Tag Archives: Chronic illinesses

Does the Doctor Really Know What’s Best for You?

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“It’s your choice.”

June 18, 2013

I have seen doctors for almost all of the forty years of my adult life, and this is what I learned:

While I need to have doctors in my life as I deal with MS, I ultimately know what is best for me to do—not my doctors. I know my body and I will always make the final decision relative to how I want to be treated by a doctor. My doctors are there for support, knowledge, prescriptions, consultation and referrals. If I believe I am not getting from a doctor what I (or my insurance) is paying for, I will fire him/her.

It is a viewpoint other older MS veterans have shared with me.

Many MS specialist-neurologists are experts—they have seen numerous patients and are trained with knowledge. But I am an expert too, with a lot of common sense. I have talked with numerous people dealing with MS (both patients and professionals), and constantly research information about my disorder.

Each case of MS is different with regard to disability, rate and duration of relapses/progression, symptoms, response to medications and treatments, etc. It is a fact that that no two cases are alike. I believe I know my body best in terms of how I feel and how my body acts/reacts; this is information that I must note and share with my doctor.

I live with MS, monitoring and documenting many things regarding my own case, 24/7 every day–symptoms, side effects, triggers… A doctor looks at my case and evaluates me for only about fifteen minutes every 6-12 months. As one recent MSer complained to me, “I just wish a doctor would listen to my symptoms and not just do their little neurological test of pinch here, pock here and say nothing wrong here. This sucks.”

Recently, I spoke with a person with MS who was complaining how bad MS had been affecting her cognitive abilities. During the discussion, I learned the doctor prescribed her a sleeping pill, an anxiety pill, and a pain pill—all at the same time!! It was no wonder why her mental faculties were impaired. Where’s the common sense here?

Other patients receive scripts to treat two or three things at one time with no instruction to start them at different intervals. How would someone know what is affecting what, positively or negatively?

Since I am not on a DMD treatment, I choose not to get MRI’s. Personally, I don’t care how many lesions I have or how big they are because that by itself isn’t always reliable in terms of what to take, do, or how bad I am. For me, going for an MRI every six months is a waste of my time and money. But that is my choice and my decision.

And doctors are not always right. Doctors make mistakes or poor decisions as well. Maybe they are having a bad day, are overloaded, or were given faulty test results. Let’s face it—why do people get second or even third opinions before having major surgery, for example?

Truthfully, I like, need and want my doctors. Doctors have things I don’t have–the ability to write prescriptions, order tests for evaluation, and referrals for things like therapy or specialists. I use them to get these things. Also, I really do want to listen to their expertise and judgment, and consult with them about any course of action.

Now I do not have major cognitive issues that interfere with my judgment. But there have been times when I was distraught with anxiety or depression and I felt I didn’t want to make a decision alone. I asked the doctor if he was in my shoes, “What would you do?” I have enough trust in my primary professionals to follow their advice. In these situations, I also have a close family member or friend with me to listen and help evaluate the circumstances. Teamwork is good.

When I choose a doctor, I find one that has very high ratings and one that I am compatible with. It enhances my confidence when I make my final decision about a course of action.

I have been blessed to have two MS specialist-neurologists in two different states that were both opened-minded and respected my personal choices. They talked with me, not at me or down to me. They also recognize that I am the one living with MS and know my body best. However, “Two heads are always better than one” when evaluating anything, so I am open minded as well. And throughout the years, there were certainly good reasons to see and confer with my doctors.

So choose your doctor and your course of action wisely.

www.DebbieMS.com

 

Attitude is Everything

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“Taking Control of Yourself”

January 23, 2013

I was in the process of writing an article about the ramifications of mental and emotional health when living with a chronic illness like MS, when I came across the following post today while perusing an MS connection online site. It is so incredibly good I am taking the liberty of sharing it to others I know with MS.

“Hi everyone, I have been away from this site for a long time. Just recently got back on. When I first found the site I was looking for help with my MS. Received really good advice then didn’t come back regularly as I should have.

I have learned a lot in the last 7 months. I believe in “pay forward” so I wish to share this with you. I hope it helps and doesn’t insult anyone. The bottom line is I am in control of what I choose to do and not to do, remember this throughout this message.

I have had a multitude of symptoms. Number one is DEPRESSION! I believe this is the cornerstone to a lot of my choosing not to do. I have done mental health therapy with a counselor, PT and OT. Through all of this I became educated. Now I am realizing that I chose to stay in my poor me syndrome. I was so sick of doctor appointments, running constantly which cause me to be exhausted and frustrated because no one could fix me.

I hate the cognitive fog, forgetfulness, physical limitations, sexual dysfunction, tremors, pain, confusion; I hated every part of MS and what it has done to me. I missed the old me and desperately wanted to be fixed without having to work so damn hard to try to get back to the old me. My neurologist told me “change your attitude and you will feel better”. I was pissed off to say the least. It has been 2 months since I have seen him, and I now know he is right. I am in control of my attitude.

My depression was preventing me from living, and I chose to stay this way in misery. We increased my depression meds and I slowly began to change my attitude, which is very challenging with the unpredictability of MS.

I am trying to laugh alot more and trying to adapt to my challenges. Helping myself get enough sleep, drinking fluids, getting educated, another words helping myself. There are days I eat the wrong foods, drink too much caffeine, smoke too much (still working on this need to quit) and those days I know I have myself to thank for how crappy I feel. Exercise is very helpful mentally and physically. I wouldn’t exercise because I couldn’t do what I used to do, so I chose not to do it. This only hurts me more.

So I guess what I want to tell you all, is look deep into yourselves and do a personal inventory. I had to realize I can’t be fixed. No cure for MS. Accept this. Then change your attitude from can’t do to I can do. Find the laughter! As hard as it is to do, acknowledge we are not who we were before MS. We are trapped in this auto immune, unpredictable disease. Say this totally sucks. Then move on. Start over building the new you. Challenge yourself to be the best you can be each moment, acknowledge your success and failure. If you fail, look at the reason why, did you bring this on yourself? Sometimes we cause the situation, other times it’s just the MS. If the latter is the cause, move on; adjust then if you can laugh through it. But you have to move past it.

I type these words and know some of you won’t get it and maybe it will help some of you. I chose not to do a lot; I needed to wallow through the misery of MS. I will have bad days, and if I chose to stay there, this is my choice. I can’t imagine anyone not being depressed with a diagnosis of MS. It’s so devastating. I remember when I was diagnosed I thought “oh thank God I’m not crazy”; there was a reason for what was happening to me. But then I allowed the MS to make me crazy by wanting to be fixed and have all this crap go away. Well it doesn’t and everyday is a new day and full of challenges and ups and downs.

Also, how many times have we heard stress will exacerbate our symptoms, “try to avoid stress”? OMG! Are you kidding me? Ladies and Gents life is not stress free nor is it avoidable. The key to success is how you handle the stress, not how do you avoid it. I mean really you have this incurable disease that has robbed you, this is stressful.

I have a new attitude (most of the time) about stress. It is what it is. I look at stress and think how does this really affect me? I can allow myself to get all wrapped up in the drama, or I can meet it head on, fix it or forget it. If you can end the drama, do it. Set the boundaries. Don’t allow others to suck you into things that really don’t affect you. Shelter yourselves from the unnecessary drama. This only zaps your energy and well being. You need to protect yourself. Stress is like infectious bacteria that want to invade you and make you sick.

Set boundaries, make them know and put up your shield. Some people may think you are being mean or uncaring. So be it. I know what I need to do to keep myself upright and moving forward. If they can’t accept this, then I guess they are not ready to accept me for who I have to be. I can help them but only if they don’t suck me into the stress and drama.

You need to see things in black and white at first, don’t allow a gray area. As I learn more about me and what I can tolerate, I may be able to not have such a strong force field around me. But for now this is what I need to do for me. This saves my energy for the moments I have to really deal with big stressors that take me by surprise. Then when I have those stressful times, I can take a realistic approach to how to not allow it to make me sick. I can think clearer and reset the boundaries for each “big” stressful situation. May the force be with you all!

I hope this rambling helps most who read it. Some of you may think I am nuts (sometimes I am but my counselor assures me I am not crazy). The bottom line is take care of yourself first, everyone else comes after you. You need to find your “new” self and set realistic goal and boundaries and make them known. Say them out loud for loved ones to hear and understand. Ask for help, but don’t ask everyone to do everything for you. Rise to the challenge and find the “new you”. I never thought I would say this, but MS has helped me to see how the old me really wasn’t all that healthy mentally or physically. The new me will be a new and improved, just slower but I have a better outlook today than yesterday and for that I am grateful.

Best wishes to you all! Your friend in MS, Michele”

No Michele—you are not rambling and you are not nuts. You are an incredible inspiration. There is a sign in my doctor’s office that reads “Attitude is everything—Pick a good one!” I love yours and the next time I get down in the dumps and have trouble getting out of it, I will read your post. I give it a AAA+ grade, for An Awesome Attitude.

There is no mystery that people with positive attitudes are happier, live longer, and are stronger.

Thank you.

www.DebbieMS.com

Give a Gift of Knowledge & Support

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“A Holiday Stocking Stuffer”

November 26, 2012

Every week I write an article with substance for persons dealing with multiple sclerosis. As the holiday season is upon us, this week’s article is about giving a gift of substance to someone or even to yourself. Like a good book about a serious illness.

I wrote my book, Managing MS: Straight Talk From a Thirty-One Year Survivor, to help others dealing with MS. But Managing MS also has many chapters suitable for persons dealing with other chronic illnesses/autoimmune diseases, or for people in general who want to learn about something new.

This upbeat self-help guide is a knowledge and support tool. Acquiring more knowledge and support about something that is unknown will result in less fear, mystery and misconceptions about it. Packed with information and inspiration, Managing MS will leave the reader feeling both good and grateful in addition to the knowledge acquired– whether one does, or does not, have a serious illness or disease.

Many have told me it is a book of substance. Recently, a man approached me when I was volunteering at an MS Walk, and said he came for the purpose of meeting me. He read my book and wanted to thank me in person and sign it for him. Diagnosed just a year ago, he said it changed both his and his family’s lives. The entire staff of my PCP’s office read the book, and my PCP bought copies to give to a MS patient that would come in for an office visit.

It is a short, easy read of less than 150 pages (with resources) that would make a great stocking stuffer.

BUT…If my book is not of interest, get a book—any meaningful, inspiring book—that will give knowledge and support of a subject. It will be a worthwhile gift and a great stocking stuffer.

After all, ‘tis the season of sharing, giving, helping and hope. 🙂

www.DebbieMS.com
Book trailer    http://debbiems.com/book_278.html

Giving Thanks to What Really Matters

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“Positive Perspective & Attitude”

November 19, 2012

Recently an MS friend of mine and I were having a chat, and we were talking about how MS has impacted our abilities over the years.   Ah, the value of a peer to share with…

Being an optimist, I said there is a silver lining in everything.  If it wasn’t for me having MS, I would have never met the truly wonderful friends I have today or the beautiful people I met during the major part of my life.  Good friends are priceless, and I am so grateful to have them.

I would never have met them if I didn’t engage myself in the world of being a volunteer.  Volunteers are special people.  They give of themselves and ask for nothing in return.  They are there when you need them, smiling.  That is priceless, and there ARE free things in life.  I would never have survived MS because of their support, and will be ever grateful to them.

Sure, I have my boatload of problems due to the MS.  Just like others who have problems with cancer, special needs children, loss of limbs because of a war… Life is not equal for everyone, and things surly can be a lot worse.  I’ve lived through many major-life crises not related to MS—deaths, job losses, melanoma—but I always came through them.  I give myself time to grieve, vent and complain; then establish my priorities and focus on what really matters.

Sometimes I make a list of what I have to be thankful for, and it is very long.

Things like these keep me optimistic and having a good attitude.  Without a good attitude and a positive perspective, I would have shriveled up long ago; like a flower that would die without sun and water.

So before this Thursday, make that list, and thank everyone that has helped you in some way.  It will make you feel good.

Happy Thanksgiving!

www.DebbieMS.com

 

 

 

Serious Effects of Getting Sick for MS/Autoimmune Disease Patients

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The season of colds, flus and viruses is upon us. For normal people, getting one of these is no fun, but they soon get well and life goes on. For those of us with multiple sclerosis, an autoimmune disease, these sicknesses are detrimental to our overall health.

 


What to Know

1. When a person with an autoimmune disease gets sick, those fighter T-cells from the immune system get to work to combat the invading bacteria or virus. Unfortunately those cells goof up on the job and attack the body instead of the real villains. For multiple sclerosis, the central nervous system is attacked; for patients of rheumatoid arthritis, the joints are attacked; for lupus, the body’s organs are attacked, and so forth.

For a person with MS, the attack means that inflammation in the nervous system will likely occur, causing present MS symptoms to worsen and perhaps causing new symptoms to appear. The probability of a relapse is high, often followed by residual damage to one or more areas of the CNS.

To make matters worse, because the immune system isn’t working properly, recovery time is extended. A normal person may recover from a cold in five days; recovery for a person with MS or an autoimmune disease may take up to ten days or even longer.

2. Drugs taken to treat MS (DMT’s) suppress the immune system. Corticosteroids used to treat MS relapses also suppress the immune system. These have a dual purpose: to suppress the immune system to avoid releasing the T-fighter cells and to reduce the inflammation that an attack ultimately causes. During an MS relapse, steroids (Solu-medrol, predisone…) are usually prescribed in high doses to quickly remedy these two problems. The downside to these benefits is that the person is left highly vulnerable to getting sick or infected because the immune system is suppressed.

Another example is an MS treatment available called Acthar. It is an option to treat MS relapses and inflammation differently from steroids; however, like steroids it suppresses the immune system and increases the chances of getting infections and illnesses.

3. Depression, anxiety and fatigue are common symptoms of MS and other diseases/chronic illnesses. Sickness and infections exacerbate these symptoms. As the winter season drags on, these symptoms are often affected even more. A rolling stone gathers moss…

What to Do

1. Take all measures to keep your resistance high and your exposure to infections, colds and viruses low:

• Make sure to get a good night sleep, eat properly, and drink plenty of water to keep the body healthy.  Take vitamins, especially the B’s to boost the immune system.

• Constantly wash hands, don’t share food or drinks, and never put fingers in the mouth, nose or eyes. Take hand sanitizer with you and use it often, such as in a bathroom, after reading magazines or shaking hands with someone. Avoid rubbing your eyes, sharing food, or putting things in your mouth, like a pen. Take your own bottle of water in lieu of drinking from a water fountain.

• Stay away from people with colds or viruses. If someone who wants to get together with you is sick, suggest having a phone chat instead. When it is someone you live or work with, keep your distance from them as much as possible. Put kisses and hugs on hold, and then double up on them when the sickness passes. Teach kids to wash their hands, use the chicken-wing when sneezing, and all of the things listed above.

2. With regard to flu shots, it should be a personal decision regardless of what doctors or researchers advise about shots. Many people choose to use commonsense methods to avoid the flu and don’t want the risk of any side effects from annually developed vaccines on what the ‘new’ strains are expected to be.

3. Check the inserts that come with your medications to learn whether they can effect the immune system.

4. If you have an infection (e.g. sinus), call your doctor for an antibiotic.

5. If you have a virus, try to hang in there and tolerate the MS symptoms until the sickness is over (even if it is causing a relapse/flare-up).

• Again, recovery from a sickness for a MSer is usually longer because of the immune system dysfunction. The waiting can be a real burden on our patience, adding stress. Getting on steroids while ill can cause a longer recovery period while leaving you exposed to getting something else.

• Take extra steps to rest, take care yourself, build the resistance up, and try to recover on your own.

• If you can’t hang in there, consult with your doctor about a course of action. While colds, flus and viruses cannot be treated with antibiotics, the symptoms of these sicknesses can be treated for comfort (example: a decongestant or cough suppressant).

6. If the cold/sickness is over and the MS symptoms stay intensified afterwards, then call the doctor to discuss steroids because at this point the MS is probably active.

7. Remember that heat has an adverse effect on many people living with MS. Having a fever that frequently accompanies a virus or flu can significantly intensify MS symptoms. Treat a fever with aspirin or ibuprofen, cool packs, and plenty of water/ice chips to reduce some of the negative impact the sickness is having on your symptoms.

8. Fight the winter doldrums by finding ways to overcome depression and anxiety. Rest often to help with fatigue.

While those suffering from MS or another chronic illness do not have control all of the time, there are things that can be done to have control some of the time. This is one of those times we can help take control.

www.DebbieMS.com
Author/MS Counselor/Living with MS

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

Feet Care, Massage & Reflexology

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“Sole & Soul Therapy”

July 16, 2012

It’s time for a pedicure. I like pretty toes and feet. But I love the therapeutic benefits I get from getting a pedicure.

I never had a pedicure when I lived in Pittsburgh. Shoes were always worn and I thought getting my toes painted was frivolous. Then I moved to Arizona, where the state shoe is a flip flop. That’s lucky for me since I don’t have to wrestle putting on socks and shoes too often. It’s not an easy task for someone who has stiff hands and spastic legs.

Bare feet, also a standard here, also has its benefits besides not having to struggle with footwear. It’s cooler and more comfortable, especially when my feet swell from sitting too long. I can grip the floor better when I stand or take a step or two.

Arizona is a very casual-dressing state; the oppressive desert heat in the summer probably has much to do with it. Yet, most girls and women have their feet all gussied up with color and design—even the sloppiest-looking people.

I like looking nice. Maybe that comes from my upbringing, or Eastern roots. It makes me feel good. I like to match my outfits with my earrings, purse, and footwear when I go out, even if it’s to a grocery store. Finding comfortable and stylish footwear had always been a challenge to me ever since I started having walking problems. It was great when I didn’t have to buy matching footwear anymore, but I still had to have nice-looking feet.

So it didn’t take me long after I settled in to my new home to go to a salon and get a pedicure. That’s when I discovered that a pedicure provides more besides just pretty toes. The therapeutic benefits are enormous.

For me, who has advanced MS, cutting my own toenails and polishing them is quite a challenge. I felt like Dorothy in the Emerald City that first day sitting in a massaging chair, as I watched the gal carefully scrub the bottom of my feet. It was embarrassing that my big toes were stiff like two soldiers when she got started, but she told me to just sit back and relax.

And wow, did I ever! As she cleaned and clipped, I became immersed in the chatter going on in the shop. It was fun looking at what everyone else was choosing to do with their nails—the colors, designs, and sparkles. It was a great escape and mood elevator. Where have I been all these years?

After the girl cleaned up my feet and nails, she asked if I wanted extra massage for my feet. I giggled and said “Go for it!” That is when my eyes really opened wide. I couldn’t believe how good it felt as she skillfully massaged ever toe, every part of my foot, ankles and shins. My stiff, soldier-toes were gone, my feet were aligned perfectly–not inward–and my whole body was relaxed and rejuvenated.

What was going on? Where did my back, feet and shoulder pain go? I knew how beneficial a regular body massage was for my sore neck, shoulder and back muscles, but I never expected in a million years what a foot massage would do for me.

I started researching on the internet and found out that I wasn’t getting just a foot massage; I was actually getting reflexology. I was (and still am) going to a Vietnamese-run shop where the girls were trained to do this. I just didn’t know it because of the language gap—they speak very little English.

The foot has more than 7,200 nerve endings that connect to specific organs, according to the Reflexology Association of America. The top of the foot corresponds to the chest, the Achilles corresponds to the side of the hip, and the big toe links to the brain. Massage and reflexology techniques bring comfort and restore proper nerve flow. Hm– is this the reason why my big toes weren’t standing at attention anymore?

It is a form of alternative medicine. It doesn’t reduce my need for baclofen that I take for spasticity, but it definitely helps my spasticity and is a complementary approach for my bothersome MS symptoms.

I wish I could get a pedicure every week, but our budget won’t allow it. And unfortunately, other forms of alternative medicine such as massage, acupuncture, or yoga are not covered by insurance. But I consider it enough of a necessity to get one (with massage/reflexology) once a month. Fortunately, the shop where I go only charges $25 (plus tip). And gift certificates for birthdays and Christmas are always appreciated.

Relaxation, good company, energized well-being, less pain and pretty toes–all for $25-30 and an hour of time. I think it is a great bang for the buck.

P.S. I should mention that although the shop is filled mostly with women, it’s not unusual to see a guy or two in there as well :).

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

New Beginnings in Life

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“Entering the Unknown”

May 14, 2012

I ran into my neighbor’s son yesterday and he told me that he was graduating from high school.  When I asked him if he was excited about going to the university, he admitted he was nervous.  It is out-of-state and he will know nobody.

The fear of the unknown.

As we journey through our years of life, we have many new beginnings that we will encounter, some big and some small.  Some we choose and some we don’t. Our first day of kindergarten, our first kiss, our first menses.  Our first fender-bender, marriage, house, baby and loss of a job or loved one…. The diagnosis of a disease or serious illness.   At first, we don’t know where to start or what to expect with each of these new beginnings.

Some things turn out easier than expected, and some end up being more difficult.  Many things happen to us that are unpredictable and out of our control.  We need help to figure things out, find it through a variety of means, and most of the time we learn how to manage.

As we proceed, the unknown becomes more known and the fear becomes less fearful.

A huge new beginning in my life was the onset of multiple sclerosis in 1980.  Anyone dealing with MS knows it requires constant learning and adjusting to new obstacles, lifestyles, and goals.  This incurable, complicated, and unpredictable neurological disease is a full-time job with many new beginnings in itself and lots of unknowns to face.

But I learned the ropes in managing it so that I could enjoy life, despite the setbacks.  Along the way I also had to achieve other things in life, such as motherhood, career changes, moving across the country and having to live on my own for three years while in a wheelchair.

Now I am involved with another new beginning. I chose to become an author and write a book.  Recently published, I wrote Managing MS: Straight Talk from a Thirty-One-Year Survivor for the primary goal of helping persons dealing with multiple sclerosis.  I get up close and personal when I share my experiences and expertise from my own life’s journey in this handbook.

Once again, this new frontier to explore has been a big challenge. The world of publishing and marketing books has changed drastically in recent years because of social media.  I’m slowly transforming from a dinosaur to a new chick in this technological arena and it hasn’t been easy.

Though frustrating, I’m not afraid of the unknown anymore.  I will read, experiment, and ask for help when needed in learning how to accomplish my mission.

I so desperately want to succeed, but I’ve also learned to be patient and just do my best.  Life has taught me this, particularly a life living with MS.

www.debbiems.com