An MS Journey

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“A Picture of Health on the Outside”

I was only 25 in 1980 when my MS symptoms started. My career was taking off, I was newly married, and my husband and I were active outdoors doing things like skiing and dirt bike riding. Life was good. But like all newly-diagnosed people with MS, the fear of having the rest of my life ahead of me with a chronic, debilitating, progressive disease with no cure was frightening to say the least.

What kind of life could I expect?

Flash forward to present day, 35 years later. Life has been good despite the challenges of living with MS while also dealing with other challenges in life that “normal” people endure. Adjustments to changes in my life seemed constant, as my MS Blogger Buddy Nicole Lemelle would say, would become “My New Normal.” And I’m currently facing two more…

Truthfully, I hate MS—it’s interfering, unpredictable, and invisible in so many ways. I didn’t have a choice about getting it, but I did have a choice about whether I was going to let it control me or manage my life. It took time, but I learned to manage my MS well. It helped that I am a positive person with an “I can do this” attitude.

Difficult decisions had to be made—giving up my career, having only one child, going on disability, having to move out of my house… It was hard. But amazingly for me, in the end each difficult decision resulted in a good outcome.

I can honestly say that I have, and will continue to have a fulfilling  life with my husband of thirty-seven years and my 32-year old son. Not only have I been an avid swimmer, crafter, and reader for as long as I can remember, my love of history and nature was satisfied after visiting all fifty States, seven countries in Europe, Canada, Mexico and the Caribbean. Many of these trips I made in a wheelchair.

As I journeyed through motherhood, I enjoyed being a soccer mom, wrestling mom, homeroom mother, and a volunteer in my son’s school, church and community. In-between, I learned Spanish and tutored high-schoolers for fifteen years. And I was involved as a volunteer and in other roles in the MS community for the past thirty years. I’m proud to say I authored a book, Managing MS: Straight-Talk…  published in January 2012, and since then learned social media and built a website through which I have interacted within the MS community since.

I have always practiced health and wellness as a critical component of managing my MS and chose my medications carefully. Good sleep, regular fitness, healthy diet choices, stress management… Recently at my annual physical, my doctor said to me “I have good news and I have bad news.”

The good news? Out of all her patients that day, I was the healthiest– perfect scores on all my tests: blood pressure, weight, cholesterol, pulse, circulation, Vitamin D, calcium, and all the other things that are measured when blood is checked.

The bad news? I have severe osteoporosis in my hips and osteopenia in my spine—the worse she has ever seen. I had most of the risk factors for it: genetics, years of steroids, being thin, post-menopausal, and little weight-bearing fitness due to being in a wheelchair for fifteen years. The first of two new adjustments that I have to research and work on. This is serious stuff.

When you look at that picture of me, it is a definite portrayal of that old expression that makes all of us with MS cringe: “But you look so good!” You can’t see the osteoporosis, just like you can’t see so many of my MS symptoms. Though I use a scooter or wheelchair because I can’t walk anymore, many folks have asked me if I had an accident. They can’t see the pain, the numbness, weakness, the bladder/bowel problems, or the fatigue and emotional issues that I live with daily.

And now that the new ridiculous TV commercial about Tecfidera is airing, people are getting the misconception that there is a pill—a cure—that Relapsing/Remitting MSers can take that will give them the ability to be active and normal all day long. What a hurtful setback for me and all of the other MS patients that have been trying so hard to get people to understand what MS really is all about.

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                                                     Shame on you, Biogen.

I don’t know. At first I thought that no awareness was better than misleading awareness, but maybe this commercial will stir up the pot and get people talking more about MS.

 

Throughout my entire life, I have always been a doer and a helper with some purpose to serve. Even in the toughest spells throughout my life due to MS or something else, I forged forward to reach out. However, I’ve reached the point where I’m so tired and I hurt almost all the time now. I have been wrestling with this question for a while, “Is it time to quit?” That means the second, big adjustment into unknown territory—true retirement.

 

Actually, I won’t let go of everything completely; I will share and care about MS on a limited basis through my social media sites. But I’ll let the MS blogging be carried on by great, credible others that I got the privilege of knowing from social media and attendance to a MS Blogger Summit sponsored by EMD-Serono/Pfizer:

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MS Bloggers and some Significant-Other Caretakers

   (Sitting, L to R)
Laura Kolaczkowski
Lisa Emrich
Nicole Lemelle,
Lisa Dasis
Yvonne Desousa
Debbie Petrina
(Standing, L to R)
Jon Chandonnet
David Lyons
Stuart Schlossman
Dave Bexfield

There are other great MS bloggers around too, such as those on Multiple Sclerosis.net, that can be trusted to obtain quality MS info, inspiration and education.

Living with MS for 35 years and being involved with the MS community in so many ways teaches a person a lot of things. This is the last page of my practical MS guide book Managing MS: Straight Talk From a 31-Year Survivor that I published in January 2012:

Final Words of Inspiration

September 28, 2011

Life is precious, challenging, and worth getting out of it what you can.
Being a lover of American history, one of the items on my bucket list was to visit the actual trail of the Lewis & Clark expedition. I just returned from an RV road trip with my husband and brother to do this. During the trip, I reflected on the similarities of their journey and life with MS.

When Lewis & Clark began their journey to the Pacific Ocean across the continent, they went into unknown territory. Daily they encountered obstacles in the wilderness they had to overcome, and had to rely heavily on the support of each other/ strangers, their skills, ingenuity, and creativity in order to survive and prevail. The team of thirty-three persons suffered; one died. They experimented. They documented. They learned. They managed and accomplished incredible hardships. There were moments of the deep despair and defeat, and moments of high joy and success.

They found their way. I found my way. You will find your way.

                                                                                       Debbie

www.DebbieMS.com 
Author, MS Counselor/Consultant

 

*Image courtesy of “rakratchada torsap” portfolio at Free DigitalPhotos.net

Why MS Doesn’t Scare Me Anymore

“Overcoming Fear”

January 11, 2015

Fear can be paralyzing. It interferes or overtakes one’s thoughts and actions. Fear causes immense stress. People with MS are confronted with it before, during and after diagnosis constantly. After all, there is no cure for MS, no two cases are alike, and it is highly unpredictable in its course.

To make matters worse, fear is intensified by what is read or said by others, health professionals and social media. The fear of ending up in a wheelchair or becoming very mobility impaired; the fear of losing cognitive abilities, the fear of losing employment or becoming incapacitated….

Even MS Associations who try to portray MS in a positive light often unintentionally create fear due to their messages of “get on a treatment ASAP” or “you need to call your doctor…” Lately, all of the emphasis on cognitive issues causes misconceptions that losing one’s mental faculties is inevitable; or a memory problem such as brain fog is due to MS.

I lived with that fear of the unknown, and with the thoughts of the many “what-if scenarios.” After my first ten years of living with MS, I didn’t fear it anymore; and I still don’t.

Why not?

• As time went, I realized that the more knowledge and experience I gained, the less fear I had. I got to know my body relative to my own MS patterns and responses, adjusted my lifestyle, and learned how to manage both my MS and my personal life. I felt more in control of my MS; the more control I acquired, the less fear I had. Yes—MS is a manageable disease.

The most common triggers of MS symptoms are stress, fatigue, and temperature/weather changes. Learning how to manage these triggers usually settle the symptoms down and prevent a relapse. By not managing them, they will become chronic which will lead to a flare/relapse.

• Research taught me that statistics were on my side. Here are some major fears, with research to show that they are not as bad as many think:

**It is estimated that 40-50% of people with MS experience mild to moderate impairment; severe cognitive decline like dementia are extremely rare (source: MSIF.org). Check out this MS post—“Are Cognitive Problems Blamed Too Much on MS?”

** Over a lifetime, only 20-25% end up confined to a wheelchair. That was the statistic in 1980, and it probably is less today due to the development of the disease-modifying drugs that have been available since the mid-90’s.” Check out this post “The Truth about MS and Wheelchairs”

**There are more benign cases of MS than publicized. For example, a current starting point is to get specific data on DMT’s from reliable sources. On Page 13 of “The Use of Disease-Modifying Therapies in MS: Principles and Current Evidence” (The MS Coalition– http://bit.ly/1oEnTqY ), the colleagues point out that 50% of persons diagnosed will have “benign MS”. People with benign MS will have an Expanded Disability Status Score (EDSS) 6 and 23% had converted to SPMS.
Read closely, and always double-check hear-say. Another post to read–“Where and how to get your information.”

• Reaching out and accepting support from family, friends and the MS community helps immensely in minimizing stress. My physical, mental and emotional states were significantly improved. I wasn’t alone. Those that really want to help—let them and tell them how.

• Having a focus on overall wellness and health is a priority. When one feels better physically, one will also feel better emotionally and mentally. It is common sense but it’s amazing how many people lose sight of this. In addition, I take all measures to prevent flus, colds, sickness and injuries. These will lead to relapses, thus frequently resulting in MS progression.

• The advancements in research for treatments and a cure have been increasing exponentially. It WILL happen in your lifetime.

• The brain is a powerful organ, and it is gratifying that brain health is finally being addressed. The brain CAN be retrained and repair itself to a certain degree. I had symptoms for years that I no longer have.

I’m an ol’ MS vet, and there are many of us out there. We are folks who have lived and survived MS well for decades, and most would agree with what I just wrote. We know, and we are a positive group. And more positivity will also reduce fear.

It took me ten years to get over my fear of having MS; nowadays, that span of time should be much shorter. After all, it was still the dark ages for both MS and me between 1980 and 1990. Times have changed.

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

Explaining MS Fatigue

November 6, 2014

Ninety percent of patients with MS suffer with fatigue. Fatigue is an extremely debilitating MS symptom and difficult to manage.

MS fatigue is more than being tired from a lack of sleep or a very busy day. It is a direct result of the disease itself, and is easily intensified by the other MS symptoms (such as extra energy required to walk), external factors (such as heat or dehydration), and health issues (such as colds/viruses, being overweight…).

Being an invisible symptom, fatigue is hard for people without MS to be aware of it, understand it, and realize the severe limitations it can impose on MSers.
I started an MS group discussion on LinkIn entitled “How do/would you explain your MS fatigue to people to try to make them understand it?” Over fifty comments were received to date, and here are some of the comments:

“I tell people that it is like the exhaustion you get when you have the flu- only multiplied by 20 and NEVER goes away…”

“I heard it explained once and it seemed exactly right. MS fatigue is using every ounce of energy in your body just to breathe.”

“Add 5 lbs. weights to both biceps, forearms, calves, thighs…etc.”

“There is no way to explain it properly. Everyone still thinks it’s just plain tiredness. They don’t get that fatigue is totally different. I once said “when I am fatigued and am in bed, sometimes I feel that peeing the bed is my only option.”

“I ask them to imagine they are coming down with a flu/cold, then recall how tired they are.”

“There is no explaining to others why my body needs to sleep when I have only been awake a short bit.”

“I liken it to hitting a brick wall so hard that you don’t bounce back but instead just slide to the ground and not able to pick myself back up.”

“People just don’t ‘get’ the difference between extreme fatigue and general tiredness – some think they are feeling the same as you are but they don’t know the half of it!!”

“Thank you guys so much for this discussion! I hear all the time “Well, I have trouble sleeping too… maybe you should just go to bed earlier.”Errrrgh! It’s not like that people!

“I tell them that my best day fatigued (tired) is like their worst day. Then they seem to get it.”

The truth is, most people don’t get it. But the upside is that our neurologists and peers DO get it, and that’s where we can get our comfort. And fortunately, fatigue is a symptom that is finally recognized by Social Security when applying for disability benefits.

For those that don’t get it, you can try handing them a copy of this post or a previous post of mine entitled “Fatigue and MS”. It never hurts to try.

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

Where and How to get Your MS Information

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                                                  “Tips and Cautions”

The upside of the internet and social media is that mounds of information about MS are available immediately with the stroke of a few keys and searches. Folks need as much knowledge that they can get to help them understand and handle this complicated disease.

The downside of the net–besides being overwhelming–is that one has to be very careful with the validity of the source and information of what is read. I read discussions between MSers on Facebook, other social media, and MS Association sites and am concerned by how much info is misleading, incorrect, and cause for fear. Bad information causes bad decisions.

1. Understand which treatments/drugs help symptom improvement.

While it is gratifying that DMTs (Disease-Modifying Therapies) are reducing relapses for many MSers, participants in some discussions talk about how their symptoms improved when they were taking a certain DMT.

This is not true. Here is what one MS specialist-neurologist stated:

“The disease modifying medications do not directly help with symptoms in MS. 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.”(see Source #1 below)

Now, there ARE drugs to directly and successfully treat symptoms (e.g. depression, bladder incontinence…), and relapses (e.g. steroids). These often improve symptoms and help a patient feel better, but not alter the disease course or direction of the disease itself.

2. No treatment exists today that will stop the disease activity/progression and damage completely, or reverses it. (see Source #2 below)

Recently, I followed a discussion on FB about stem cell treatments that miraculously accomplished this for them.  Most of the participants that had the procedure were diagnosed within the past two-three years. These participates probably did not know their personal pattern of relapses; it’s not uncommon to lose one’s sight or have impaired mobility for a long stretch of time in their initial relapses. Their recovery was more likely due to the relapse being over and they’re being back into remission with little residual, which is very common in the early years of the disease.

Furthermore, it takes a while for a patient to understand their own case of MS and how their body responds to a variety of things—both medicinal and non-medicinal. Nowadays, it is even more difficult since a newly-diagnosed person during their first couple of years are receiving DMTs and drugs for relapses and symptoms all at the same time. What is doing what?

3. Be careful with reading statistics, study results, etc.

I worked a number of years in my professional jobs doing financial analyses and market research. One of the things I know from that experience is that conclusions of studies can be misleading by what numbers are used and how numbers are presented. I’ve become quite the cynic about this.

For example, one might read “according this study, 50% of patients using XYZ showed a 38% reduction in…” How many people were used in the study, what were their characteristics, how long did they take XYZ, what were their side effects, who did the study, etc. You have to dig deeper, be cautious, use common sense and talk to your professionals when you hear something of interest and want to pursue it (like trying a new medication).

How would you feel if you discovered that a study was based on eight people?

4. When gathering information, consider the following:

• Use common sense and logic.
• If something sounds too good to be true, it probably is.
• Listen to your gut, not what you want to hear.
• There is no cure, and if something says you will be cured, throw it away. You can manage MS and even control it in many ways, but there is no cure yet.

5. What are good Sources of Information?

MS associations and Pharmas are good sources of information that can be trusted for acquiring basic MS knowledge about the disease itself, the symptoms, current research/events that are happening, and treatments that are available. They also can be helpful in providing programs and forums for people dealing with MS to get together and interact.

Where to use caution?

• When listening/reading information that MS associations, Pharmas, and neurologists present statistical information about study/treatment results. They all recommend DMTs as the first line of defense, and one has to be careful of taking this information at face value. Re-read #3 above, and know that numbers/statistics can be arranged to project just about anything. Dig deeper into what you are told. You may be surprised.

For example, a current starting point to get specific data on DMT’s is Source #2 below. And read closely. On Page 13, the colleagues point out that 50% of persons diagnosed will have “benign MS”. People with benign MS will have an Expanded Disability Status Score (EDSS)<3 after 10 years.  After 20 years they found while 51% remained benign, 21% had progressed to EDSS >6 and 23% had converted to SPMS.

The point? Stats like these could help a patient weigh their options more carefully.

• A standard line of advice is “consult with your doctor.” Do you trust your doctor? How experienced is your doctor with MS? Does your doctor listen to you and talk with you, respect your questions and doubts? If the answer is no to any of these, it’s a red flag. Remember that doctors get kickbacks, and truthfully are limited to prescribing drugs and giving referrals. Get second and even third opinions.

• Social media sites are wonderful for sharing information and feelings with other peers, but remember that two-thirds of effective communication is through body language. There is no eye contact, no voice to hear, etc. that can make judgment of people difficult. Learn the background of the people you engage with. If reading an MS blog, make sure it is a credible, respected and experienced person that is doing the writing.

Here is a link to my Resources/Links page on my website that is quite comprehensive, not overwhelming, and judged by many to be trusted http://debbiems.com/links-resources_271.html . (You can check out my background, experience and credentials in other sections of my site.)

(Sources)
#1 The NPR Diane Rehm Show (9/24/2012) 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.

#2 The Use of Disease-Modifying Therapies in Multiple Sclerosis: Principles and Current Evidence http://bit.ly/1oEnTqY  September, 2012

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

Image courtesy of Stuart Miles at FreeDigitalPhotos.net

What MSers Really Need from Others

“The chronically ill, too.”

Even though this post was written for a MS Blog, the following list can apply to supporters of patients who are chronically ill. As an MS patient myself who was trained as a MS peer counselor thirty years ago, I found myself talking with and listening to patients who were chronically ill with something else.

This list is for family, friends, co-workers, health care professionals…i.e. the people we associate with in our lives. While it seems to be simple and just common sense, it is amazing how many folks say the wrong things or don’t even know what to say.*

1. Empathy vs. Sympathy
Most MSers don’t want you to feel sorry for them. They want you to try and understand MS and their symptoms/problems. Visualize putting yourselves in their shoes.

2. Listening vs. Talking
Sometimes MSers like to talk about MS and sometimes they do not. If they wish not to talk or get emotional, do not take it personally or compare them to others. More often than not, they need others to listen to them.

3. Inspiration vs. Reality
Inspiration is vital and wanted. However, there are times when MSers are so sick or fatigued, they don’t want cheerleading, humor, or advice. Give hugs and be sensitive to their feelings.

4. Knowledge and Support
The more accurate knowledge that is obtained from reliable sources, the less fear there will be. The more support that a MSer has from whom they interact with, the easier it will be for them to manage their MS, lives, and adjustments. What kind of support? Just ask the patient, or offer to do something to make their life easier (like make a meal, watch kids, do laundry…).

*Here is a link to view my background/credentials http://debbiems.com/about-debbie_269.html

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

Insurance Companies, Health Care Costs, and the Chronically ill

“The Need to Fight Back”

Medical insurance companies are out of control because they have too much control. The same can be said about pharmaceutical companies and other large health organizations like hospitals.

Getting coverage, keeping coverage, being able to afford coverage are huge headaches for us. We need them and they know it. These greedy companies have tremendous power and resources, leaving us at their mercy. They decline truly needed things that our specialists recommend for us.

A fellow MS Blogger, Dave Bexfield, recently won a claim against a large insurance company that wrongfully denied payment for his life-saving stem cell procedure. http://nyti.ms/1oUQ5ZK  His 4-year persistent battle that included the help of NY Times’ The Haggler finally ended with his victory.

A victory that hopefully will inspire many others to follow his lead and fight for their rights. More people need to do this; there is strength in numbers. We are the buyers of their products; our voices and actions against their wrongdoings as a group can impact their control. Especially if we get our victories publicized by all types of media and large organizations; like Dave’s involvement with the New York Times and his social media bombardment that followed.

Fighting for your rights from insurance companies is hard work, especially when you are ill. It requires a tremendous amount of energy, time, patience and often money; things that people—especially the chronically ill–don’t have much of. The frustration and stress that one endures with the phone calls alone can turn the sanest person insane–long hold waits, dropped calls, rerouted calls, not being able to talk to a person… Most people who take on the fight with these big guns eventually give up; these companies count on it.

Those of us who are truly sick and trying to have quality in our lives are getting doors slammed in our faces for things that could help provide more quality or relief. We pay big bucks for our insurance coverage with our limited incomes that suffer because of our disabilities/illnesses.

Give us the benefits we pay for or are entitled to! Blow the whistle when something is just wrong.

WHAT TO DO?

If your doctor recommends a drug, procedure, equipment, etc., make sure you get it.

An insurance company should NOT be the one who determines what’s best for your health—it should be your doctor and you!

Read your claim statements carefully to make sure they are accurate.

For example, I went into the ER last year for chronic constipation, and my $5,000 invoice was for a coffee enema. It also included a $258 charge for a pregnancy test. I was 58 years old! When I called the hospital about it, the response was “What do you care? Your insurance paid for it.” No–they didn’t pay for it, we end-users did. Well, I reported this incident to Medicare, who ultimately went back to the hospital. I blew the whistle.

Yeah, I had paperwork to fill out and follow-up to do, but it was worth it to screw back the hospital that screwed me.

Make sure you receive a detailed statement.

Some insurance companies don’t even issue detailed statements to patients. My 82-year old mother has an HMO with Cigna in Arizona and gets no paperwork for anything—not even a doctor’s visit. When she bragged about how easy it is not to deal with paperwork, I pointed out that failure of disclosure enables these companies to charge and cheat whom or whatever they want. Undercover fraud.

Take control over what is done, why it is done, etc.

When I was in the hospital last year for a bladder infection, there were so many specialists that came in my room and ordered tests. I demanded to know “why and what for.” These 5-minute doctor drop-ins cost an average of $400 each! The hospital charged $6 for each baclofen that I took, and wouldn’t allow me to bring in my own prescription from home, for the same med that cost 6 cents/pill! I take 5-6 of these per day.

There is something called the “Chargemaster” that hospitals use that is their grand price list for absolutely everything a hospital will charge you for. It is different from hospital to hospital and has no cost basis. Read this eye-opening, special-report article that was published by Time magazine if you are a Time subscriber: “Bitter Pill: Why Medical Bills Are Killing Us” by Steven Brill (March 4, 2013 issue) http://time.com/198/bitter-pill-why-medical-bills-are-killing-us/. It will knock your socks off.

Nursing homes and rehab centers are another area where there is much abuse with a patient’s medical needs and medical costs. My husband and I were caretakers for his grandmother, who spent the last ten years of her life in a nursing home. We took control quickly over all her medical needs when we discovered the who’s, what’s, frequencies and costs of the nursing home’s directives for Grandma’s care. We took over all decisions and we checked the costs incurred for everything, questioning inappropriate charges. And we sadly watched the other patients in the home who didn’t have someone overseeing their care get cheated and over medicated. Check out this AARP article: “Nursing Home Drug Outrage” http://bit.ly/1vxITrz  (Page 12)

 • While preventive medicine has its merits, common sense should prevail.

There are a lot of kickbacks between insurance companies, pharmas, and doctors. I’ll use my mother as an example again. Her doctor sets up a bone density test, pap smear, and mammogram every year. This is for an 82-year old woman who takes her required calcium/Vitamin D and doesn’t have a history breast or cervical cancer in the family??? Check out this article about kickbacks: “Payments to Doctors Revealed” http://bit.ly/1lAZ2pn.

Re: doctors, here is another interesting article: “Medicare Patients Can Now Do a Check-up on Doctors” http://bit.ly/1g9gtL9 . Consumer groups and news outlets have pressured Medicare to release the data for years. Now, Medicare officials said they hope the data will expose fraud, inform consumers and lead to improvements in care.

Everybody complains about the insurance companies and healthcare costs, but are their complaints followed by any actions to turn a wrong into a right? Ask questions and appeal over and over again until you win. Be a gnat on their back. Persistence pays off, like it did for Dave.

I had my own fights over the years with insurance companies over so many things for different types of equipment (like a stair glide) or a procedure (like trigger-point massage). They wouldn’t pay for trigger-point massage that would provide pain relief from spasticity, but they would cover painkillers—additive narcotics that alter cognitive functions and cause constipation. No thank you.

Even though I lost some disputes, I won some too. Here are my favorites:

Thirteen years ago, I sought reimbursement for a $2,400 pool lift for my swimming pool, which was denied. I had been doing aquatic therapy three times a week for twenty years—paying out of my own pocket–and pointed out that an hour of physical therapy that was of lesser benefit to me costs $200/hour. So twelve PT sessions would equal the cost of the lift, and I would have year–round therapy conveniently at my home for years to come. After numerous letters and three appeals, I was scheduled for a meeting with their Board. At the meeting, I had aquatic therapy documentation and representation from my doctor, the MS Society, and family members.

It was finally approved with the caveat that this was clearly an exception and it won’t happen again. Bottom line? We both won. I’ve used my pool for MS therapy an average of 120 times/year over the past thirteen years at my convenience and they saved a lot of bucks. At $200/hr. (probably more now), that equates to $312,000 of PT!!

This year, I won an appeal for a $1200 elevator lift on a new power chair. The lift was considered a luxury add-on, even though as a petite 5’3” person sitting, I couldn’t reach so many things in my house (like the stove and dryer knobs).

Small potatoes for them; big potatoes for me.

There is no question that we all need medical insurance today whether you have an existing medical problem or need protection from a possible future health problem. The exorbitant costs could leave an uninsured person bankrupt and out on the street in no time. With the baby-boomer population aging, our health care will be in real trouble if consumers don’t get involved.

Counting on our self-serving politicians and squabbling Congress won’t get the job done. But we can. Remember the Civil Rights Movement and the Women’s Suffrage Movement?

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

The Optimist and the Pessimist

“Attitude is Everything”


August 6, 2014

I am an optimist. My husband is a pessimist. If I say “wow, the sky is so blue”, he’ll say “I hate the sun, I like it cloudy.”

They say opposites attract but sometimes I don’t know how I have survived 36 years of marriage with a person who is a pessimist.

My husband and I just got back from a mini camping trip in our RV and truthfully, it really was frustrating. It rained constantly for almost the entire trip, so we were confined to stay in the RV. For me, it was cozy listening to the rain while reading a novel and watching movies. For him, he seemed to complain about everything and didn’t even want to play cards with me.

After being in this situation, I started writing a post about why the need to vent from time to time is essential to your health. This morning I was going to finish it when I came across this article about optimism and pessimism in the newspaper. I felt like it was written for me.

This article is so important, I once again decided to postpone my post-in-process and share this. Not only is optimism necessary to survive life, it is necessary to survive MS. Pessimistic people drag you down, something that is not good if you are trying to cope with a chronic illness.

Optimism trumps pessimism in workplace, life

President Harry S. Truman once said, “A pessimist is one who makes difficulties of his opportunities, and an optimist is one who makes opportunities of his difficulties.”

Which do you think will reach their goals, live a happy life and achieve their dreams?

Imagine interviewing two people who have identical skills, but one is always grumbling about how unfair life can be, while the other one talks about what wonderful possibilities exist.

Naturally, you would gravitate toward the optimist. If you choose the pessimist, you would be setting yourself up for plenty of aggravation and disappointment, not to mention the negative impact on your staff and customers. Pessimism can bring everyone down, not just the person with the negative attitude.

Pessimism is nothing more than self-sabotage. Expecting only the worst is not being realistic. Realists hope for the best but prepare for the worst. Pessimists can’t imagine the best, so they prepare for the worst. And then if the worst never happens? Pessimists often find the worst possible result simply to prove that their concerns were right.

The question becomes, would you rather be right than be happy? That’s not being realistic, either. That’s being self-defeating. Pessimism can rob you of your energy, sap you of your strength and drain you of your dreams.

Optimism is the remedy. Optimism doesn’t mean pre¬tending life is always wonderful. Optimism means embracing reality. You accept that there will be bad days, but also good days. When you’re grounded in reality, you know where you are and how far you need to go. Once you know how far your goal may be from where you are, optimism can give you the motivation to make plans to get to where you want to go.

Pessimists see life as one problem after another. Optimists see life as one opportunity after another.

How you look at life can drastically affect how much you enjoy your life. Optimists expect the best out of life.

Does it make sense that pessimists tend to blame others or circumstances for their failures?

Optimists help create some of the good they come to expect, so they are probably right more often than not — and they don’t waste time worrying about what they’re not right about. Optimism relaxes people. When we’re relaxed, there is better blood flow to the brain, which results in more energy and creativity in your life.

There is virtually nothing that you can’t do if you set your mind to it. You cannot control events in your life, but you can control how you react.

Do you want to be a pessimist and have no hope for a better future? Or would you rather be an optimist and believe you can achieve a better future?

Mackay’s Moral: Attitude is the mind’s paintbrush — it can color any situation.

Harvey Mackay is the author of the New York Times best-seller “Swim With the Sharks Without Being Eaten Alive.” He can be reached through his website, harveymackay.com, or by e-mailing harvey@mackay.com.

In my situation, I learned years ago how to ignore or escape my husband’s negativity. While I succeeded most of the time, the times that I couldn’t get away from it caused tremendous stress. Not only did the stress impact my MS symptoms negatively, it would make me moody and stifle my motivation to move forward. Fortunately, I am a strong-willed person and almost always found alternative sources of optimism (e.g. friends, enjoyable interests/activities…) to lift me up before I got dragged into the depths of an abyss.

Now, in all fairness, my husband is a great guy and has many positive attributes. None of us is perfect. I am a sensitive person who cries easily or pouts. Personality traits are difficult to change; a person has to recognize a change needs to be made and then take great effort to make the changes. But this is a slow process that requires much patience.

If you don’t live with a pessimistic person, it’s easy to get away from him/her. An optimist living with a pessimist will be a lethal combination if coping mechanisms can’t be accomplished.

I know from experience. And I know that one of main reasons I have survived managing my MS is because I am an optimist. Attitude is everything.

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

Use Numbers to Increase MS Public Awareness

“There is strength in numbers.”
June 19, 2014

Numbers can be powerful; they draw a lot attention depending on how they are presented, what is presented, and how big they are.

Maybe if the numbers about the multiple sclerosis population were given more attention, a larger draw of funds donated would be given for research to cure, stop, and restore this disease. And it would increase public awareness about MS.

What kind of numbers and what could be done?

1. Update the number of people who have MS.

The same numbers have been used for years, maybe decades–400,000 in the U.S. and 2.5 million worldwide. These same numbers are used by everyone—MS Organizations, Pharmaceutical companies, Health organizations, the government…
In March, 2006, there is a document that was published that said:

“Steps are now being taken by a federal agency and by the National MS Society… including a proposal to develop a national surveillance system for MS and the launching of a National MS Society Task Force on Epidemiology. These efforts should help to bring researchers closer to identifying a possible cause of MS and should bolster programs and advocacy on behalf of people who have the disease…Conclusions: It has been over 30 years since the federal government has seriously addressed the issue of incidence and prevalence of MS, so the interest on the part of the ATSDR in tracking MS is a welcome and major step forward.” http://www.medicalnewstoday.com/releases/40510.php

Sadly, it never happened. The perspective of 400,000 persons can seem miniscule relative to a population of 300 million in the U.S., and compared to other chronic illnesses and diseases.

Most people involved with the MS community would agree that the current numbers used are much understated. Is it due to people getting diagnosed earlier as a result of more sophisticated technology enabling faster diagnosing, or is MS becoming more prevalent? When it comes to the total number of people living with MS, does it really matter?

When I told people thirty years ago I had MS, there was so little awareness and many people had never heard of it. Nowadays when I tell people, most people tell me they know someone who has MS. I’m not alone in this observation.

2. If the estimated cost to support a person with MS were publicized, the public would be amazed.

Let’s face it, MS is an incurable disease right now, is progressive over time with increasing disability for most patients, and lasts a lifetime. What kinds of costs? Doctors, specialists, physical/occupational therapy, ongoing tests, medications/treatments, walking aids, adaptive equipment, adaptive housing, medical supplies, hospital stays, in-home nursing…the list is endless. Stated on the NMSS website, it is estimated that it costs upward to $70,000/yr. for one patient living with MS.

Who is footing the bill for all of this? If people had any idea of what it costs to help a person with MS (e.g. annually, over a lifetime…), or overall what an estimated cost would be to support all MS patients, I bet those outside the MS community would reach into their pockets more. For example, a power chair can cost up to $20,000; the annual cost of a DMD could cost $20K–$60K annually, a required MRI is at least $1,000, etc.

People don’t think about costs of a health problem until they are personally affected. Making the public aware of costs associated with MS would at least cause them to stop and listen.

3. How many people with MS are on Social Security, and what is their average age?

Information about Social Security generally attracts attention. Numbers about patients with MS on SS should be explained in conjunction with the realities of MS disabilities: educating what the disabilities are and what a person with MS goes through to get on disability. (see http://debbiepetrina.authorsxpress.com/?p=289 )

4. Graphs, like pictures, can be more effective than a thousand words. And what is shown on those graphs can raised eyebrows.

Some examples: a graph could show the percent of persons with MS with various symptoms (% with fatigue, bladder, vision, bladder, walking problems); a timeline of after diagnosis, how soon the average MS patient develops certain symptoms; the process and effect that drugs/treatments has on a MS patient; the rise of MS cases in the military.

Get graphic and show realism. There are times and places to show what people with MS can’t do; or, what it takes to help them to be able to do.

5. Show the combined efforts of MS activity on a national scale, more often.

Much independent activity by MS organizations, pharmaceuticals, MS clinics, are going on but the activity is usually within their own domain, on a local level, or in a specialized newsletter or magazine. Collaboration of all of these individual activities, or “the sum of the parts” would demonstrate the magnitude and dedication of MS. Again, there is strength in numbers.

The media thrives on numbers, human interest stories; everyone—“big or small”—can become an advocate alone or with an organization. And there are certainly enough celebrities out there with MS that I bet would participate in sharing the realities of this debilitating disease as they display their courage living with it at the same time.

Yes, getting these numbers and creating strategies would take money and time. But it would be an investment, with a great return on that investment in donations, grants, and funding.

These are my thoughts. Maybe I am wrong, and things are happening that I am not aware of. I am interested in your comments and your ideas about this subject and content.

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

Please visit my website for more articles, videos, my book, MS information and resources.

The Power of the Brain

“Mind over Matter”

During a recent January rut, I decided to escape into movie-land to occupy my mind with something other than my personal woes. I love movies and I have seen five of them that are recent releases. Four of them are based on true stories; one is not, but I like to imagine that it could have been.

As I watched these movies, it reminded me how powerful the brain is in our ability to survive. There is a common thread in all of them: Mind over matter. It is possible and it does work. Since I live with MS, I think about the brain a lot because it is a disease that involves the brain.

The movie Lone Survivor shows the unbelievable strength and endurance of Navy Seals, as does the lead character in Twelve Years a Slave. How can a person’s psyche be maintained while experiencing such immense physical and emotional pain? Matthew McConaughey’s character was given one month to live in Dallas Buyers Club, yet he finds ways to live another seven years because he’s not ready to die. All is Lost and Gravity are two movies that have characters with incredible intelligence in their fields—sea and space–who find themselves all alone in disastrous situations. Their ability to focus on using their skills and ingenuity, despite their obstacles, keeps their fears at bay.

The will to live, to survive, to endure, to think, to focus, to achieve… Sometimes these can be acquired through training; sometimes it just happens because of the human spirit, hope and faith.

We have all heard stories about people who obtain super-human strength and endurance. The guy stuck in a crevice who cuts his arm off to get free, or the woman who lifts a heavy car off of her child after a crash. POW’s who survive torture. Holocaust survivors.

There are people who beat the odds when given a bad prognosis for something like cancer. Or other chronically ill persons who get better receiving what they thought was a new drug, when unknown to them they had really received a placebo (i.e. a “sugar pill”)!

The possible, the positive. Positive thinking is like an ol’ shot in the arm for me. It gives hope and energy. The confidence to move forward.

I remember using Lamaze when I delivered my son, and had a relatively quick and natural childbirth. Yoga and deep breathing techniques are effective in helping my neuropathic pain and muscle spasms.

I read about the brain often to learn about new research taking place for MS. I’ll start Googling a particular subject like myelin repair, and an hour later I am immersed in reading about rehabilitating a stroke victim. Fascinating stuff going on with the brain.

Yes!–there are other ways to “train” or “re-train” the brain. I have had partial success in past years improving problems that MS has caused me, such as balance and coordination. My will to do aquatics therapy regularly has helped maintain function. Yes!—there has been great advancement in research for restorative function such as stem cells. Clinical trials have started. Yes!—the brain has the ability to repair some damaged myelin in the early years of MS. Yes!—exercising and resting the brain keeps cognition healthy and functioning well.

And then there are powerful things the brain responds to: brainwashing, hypnosis, and drugs. Both positive and negative.

It is a powerful organ, but a delicate one as well. For the life of me, I can’t understand why someone would do boxing or head-contact sports. While they are working on battering their brains, I’m working on protecting mine. And while some people will take any drug a doctor will prescribe (or not prescribe!), I diligently do thorough research before taking any new pill or shot. That is what my great-aunt used to refer to as “use your intelligence.”

Mind over matter. Realistically, it doesn’t always work. But I like to believe that a person can do just about anything if he/she puts their mind to it.

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

 

 

 

Tell Jack Osbourne: We Need You After DWTS

“Be our Jerry Lewis?”

November 20, 2013

As I listened to Jack Osbourne talk frankly about his MS on Dancing with the Stars Monday night, I made a wish. I wished Jack would be an ongoing voice for the multiple sclerosis community after the program concludes. He has created awareness of MS and has inspired so many these past couple of months; however, when the show is over, I don’t want the buzz he is creating to be forgotten.

We have needed a well-known person that could do the same thing for multiple sclerosis that Jerry Lewis did for years with representing and fundraising for muscular dystrophy. But Jack could do even more in a different way, because Jack, unlike Jerry, lives with MS. He is one of us which makes him credible. And people like Jack.

I have been very involved with the MS community since my own diagnosis in the early 1980’s. While research has intensified and MS awareness has increased since then, a basic understanding of what MS really is still critically needed and equally important:

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 of the country.

It is amazing how many persons—even health professionals like nurses, GP’s—who don’t really understand what MS is. (Yes!—I actually gave a presentation about MS to an ER staff of fifty at a local hospital this summer.) There are many misconceptions about MS. (No!—20% end up in a wheelchair, not 100%.) And those of us dealing with this neurological disorder feel misunderstood, ignored, and forgotten. We feel this way because we know:

• 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.

• 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. 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.”

Jack “looked so good” dancing on the show. But then he talked about how his MS unpredictably acted up this past week, how it interfered with rehearsals, and what invisible symptoms he was experiencing (vision, fatigue, shooting pain in his limbs). With the intense stress with the finals in the competition, he is uncertain what will happen down the road with his health. It’s not like having a sprained ankle that will mend after it gets iced, wrapped, treated and rested.

We all know that to survive MS, a tremendous amount of support is necessary, and not only from family and friends. Physical, mental, emotional and financial support. Support for us individually due the difficulties and disabilities we live with; 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; and support for other programs such as social security disability.

People not understanding what MS is all about hinders the support that we need. MSers can learn to effectively “manage” their illness, not just “battle” it.

There are so many of us out there walking, biking, blogging and volunteering in countless ways to overcome our obstacles caused by MS. But it just hasn’t been enough, fast enough, or unified enough. Increased education and advocacy led by Jack Osbourne—such as hosting an annual united event–would enhance our goals exponentially.

What do you think? Will you ask Jack Osbourne to stay in the forefront and be our MS spokesperson? Or is this just wishful thinking on my part?

www.DebbieMS.com