Kristie Salerno Kent’s New Memoir “Dreams”

Posted on by

“My Journey with Multiple Sclerosis”

December 10, 2013

Kristie Salerno Kent is a singer, songwriter, producer, wife and mom. At the prime of her life, she is gorgeous, successful and now an author of a book. To look at her or listen to her, you would say she is lucky. But she will tell you that at one time in her life she didn’t feel lucky. Kristie has MS.

In her new memoir, “Dreams: My Journey with Multiple Sclerosis”, Kristie travels full circle as she talks about her dreams before her MS began, how her life and dreams became disrupted with her MS diagnosis/progression, and how she overcame the disruption through her music to once again dream and fulfill her life. Kristie feels blessed.

As Kristie openly tells her story, she takes us through her steps of the grieving process that one goes through when diagnosed with a chronic illness: denial, depression, anger and finally acceptance. Within the context of own experience, she specifically incorporates details of the challenges one faces with MS—the invisible, unpredictable and interfering symptoms—that create confusion, limitations and fear since there is no cure. Am I imagining this? What should I do? Where should I go? Who shall I tell and what do I say? How can I make this better?

She experiences the other severe implications of MS like fatigue and heat, and how they significantly impact even the smallest tasks. How can you explain these things to someone and help them understand the disturbances they cause when on the outside “you look so good?”  Kristie will tell you about this.

As the years go on in her life, she also tells about the adjustments, changes and choices she made to move forward in her life while never losing hope. Kristie writes in a fashion that is engrossing, easy to understand, and inspiring. One main message in “Dreams” is hope. Hope for herself. Her hope to help others understand the complications of living with MS. And hope that despite having MS, one can continue to pursue dreams.

When Kristie overcame her denial and depression, she wrote and produced her first album, “Believe.” She wants others to believe in themselves to fulfill their dreams despite difficult challenges that life can cause them. Kristie also produced an award-winning documentary, “The Show Must Go On,” to explain the symptoms of MS (http://www.youtube.com/watch?v=6oraM8IF2Gc). Now a mom of two small children, Kristie is a paid spokesperson for Acorda Therapeutics and travels across the U.S. to advocate for people living with MS.

The holiday season is meaningful. Starting with Thanksgiving, it is a time to be thankful for what you have and can do. Christmas and its sister holidays are a time of peace, joy, love and giving. With the New Year comes hope, new dreams, and reflection.

So if you want to read a book that packages all those things together, read Kristie Salerno Kent’s “Dreams: My Journey with Multiple Sclerosis,” available through a free (yes—free!!) download at www.DreamsTheEBook.com.

You will learn, relate, and walk away feeling inspired. I certainly did! And tell your family and friends about it, too. The more people both with and without MS understand this neurological disorder, the better off we will all be. 🙂

www.DebbieMS.com

60 Minutes Broadcast on the Social Security Program (Oct. 6, 2013)

Posted on by

“A Half-Baked Story.”

October 31, 2013

Many of my followers know I have lived with Multiple Sclerosis for 33 years, am considered an advanced MSer, and am confined to a wheelchair. What 60 Minutes did to people like me in that story was a great disservice. It’s been almost a month since that broadcast, and I am still seething so much I felt compelled to write this post. (The broadcast link: http://www.cbsnews.com/video/watch/?id=50156574n)

It is bad enough we fight our daily battles with MS, but our valid fight for Social Security Disability benefits, insurance coverage, etc. just adds to our breaking backs and hearts even more. This same crap goes on with Medicare. I’ve been using a wheelchair for over fifteen years, yet the tedious process I just went through for insurance coverage by Medicare to get a replacement power chair is another example of pure ignorance by people who think how “easy it is” to get these benefits and fraud the system.

I believe abuse is easy for people with money and/or power, with high-end attorneys and politicians backing them and it does happen. But it is NOT so easy for average, middle-income Americans and others who struggle on their own to apply for benefits through difficult requirements over extensive periods of time. Where is OUR voice and OUR side in this Social Security Disability story?

Shame on you 60 Minutes and Senator Tom Coburn (who led this fraud investigation) for telling an incomplete and misleading story!

• I personally know what one has to go through to get disability benefits and it ISN’T easy, even with a lawyer’s assistance. Did 60 Minutes or persons involved with the HSGAC Senators Social Security Disability Fraud Report ask people like me—or the Social Security Administration and other reputable sources or organizations–about the application process, requirements, statistics, etc.?

I would love to go toe-to-toe with anybody about the social security disability process, what it takes to get approval for hard durable medical equipment from Medicare, or what it’s like to have an incurable, progressive, debilitating illness for life and lose a job! And do you think the ADA really protects or helps a disabled or chronically-ill person in the employment world?!

• Yeah, people who take advantage of a well-meant program like SSD and commit fraud is outrageous and hurts people like me. BUT, it’s not fair to damn the entire program, state facts, or create perceptions that are incomplete or inaccurate.
For example, “Widespread Fraud reported in Social Security Administration’s Disability Program”, was reported by both 60 Minutes and Doug McKelway of FoxNews.com (10/8/13). If you go within the Oct 7th HSGAC Senators Release Social Security Disability Fraud Report you will see this statement: “This investigative report details some very troubling occurrences within the Social Security disability review office in West Virginia,” Chairman Carper said. While we don’t have any evidence that this is more than an isolated case, one example of inappropriate actions of this nature is one too many. I welcome the opportunity to hold a hearing today examining a number of issues surrounding Social Security’s disability programs, gather facts and attempt to ascertain the truth.” WHAT?–An ISOLATED CASE??? Here’s the link to a press release of the report: http://www.coburn.senate.gov/public/index.cfm/pressreleases?ContentRecord_id=e2d6986b-9afe-4ac7-84f5-8a66092e8a04&ContentType_id=d741b7a7-7863-4223-9904-8cb9378aa03a&Group_id=7a55cb96-4639-4dac-8c0c-99a4a227bd3a&MonthDisplay=10&YearDisplay=2013

And how about this– Senator Coburn claims the SSD system (like Medicare) needs fixed, is broken, and stated: “What we found was collusion and most likely fraud and extortion in this particular office…we found is that the people inside the Social Security Office, not the judges, but the people actually making determinations do a pretty good job, but then it’s totally ignored by the (administrative law judges)…” and “what we do know is this judge, it appears, didn’t actually look at the cases, just decided them on the record without hearing the testimony from either the attorney, the individual, or Social Security or reading actually the full file on the individual’s claim.” Hmmm—so it’s not the SSA people or the SSA requirements causing the fraud, it’s the judges, lawyers and doctors behind this particular office…

• Do you know how damaging it is to those rightfully needing disability to hear programs like 60 minutes and politicians claim that people on welfare or unemployed are going on disability to survive? The term “Secret Welfare System” was used, and it sticks like glue. Yep—all for a good story and personal gain at the expense of people like me.

• Do you know how many of us who are disabled or chronically ill hate being on disability, who want to get better, who want to work? Quite frankly, I am tired of the growing stigma that people would rather receive a government entitlement than work. This broadcast and report just adds to this stigma.

The National Multiple Sclerosis Society, a highly respectable and reputable organization, sent this letter to 60 Minutes immediately following the broadcast:

Messrs. Jeff Fager, Bill Owens and Steve Kroft
60 Minutes
CBS
524 W 57th St
New York, NY

Gentlemen:

CBS’s 60 Minutes deservedly prides itself on high journalistic standards and sharp investigative reporting, and for decades has played a valuable role by exposing serious flaws in otherwise well-regarded institutions and programs. However, the CBS 60 Minutes broadcast on the Social Security disability program that aired last Sunday, October 6th, painted a misleading and inaccurate picture of an important program which serves as a vital lifeline for millions of Americans with severe disabilities and chronic conditions.

We wholeheartedly agree that it is essential to investigate, discover and end abuses and misspending in government programs including Social Security. The Social Security Disability Insurance program is critical for people with disabilities and chronic conditions and we commend efforts to find fraud and prevent those not deserving its services from abusing the system. However, by highlighting only alleged fraud, without the broader context of the millions of individuals who rightly receive and so wholly rely on benefits, your report inaccurately cast the entire Social Security disability program in a bad light.

The single most authoritative source of information on the Social Security disability program’s policies, operations and trends is without question the Social Security Administration itself. A thorough and complete presentation must include the perspective of the agency’s officials and experts. Another valuable and important source of information on Social Security disability programs that was overlooked are people with disabilities themselves, who have been through the rigorous application process, with six in ten being rejected. The Social Security disability standard is incredibly strict; demonstrating eligibility requires extensive medical evidence, and even people with severe disabilities can wait months if not years to receive benefits. Many individuals are denied despite significant disabilities and chronic conditions such as multiple sclerosis (MS), the most common neurological disease leading to disability in young adults.

Media coverage – particularly from a respected program such as 60 Minutes – can have real consequences and can lead to needless harm to an extremely vulnerable population. The wellbeing and economic security of millions of people with disabilities and their families – for whom Social Security disability benefits are nothing short of a lifeline – hang in the balance. We hope that 60 Minutes will supplement its reporting on these vital programs with completeness – by providing needed context, balance and essential facts about the disability program from additional, important sources.

If you have any questions or would like to possibly speak with someone living with multiple sclerosis who receives SSDI, please don’t hesitate to contact me by phone at 202-408-1500 or by email at Ted.Thompson@nmss.org or reach out to my colleague Arney Rosenblat, whose contact information is below.

Thank you for taking time to consider our view on this issue.

Sincerely,

Ted Thompson
Vice President, Federal Government Relations
National Multiple Sclerosis Society

Arney Rosenblat
Associate Vice President, Public Affairs
Arney.Rosenblat@nmss.org

Thank you, NMSS, for speaking accurately and clearly on our behalf. However…

…is anyone listening? Did 60 minutes respond? Are those of us who are truly disabled going to be fairly represented or properly defended? Are there any planned follow ups?

Stayed tuned…or is it just a waste of time and more of the same to come?

www.DebbieMS.com

Tips to Cruise/Tour Alaska in a Wheelchair (with videos)

Posted on by

“What I learned–How I did it”

October 12, 2013

I was extremely nervous prior to taking a 14-day land tour/cruise to Alaska because I am confined to a wheelchair. Though I can stand, I do not walk at all. When travelling in a wheelchair, there is always a glitch with something that is supposed to be ADA compliant and isn’t.

My husband and I recently returned from a Princess Tour/Cruise package called “Off-The-Beaten-Path.” Our trip began in Anchorage, and then took us to Copper Center, Fairbanks, Denali National Park, Mt. McKinley and Talkeetna. We boarded the Princess Sapphire in Whittier and travelled southbound through the Inland Passage to Vancouver, with port docking in Skagway, Juneau and Ketchikan.

Overall, the trip was incredible. From an accessibility standpoint, it also was superb, though there were a few hiccups that we encountered along the way. I brought them to Princess’s attention (which were warmly welcomed) and will share them with you.

The following is a summary of tips and recommendations I am making from my own personal experience if you are considering a trip:

• Never assume that when someone tells you a room, transport, transfer, etc. meets ADA standards that it is. There is a wide variance in interpretation and assumptions when one says it is “ADA compliant.” You must make a list of specific questions that require specific answers from a travel agent who really is knowledgeable about your specific, required accommodations.

• When I started planning my trip, I worked with Princess directly. I spoke with agents who actually cruised on the Sapphire Ship, who could give me info about wheelchair-friendliness on the ship and help me choose a room. I also spoke with their Access Department about accessibility accommodations regarding on-land hotel rooms, and things such as shuttle/motorcoach/railroad lifts. These folks were extremely helpful. I didn’t want to work through an independent travel agency as I have learned from experience that specific things don’t always get answered properly, or get “lost in translation” when dealing through a third party.

• I booked my trip almost a year in advance, so that I could get exactly what I wanted. For example, I wanted a room on the Lido deck because the buffet, grill, and outside pools/seating/movies were all on this same deck, eliminating elevator usage. It also saved us $1400 by getting an interior room–the outdoor open deck was just outside our door so we didn’t need a room balcony.  The room was located mid-ship, a definate advantage for two reasons. It was near the elevator but more importantly, ship motion is minimized–key for physical balance/coordination difficulties. Ocean waters can get rough; our ship actually had to navigate a storm with 90 mph winds for 18 hours.

• Here is a link to a video of my handicapped accessible room on the Princess Sapphire, which was perfect: http://www.youtube.com/watch?v=H2vJq_lQDi4&feature=em-upload_owner . Princess informed me that their cruise rooms are actually reviewed by someone in a wheelchair—a HUGE plus, and good to know for future cruises!

• We booked in September because there were fewer crowds to navigate in the towns, and no young children. I find that when I am in my scooter, I have to always be looking out for others; so many people–especially kids—are not looking out for me. In addition, we didn’t have to deal with mesquitos at that time of year, we saw the Northern Lights, gorgeous autumn color, and the days were cool—50-60’s. The cooler temperatures were good for me since my MS is very sensitive to hot, humid days, which occurs often in the summer months in Alaska.

• I sent a letter in writing to the Princess Access Department stating that I was “confined to a wheelchair,” therefore needing lifts for all transport and a roll-in shower for all hotel rooms if available. I recommend sending such a letter if you are totally confined, as this will cover your butt if later problems develop, which in my case it did.

For example, there were three motor coaches that arrived that did not have lifts. Fortunately, I am small (125 lbs.) and my husband is strong, so I was able to be carried up into the coach. Otherwise, I would have had to stay behind which would have disrupted my trip, and cancelled one of my tours. In the future, this is what I would do and what I would recommend others to do: Check with the (Princess) Tour desk at every hotel that you stay at to re-confirm that a transport with a lift will be available for you for the next several days. You can also re-confirm any other special needs that you had requested ahead of time, such as a roll-in shower. Twice I was given a room without a roll-in shower, and later found out that this room was given to someone who didn’t require one. If I had been travelling with my sister instead of my husband, I would not have been able to shower since she couldn’t lift me into a tub that had a chair put in it.

Here are videos of two of the rooms I stayed during my land tour:

Handicapped Accessible Room Evaluation–Copper Ctr., Alaska (Princess Wilderness Lodge)
http://www.youtube.com/watch?v=Lg9iu7AUmu8&feature=em-upload_owner

Handicapped Accessible Room Eval– Fairbanks Princess Wilderness Lodge http://www.youtube.com/watch?v=FxMgglKtt4U&feature=em-upload_owner

• If you are a part-time wheelchair user, please note that there are 5-7 steps going up into a motor coach and they are quite steep.

• The railroads had lifts, as did the separate tour buses in Denali National Park.

• Amazingly, the accessibility in the Alaskan towns—even the smallest inland places—was very good. When I use a restroom, I need assistance from my hubby. We were able to find a restroom that was large enough for both of us, even on the Steamboat River cruise in Fairbanks and the Roadhouses we stopped to eat in during our journey. Note: the railroad restrooms cannot accommodate two persons, so if you are someone who requires a helper, you will need to prepare yourself in other ways for the 5-6 hour ride.

Also, we did not have an accessible bathroom on our 6-hour flight to Anchorage. US Airways said that only air carriers with 2-aisles have an accessible restroom, and our jet was a single-aisle carrier. They said two-aisle aircraft are used only on international flights. I am in the process of pursuing this with the ACAA Agency (Air Carrier Access Act), that airlines have to comply with for handicap accessibility.

If you are thinking about taking a trip to Alaska, now is the time to start planning your arrangements. Or if you are considering a different cruise or land tour, planning a year in advance is highly recommended. Finally, after I booked with my deposit, I had the option to cancel my entire trip with a full refund up to only sixty days in advance of departure. Then because of the unpredictability of my MS, I opted to buy travel insurance.

I am so glad I did this trip! Now I’m saving up for another one :).

www.DebbieMS.com

MS Bladders & Colons: TheraCran, Colonmax, Article May Help

Posted on by

“Why Not Try It?”

September 3, 2013

There are two supplements that I take that helps me tremendously with my neurogenic bladder and constipation troubles that are caused by my MS. They both contain natural ingredients, and I have used them safely for a long time without any side effects.

Note: I don’t sell these products, nor do I get a kickback from the companies and sell them. I am only suggesting them as something that may help you as much as they help me. And of course, we all know that what works for one person may not work for another…but it never hurts to try!

1. TheraCran is a standardized, high quality cranberry supplement to support/maintain urinary tract health. Cranberry products can greatly reduce the risk of a urinary tract infection—a common and serious implication for persons with MS. What is the benefit of these supplements over cranberry juice to help prevent UTI’s? They are less cost and virtually calorie/sugar free.

Check out this link for questions and answers about this product http://www.theralogix.com/index.cfm?fa=products.theracran.faq&dvsn=urology

Personal Note: I take one/day, not two as they recommend and it is just as effective. Also make to sure to drink plenty of water everyday, as this is not a substitute for that.

2. ColonMax is a natural solution for occasional constipation. It combines herbs and magnesium that help to gently encourage at least one healthy bowel movement per day and help stimulate sluggish colons. Magnesium helps to retain water in the bowel, which makes waste easier to pass. Cape aloe, rhubarb and triphala help to stimulate and strengthen bowel contractions. Marshmallow and slippery elm help to soothe and lubricate the bowel.

Personal Note: Because all ingredients are natural, I get no bloating or cramping. Sometimes it takes me two days to have a bowel movement. The link below that explains the product is a great online company that I have ordered from for years.
http://www.vitasouth.com/products/Advanced-Naturals-ColonMax%E2%84%A2.html

Finally, here is a very good article about bowels that plague so many of us that have MS: “Managing Bowel Problems that Accompany MS” http://www.unitedspinal.org/msscene/2007/01/16/managing-the-bowel-problems- that-accompany-ms/  

www.DebbieMS.com

Positivity: Essential For Our Health & Happiness

Posted on by

“How to Embrace It”

July 16, 2013

Having a positive perspective in life is critical to both our health and happiness.

Earlier this year I came across an article by Renie Cavallari, CEO and Chief inspirational officer of Aspire Marketing and Training, and saved it. Recently I went through a negative spell, and re-reading this article helped me re-focus and turn my attitude positive again. Since her article is so good, I decided to take direct excerpts from it to share with others:

“Nothing positive comes from negativity. How you choose to see the world is how you experience it. You feel the way you think and your thoughts reflect your actions.

As a human being, you can control how you feel. You can choose to take any situation and consider it from a positive perspective. This is not to say that when you feel bad or sad, you should deny your feelings. What you can do is decide how you will allow the people and events of your life to affect your world.

Things happen that are disappointing, upsetting or overwhelming. This is when you have to conscientiously change your perspective so you can get to a more productive mental space. You cannot change the events of your life. You can change how you experience them.

Here are a few tips:

• Ask yourself, “What is right or good about this situation?” Avoid the negative narrative and find what is helpful.

• When your energy is low, this is the first sign that you want to get some exercise. Exercise actually “turns on” our energy and has a way of giving our negative thoughts and feelings a place to release. Just take a walk, breathe in, pick up your pace and burn off the negative energy.

• Who you hang out with is who you become. Some people just give off negative energy; this is why we feel so exhausted around them. When disappointments happen, you want positive and supportive people in your world. Fire the naysayers. They are not helpful and only hold you back.

• Sometimes embracing the humor of a situation helps. Ask yourself, “What about this situation will be funny in a year? Or maybe five years?

• Move to solutions. Many times we think about what is wrong vs. what we can do next. If you stay in a place of a problem (what is wrong), you end up feeling negative and stuck.

When you start planning what you are going to do, you begin to feel empowered and in control; you start moving toward what you want. This forward momentum creates more positive energy and gets you where you want to go.

Your energy determines how you feel and experience your life. Positivity is the fuel for happiness.”

Thank you, Renie!

www.DebbieMS.com

Stuck in a Negative Spell & Attitude

Posted on by

“Grieving”

July 16, 2013

Normally I am a very optimistic person.  Throughout my life, I dealt with many major, difficult events that required life adjustments.  Going through a grieving process—denial, anger, depression, bargaining–often accompanies the life adjustments.  Somehow I always managed to plow forward through the process rather quickly, restoring a positive attitude and looking for that silver lining.

People have often remarked what an inspiration I am and how well I do. But lately, not this time.  I have been stuck in one of those negative spells, with a negative attitude.  In April, I developed complications from a UTI, got a virus, and had an allergic reaction to an antibiotic all at the same time.  The perfect storm stirred up my MS to the point that left me completely incapacitated. I was admitted into the hospital.

Fortunately, after weeks of treatment and home care therapy, the infections and sickness went away and the MS calmed down.  Physically, I returned to my previous pre-relapse “normal” state.  But having the weeks of downtime and being incapacitated shook me to the core. My mental and emotional state didn’t rebound so easily. Every day I got out of bed and went through the motions of life, but with no smiles or enthusiasm. I was  existing without any happiness. My emotions were erratic and unpredictable.  Nothing was fun or funny.

I was grieving.

I was sick of being sick of being sick and tired of being tired.  Too many times over too many years of problem solving and adjusting.  My mind shut down; it was hard to think, which is what I always seem to do.  Think.

Everything in my life has to be planned and organized around my bathroom problems, medications, accessibility needs, physical limitations, fatigue, waiting for others to help me with something… And every thing I do takes so long to do.  Sometimes it’s just not worth the effort. Everything is a production.

This coming September, I have a trip planned to Alaska.  While “normal” people are looking forward to the cruise, food and excursions, I am dreading it all.  I worry about embarrassing myself with a bathroom accident.  Or, what will I do if I get a serious UTI, since I am resistant to oral antibiotics?  I have to plan to try and prevent these things from happening.  It is exasperating.

On the other side of the coin, so often I have to cancel my laborious plans because I don’t feel well, am too fatigued, maybe didn’t sleep well, require a laxative…  I have to plan, but other times I can’t plan something because of some physical or accessible limitation. It drives me crazy.  I can’t be spontaneous about anything.

Over the years, one reason I have kept a personal journal was to vent my sadness, stress or frustration.  Here are a couple of entries made during this bad spell:

“I wish I could just have 24 hours of being a normal person with no physical problems. To sleep through the night without waking up because of a cramp, a spasm, a pain, or to have to pee.  To not wake up tired after being in bed for eight hours. To sit down and pee without the hassle of using a catheter. To have a bowel movement without worrying about if I am going to go, or if I am going to get to the commode in time.  To eat whatever I want without bloating, gas… To have a day with no pain, or edema.  To be able to walk.  To have a day when I could everything myself without waiting or depending on someone to help me. To not have to worry about changing or cancelling plans because I am too tired.  To not drop things.  To be able to jump in the car and drive someplace alone. “

“Life is a journey as people often say.  But why is it that some people just seem to cruise through life?  Sometimes I feel like I’ve been travelling on some bumpy, dirt road never knowing when an obstacle will pop up.  It always does.  A flat tire.  A dead end.  A detour.  Overheated.  A breakdown.  Out of gas.  An unmarked fork in the road—which way to go?  Stuck in a rut.”

In the past, I always reached out somewhere, like counseling, to get me through my grieving.  Grieving isn’t a bad thing; it is a coping mechanism.  But grieving too long is not good.  It will crush your mind, body and spirit.  I wasn’t reaching out this time and I was getting crushed.

Two things happened over the past month that broke me out of this spell and helped me heal my spirit. The first thing was that a lost dog appeared in front on our house late one evening, barking incessantly.  This dog was a clone of my beloved companion Bear that died exactly a year earlier, both in looks and personality.  After a month of unsuccessfully locating the owner of this lovable one-year old pup, we adopted “Grizzly”, aka “Little Bear” as we named him.

Second, I came across an article about positivity that I saved from earlier this year.  It was also a catalyst that started me thinking healthy thoughts again.  I’m posting it today on my blog after I post this article so that it may inspire others as it inspired me.

Divine intervention?  I think so.  Faith, hope and love are so powerful.  They pulled me out of the deep, dark hole I fell into and got me over my grieving.  I’m moving forward again with a positive outlook and I’m smiling again on the inside and out. 

www.DebbieMS.com

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

Posted on by

“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

 

Are Cognitive Problems Blamed Too Much on MS?

Posted on by

“What to Know—What to Do”

June 4, 2013

MS has many misconceptions associated with it, and cognitive impairment may be one of them. Lately, it seems that I read and hear more and more about how MS is the cause for memory issues that MSers experience–it is gaining a reputation for brain dysfunctioning. And along with the increased reputation comes the increased fear.

Although MS can cause cognitive issues, it is important to know that they are NOT the most typical symptoms of MS. 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).

What are these impairments? Things such as:

• Long-term concentration; inattention; distraction
• Forgetfulness
• Planning or problem solving difficulties
• Loss in thought processes; word finding
• Not thinking quickly or clearly; “brain fog”

BUT, these types of difficulties can also be the result of other factors such as age, hormones, menopause, overload, stress, drugs, fatigue, depression and lack of sleep. For example, up to two-thirds of women report forgetfulness and other mental disturbances during hormonal shifts of menopause! So, maybe that 40-50% estimate is really lower in reality.

There is something called neuropsychological testing, and more people in the MS community are talking about them. These tests were designed to measure cognitive difficulties. However, unlike some other areas of measurement, with these tests 1) there is no single test that measures everything that the brain does, and 2) there are wide variations in how/what types of tests are done and their conclusions. Furthermore, the testing can be strenuous and expensive.

In the end, does knowing the test details make much difference in one’s life? Doesn’t it make more sense to learn about these cognitive difficulties and what can be one done to overcome them?

What to Do and Why

• Exercise your brain. Practice brain games, crossword puzzles, and memory exercises that stress verbal skills.

• Enrich your diet with plenty of omega-3 fats, low-glycemic index carbohydrates (e.g., whole grains) and antioxidants. Walnuts and fish high in omega-3 fatty acids (including sardines and salmon) fight artery-damaging inflammation. Antioxidants raise acetylcholine, which is an essential neurotransmitter for memory. Berries, especially blueberries, are loaded with anthocyanins – potent antioxidants that protect cells, including those in the brain. Blueberries may also have the power to create new pathways for connection in the brain.

• Eat several smaller meals throughout the day. Eating small meals prevents dips in blood glucose levels, and glucose is the primary energy source for the brain.

• Take walks daily and do stretching exercises. Increased cardio can make your brain actually grow, with more white matter and more neuron connections.

• Do stretching/relaxation exercises and meditation to reduce anxiety and stress. Stress causes the body to release cortisol. Cortisol—the body’s stress hormone– has been found to shrink the memory/learning centers in the brain, which results in impaired memory.

• Make sure your body is getting enough iron. Iron helps the neurotransmitters essential to memory function properly.

• Make sure you are getting enough sleep. Anyone who’s ever stayed up all night recognizes that next-day brain fuzziness, when it seems like nothing really registers or is available for recall later. That is what’s happening. Different parts of the brain are responsible for creating different types of memories – a face, a name, or just the recollection that you met someone. Sleep is also needed to make long-term memories last.

• Focus on one task at a time to keep a recollection of each one. When you do multiple tasks, the brain switches processing to another region that retains fewer details. For example, listening to the news while reading something will impair your ability to recall either later.

• Check your cholesterol. The plaque buildup can block the blood vessels in your brain, deprive it of valuable nutrients, and cue memory problems.

• Keep thin or lose weight. The brains of obese people work harder than those of normal weight people to achieve the same results, according to researchers at Carnegie Mellon University. High blood pressure and inflammation—both of which strike obese people hard–irritate the brain’s communication networks, making it more difficult for the brain to receive messages.

• Many prescription drugs can affect your memory, and the older you are, the longer drugs stay in your system. Drugs that can cause memory lapses include antidepressants, anti-anxiety drugs, beta-blockers, sleeping pills, painkillers, antihistamines, and statins.

Easy Memory Tricks

1. Repeat yourself. To help get a routine activity lodged in your brain, say it out loud as you do it. “I’m getting the stamps” – fends off distraction as you go to get them. You may sound crazy, but rehearsal is one of the best tricks for memory. Memory experts also advise that you repeat a person’s name as you are introduced.

2. Bite off bigger pieces. Since your brain can process only so much information at a time, try chunking bits together. By repeating a phone number as “thirty-eight, twenty-seven” instead of “3, 8, 2, 7,” you only have to remember two numbers, not four.

3. Give words more meaning. When you’re introduced – let’s say to Elton – connect the name to someone (“Elton John”), a place, etc. Or you can use rhymes—“Dennis plays tennis.”

4. Create unlikely connections. For example, switching a watch to the other wrist when you need to remember something. The oddity of not finding the watch where it should be triggers recall.

5. Practice paying attention. What was your neighbor wearing this morning? Even if you’ll never need the information, forcing yourself to observe and recall the details of your day sharpens your memory.

6. Do something mentally challenging. Working a crossword puzzle, or learning an instrument or foreign language creates fresh connections in the brain. It can actually generate new cells in the brain’s hippocampus (i.e. the brain’s learning/memory center). Those new cells build cognitive reserves that are important for creating new memories and may protect against memory loss – even dementia – later in life. A timed game like Boggle or Simon will force you to pay attention, work quickly, and think flexibly.

In summary, if a MSer is experiencing some type of cognitive problem, it may be prudent to initially think through the possible causes and try commonsense solutions to improve it.
www.DebbieMS.com
Author/MS Counselor/Living with MS

MS: Disease Modifying Drug Therapies

Posted on by

“Questions and Concerns”

April 5, 2013

On March 27, a news article stated “The U.S. Food and Drug Administration has approved Tecfidera™ capsules (dimethyl fumarate, Biogen Idec –formerly “BG-12”) as a first-line disease-modifying therapy for people with relapsing forms of MS.”

This is the tenth DMD (Disease Modifying Drug) that has been approved by the FDA to reduce the progression and activity of the disease. It is also the third DMD approved in the past two years that can be taken orally in lieu of an injection, exciting many persons who have MS.

The National MS Society and most neurologists, are strong proponents of these DMD’s, and recommend starting one as soon as a diagnosis is made. “Taking a disease-modifying therapy is currently the best way to reduce MS disease activity and future deterioration,” states an article on the internet front page of the National MS Society today.

Is it the best course of action to take for everyone? Here is a list of questions/concerns to think about when deciding whether to use a disease modifying drug:

1. Is it wise to start a treatment that was just FDA approved (or just approved in the past couple of years), without knowing the long-term side effects?

• None of the DMD’s decrease the relapses 100%; most decrease them in the 28-68% range. Is this enough to justify the possible long-term effects of possible liver, kidney or heart damage? Built up resistance? Other serious health implications? What if the person is only a teen or very young and has decades of life ahead of them?

• The biggest fear of having MS is the loss of mobility, although there are numerous other symptoms of MS that are disturbing. This fear is exemplified by slogans, ads, pictures and more. Yet, for years the statistics estimated that 25% of MS patients end up using a wheelchair during their life. After living with MS for 32 years, I am one of those people in a wheelchair. Maybe this sounds stupid to someone, but I personally feel that I would rather manage living in a wheelchair than with a damaged liver.

• What happens if the DMD is found to not work after all? News came last July that an extensive study suggests interferons, the basis for many DMD’s, did not reduce MS progression. This news was alarming. “Can this be true?–after all those years of injections, tests, office visits, side effects, dollars spent….” were comments expressed in social media.

Within the above-mentioned article, Bruce A. Cohen, MD, Professor, Davee Department of Neurology and Clinical Neurosciences at Northwestern University’s Feinberg School of Medicine, and Chair of the National MS Society’s National Medical Advisory Committee states “As with all newly-approved treatments, we will learn more about the benefits and safety of Tecfidera over time.” Hmmm—does this comment concern you?

2. Does the decreased rate of 28-68% of possible reduced relapses warrant the short-term side effects and other things people experience with DMD treatment?

• Yes, treatments do have side effects, and again they vary widely for each individual. Nausea, flu-type symptoms, dizziness, site-injection soreness and fatigue are some but not all common complaints. One has to ask and decide for him/herself if the treatment is worth it; for example, feeling like you have the flu 1-2 days a week after an injection. Or putting it another way, which is the lesser of two evils? In addition, I hear and read so often in social media about how frequently MSers change their DMD because of the side effects, or that it is not working in slowing the progression.

• DMD’s require much monitoring–doctor visits, MRI’s, clinic visits… The therapy adds more cost, are time-consuming and exhausting. Fatigue—a very disabling symptom 90% of MSers experience—is compounded.

• Taking a DMD is a difficult regime. It adds physical, emotional and mental stress on the body. These could lead to depression, and more fatigue. It is possible that the stress of taking a DMD could nullify any possible benefit of it for some people.

• Treatments are expensive. The price tag on this new treatment is $55-60,000! While some patients get financial assistance through the drug companies or being a clinical trial participant, many others pay thousands of dollars annually out-of-pocket. I’m becoming quite cynical of pharmaceutical companies when I see their expensive ads, exhibits and give-aways at events.

3. Should a newly-diagnosed person start a treatment without first evaluating how aggressive or mild their disease course is?

• Up until 1996, a type of MS included a “benign” course. Up to 20% of MS patients had this type of relapsing-remitting, in which few relapses occurred that would go away and leave very little or no residual damage or disability. Symptoms were primarily sensory, but could include others such as motor or bladder disturbances. The term is no longer used, and this type is now included with the relapsing remitting type.

The point is that many persons diagnosed with MS could have a mild case, and how would they know if they started a treatment immediately after diagnosis? In addition, a newly-diagnosed person is usually quite stressed and often prescribed other drugs to relieve symptoms or the relapse. The waters become muddy in knowing what is causing what, positively or negatively, when everything is happening at the same time.

• A newly-diagnosed person should take notes and keep a journal about their symptoms, reactions to any drugs given for a symptom or a relapse, etc. to learn about their own case of MS. Delaying a treatment of several months will make little difference in the overall course of the MS. Not taking care of oneself, feeling pressured by doctors/others, and chronic stress can affect the MS as much as not taking a DMD.

• Meantime, research the studies thoroughly about a drug before going on one. Do it from a variety of sources. Carefully evaluate the studies behind the drug—number of people involved, length of the study, type of study, etc. Use common sense, and remember that this is your body and ultimately your personal decision.

4. To expand on #3 above, has both the doctor and the person with MS evaluated his/her course for a reasonable period of time before starting a DMD?

• Each person with MS has a different course of progression, relapses and symptoms. No two cases are alike. Patterns of these factors will emerge after awhile. What are the frequency, severity, duration and residual of a relapse? Is the relapse being defined properly? MS is sensitive to many things, and several days or even a week of intensified symptoms does not necessarily indicate a relapse.

• The number and location of lesions being used as the sole indicator of disease progression can be leading. New and old lesions cannot always be distinguished and lesions showing on one MRI may not appear on the next one.

5. Do doctors honestly know if a slowing of progression is from a DMD? Couldn’t less lesions result from the natural course of the disease itself or any health/wellness program a patient is following?

• The truth is, DMD’s are difficult to monitor accurately. And it is worthwhile to note that DMD’s are not meant to make a person feel better.

6. Why isn’t there more emphasis on managing MS from a non-medicinal standpoint? Why are drugs pushed as the first line of defense?

• Since there currently is no cure for MS, the objective is to reduce the amount and severity of relapses to prevent further damage to the central nervous system until a cure is found. It is common sense that a comprehensive therapeutic approach should be taken to treat MS.

• There is no single drug to make MS go away. While drugs play an important role in helping symptoms, relapses and the course of MS, there are so many non-medicinal things a person can do to both manage and control it as well without side effects. Examples include:

– Taking care of oneself with proper diet, exercise, sleep, low stress…
– Not getting sick or infections since MS is an autoimmune disorder.
– Alternative therapies, such as Yoga, Pilates, Tai Chi, massage…

There are many MSers who use this approach successfully to manage their MS, while taking drugs for symptom relief or relapse treatment (corticosteroids) as needed.

Sure, I want a cure or an effective treatment just as much as the next person, but I have always weighed my options carefully. I’m only 57 and I have many of years ahead of me. So I have to make sure I do my research and ask questions in order to make the right choices. Shouldn’t everyone?

www.DebbieMS.com

March is MS Awareness/Education Month

Posted on by

“Get Involved”

March 4, 2013

YOU are needed to get involved if: you have Multiple Sclerosis, someone you know has MS, are involved with MS associations, or have MS patients in your profession.

Why? Watch this video about my orange ribbon campaign http://bit.ly/YPI1Kq

How? It’s very simple. Read my MS Blog article that includes a quick summary of “What is MS” https://blog.debbiems.com/?p=113 

Orange is the color that stands for MS. You can simply wear an orange ribbon every day on your lapel/shirt, in your hair, on your purse…….or you can tie an orange ribbon on your car or put one on your house!

Want to do more? Organize something as a team. Watch this fun video to see what we did at the Arizona Chapter of the National MS Society http://bit.ly/YJxleg  .

Please start today!

www.DebbieMS.com