping it simple and uncomplicated, I would suggest this:

What is Multiple Sclerosis?

Multiple Sclerosis is disease of the central nervous system. Potentially anything controlled by the CNS can be affected–such as motor function, sensory function, sight, or cognitive/emotional functions.  Many symptoms are invisible, so many people don’t know someone has MS. (Examples: fatigue, weakness, bladder problems, numbness/tingling, pain…)

It is not fatal, contagious, or congenital.  There is no cure; the cause is unknown.  It is generally progressive.  The majority of persons afflicted will become disabled during the decades of their lifetime with no way to fix the damage. 

Every case of MS is different, unpredictable, and very uncontrollable. It is unknown what course the disease will take, what will be affected, how quickly it will happen, and how much disability will occur.  

There are new drugs that are trying to slow the progression, and meds to help relieve symptoms and shorten relapses. Nothing is available yet to prevent MS or restore lost functions resulting from its damaging effects.  However, there are many things one can learn to manage living with it.

We at the Arizona Chapter of the NMSS are starting to hand out copies of this brief description of MS to people we meet that do not know about multiple sclerosis.  We are going to encourage other MS groups and organizations to do the same.

We need help, and we certainly need a cure.

www.DebbieMS.com

 

 

MS and Sleep

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“A Top Priority”

If someone asked me what is the #1 thing a person with MS should do, I would say make sure you sleep. If you do nothing else for yourself every day, you should at least make sure you get 7-9 hours of good sleep.

What is good sleep? Being able to fall asleep and stay asleep. Easier said than done for a person with MS, whose sleep becomes dysfunctional due to bladder problems, pain, spasticity, worries about life problems, and the actual effect on the brain by MS itself.

Why is sleep so important?

Sleep affects EVERYTHING in the body—your heart, energy level, pain, weight, and even skin. Your brain cannot function well without it. It affects your mental state: judgment, reaction times, moods, memory, concentration and decision making. Sleep enables your brain to process information and store it in your memory; it rejuvenates parts of your brain that was used during the day and even parts that are not normally used.

Sleeps keeps your immune system healthy and your resistance up to prevent colds, viruses and illnesses. Sleep problems can lead to accidents, as balance and coordination issues that many people with MS suffer with become worse. Sleep deprivation makes it harder to deal with stress, solve problems, or recover from sickness or injury.

Good sleep relaxes the body, helping to reduce pain from sore and tense muscles.
And poor sleep or lack of sleep can impact your life at home and at work, as well as your relationships. Energy levels—already plagued because of the fatigue factor—are exponentially reduced for a person living with MS.

It’s common sense. But what’s not apparent to many people is that sleep also gives your vision a rest. Vision is a cognitive activity! Poor sleep means your neurotransmitters, which normally suppress pain, don’t have time to refresh. Not getting enough sleep can impact the arteries, increasing the risk for heart disease/stroke and causing skin to become stretched and shallow.

Less sleep affects the appetite since it causes one to snack more, increasing the risk for weight gain. Becoming overweight makes physical activity more difficult and lessens endurance, which means fewer calories burned. In addition, inadequate sleep releases less serotonin in your brain that can cause the body to crave sugary foods.

There are several things you can do to improve the quality of your sleep. (Note: This list was from an article in Make the Connection, U.S. Department of Veteran Affairs.)

• Keep your bedroom quiet, dark, and cool
• Make your bedroom a place just for sleeping and not a place for other    activities like watching television, reading, working on the computer, or listening to the radio
• Create a relaxing bedtime routine
• Stick to a sleep schedule, making sure you wake up close to the same time every day
• Get outside and exercise daily (but not close to bedtime)
• Take medications that might delay or disrupt your sleep earlier in the day
• Avoid caffeine and nicotine
• Avoid alcohol before bed or drinking excessive amounts of alcohol
• Avoid large meals and beverages late at night

For MSers whose sleep is bothered by their symptoms, I offer these suggestions:

• Manage your symptoms that impact your sleep by minimizing them as much as possible. For example, I suffer from spasticity, and I make sure I stretch my muscles every day. This reduces the tightness, jerks, pain that spasticity causes. I have much back pain, and deep breathing and a shot or two of scotch will put me to sleep right away. I refrain from liquids two hours before bedtime to get my bladder as empty as possible. I take my antidepressant at night, since a side effect it causes for me is drowsiness. If I wake up in the middle of the night worrying about something, I read a magazine article to get my mind on something else.

• Consider a prescription for sleeping pills. Personally, I have had a ‘script for them for thirty years. My personal rule of thumb is that if I have two nights of poor sleep in a row, I take a pill on the third night. I make myself sleep, because I believe that not getting good sleep is far more harmful for me than a sleeping pill.

So, bottom line, make sleep a priority. A requirement. You’ll feel better, think better and function better.
www.DebbieMS.com

Managing MS vs. Living with MS

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“Are they the same thing?

October 1, 2012

Is there a difference between Managing MS versus Living with MS? Yes and no. It depends on who you ask.

On September 24, The NPR Diane Rehm Show aired “Diagnosing, Treating and Living with MS. A panel of experts—neurologists/MS Specialists including a doctor who has MS—answered audience questions about diagnosing, treating and living with multiple sclerosis.

My first response after listening to the show was that the doctors in the discussion did not truly address “living with MS.” The responses were dominated by treatments and medications that patients should take. Questions that were asked about symptoms like spasticity and fatigue or lifestyle activities like diet, stress and exercise were glossed over with comments like “research hasn’t yet shown…” or reverted back to the necessity of getting on a treatment ASAP.

I have had MS for 32 years, and while I think the treatments available and new ones on the horizon are exciting, I would like to point out that there are so many effective ways to manage MS daily that should be understood that are non-medicinal.

Management of MS should be a two-pronged approach: medicinal AND non-medicinal. A person should not only rely or be concerned about drugs to solve their problems with MS. It’s not enough to just “live with it” and think that having an injection or popping a pill will magically take away or minimize the problems MS burdens a person with.

There are numerous things an MSer can do to manage and control (yes, control!) both the symptoms and the course of their disease without the drugs. But this all takes knowledge, support, work, dedication and discipline. There’s no easy way out of it, but trust me, it works!

First, a healthy lifestyle should be maintained to prevent illness, stress, etc. that can help minimize further relapses/damage to the CNS. This means keeping your resistance up and body healthy through proper exercise, diet, stress management, sleep/rest etc. Illness/infections often trigger a relapse by activating an immune system response with subsequent damage to the CNS. Extra precautions to prevent accidents/falls (like using disability aids) would help accomplish the same thing.

Second, there are many things a person can do to manage symptoms. For example, I suffer with much spasticity; by doing daily stretching/exercising, while taking baclofen (a medication to reduce spasticity), the stiffness and tightness is greatly reduced for me. Another example is the importance of learning good bladder management from a neuro-urologist. Eighty percent of persons with MS will suffer from a bladder issue at some point. Putting up with a leaky bladder by wearing pads is not only distressing, it is dangerous. Urinary tract infections (UTI’s) are common and can lead to complications and undesirable consequences.

Understanding the sensitivity of MS to so many factors that intensify symptoms can enable a MSer to take certain actions to calm their symptoms. A prime example is the negative effect that heat has on symptoms like fatigue, endurance, balance… One can learn easy ways to counteract it quickly by using a cooling vest, ice packs, drinking ice water and taking a cold shower. Fatigue—the hallmark symptom of MS that affects 90% of MSers—is another symptom that can often be managed by frequent resting, lifestyle changes, support from others…

Alternatives therapies have helped physical, emotional, and mental issues for many, many folks with MS. These things include yoga, trigger-point therapy, pilates, deep breathing, tai chi, reflexology to name some of them. Finding things to make a person feel better goes a lo-o-o-o-ong way. Some things work for some better than for others, but how do you know if you don’t try them?

After the Diane Rehm show was over, the doctors continued to answer questions submitted by people. Dr. William Shaffer, an attending neurologist who also has lived with MS since 2002 had this to say in response to a couple of off-the-air questions:

“The disease modifying medications do not directly help with symptoms in MS. At the same time, if the disease is being modified with a proper medication, sometimes people do feel better with their symptoms. However, there are many medications/management for the many symptoms we as people with MS can experience.”

“I don’t know any specific numbers on people who didn’t take medications and how they are doing. If you look at it like this, these medications are to delay disability, slow progression and some can have improvements on MRIs. I can tell you that I have seen people in my clinic that had been doing well for years and so didn’t start any medications. But, then they had an attack that hit them quite hard. Then they wanted to go on a medication, “to get better.” I told them that the medications are to keep from getting worse and not to make one better.”

Finally, one of the doctors had this remark: “We encourage patients to really think about lifestyle issues, to maximize their activity and exercise, and also to maximize healthy diet, because we now know those things do impact the amount of residual disability people have.”

I wish that comment had been made and talked about during the show.

So if you asked me if there is a difference between managing MS and living with MS, I would respond “yes!” Managing MS should be an integral part of living with MS. I know many people who have had MS for 20-30+ years and I know they would respond to this question the same way.

But the opinion of the person with MS is what ultimately matters. Do you want to just live with MS, or do you want to take some control and manage your MS while living with it?

The choice is yours!

For more info about me and what I am talking about, please go to www.DebbieMS.com

The Ultimate Doctor

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“Are You Happy with Yours?”

September 24, 2012

Two days before leaving on an out-of-state vacation recently, I started having the classic symptoms of a urinary tract infection (UTI). Increased spasticity, cloudy urine, frequent urination, burning. Within a day, the symptoms intensified and worsened; my bladder medication wasn’t working and I was leaking urine uncontrollably. The heat I felt from a slight fever contributed to the mayhem of it all.

Now bladder infections are nothing to mess around with, especially if you have MS. An infection like this not only is bothersome, but more importantly, it is painful and can quickly lead to trouble like a relapse and/or kidney problems. It needs to be addressed quickly.

Having dealt with bladder problems for over two decades and having to use self cathing to void, I know what to look for and what to do. But of course, I need my doctor to get me on an antibiotic ASAP.

It was a Sunday, and I was to leave on Monday. I called the office’s answering service, explained my situation, and requested the on-call doctor to contact me. I received a call within a half of an hour from the doctor. After a brief discussion, a prescription was called into my pharmacy immediately and I had the antibiotic in my hands soon after.

Now THAT’s a good doctor. To me, anyway!

Of course I had been a patient at the office for years, but nevertheless, he addressed my problem with no hassle or waiting. But, even if I wasn’t leaving on a trip the next day, the office has worked with me on this issue before. With past UTI’s, the office helps me on the same day that I call. I know how to take a “clean-catch” urine sample at home, take it to the office for a “squeezed-in” appointment that lasts no longer than five or ten minutes, and once verified that there is a bacteria, I get a script.

Having excellent physicians when living with a chronic illness is essential. It’s a lifetime relationship that requires frequent and unexpected visits, not a once-a-year annual checkup. I have doctors that I know rank in the top 10%. And I have doctors that treat many other MS patients and understand MS.

Now when it comes finding a physician, it is an individual and personal decision. By that I mean that one has to decide what he/she wants from their doctor and what the relationship needs to be. Find doctors and professionals that treat others with MS and fit your personality.

I’ll use myself as an example. I don’t want a hand holder; I want someone I can consult with. I am not a whiner and when I call, that means I need help ASAP. I want called back that day, action within a day. I don’t want to be dragged into the office when I’m too sick to get out of bed. When I go into the office, I don’t want to wait an hour. I’ve got a fatigue problem. I want to talk to my doctor, not the receptionist. I want my doctor to be connected with the latest studies and research.

Are you happy with your physician(s)? If not, it’s time to move on and find another one. You are in charge, not the doctor. You hired the doctor, and if you are not getting satisfaction, fire him/her and get another one.

Ask yourself what you want/need from the doctor and the office, such as good bedside manners; prompt responses; office visits; follow ups; experience; reviews. Interview the office/doctor before you make the first appointment.

So how do you find a good doctor? Get referrals from: a doctor you currently have that you do like, your local MS Society Chapter, family, people you know in the health field, and other MSers. Check their background and credentials on the internet. Two websites I use are www.vitals.com and www.healthgrades.com, but there are others; you can do a Google search using a phrase like “doctor reviews and credentials” to get other websites.

Finally, a couple of other tips:

• Go to the office or call on the phone prepared. Have your questions written down, have your problems written down with specifics. You will only have fifteen minutes with your doctor, if that. Don’t expect to be educated by the doctor. Expect answers to your questions. If you have a lot to talk about, schedule a longer appointment.

• If you have MS: Realistically, the most your doctor will do for you is to prescribe medications for symptoms, encourage disease modifying agents and make recommendations to other professionals (urologists, therapists…). Don’t allow yourself to feel pressured into anything you don’t want to take or do.

• You need to feel that you trust your doctor.

www.DebbieMS.com

Orange Ribbon Campaign

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“It stands for Multiple Sclerosis”

September 17, 2012

Both awareness and understanding of Multiple Sclerosis (MS) need to be increased EVERYWHERE.

How? You can help by being an educator and advocator simply by wearing an orange ribbon every day. Everywhere you go, people will see it. Some people will ask what it represents, and this is the opportunity to explain MS. You can ask questions like “Did you ever hear of it?”, “Do you know anyone that has MS?”, “Do you know what it is?” Others will begin to think “Huh—there is another orange ribbon…”

We can’t just sit back and wait for a celebrity or well-known person to mention it on TV. It doesn’t happen often enough and so many times MS is misconstrued. Or wait for an MS event like the Walk, or the Bike to come around before we wear our orange that primarily targets our friends and family that deal with MS already.

EVERYBODY dealing with MS should wear an orange ribbon EVERYDAY. This includes not only MSers and their friends and family, but also celebrities and people involved with MS such as MS Associations/MS clinics from the CEO/ Board members all the way down to their employees and volunteers. There is strength in numbers!!

People need to understand that because there is no cure for MS, and millions of persons deal with this chronic, often progressive, disabling neurological disorder throughout decades of a lifetime. It affects nearly every citizen of the country in one way or another.

When someone wears a pink ribbon, everyone knows what it stands for; breast cancer in recent years has received the support and recognition it deserves. We need this to happen for MS! Multiple Sclerosis needs a fundraiser on a national scale like what is done for muscular dystrophy, cancer, or victims of disaster in other countries.

And we can do this! Can you imagine the buzz if all of us wore our orange ribbons all the time? Can you imagine the awareness if celebrities or well-known people like Montel Williams, Sharon Osborn, Ann Romney or Michelle Obama wore orange ribbons and followed our lead? Can you imagine how there would be more support for research, insurance coverage for necessary medical programs, and social security disability? Yes, folks with MS often get declined for SS benefits the first, second and even the third time they apply for approval. 🙁

So, start today and put on your orange ribbon! (I made mine out of orange craft ribbon and a tie tack.) See my video http://youtu.be/TcEjyr2iMHY, share this post on all social media platforms, and spread the word to everyone you know to wear an orange ribbon.
If someone doesn’t know what MS is, hand them a copy of this explanation:

What is MS?

Multiple Sclerosis is an autoimmune, inflammatory disease of the central nervous system, which includes the brain, spinal cord and optic nerves. That means that potentially anything controlled by the CNS can be affected–such as motor function, sensory function, sight, or cognitive/emotional functions.

It is not fatal, contagious, or congenital. There is no cure; the cause is unknown. It is generally progressive. That means that because there is no cure, the majority of persons afflicted– millions worldwide–will become disabled during the decades of their lifetime with no way to fix the damage. Current estimates are that 20-25% will end up in a wheelchair.

From the day those of us received our diagnosis, we have no idea what course our disease will take. What will be affected, in what way or how rapidly will we be affected, and how disabled will we become? MS is unpredictable and uncontrollable; the losses never stop, the grieving process never ends.

There are new drugs that are trying to slow the progression, and meds to help with relieving symptoms and shortening relapses. But they all have side effects. Nothing is available yet to prevent MS or restore most function lost resulting from its damaging effects. However, there are many things one can do to manage it effectively.

It’s also on the front page on my website:

www.DebbieMS.com

MS: Invisible Symptoms & Fatigue

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“But you look so good!”

September 4, 2012

I was invited to be a guest on a radio talk show to discuss multiple sclerosis and living with it. This was the first time I ever did a radio talk show, so I was a bit nervous. There was no audience to speak to directly, and I had to keep in mind newly learned instructions about cues, minutes, red lights, etc. so at times it was a challenge to stay focused.

As the saying goes, hindsight is 20/20. When the show was over, which flew by quickly, I was dissatisfied with myself that I did not give adequate attention to fatigue and those invisible symptoms during the discussion.

When someone looks at me, I look terrific and normal even though I am sitting in a scooter. A guy in the studio was shocked when I told him I couldn’t walk at all. It got me thinking that when it comes to a person with MS being disabled, the impression is that “you don’t look disabled” which then sometimes implies why are you on disability?

After returning home and thinking about this, I took out my webcam and created a video about how disabling fatigue and other invisible symptoms are. Here is the link: http://www.youtube.com/watch?v=rnd1MrkH0vE&feature=plcp  It shows my true colors at a down moment—quite a contrast from my usual upbeat self.

In an earlier column, (April 30th) I talked about invisible symptoms. It’s worth repeating parts of it again:

On the outside so many of us look good unless we have some kind of walking aid to indicate otherwise. We’re not bleeding, we have good color in our faces, and we are not coughing or blowing our noses. When we look good, people automatically assume that we are good. I’m in a wheelchair, but I still look good and completely normal. If I would use a store’s scooter instead of my own, I would get dirty looks. I’m misunderstood.

But very often we are not good because so many of the symptoms are invisible. Pain, tingling, numbness, fatigue, dizziness, tightness, depression, blurry vision, balance, coordination—the list is endless. These symptoms interfere with everything we think, say or do. They are annoying; they hurt; they are frustrating; and they make us crabby. For persons with MS that do or do not show visible impairment or walking aids, these symptoms are very disabling.

Fatigue is the hallmark symptom of MS. It is a universal complaint by over 90% of MS victims. It doesn’t matter if the case is mild or advanced. It doesn’t matter if one had a good night sleep or if the MS is not currently active. Fatigue is always present with MS, 24/7. Why? Fatigue exists because MS is a disease, a chronic illness that causes other symptoms such is walking problems to intensify. Constant fatigue leads to our moodiness or depression. Often we can combat fatigue by pacing our activities, taking frequent rests, or letting others do things for us. But it doesn’t always work.

MS is an unpredictable neurological disorder. New symptoms can appear and existing symptoms can intensify when we least expect it. We never know how long these disturbances will last, how severe they will become, or if they will go away. A new symptom that doesn’t go away requires an adjustment to accepting it and learning how to live with it.

We live a life of uncertainly.

www.DebbieMS.com

Needed: MS Awareness and Understanding

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“Wear that Orange Ribbon!”

August 29, 2012

Multiple Sclerosis doesn’t discriminate when it comes to who gets it. The playing field is equal.

It doesn’t matter if you are white, black, Asian, or Native American. Doesn’t matter if you are male or female, though females are 2-3 times more likely to have MS. Doesn’t matter which continent you live on, though it is more prevalent in northern latitudes. Doesn’t matter if you are young or old, though the onset is usually between the ages of twenty and fifty. And it doesn’t matter if you are rich or poor.

Even when the statistics reflect a higher percentage of occurrences in certain groups, there are still no exceptions. A person living in the tropics or a child can still develop MS.

When it comes to the types of symptoms one gets, the course of the disease, the duration of a relapse, or the amount of disability one experiences, MS doesn’t discriminate there either. No two people have the same identical case; no two people respond to treatments equally.

What is not equal is the amount of support an MSer can get depending on their financial situation. Now, before I go on, I want to make myself clear: MS as an illness is just as difficult and interfering to live with whether a person is rich or poor.

Now, having said that, here’s where inequality exists.

I am an “ordinary” person, like most persons with MS. Middle-to-low income. When my disability progressed, I had to quit my job. We were lucky to have enough money to pay bills every month, but there were no extras. Before my husband retired, I had to take care of our son, house, cooking, shopping, washing, paying bills, tax preparation, and so forth as best as I could. Now that he is retired, I am still lucky in that he helps me with all of these chores; however, we are on fixed income and each year the dollar gets squeezed more and more.

Now I don’t begrudge a person of wealthier means. They are still suffering too, and it is not anyone’s fault that they are richer than me. It’s just that I have the added stress and physical fatigue of having to do these things on my own. Of course I have the support of family and friends who lend a hand to do these things. And mental and emotional support available through MS organizations and peers.

But many times it is not enough to get through each day’s to-do list. Too often there is no safety net or easy lifeline when a job loss occurs or health insurance is lost.

I’m going to stick my neck out and say MS is harder on the “ordinary” person. The additional physical, mental, and emotional stress of an ordinary person has a negative effect on our MS both in the short and long term, probably causing our MS to be worse overall.

So, what’s my point? The point is that I want everyone to be educated about what MS is and does to an ordinary person. There are famous people in the spotlight who have MS and are creating awareness—like Montel Williams, Ann Romney, Jack Osborn. But their image doesn’t realistically project MS in the sense of the majority of us.

Many of us have been told “You look so good”, but these celebrities look too good. Again, through no fault of their own, the way media presents them causes misconceptions. So now there are two stereotypes at opposite ends of the spectrum: the dilapidated person in a wheelchair and the normal looking person so refreshed, energized and high-spirited.

The people in the middle, like the middle class, need to get into center stage for once. The “ordinary” person with MS needs a voice and attention on a national level. We have fallen through the cracks.

If someone wears a pink ribbon, everyone knows what that stands for. If it is an orange ribbon, most people wouldn’t have a clue what it stands for. The MS community needs celebrities with MS like Montel Williams to wear an orange ribbon everyday to increase awareness. The MS community also needs to wear an orange ribbon to build an identity on a daily basis. This includes the top brass of all MS Associations as well as their employees and volunteers.

But, in addition to awareness, I believe everyone needs a basic understanding of what MS really is:

MS is an unpredictable, invisible, interfering, often disabling neurological disorder that has no cure and isn’t fatal or contagious. One that impacts millions of people, lasts a lifetime, and has immense costs associated with it for every citizen in this country.

If that happens, more support for research, financial assistance, social security disability and other things will happen for multiple sclerosis.

Somehow, we ordinary people with MS who are also the majority have to band together and make this happen. Plus we need advocates at the national level as well.

So please put on your orange ribbon and spread the word!

www.DebbieMS.com

Medical Marijuana for Pain

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“It’s My Body”
August 20, 2012

 
It was the “burning to the bone” and “knives in my back” pain that provoked me to call my friend to get me some medical marijuana last night. I just went through a week of incredible stress—physical, mental and emotional—and the pain in my back is excruciating.

 
It is amazing how marijuana takes the edge off pain and gives me relief. Sure, there are pain medications like Vicodin or Percocet available, but I personally choose not to go that route since narcotics are addicting, cause constipation, and mess up my head and mental clarity.

 

Having advanced Multiple Sclerosis causes me to have pain from many factors:

*stress/tension
*spasticity
*posture
*stressed body parts
*nerve damage

I use a wheelchair, so the long hours of sitting intensify these problems. During the past week, out-of-state family came to visit and stayed at my house. Even though they pitched in to help, I was out of my daily regime of intermittent resting and exercising.

The stress from so much confusion/activity under my roof intensified my muscles to tighten, posture/spasticity to worsen, depression and moodiness to set in.

My usual relaxation techniques of deep breathing and Yoga did not de-stress me this past week. Then the barometer dropped and the rains came, increasing the pain even more. There’s no way to escape Mother Nature. If any doctor or researcher tells me that rain, barometric pressure swings and humidity coupled with heat does not affect a person’s multiple sclerosis, I say “bull crap.” I know my body and I know how I feel.

Pain is transmitted by nerves, and pain from nerve damage is different from the other types of pain. It doesn’t originate from muscles or bones, but from the central nervous system as nerve pathways are damaged by the MS lesions. This pain has been described as burning, aching, or stabbing. Sometimes there are prickly or itching sensations. Sometimes sensations get “mixed up”, where pain can be caused by the clothing that is worn. People who have had shingles can relate to this kind of pain.
After over thirty years of living with MS, I’ve accumulated a lot of nerve damage. When pain occurs from nerve damage, forget the aspirin or Ben-gay or any other over-the-counter meds. It just doesn’t work. Often, a couple of shots of scotch or ice packs will deaden the pain for me, but not always.

 
Chronic pain interferes with life physically and emotionally. Not only is pain depressing; it causes one to become agitated affecting concentration, memory, and being civil to people.

 
I tried medical marijuana before, and it definitely takes the edge off the pain for me. I’m not a regular user; I use it when all else fails. The way I see it, I’d rather take a few puffs of a joint than take a boatload of pain killers or alcohol.

 
Personally, I don’t care if it is illegal. The voters here in Arizona said “Yes!” to medical marijuana at the last election. But the state is fighting the path to go forward with it because it is illegal at the federal level. And the haggling will go on and on because government really doesn’t want to legalize it. But they will turn the cheek the other way to the dangers of texting or using cell phones while driving in this state. Or do nothing about the abuse of prescriptions for narcotics by doctors. How stupid is that?

 
So I have joined the underground. There are ways to get it and hide it. I have shed my good-girl image and doing what I have to do. If the cops want to arrest me over a joint, then that’s a chance I will take. But they have to catch me first and I am pretty clever.
I’m getting relief in the privacy of my home and not bothering anybody.

It’s my body and it’s my choice.


www.DebbieMS.com

Managing Overwhelming Circumstances

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“Speak Up, Nicely.”

August 13, 2012

It was 117 degrees yesterday, and the weather prediction doesn’t expect the temperature to go down much over the next week. My family from out-of-state is staying with us for the next ten days. Between the heat, fatigue and overwhelming activities under my roof, will I manage? Yes.

How? I learned when to say “yes”, “no”, and “would you please…”

This wasn’t something that came easy to me when I was diagnosed with MS. I was always a very independent person, offering my help to others. It took a long time to use these words in the right manner and circumstance. After all, we are talking about a change in behavior. Changes in behavior do not happen overnight, but it can happen if you want them to.

For me, it wasn’t a conscientious decision on my part to ask for help, accept help, or set limitations. The mounting of excessive fatigue and other interfering symptoms forced me. If I didn’t succumb to changing my behavior in this way, I would not have survived my MS.

Not only is it essential to me, it’s essential for my friends and family, too. In the beginning, they wanted to help, but were cautious about what to do. So I learned to open my mouth in the correct way. I set the tone: if I am comfortable, they are comfortable. If I tell them what I need (or don’t need), or what to do (or not do), they are glad for it. Everyone benefits.

It was difficult in the beginning for me to say “yes”, “no”, or “would you please…” But once I got started, it got easier.

Here are examples of this week so far:

“OK. You know the rules. Mi casa es su casa. Help yourself to anything you want and clean up after yourself.”

“Would you excuse me, please? I am so tired and need to lie down for awhile.”

“Yes, you can help—could you finish cutting up these veggies? And can someone else take out the garbage?”

“It is SO hot. Would you please get me an ice pack from the freezer—there’s a crowd in the kitchen!”

“Would anyone mind going to the store? We need to get…”

“No. As much as I would like to go, I better not. It’s too hot and I’m too tired. When you are gone, it will give me a great opportunity to sneak into bed and take a nap.”

“Yes, you can run the vacuum for me!”

“No, you guys go ahead and watch the movie—I’ll watch it another time. I’m going to hit the sack early.”

It works beautifully. My family is great–willing to pitch in, and understanding my need to take care of myself. They love to help me, and I love their help and appreciate their understanding.

Gone are the days when I felt that I needed to get up first in the morning to make coffee. Gone are the days when they felt uncomfortable as they watched me struggle trying to fix a meal for them. Gone are they days I felt too proud to ask for help. Gone are the days when they felt intimidated to offer help.

So, do yourself and everyone else a favor: Speak up, nicely. It is a win-win situation.

www.DebbieMS.com

MS Treatments

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“What to Take–What to Do?”

August 6, 2012

There is no cure for MS. But there are options available to treat the symptoms, relapses and the course of the disease.

To keep things simplified, there are three groups of treatments, all with a different purpose: Medications, Corticosteroids, and Disease Modifying Agents.

Medications

These are used to treat the symptoms of MS, and the use can be short or long term. They minimize the intensity or effect of symptoms so the quality of life and daily function is more manageable. Examples include antidepressants for depression, baclofen for spasticity, Ditropan for incontinence and so forth.

Corticosteroids

Corticosteroids (“steroids”)—usually Solu-Medrol and prednisone– are used to reduce the duration and severity of a flare-up (or exacerbation, or attack). The administration of these drugs is high dosage over a short term (3 days to several weeks).

Disease-Modifying Agents (DMA’s)

Disease-modifying agents (also known as DMD’s—disease-modifying drugs) reduce the progression and activity of the disease. The FDA has approved ten of them now, and much research is occurring to continue to find more. Most of them are for folks who have the relapsing-remitting form of MS, or for those who have secondary progressive disease who continue to have relapses. They are given regularly mostly by injection over the long-term.

Most people with MS have used drugs in at least two of these categories. Some work for some people and some don’t work at all for others. If a drug is tried and doesn’t work, then something else can be tried. Every persons responds to drugs differently.

Medications and Corticosteroids have been tried and used for decades. Disease-Modifying Agents started becoming available in the nineties. Today, as I participate in online discussions and forms, it seems that almost everyone with MS is on one of these. Patients are strongly advised to get on one as soon as possible by neurologists, and the MS Society.

But taking DMA’s is a difficult regime. There are side effects, require much monitoring (doctor visits, MRI’s, clinic visits…), and they are expensive. While some folks get financial assistance through the drug companies, being a clinical trial participant, etc. many others pay thousands of dollars annually out-of-pocket.

And then the recent news comes on July 17th that a “Study Suggests That Interferons Did Not Reduce MS Progression”.

WOW! Can this be true? After all those years of injections, tests, office visits, side effects, dollars spent…. Now what? And what should a newly-diagnosed person do now about starting interferons?

I have had MS for 32 years and never took a DMA for various reasons. That is my personal decision. Throughout the years I have taken medications and steroids to help me with both symptoms and relapses. However, I would never tell any one not to take them. That is their personal decision.

So, what should one do about the recent news about interferons?

Whenever I have considered any medication over the years I followed these steps and offer them to you for your own consideration:

1.) Make sure you research the studies thoroughly about a drug before going on one. Do it from a variety of sources. Carefully evaluate the studies behind the drug—number of people involved, length of the study, type of study, etc.

2.) If you are on a drug, are the benefits outweighing the risks?

3.) There is no magic pill or injection to make MS go away. There are many other things someone can do to manage MS effectively to complement any drugs you are taking. This includes health and wellness (exercise, sleep, stress management…) and alternative therapies (massage, yoga, pilates…)

4.) Doctors aren’t always right. Persons with MS know their bodies best and should have the final say.

Take your time with making a decision. A delay of several weeks or months will make little difference in the overall course of your MS.

It’s common sense, your body and your decision.

www.DebbieMS.com