A Letter from a Friend

Dear friend,

I am sorry to learn of your recent MS diagnosis. My heart cannot truly grasp the emotions you must be experiencing. I imagine this new chapter of your life has been quite scary and frustrating for you. Please know that you have a community of advocates behind you cheering you on.

I have seen firsthand how an MS diagnosis can take you on a wild emotional roller coaster ride that you never asked to be on. My mother was diagnosed with MS back in 1996. Advances in research and educational information about MS were much different back then. She wasn’t told that every person’s MS journey is unique and can look totally different than someone else’s. As a family we had no idea that MS didn’t look the same for everyone who was diagnosed with it.

As you deal with being newly diagnosed, I’d like to share with you a few words of encouragement that I wish someone had given my mom.

Your story as an MS fighter is completely unique to you. Try to stay away from searching online and get your information from reliable sources such as your doctor’s office and MS organizations like this one I’m writing to you from. Also, staying positive is extremely important as you navigate through this uncharted territory. Remember, toxic emotions release neurotoxins into the body. Additionally, being mindful of the type of food you put in your body goes a long way. And Lastly, never be afraid to ask for help, and never be ashamed to advocate for yourself.

Friend, I want you to know that I think of you often and wish you all the best as you learn to live life as someone who has been newly diagnosed with MS. MSAA is rooting for you, cheering you on, and doing everything we can to make a positive impact in your life and on the entire MS community.

We are here for you, and we care about you.

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Coping With the Diagnosis of Multiple Sclerosis

By Meagan Freeman

Hypervigilance: “Abnormally increased responsiveness to stimuli, and scanning of the environment for threats.” (The Free Dictionary, 2014.)

The longer I live with the diagnosis of MS, the more convinced I become that the most difficult and life-altering consequence of this disease is my constant awareness of its existence. I have relapsing-remitting MS, and the very essence of my disease involves periods of relapse, with severe symptoms that affect my entire world, followed inexplicably by periods of near remission.

This is something we slowly learn to live with, this uncertainty, but it never becomes normal. It is almost like being robbed of our innocence, our ability to feel at ease is taken forever. Even in periods of relative remission, we are followed by a dark cloud of uncertainty.

This state of alertness is designed to protect us from threats and danger, and it serves a much-needed purpose in those situations. When we are in an acutely dangerous environment, we must have the ability to respond. Our heart rates increase, our respiratory rate increases, our blood pressure rises, and our pupils dilate to allow us to respond to the impending destructive force headed our way.

What happens when we are in this state of alertness and vigilance for an extended period of time? In the case of multiple sclerosis, we are in this state for the rest of our lives.. Never again (without an absolute cure) will we feel utterly at ease.

Extended periods of hypervigilance will eventually lead to secondary problems. The main issues become anxiety, insomnia, fatigue, and social withdrawal/seclusion. Many MS patients begin to withdraw from normal social circles, becoming so overly-focused on the disease in exchange for formally enjoyable activities. This experience can be even more devastating than the physical symptoms.

In my own life, I found that I would wake up in that early morning haze, just barely conscious from my sleep, feeling peaceful from my last dream, and immediately upon opening my eyes it was as if a voice would scream into my ear: “YOU HAVE MS!!!!!”

I would feel my heart start to race, I would sit upright, and the crushing blow of diagnosis would sink in yet again. This experience repeated itself daily for the first couple of years post diagnosis. It was very hard for me to communicate this experience to anyone I knew. I had no close friends with MS, and I did not believe my family would understand.

Soon, I became obsessed with scanning my sensory experiences, looking for a new symptom. Each day, there was something new. A new buzzing sensation, a new numb area, a new area of skin that felt “sunburned” and painful, and several times, new onset of blurry and dim vision. I have lost much of my vision in the last 5 years. I went from having 20/20 vision 5 years ago, to 200/100 today due to repeated bouts with optic neuritis.

When we live with daily fear of new deficits, we change. That feeling of “what new symptom will I wake up with tomorrow?” How do you live your life? How do you plan your work? Your children’s activities? Your driving? Many of us like to carry on like brave soldiers, but in the end it is sometimes better to plan for the worst and be happy if it isn’t that bad after all.

Here is the good news: You can learn to manage this issue. If you find yourself staying home rather than enjoying your normal activities, losing sleep worrying about MS, feeling tremendous anxiety, or any other life-altering symptom, get help. Sometimes it is as simple as finding the right support group. Sometimes, individual or group counseling is helpful. The point is, don’t just suffer alone needlessly. And most importantly: Don’t feel like you are “crazy.” You aren’t!

Sometimes, I just want to hear reality, don’t you? I want to hear that I am not insane, that this experience is real, and that others are going through similar experiences. Connecting through mutual struggle is something I find incredibly necessary in the case of any chronic condition, especially MS. I am hopeful that my sharing of my own experience will help someone out there having a particularly difficult day. Reach out, because you are most definitely not alone in your experience.

*Meagan Freeman was diagnosed with RRMS in 2009, at the age of 34, in the midst of her graduate education. She is a Family Nurse Practitioner in Northern California, and is raising her 6 children (ranging from 6–17 years of age) with her husband, Wayne. She has been involved in healthcare since the age of 19, working as an Emergency Medical Technician, an Emergency Room RN, and now a Nurse Practitioner. Writing has always been her passion, and she is now able to spend more time blogging and raising MS awareness. She guest blogs for Race to Erase MS, Modern Day MS, and now MSAA. Please visit her at: http://www.motherhoodandmultiplesclerosis.com.

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What Should I Say?

Someone you know has just been diagnosed with multiple sclerosis. You’re not alone if you are one of the many people that aren’t sure how to approach this situation. ‘What should I say?’ Or ‘what can I do?’ are questions often asked and contemplated by those surrounding an individual who has been diagnosed. Unfortunately there is no specific script or dialogue mapped out that can guide this interaction, however, there are some things to consider when communicating about MS. Being mindful, respectful, and considerate of others’ feelings and sensitive to the circumstances are good starting points in this situation.

If you’re not familiar with MS and do not understand the disease, this is ok. MS can be a challenging condition to absorb information about and there is a significant learning curve when it comes to educating oneself about the disease. It’s not something to be learned overnight, so knowing this going into the situation can help reduce stress and expectations. Telling the other person you’re not sure what MS is but showing interest in how they’re feeling and learning about the disease can open this communication exchange. Sometimes just saying ‘I’m here for you, and if you want to talk I’m happy to listen’ can make the other person feel comforted knowing they have support if they need to reach out.

Many people may feel pressured to not say the ‘wrong thing’ or worry if they don’t react in a certain way when hearing of an MS diagnosis. This can sometimes circle back to your relationship with the individual who has been diagnosed and how you’ve interacted and communicated. You may already have an idea of what would be helpful for them to hear or to not hear in the situation. Your relationship with the person has not changed, so maintaining a balance of support and a matching bond as before can help steady this novel circumstance. Validating their feelings and the symptoms they talk about experiencing can help guide the conversation; be sure to listen and engage with them so they know they’re being heard.

Often the person diagnosed with MS may need time to process the news of a diagnosis, and this may lead to them subsequently distancing themselves or refusing help from those around them. You can’t force someone to ask for or accept help, or push them into disclosing their feelings. So in these instances telling them ‘I’m here if you need me,’ and ‘I care about you’ can be a support in itself—and knowing they have supports in place when needed can be reassuring to those diagnosed.

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Managing Multiple Sclerosis: How an MS Diagnosis Affects More Than Just the Patient

 

By Gayle Lewis, Ph.D.

When thinking about the idea of “managing MS,” more than likely you immediately think about the patient and how he/she is dealing with, incorporating, accommodating to, accepting, grieving…and having many other reactive and thoughtful coping styles for getting used to being diagnosed with multiple sclerosis. Certainly in my work, this is something that I focus on regularly with my patients: how to help them manage their MS. Whatever that might mean for the individual.

But managing MS is NOT JUST ABOUT THE PATIENT. It is simultaneously about the microsystem surrounding the patient, including partners and other family members. We can consider that “managing MS” needs to be looked at more globally, relationally and more systemically than just individually. That the trauma of MS diagnosis has many fingers of whom is affected and therefore who has to manage it.

My work more often than not involves discussions about my patients’ respective relationships with the people in their lives, particularly if a partner is involved and always when there is no partner, but the wish for one remains. Many relational areas get covered in sessions, but thematically, I hear over and over again the feeling of or actual act of being rejected; the reasons given are either directly stated to be because of the patient’s MS or indirectly communicated that MS has interfered so substantially in the relationship, the situation is no longer viable. Then there are the rejections that occur in which the partner/family member/friend remains as a figure in the patient’s life, but creates enormous distance between themselves and the patient, with the space between them being filled with uncertainty, anger, resentment, loss, sadness, disconnection and the like…feelings felt by both patient and their “people.”

And while I absolutely empathize with patients who feel rejected/are rejected by their “people,” I also have great empathy for the “people,” who are the ones patients rely on, who become the caretakers, who are tasked with increased responsibilities they may not be prepared for nor wished for when they got involved with said-patient. They didn’t sign up for this! Managing MS is NOT just about the patient, as I said. I work with people whose partners have had very strong reactions after a diagnosis of MS was given: some may reduce or stop sexual intimacy; or become increasingly snappish and intolerant when the patient struggles to do tasks at home that were previously rote and done with little effort, like removing dishes from the dinner table and bringing them to the sink; increasingly spending more time out of the house and away from the relationship, finding the patient’s symptoms too difficult to tolerate and too frustrating to face regularly; in some cases a partner may even leave the patient after diagnosis never to be seen from or heard from again. In one case a partner telling the patient that he needed to break up because he could not deal with her MS, even though she was asymptomatic and, in a meeting with the doctor (requested by this boyfriend), the doctor presented a very optimistic picture of the patient’s likely path with her MS. That boyfriend apparently did not want to pay attention. He was mostly concerned that the patient would end up in a wheelchair and he would have to take care of her, which he did not want to do anytime soon.

In all of these examples people are reacting to a situation (MS diagnosis and its sequelae) in ways that speak to how awful and traumatized they are feeling about what is going on. These are not the only examples I have; there are ones in which partners step up, learn about MS, specifically their partner’s MS, where they are supportive in loving, generous ways, when they actively participate in their partner’s treatments and step into not out of what is happening. But even those “angels” have to face and deal with the trauma of being with someone with a progressive, chronic illness. No one is immune from the impact of that. I frequently see or hear about relational pathology as couples/family members adapt to an MS diagnosis. But, I also see that many of the partners or family members willingly participate in treatment or get their own treatment or even join a group with others who have a person in their life with MS and are having difficulty managing what the diagnosis means to them.  All of these latter tactics can be very constructive…and all are a process, as is managing MS…it IS a process that is evolving and ever-changing and one that needs to be open to the idea that it’s NOT JUST ABOUT THE PATIENT.

*Gayle Lewis, Ph.D. is a psychologist and psychoanalyst in private practice in New York City, Associate Clinical Professor, Department of Neurology, at NYU’s Langone Medical Center, and Staff Psychologist at Juilliard’s Counseling Center. Additionally she is a graduate of both the American Institute for Psychoanalysis and the EDCAS program at the William Alanson White Institute. She specializes in the treatment of trauma, eating disorders and individuals with Multiple Sclerosis. See www.drgaylelewis.com

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Getting a Second Opinion When You’ve Been Diagnosed with Multiple Sclerosis

So when I was diagnosed with MS, a general Neurologist diagnosed me. Everything was so hectic at the time; I was just trying to understand what was going on … and why I needed to get IV Steroids…

I had never heard of MS, so I was trying to find out everything I could about it. Once the initial shock wore off, I had multiple people ask me if I had received a second opinion. At the time, I was getting aggravated, wondering why everyone was in denial, when I was just trying to cope w/ the changes going on in my life.

I finally decided to get a second opinion, not only from a different neurology office, but also from an MS Specialist.

I can honestly say, that was the best decision I had ever made. Come to find out my general Neurologist was intelligent, yes, but didn’t know as much as my MS Specialist did, and it turns out I was being over medicated on things…

I honestly don’t think I would be where I am right now in living with MS, if I hadn’t gotten that second opinion, which others were suggesting I do. I later learned that a lot of people get a second opinion, or want to see a Specialist in the MS field to ensure they are receiving the best care possible.

I know some people who have had more than 2 or 3 opinions on their diagnosis, and I’m glad I only had to make one change in neurologists, rather than keep on searching.

It’s very odd to think back and see the difference in the opinions of my previous and current neurologist. While they are both very well educated, they just treat their patients differently than one another. Which, in this case, was a VERY good thing. (Did I mention that my diagnosing neurologist stuck me SEVEN times, yes that’s right SEVEN times, to get my spinal fluid for a lumbar puncture aka spinal tap.)

I think all patients should exercise their patient rights… if you aren’t comfortable with your current neurologist (or any physician for that matter) you have a choice to find someone you are comfortable with. It’s a VERY important matter, considering your health is in their hands, so to speak.

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Caregiver Recognition

By Matt Cavallo

I remember the feeling to this day. You know that sinking feeling in the pit of your stomach when something is happening that is outside your control. I was lying in my hospital bed, my wife and family surrounding me looking hopelessly as I drifted in and out of consciousness.  The entire time I was thinking, “What did they do to deserve this?”

Everyone was handling the news differently. My dad told me that he met some people with MS that were hiking mountains and playing tennis. My mom was at church everyday holding community prayer to find a cure for her son. I even had a friend tell me that drinking Pedialite would regenerate spinal fluid after the spinal puncture somehow.

Then there was my wife, Jocelyn, standing steadfast by my side. Friends and family came and left the hospital, but she stayed each minute. As I looked at her, I believed that the hopes and dreams we had for raising kids and enjoying the family life were dashed at twenty eight years old. I was wondering if I was even capable of having children with the Transverse Myelitis rendering me without function from the waist down.

Eight years later, Jocelyn is still by my side. Through each MS exacerbation, treatment and therapy she has been there always. At times, her role as my caregiver has been a challenge. When I had my cervical fusion, she had to help me with things like bathing and getting dressed. She was providing my care while taking care of a two year old toddler and a newborn.

There will always be challenges for those who care for a person with a chronic illness. There are also resources that can help. Even though Jocelyn and I have achieved a pretty normal life despite living with MS, we are always looking for information to ensure this quality of life continues. A great resource for care givers is the Spring 2004 Motivator article, Caring. Caring provides helpful tips and resources such as safety, diet and stress for those caring for a person living with a chronic illness like Multiple Sclerosis.

Last week, my wife celebrated her birthday and each year I am more and more amazed with her. All my fears back in that hospital bed have disappeared because I know that she is there for me. We were able to accomplish all our hopes and dreams and today are living the family life we always wanted.

Happy birthday, Jocelyn! You are an amazing mother and caregiver. I don’t know where I’d be without you! Thank you so much for being there every day and providing the support and care I need to help me in my fight against MS.

At the MSAA, we would like to hear from you. Please take this time to comment and thank the person in your life that has been there for you on your journey.

Matt Cavallo

For more information about My Story, please visit me at:

http://mattcavallo.com/blog/

*Matt Cavallo was diagnosed with multiple sclerosis in 2005. Matt is an MS blogger, author, patient advocate, and motivational speaker. Matt also has his Master’s degree in Public Health Administration. Matt is the proud father of his two sons, loving husband to his wife, Jocelyn, and best friend to his dog, Teddy. Originally from the Boston suburbs, Matt currently resides in Arizona with his family. To learn more about Matt, please visit him at : http://mattcavallo.com/blog/

 

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Matt’s Introduction

By Matt Cavallo

Hello and thank you for checking out the MSAA blog. My name is Matt Cavallo and I will be contributing a bi-monthly blog to the MSAA. Since being diagnosed with Multiple Sclerosis in May of 2005, I have dedicated my life, work and education to helping others live well with this devastating disease. My goal of this blog is to draw upon my personal experience to discuss relevant topics and resources for persons living with MS, as well as, for their caregivers.

My journey with MS started in 2005. At the age of 28 years old, I had an acute onset of Transverse Myelitis (TM). The onset of TM claimed my functionality from the waist down. I was unable to walk or go to the bathroom on my own. Six months later, I lost vision in my right eye due to Optic Neuritis. Following the bout of Optic Neuritis, I had a cognitive loss which dramatically affected my memory and word recollection. Finally, in 2010 I had a suffered a fractured C6 vertebrae, which resulted from damage left over from my TM onset. I had to undergo an emergency cervical fusion to prevent becoming a quadriplegic.

When I first started experiencing symptoms, I was depressed and afraid. I thought that at 28 years old my life was over. I would like to say I handled it better, but I didn’t. I pushed away my family, friends and even my wife, Jocelyn. I was sure that the hopes and dreams that Jocelyn and I had together were over because of my condition. I wasn’t sure that I would be able to have kids because of the TM and even if I could still have kids, I didn’t want them to have a sick dad that couldn’t participate in their life.

Today, I am happy, healthy and feeling great overall and am doing things that I never thought was possible when I was first diagnosed. Despite having MS for eight years and the complications that go along with it, I am living my dream. Following my diagnosis, I completed my Masters of Public Health Administration and now work as a consultant in hospitals across the US to help practitioners better service patients like myself. I also penned my personal memoir, The Dog Story, which has been tremendously well received globally by patients, as well as, caregivers who can relate to my story.  Today, I am the proud father of two boys, Mason (5) and Colby (3). The most important thing to me is that I am able to be a father and even coached Mason’s baseball team this past spring.Matt's blog

Today, I have partnered with the MSAA because I believe that we can make a difference in the lives of persons living with Multiple Sclerosis. I will be writing a series of blogs that focus on maintaining a great quality of life despite having MS. My blogs intertwine my personal experience with MS with resources, programs and links that I have found helpful. I intend this blog to be interactive. Please comment, ask questions or suggest topics that you would like to learn more about. We are on this journey together and together, we can make a difference. Thank you for taking the time and for supporting the MSAA.

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