MS and Your Relationships

“Strategies & Tips”

On February 15th, I facilitated a workshop entitled “MS and Your Relationships” in Phoenix. The workshop was part of Genzyme’s One Day for Every Day Event. This is a summary of that workshop, as I want to share this information with a larger audience.

I began by telling the attendees that a one-hour timeframe was not enough for this big, important subject. It’s bad enough that everything about MS is complex, from the diagnosis to the symptoms; after all, the nervous system is involved. But people are highly complex too because of their thoughts and emotions. So when you put the two subjects together—yikes!!

Just about everyone in the room with MS was there with someone else—either a spouse, sibling or friend. This was good because everyone living with the MSer is also living with MS. And that goes beyond the immediate family.

My presentation was to discuss communication strategies and tips to create a foundation of open and honest communication. I adjusted this goal to first, make the group interactive, and second, address two other critical aspects of relationships: support and knowledge.

• Support and knowledge reduce the fear one has with an MS diagnosis. The more you have of both, the better chance you have to survive this disease. One has to be careful though where one gets the knowledge since because of social media, there is much information available today that can be overwhelming and inaccurate.

• Since MS is still a lifetime illness, knowledge and support will change many times as time marches on due to disease progression and lifetime changes that will occur.

• Everyone in the room needs it; everyone outside the room needs it. What is NOT a strategy? Doing nothing—doing no communicating, obtaining no knowledge, getting no support. Anyone dealing with MS will not survive it if none of these are done.

Who are the relationships the person with MS interacts with? What do we say to whom? Who do need support from?

• Family: partners, children, parents, siblings (Needs communication at appropriate level; “show & tell” is a great game to play to help a non-MSer understand invisible symptoms. For example, have men walk in spike heels to understand balance issues; put 10-lb, weights around ankles to experience walking heaviness and fatigue; put a knit glove on a person and have them find objects in a purse like tissue, quarters, etc.)

• Friends (How much you share depends on depth/closeness of friends.)

• Workplace people: boss, colleagues, human resources (very subjective area—many reasons to disclose or not to disclose)

What groups were missing from the power point slide in the presentation that are just as important?

• Peers (They are a lifeline for both MSers and non-MSers—someone you can easily relate to because they are “in your shoes.”)

• Healthcare team (Make sure all of them understand and have experience with persons with MS!  For example, a physical therapist needs to understand the effects of heat and fatigue of MS. Also, you need to like and trust your neurologist; if you don’t, fire him/her and get another one, as this is a lifetime, crucial relationship.)

• Strangers (I have had to ask strangers for help many times since I had mobility problems since my early years. For example, helping me reach something in a grocery store, or assisting me in a dressing room. People in general–in all of the above groups too–like and want to help. It makes them feel good, and they hate to see someone struggle. Personally, I will let people help even if I don’t necessarily need it!)

• Pets (Wow—they understand/comfort us the most, don’t they?!)

I had all eyes on me from my audience, and many nods or claps. It was interesting to see hands go up when I asked how many felt they needed better support in various groups or who didn’t like their neurologist.

Talk is good, even if it doesn’t solve anything. It feels good to get things off our chest. I have an old MS buddy who called me recently and asked, “Can you talk to me? Is this a good time?” But if there is someone like a stranger or a fellow employee who asks you something that you don’t want to talk about, just simply say: “It’s a long story…”

Venting is also good, as long as it doesn’t hurt anyone. For example, when I get stressed out or frustrated, I cry or call a close friend of mine who is a peer. My husband on the other hand will yell or throw things in an un-harmful way. We go our separate ways to vent because I don’t like his yelling, and he doesn’t like my crying. When the steam is released from the pressure cooker, everything calms down. Holding things inside without a release is dangerously stressful, and we all know how stress negatively affects MS.

What if the people we need to talk with will not communicate or talk? Then it is essential to find someone who will…

In the beginning of my MS, my family was in denial. I went straight to the local chapter of the National MS Society to get literature and meet others who had MS. Later, when both my husband and my mother wouldn’t talk to me about my MS, I went to a therapist who understood MS to help myself deal with these two close people in my life. Years later, I went to a therapist again when deciding whether to give up my career. My MS was aggressive and it was progressing rapidly.

There’s no question that people living with a person with a chronic illness such as MS, is also living with it too. While open communication is essential for all involved, it unfortunately doesn’t always happen effectively without having an “outside” person/s involved. Perceptions are different, emotions are involved, and more often than not, negative consequences result. Ideally, partner/family counseling is essential in most cases.

Realistically, there are obstacles with professional counseling. The first is that many people–whether they have the illness or not–do not want to go to counseling. This was the case in my own personal situation and though I pleaded with my family to go, it didn’t happen. So I went to counseling on my own and fortunately, it helped me tremendously to figure out how to handle my family relationships and how and where I could get support that I needed. Secondly, I believe it is imperative that a good, reputable therapist who UNDERSTANDS MS is found. MS is complicated in many ways, is generally progressive, and currently lasts a lifetime. Finally, many people unfortunately cannot afford therapy; however, many county health departments have resources available for financially strapped people.

So what are strategies to foster healthy communication?

• Should you always be honest about your feelings? When I asked everyone in the room if they were ever dishonest about their feelings, every single hand went up! It obviously is a judgment call, depending upon the people involved, and their personalities. With your healthcare team, you need to be honest. With everyone else, the group agreed that you can’t be a constant complainer or whiner. Be selective with whom you are comfortable with and trust to discuss your concerns, problems, fears, etc.

• Keep a journal about important things that need to be communicated, whether it is info to discuss with your doctor, modifications that need to be made at work, or just notes about what you want to talk about.

• Pick an appropriate time and place for a discussion. Trying to talk when one is tired, hungry, or stressed out will be a disaster. Try to be in a relaxed frame of mind, when interruptions will not occur.

• Be respectful of what the other person is saying—this is a two-way conversation. Actively listen to each other, and avoid accusations, finger pointing, name calling, yelling, etc. How and what we say matters, as well as the tone that we use. Avoid negativity.

• Two-thirds of communication occurs through body language. Your posture, facial expressions, eye contact, etc. speaks volumes. When someone rolls their eyes or points a finger at you, what does that indicate?

• Ask for help and ask to help. People want to help, and people need help. Be explicit or give examples when talking about this to help clarify your statements. Ask questions and share perspectives. Try to put yourself in the other person’s shoes. And remember—none of us are mind readers. Not only are you communicating here, you are educating.

• Everyone should show and express their gratitude often. Give complements.

• A hug, kiss or smile goes a long way.

• From experience, I believe that we MSers set the tone and comfort level. If we are relaxed and open, the other person will be too.

• My personal advice to all: show and give empathy, not sympathy.

• Use humor when appropriate. Many times, the subject being discussed can be very sensitive and not funny at all. Or, it is hard to be humorous when you are not feeling well.

• Avoid arguing and be patient. If an argument develops or patience is lost, quit the discussion and regroup later.

• Always try. If it doesn’t work, try something else.

Well we ran over our one-hour timeframe, which was no surprise. But it was a start, and I always say that “Getting started with anything is the hard part.” Now everyone has a framework or some ground rules they can try to use to enhance their communication, support and knowledge.

At the conclusion, I gave everyone a copy of a previous blog that I had written entitled “MSers and Their Loved Ones.” http://debbiepetrina.authorsxpress.com/?p=61

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

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

 


Stuck in a Negative Spell & Attitude

“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

MS Treatments

“What to Take–What to Do?”

August 6, 2012

There is no cure for MS. But there are options available to treat the symptoms, relapses and the course of the disease.

To keep things simplified, there are three groups of treatments, all with a different purpose: Medications, Corticosteroids, and Disease Modifying Agents.

Medications

These are used to treat the symptoms of MS, and the use can be short or long term. They minimize the intensity or effect of symptoms so the quality of life and daily function is more manageable. Examples include antidepressants for depression, baclofen for spasticity, Ditropan for incontinence and so forth.

Corticosteroids

Corticosteroids (“steroids”)—usually Solu-Medrol and prednisone– are used to reduce the duration and severity of a flare-up (or exacerbation, or attack). The administration of these drugs is high dosage over a short term (3 days to several weeks).

Disease-Modifying Agents (DMA’s)

Disease-modifying agents (also known as DMD’s—disease-modifying drugs) reduce the progression and activity of the disease. The FDA has approved ten of them now, and much research is occurring to continue to find more. Most of them are for folks who have the relapsing-remitting form of MS, or for those who have secondary progressive disease who continue to have relapses. They are given regularly mostly by injection over the long-term.

Most people with MS have used drugs in at least two of these categories. Some work for some people and some don’t work at all for others. If a drug is tried and doesn’t work, then something else can be tried. Every persons responds to drugs differently.

Medications and Corticosteroids have been tried and used for decades. Disease-Modifying Agents started becoming available in the nineties. Today, as I participate in online discussions and forms, it seems that almost everyone with MS is on one of these. Patients are strongly advised to get on one as soon as possible by neurologists, and the MS Society.

But taking DMA’s is a difficult regime. There are side effects, require much monitoring (doctor visits, MRI’s, clinic visits…), and they are expensive. While some folks get financial assistance through the drug companies, being a clinical trial participant, etc. many others pay thousands of dollars annually out-of-pocket.

And then the recent news comes on July 17th that a “Study Suggests That Interferons Did Not Reduce MS Progression”.

WOW! Can this be true? After all those years of injections, tests, office visits, side effects, dollars spent…. Now what? And what should a newly-diagnosed person do now about starting interferons?

I have had MS for 32 years and never took a DMA for various reasons. That is my personal decision. Throughout the years I have taken medications and steroids to help me with both symptoms and relapses. However, I would never tell any one not to take them. That is their personal decision.

So, what should one do about the recent news about interferons?

Whenever I have considered any medication over the years I followed these steps and offer them to you for your own consideration:

1.) Make sure you 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.

2.) If you are on a drug, are the benefits outweighing the risks?

3.) There is no magic pill or injection to make MS go away. There are many other things someone can do to manage MS effectively to complement any drugs you are taking. This includes health and wellness (exercise, sleep, stress management…) and alternative therapies (massage, yoga, pilates…)

4.) Doctors aren’t always right. Persons with MS know their bodies best and should have the final say.

Take your time with making a decision. A delay of several weeks or months will make little difference in the overall course of your MS.

It’s common sense, your body and your decision.

www.DebbieMS.com

Massage Therapy: Guest Post

“Beneficial for Many Conditions”

July 27, 2012

I was approached by Melanie L. Bowen requesting me to consider a guest post for my blog. After reading the article about the benefits of using massage therapy during cancer treatment, I agreed.

When reading her article that follows, you can substitute “MS” every time the word “cancer” is used. Massage is an excellent therapy for persons with MS, giving relief for both body and soul. And this would be true for other chronic illnesses/conditions as well.

Using Massage Therapy During Cancer Treatment

Massage therapy is a growing career field, as most people love to indulge in a good massage. Those who become massage therapists usually do so in order to help people relax. What can be especially satisfying for the therapist is the knowledge that he or she is making a real difference in the life of someone who particularly needs extra special care. That person could be aged or suffering from an injury, from stress or from a chronic illness, such as cancer.

There are many complimentary therapies that can be used alongside traditional cancer treatments. Most doctors now support the use of massage therapy to ease the physical discomfort, anxiety and fatigue that often accompanies having cancer. Depending upon the type of treatment chosen and the stage of disease advancement, the physical effects may be severe.

For example, when a person is suffering from mesothelioma, the pain and stress can be quite overwhelming. Massage gives you the opportunity to help alleviate the emotional distress and physical pain often experienced with this diagnosis.

The benefits provided are numerous. Massage therapy during cancer treatment is considered an integrative intervention. Through skilled hands, you can:

• Increase the flow of blood and lymphatic fluid, helping the body to flush itself
• Ease muscle pain from spasms and built up tension and toxins
• Augment the effects of pain medication while stimulating the release of endorphins
• Decrease inflammation, edema and swelling

There are some precautions to follow while getting a massage while treating cancer. Soft tissue areas should be avoided like:

• The tumor site
• An open wound, a tear or an area of skin breakdown
• A radiation site
• An area effected with redness, pain, swelling and warmth

Current medical and professional studies now demonstrate the efficacy of massage therapy in assisting those with cancer in managing their pain, anxiety, fatigue and depression. Sadly, cancer is increasing and many of those diagnosed are going to look for complementary and alternative medical therapies and integrative interventions.

Keep in mind that there are very minor risks involved in using massage therapy during cancer treatment as long as a physician has given the green light. Massage therapy used during this time in a client’s life can truly make a difference in his or her physical comfort and mental state. Without a doubt, this is one of the most rewarding experiences that you can have.

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For MS patients receiving injections for DMA’s, the same precautions should be followed for soft tissue areas.

I was curious after reading Melanie’s article about insurance coverage for massage therapy for MS and did some research. Medicare said they will cover 80% of the cost, as long as the massage is done by a licensed massage therapist who is employed by a physical therapy facility/center. My insurance carrier, Highmark Blue Cross/Blue Shield, will cover 100% under the same requirement! BC/BS told me this is something they just started in 2011.

So it is worth inquiring about massage therapy with your private carrier. After all these years, it is finally getting the recognition and support it deserves from both doctors and insurance companies.

For those of us with MS, massage is not just a luxury for sore muscles, pain and spasms. It is a necessity, and certainly worth pursuing.

Thank you Melanie, for your contribution and efforts!

www.DebbieMS.com

Feet Care, Massage & Reflexology

“Sole & Soul Therapy”

July 16, 2012

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

www.DebbieMS.com