Tag Archives: MS fatigue

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

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

Using Mobility Scooters and Other Assistive Devices

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“Move Forward–not Backward or Not at All!”

One of the National MS Society’s famous phrases is “MS stops people from moving”. Not me! MS may have stopped my legs from moving but it didn’t stop me from moving. And it shouldn’t stop you either.

I never hesitated to use any assistive device and actually sought them out on my own. This is what I say:

Goodbye fatigue and mobility problems. Hello freedom and happiness!

Recently I mentioned to a person with MS that I was getting ready to go do some leisurely shopping at the Mall. She said, “I am so envious that you can go shopping in this heat.” I told her it was time to think about using a scooter. Buy one, rent one, or borrow one.

Through the years, assistive devices have allowed me to be less fatigued, elevating my moods and enabling me to do more. I didn’t overheat as fast since I struggled less in trying to walk. Since I was walking better using the devises, I experienced less muscle and bone stress on my body parts.

Twenty-five years ago when my son was only four years old, I got my first scooter (insurance covered 80% of it). I was still able to walk, but only for short distances. Wanting to keep active, live life and enjoy my son, the scooter enabled me to go to zoos, amusement parks, Disneyworld, shopping malls, etc.

Goodbye danger. Hello safety.

Weakness, poor balance, fatigue, incoordination, foot drop, spasticity…. These symptoms increase your probability of falling and suffering an injury—risking a flare-up and residual damage. Not to mention the pain and inconvenience while you heal if you fall.

Goodbye pride. Hello common sense.

Most people at some in their lives have to use corrective lenses for their vision problems. They don’t think twice about getting them. Eyeglasses are so fashionable these days, and people love the styles and colors available. Others prefer contact lenses instead of glasses for personal reasons; plus, it gives them the ability to have several pair of designer sunglasses to wear.

So what’s the difference if you need to use a device for mobility? In the days when I started using a cane, I had four of them in different colors and styles to match my outfits.

In addition, in today’s world, the stigma of using wheelchairs is going away. The attitude and awareness about using medical devices has changed since the eighties when I first had to use them. People of all ages are often seen in movies and advertising brochures using a wheelchair. You see more people out and about using them. Grocery and retail stores like Target or WalMart have scooters available now for their customers to use. Many places like amusement parks rent wheelchairs and scooters.

Besides, who cares what people think? I do what is best for me. Sometimes I just look at the way people dress, look, and act today….and I should worry about how they look at me?!

And added bonus? People—family and strangers alike—treated me differently when I started using a mobility devise. I looked disabled and received many more offers for help!

A word of caution, however. When you find how relieving it is to use a scooter or wheelchair, never stop your exercise regime. The old saying that “if you don’t use it, you will lose it” has truth to it. I’m a full-time power chair/scooter user, but I still do my daily stretching, balance and strengthening exercises. I use a pool regularly to practice standing and walking—things that I can’t do on land.

So technically, the Society’s phrase is correct in the sense that MS does stop people from moving in the physical sense. But MS shouldn’t stop people from moving forward in life. If you look hard enough, there is a solution to almost everything.

P.S. See my video “Mobility Scooters: Tips on How to Buy” http://youtu.be/TfLtgb2ybb8

www.DebbieMS.com

MS: What is Causing What?

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The “Chicken or the Egg” dilemma

July 2, 2012

The numbness and tingling is spreading.  The muscles are more spastic, stiffer and tighter.  Legs are weaker; coordination and balance are worse.  Walking endurance is lessoned and the fatigue is escalating.

Figuring out what is going on and what to do about it is frustrating and confusing.  And there’s always the chicken-and-the-egg question of trying to figure out what is causing what.  Is my depression (fatigue, etc.) causing a bad day or flareup, or is the bad day/flareup causing the depression (or fatigue, etc.)???

The MS acts.  But wait–or is it reacting?

It’s very easy to blame what the symptoms are doing and how we are feeling on the MS itself.  However, more often than not, the MS is actually reacting to something else.

So how do you know, and what do you do about it?

MS is highly sensitive to an endless list of things, and existing symptoms intensify due to things like:

• weather changes and types of weather (barometer, heat, humidity, storms)
• sickness (colds, allergies…)
• lack of food, water, rest, sleep…
• medication
• stress (temporary physical/emotional/mental, not chronic)
• monthly menses

For example, a fever can immobilize a person with MS.  When the body is cooled down and the fever is gone, the symptoms will subside.  Spending two hours on the phone trying to resolve an insurance problem can escalate fatigue enormously; taking a nap afterward or venting in some way will ease that stress and help calm down those symptoms.

Or, maybe those intensified symptoms are the result of what I refer to as a ‘pay day’.  For example, if I wake up one day feeling great, I might push myself too hard to do extra things.  Then I ‘pay’ for it the next day and can do only half of my normal daily activities.

In situations like these, the worsening of symptoms can last from several hours, to a full day to perhaps several days depending on what the cause is.  Think carefully about things like this relative to recent or that day’s events:  What happened or didn’t happen?  What changed or didn’t change?

When you figure out what the culprit is, it can then be remedied and the symptoms will calm down.  Things go back to their normal state, whatever ‘normal’ is to you. No residual damage.

So when would the MS itself directly cause intensified symptoms or new symptoms that do NOT go away after a few days?  Now we may be talking about an attack, relapse, or flare-up…i.e. when we come out of remission.  It can just happen on its own, but often will be triggered by any major event, such as:

• falls, accidents, sicknesses, infections
• chronic physical, mental or emotional fatigue/stress
• major life occurrences (death, divorce, new baby, abuse…)

In these situations, or in the case when symptoms don’t calm down after a week, when the cold/infection is over, and rest does improve anything, it’s time to put a call into your neurologist to discuss the situation/ask for some help.  The MS may be relapsing and steroids (like Solu-medrol) may be needed to shorten the duration and severity of the relapse.

Over time, being in-tune with your body will help you figure out if it is the chicken or the egg.

www.DebbieMS.com

What is Multiple Sclerosis (MS)?

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April 30, 2012

“The Misunderstood, Ignored, and Forgotten Disease”

I recently asked the question “How do people without MS react to you?” to an MS discussion group I belong to.  Their responses?  The same I have been hearing for decades:  We feel misunderstood, ignored, and forgotten by so many people.

Why do we feel this way? 

First, 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.

Invisible symptoms are difficult to describe, and when we tell someone about them it’s hard for them to understand or empathize.   Sometimes we use examples like “When I walk, it feels like I have a ten-pound weight on my ankle”, “It’s like when your arm falls asleep but never wakes up” or “My hands look normal, but I can’t button buttons.”

When we see these same people again, they forget that we have these symptoms because they are invisible.  If we talk about them, we sound like complainers.  Unless we complain about these things often, who would know we have these problems or that they continue to plague us?  And who wants a complainer around all the time?

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.  So when somebody suggests we need to get out and take our mind off things, they truly don’t understand why a sofa or bed is more desirable to us.

People without MS are often uncomfortable around us because they don’t know what to say or do.  Or because of our moods or a previous bad experience, they are unsure what kind of a response they will receive.  Others just can’t deal with it perhaps because of personal feelings like guilt. Therefore, it is often easier for them to just ignore it.

So, what can we do about it?

We need to be educators, communicators and advocates to everybody, everywhere—beginning with the basic question and a simplified, clear answer.  Forget the boring textbook medical details.  Something like this:

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 (2.5+ million 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 continue and the grieving process never ends.

There are treatments available that slow disease 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.

Peer-to-peer, we understand it, share our stories and how we cope with MS. We count on our peers, close family/friends and MS organizations for knowledge and support to help us manage it during our lifetime.

But we would like more.  We want everyone to know and understand what MS is about, not just be aware of MS being something that people walk for or bike for.  The more people that UNDERSTAND multiple sclerosis, the less we with MS feel we’ll be misunderstood, ignored, and forgotten.

Let’s all get started now:  hand, send or post this article to everyone you know.  Do it today!

www.debbiems.com