Category Archives: Education

Office Visits with your Neurologist

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“Good Advice for Being Prepared”

December 10, 2012

Not having enough time with your neurologist or feeling that you didn’t get your questions answered is a common complaint by patients today. Often we blame the doctor and his/her office but there is the other side of the story—the doctor’s!

Be Prepared!: How to make the most of office time with your neurologist… is an article worth reading. Written by Avitzur, Orly M.D., M.B.A., it was printed in the current issue of Neurology Now—the American Academy of Neurologists Magazine for Patients and Caregivers.   http://bit.ly/QSp1uH  I’m taking the liberty of sharing this via by blog, since you are my friends I am given the option by them to share this with my friends :).

Finding a neurologist that you are comfortable with, one having high credentials/reviews, and one that has a specialty in your particular chronic condition is essential. After you read this article, ask yourself: do you do this before your visit, and does the doctor respond in the way this doctor suggests?

For those of you not familiar with the magazine Neurology Now, you take a look at it online and subscribe to it for free. While it addresses many neurological disorders, I have found useful information relating to multiple sclerosis for myself. And other things like Parkinson’s disease that my friends have…

www.DebbieMS.com

Managing MS: Straight Talk…

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“Why Read This Book?”

There are many books about multiple sclerosis. If you want or need to read something about this neurological disorder, I’m going to explain why Managing MS: Straight Talk From a 31-Year Survivor is THE book you should read.

I will give you my pitch that my book is unique because of its presentation, content, creditability and tone:

• MS is complicated to understand. I make it easy to understand using a “what to know—what to do” format for a wide array of subjects like symptoms, treatments, interpersonal relationships…

• It’s short, inspiring, and interesting. People who have read it so far are amazed at what they learned in the short span of only several hours it takes it read. Wonderful reviews have been received from a wide range of readers.

• People are afraid of MS. Even the sound of “multiple sclerosis” is chilling. A main objective when I wrote the book was to help reduce the fear of living with MS, no matter if you have it or not. I felt it crucial to use a tone, words and expressions that would enable the reader to feel comfortable. I clear up misconceptions about this disorder.

• Managing MS is accurate. Information and resources contained within have been endorsed by a variety of health care professionals, including one of the best neurologists (MS Specialist) in Phoenix, AZ.

• I am a peer. I lived the major part of my adult life with MS and survived it. This book is not a story about me, although I do share personal experiences to explain things. It is a guidebook incorporating my experiences with thousands of people I interacted with over 25 years. I have been and continue to be a volunteer, educator, counselor, and researcher in the MS community.

• It’s affordable/ available in all formats. Even if you pick up a few tips, it’s worth it.

• There is information that is useful to those living with other chronic diseases, such as how to handle fatigue, doctors, or interpersonal relationships.

I invite you to visit my website www.DebbieMS.com  that gives much information about me, my credentials and Managing MS: Straight Talk From a 31-Year Survivor. It also includes self-help videos, weekly articles I write, other activities I engage in to help persons dealing with MS, and an email address where questions can be submitted to me. Here are some quick links within my site:

• A profile The National Multiple Sclerosis Society posted on their website this summer. http://nationalmssociety.org/online-community/personal-stories/debbie-petrina/index.aspx

• A book trailer I recently created myself http://www.youtube.com/watch?v=4X0YErTxXbM&feature=youtu.be

• Orange Awareness Campaign for MS I created and launched (this is fun!) http://www.youtube.com/watch?v=JtMjKXP4dQU&feature=plcp

• A “Meet-the-Author” video at the bottom of the Home page on my website that discusses many aspects of MS, not just the book.  Great for “newbies.” www.DebbieMS.com

I want to emphasize that this book is about managing MS. There are many things a MSer can do to manage and control (yes, control!) both the symptoms and the course of their disease, both with and without medications. But this all takes knowledge, support, work, dedication and discipline. There is no magic pill or injection that will manage, fix or control MS. Not yet.

So if you are looking for a book about multiple sclerosis that is an autobiography, full of specific medical terminology, or containing the latest breakthrough drug or study, this is not that type of book.

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

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

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

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

World MS Day on May 30, 2012

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Spreading the word: What is Multiple Sclerosis?

May 28, 2012

Many MS organizations and people are doing something for World MS day on Wednesday, and the question “What are you doing?” is asked of us in order to spread the word about MS awareness.

So I’m sending out this article about “What is MS?” to all my friends/contacts via all my online platforms and asking them to forward it on to everybody they are friends with online. I think people need to know what MS is, not just be aware of it.

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. The onset is usually from 20-50 years of age and most victims will have some form of progressive disability over time. 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? Each case is different. 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; research continues to someday conquer these.

In the meantime, there are many things one can do to manage MS as effectively as possible, and find support to remain hopeful in stopping MS.

Please spread the word and pass this on. Thank you!
www.DebbieMS.com