Tag Archives: MS communication

MS: Reaching Out for Help

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“The Value of a Peer”

June 25, 2012

When I was diagnosed, one of the first things I did was talk to a peer.  Peers are priceless; they help immensely.  There is an instant connection and understanding, bringing both comfort and knowledge.

I could have never survived my MS if I didn’t reach out to peers, and I love it when they reach out to me.  Even as an old veteran of MS, I still find myself reaching out to peers for help and guidance.

Recently, I reached out to a MS peer for a different purpose.  I contacted Sharon Baldacci, author of A SUNDOG MOMENT.  Sharon has lived with MS for thirty-one years like me, and I reached out to her to review my new book, MANAGING MS:  STRAIGHT-TALK FROM A 31-YEAR SURVIVOR.

She responded to my email the very next day and agreed to read it and do a review.  I was shocked at first at the quick and agreeable response but I shouldn’t have been.  There is a camaraderie that exists between MSers.

Over the next few weeks, we emailed little comments back and forth.  Sharon just sent me her review, mentioning that after all these years she learned something new about an MS symptom she deals with from my book.  I, in turn, learned a few things from her; and I found another MS friend I can share with going forward.

Here is Sharon’s review of my book:

June 21, 2012

When I was asked to review Debbie Petrina’s new book, MANAGING MS: STRAIGHT TALK FROM A THIRTY-ONE-ONE YEAR SURVIVOR, I had to chuckle. I too have lived with this illness just as long and didn’t think it was possible to learn anything new.

Boy, was I wrong. This small, easy to read book is a wealth of matter-of- fact information interspersed with her memories that add credibility. I learned more about spasticity here than I knew and also the word `clonus’ that describes exactly what my weaker leg does sometimes. She adds practical tips for dealing with so many of the symptoms, and side effects of medications. The chapters are broken down into advice for the newly diagnosed, symptoms, grieving, heat, and what you can do about the variety of problems that come with MS. There are chapters about dealing with people (and how they deal with us) as well as what she calls the elephant in the closet – suicide.

She also makes it clear that it is the person with MS that is in charge of all decision-making, not the doctors. The doctors are there to give all the information needed for decision-making. She explains clearly why and how she made difficult decisions for her and her family and how it has worked out all for the best. She strongly encourages everyone to do the same. This is an empowering book that doesn’t sugar coat anything but makes the endless details manageable – from her 31-one years of experience. I felt like I was learning from an old friend over a cup of tea.

This should be required reading for doctors, health professionals, MS patients and their families.

Sharon Baldacci, author of A SUNDOG MOMENT

It’s incredible that the internet exists now to offer forums for peers of any situation to connect with each other.

Free.

Everyday when I give thanks in my prayers, I never forget my gratitude to all the MS peers I have interacted with over the years.

www.DebbieMS.com

What is Multiple Sclerosis (MS)?

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April 30, 2012

“The Misunderstood, Ignored, and Forgotten Disease”

I recently asked the question “How do people without MS react to you?” to an MS discussion group I belong to.  Their responses?  The same I have been hearing for decades:  We feel misunderstood, ignored, and forgotten by so many people.

Why do we feel this way? 

First, 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.  I’m in a wheelchair, but I still look good and completely normal.  If I would use a store’s scooter instead of my own, I would get dirty looks.  I’m misunderstood.

But 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. For persons with MS that do or do not show visible impairment or walking aids, 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.”

When we see these same people again, they forget that we have these symptoms because they are invisible.  If we talk about them, we sound like complainers.  Unless we complain about these things often, who would know we have these problems or that they continue to plague us?  And who wants a complainer around all the time?

Fatigue is the hallmark symptom of MS.  It is a universal complaint by over 90% of MS victims.  It doesn’t matter if the case is mild or advanced.  It doesn’t matter if one had a good night sleep or if the MS is not currently active. Fatigue is always present with MS, 24/7.  Why?  Fatigue exists because MS is a disease, a chronic illness, that causes other symptoms such is walking problems to intensify.  Constant fatigue leads to our moodiness or depression.  So when somebody suggests we need to get out and take our mind off things, they truly don’t understand why a sofa or bed is more desirable to us.

People without MS are often uncomfortable around us because they don’t know what to say or do.  Or because of our moods or a previous bad experience, they are unsure what kind of a response they will receive.  Others just can’t deal with it perhaps because of personal feelings like guilt. Therefore, it is often easier for them to just ignore it.

So, what can we do about it?

We need to be educators, communicators and advocates to everybody, everywhere—beginning with the basic question and a simplified, clear answer.  Forget the boring textbook medical details.  Something like this:

What is MS?

Multiple Sclerosis is an autoimmune, inflammatory disease of the central nervous system, which includes the brain, spinal cord and optic nerves.  That means that potentially anything controlled by the CNS can be affected–such as motor function, sensory function, sight, or cognitive/emotional functions.

It is not fatal, contagious, or congenital.  There is no cure; the cause is unknown. It is generally progressive.  That means that because there is no cure, the majority of persons afflicted (2.5+ million worldwide) will become disabled during the decades of their lifetime with no way to fix the damage.  Current estimates are that 20-25% will end up in a wheelchair.

From the day those of us received our diagnosis, we have no idea what course our disease will take.  What will be affected, in what way or how rapidly will we be affected, and how disabled will we become? MS is unpredictable and uncontrollable; the losses continue and the grieving process never ends.

There are treatments available that slow disease progression, and meds to help with relieving symptoms and shortening relapses.  But they all have side effects. Nothing is available yet to prevent MS or restore most function lost resulting from its damaging effects.  However, there are many things one can do to manage it effectively.

Peer-to-peer, we understand it, share our stories and how we cope with MS. We count on our peers, close family/friends and MS organizations for knowledge and support to help us manage it during our lifetime.

But we would like more.  We want everyone to know and understand what MS is about, not just be aware of MS being something that people walk for or bike for.  The more people that UNDERSTAND multiple sclerosis, the less we with MS feel we’ll be misunderstood, ignored, and forgotten.

Let’s all get started now:  hand, send or post this article to everyone you know.  Do it today!

www.debbiems.com

 

MSers and Their Loved Ones

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“Two Sides of the Same Coin”

March 5, 2012

Both sides are living with it. Both sides have a different perspective of it. For a non-MSer (family, friend…) it is very difficult if not impossible to understand MS in the same way as the MSer because they walk in separate shoes. This is an extremely frustrating dilemma.

People who have MS need help and support; family and friends want to give help and support. How do you build a bridge to bring two towns across the river from each other together?

Communication and education.

In the beginning when a diagnosis is made, most people want to read about MS and learn what it’s all about: What is the cause? The symptoms? The treatments? The prognosis? That’s a normal and a good start, and a necessary one, for all involved. Sometimes a spouse, close friend or family member doesn’t do that or want to do that; then it is up to the person with the MS to find the ones that do, including reaching out to MS peers. Without people support, an MSer won’t survive their illness well.

During the initial education process, the understanding of MS begins to differientiate between both sides. The MSer is experiencing the fatigue, the numbness and so many other symptoms, but obviously the non-MSer is not. This is where the communication can start. The MSer can strap a ten-lb. weight around her husband’s ankle and tell him that’s what it feels like to walk with that leg. Or, she can have him put on a mitten and try to find things in her purse like coins or tissues if she has a very numb hand.

But the non-MSer will encounter two problems. First, how can they help a numb hand or a heavy leg? And second, many symptoms are invisible and it’s easy to forget that these symptoms exist. The MSer “looks so good”, or normal.

It is at this point that education needs to be tied to communication. The MSer needs to speak up in a nice way something like “My legs feel so stiff and heavy, I have to sit down and rest. When you have time, could you…” From the other perspective, the non-MSer can casually remark “You look like you are tired and struggling to walk. Do you want some help?” Or, “when I was reading the book you gave me, there was a suggestion to….do you want to try it?”

My husband will always help me, but I need to ask/tell him what I want or need and get beyond the feeling of “why do I always have to ask?” It is his nature to get frustrated easily and I find myself having to calm him down and direct him as to what to do. For example, if I slip and fall during a transfer from my wheelchair and yell to him for help, he will respond in a frustrated way: “What do you want me to do?—tell me what to do, tell me how to help you without hurting you.” I try to stay calm, tell him to calm down, then tell him what to do.

We MSers need to be educators, and open our mouths in a respectable way (when possible!). In addition, others around us will take their cues from us. If we are comfortable, they are comfortable. We set the tone. But many times we are cranky because we are so fatigued and don’t feel well, so our actions become mean toward our loved ones. They will have to develop a thick skin and remind themselves frequently not to take these mean attacks personally. Quite a huge task to say the least.

During an RV trip to Yellowstone one year, after a very long day of sightseeing and getting in and out of the RV I was exhausted. We came to the famous waterfalls, and my husband kept insisting that I have to get out and see them because I’ll never get the opportunity again. I kept saying I didn’t care if the sky was falling, I was too tired to move and I would look at his pictures later. He kept pushing until I finally exploded and screamed horrible things. We both felt guilty later; he felt bad that he went to see the falls alone and I didn’t go, and I felt guilty that I was so mean and should have pushed myself harder. We both eventually got over it.

A person with MS relates best with an MS peer since they are in the same shoes and understand each other best. Peers can be found online or through the MS associations. Equally important, the caregivers or loved ones also need to talk and share experiences with persons walking in their shoes i.e. their peers. Like an MSer, a non-MSer without peer support won’t survive MS well either.

I belong to a great National MS Society group on LinkedIn where both folks with and without MS have been sharing their questions/experiences. One member whose husband has MS writes a blog with him (www.relativems.com). They write some good material and take turns writing separately from their own experience and viewpoint.

They are a team.

Sometimes it’s hard for us MSers to understand why some people close to us (a mother or spouse for instance) don’t want to read something, or talk about it, or be around us. They can’t get comfortable with us having MS no matter what we do or say. Why is that?

They could be stuck in one of the “adjusting to grief’ phases like denial, anger, bargaining… For instance, sometimes a mother will feel guilty thinking that she was responsible for her son/daughter getting MS. In these situations, if each side can’t talk about their situation together, they will have to find their own way of dealing with these feelings. I had immediate family members who did not talk about MS or support me for years. It hurt. To overcome my grief I got professional counseling to help me accept the situation and focus on the non-MSers who did want to help.