Find Out What “Moves” Joe Revello
“It’s all about helping people,” noted MSAA volunteer Joe Revello of Plainfield, NJ. “Whether it’s raising funds, helping at an event or just having that conversation to build awareness, any effort in the fight against MS is critically important.”
Joe, who was diagnosed with MS in 1995, has been an active volunteer in the MS community for more than a decade. Recently, with the help of his sister-in-law, Joe organized a very successful school walk for MSAA and has now joined our newly formed volunteer task force aimed at expanding local, grass-roots fundraising efforts to support our signature programs and services.
But beyond his fundraising successes, Joe’s commitment to helping people with MS continues to grow as he now embarks on a much different and very personal crusade. In fact, you can say it literally “moves” him toward a new level of advocacy.
“Walking has been my biggest challenge over the years,” said Joe. “I can’t walk unassisted, my balance is horrible, and I experience pain in my hands and wrists when using crutches. Using a walker has me bent over, tightens my back and doesn’t allow me to walk as far as I want to. I also tried using a scooter but it wasn’t for me as I wasn’t moving and I didn’t want my physical condition to decline.”
Never shying away from a challenge, Joe knew there had to be a better option to help meet his mobility needs, so he turned to … the Internet – of course! “Believe it or not I typed in the words: ‘Futuristic Walking Devices’ and up came this product called the Alinker. I was immediately impressed by its design and function. The more I read about it, the more I knew this could be something that could change my life.”
Produced in the Netherlands, the Alinker is described as a walking-bike that allows users to sit upright so they are eye-level with their environment. Although excited by his discovery, Joe’s enthusiasm was soon tempered when he spoke to the inventor, Barbara Alink, and learned the product was not yet in production and only available as a prototype. However, Joe and his wife Denise didn’t want this possible opportunity to pass them by and ventured off to the Netherlands to meet Barbara and test out the prototype.
“I was on the Alinker that day for four hours and walked two miles,” noted Joe. “I was not fatigued. I moved at my own pace, independently and could stay connected with my companion. I could have never done that with a walker or crutches.”
Unfortunately, Joe and his wife had to leave the Netherlands without the Alinker. A short time later, Joe obtained his own prototype to use temporarily until the company, Alinker Inventions, could begin the manufacturing process. Through a grass-roots crowdfunding campaign in the Netherlands, the company was able to produce a limited number of Alinkers and Joe became the first United States citizen to own a finished walking bike, at a cost of $2,000 US. When hearing about the company’s plans to establish a similar fundraising campaign to help bring this mobility device to people in the United States, Joe immediately put on his MS advocacy hat and went to work.
“My goal is to make the entire MS community aware of this product,” said Joe. “Obviously everyone’s MS is different and people have their own, unique mobility needs. But I would like to see people who are mobility challenged like me have the same life changing experience as I have had with the use of the Alinker.”
“After training, I can walk using both legs more symmetrically on the Alinker and I have built up muscle where I hadn’t before when using other mobility devices. Plus people now call me the cool guy on the yellow bike!”
Editor’s Note: Please know MSAA does not recommend or endorse any particular product or service. This article is intended for general informational purposes only, and it does not constitute medical advice. For diagnosis and treatment options, you are urged to consult your physician.
To learn more about this product, please visit http://www.thealinker.com/.
One of the hardest things about unexpected change is suddenly having a ton of questions and not enough answers, particularly when you are newly diagnosed with MS. Questions can range from: “what is multiple sclerosis and what are its symptoms?” to “how is MS treated?” to “what does having MS mean for your life?” However, these questions are never limited to someone recently diagnosed with MS.
My MS Journey is a resource for people at all different stages of their life with multiple sclerosis. There is “Just Starting Out” for the newly diagnosed, “Staying On Course” for people who are more familiar with how MS affects their body, and “The Seasoned Traveler” for anyone who has lived with MS for a longer time and may be looking for different information. All three sections of My MS Journey offer a listing of resources including videos and articles to help answer questions as life continues to change around us.
Check out Jessica’s story above for how she felt after being diagnosed with MS.
By Lauren Kovacs
This is a big ticket for those with MS.
We never know what our hand will be. Even frequent shuffling can deal you a bad hand.
Our crystal ball has been smashed. For me thankfully, I had 18 years of a mild MS course. I was able to work, get married, have kids and mostly be like everyone else.
I had been a college athlete and I never thought that being physically active would end. As an adult, I took figure skating, did Irish dancing and clogged. I was always up for something to excel at.
The changes associated with declining mobility are extremely hard. New ways of doing things became an essential skill. Sometimes, there is no way to really deal with the physical betrayal. When it comes to medical equipment, picking fun colors seems to make necessary medical equipment less medical.
Changes can come frequently. Cards are often shuffled and dealt quickly. First, I started needing a cane. No big deal. I bought a blue fish cover for it. A year later, the walker came into the game. I made sure to get one in pink with big wheels and a cool frog bag attached. Then, another hand was dealt. I needed a wheelchair. Not cool. I was not happy.
I again figured a purple one would be fun. Going with devices as non-medical as possible was a good way to deal with that change. I made them extensions of me. A little pinch of personality and a little bling can go a long way. I didn’t fold and stayed in the game.
Last year we took a trip and I needed to bring a walker to use in the cabin. We flew, so I bought a gray one that folded into a garment bag. I used duct tape with butterflies to make it fun.
I really hated the idea of using that walker, but people saw the butterfly duct tape. I was able to enjoy our trip a bit little more. It was still hard to get around, but I felt less disabled.
Making change fun is the only way I can deal with mobility changes. A pink walker, a purple wheelchair or butterfly duct tapes were simple changes that were not medical. Make changes as non-medical as possible, when it comes to mobility equipment. I was dealt a bad hand, but injecting fun is a simple way to make a bad hand livable.
By Matt Cavallo
Multiple sclerosis is an unpredictable disease. I’ve been living with MS for eleven years now and just when I think I am getting the hang of it, something changes and I’ve got to start all over again. When the change is unpredictable, that is when it can be the hardest. This was the case for me when the results of a recent blood test forced me to reconsider my treatment options.
I have been on the same treatment for the past nine years. During that time, my MS was well controlled. My long term plan was always to stay on this treatment. The reason being that I tolerated the treatment well. The only relapse I had during the previous nine years was when I was unable to receive my treatment.
Then came this summer. As I sat across from my neurologist, I knew that something was wrong. He explained to me that my routine lab work concerned him. He felt that my treatment now presented an elevated risk and that it was time to explore new treatment options. I didn’t know how to react. When I came in for my appointment, I wasn’t prepared to discuss changing to a new treatment.
There were many different emotions that ran through me all at once. The first was fear. I was afraid of the unknown. I knew that I tolerated my current treatment and didn’t experience relapses. There was no way to guarantee that I would experience the same kind of positive outcomes on a new treatment. Also, would that treatment have the same kind of efficacy that I had become used to over the past nine years? On the flip side, would staying on my current relapse expose me to the risk of a potentially fatal side effect?
In addition to the fear, I became angry and started to blame myself for my labs changing. I didn’t know what I did that was different. I was in disbelief with the results and wanted another test to confirm the findings. I left the appointment in denial thinking that the test was wrong and that my risk was still relatively low, so theoretically I could continue my treatment without harming myself. I told my neurologist that I needed some time to think about it and scheduled a follow-up in two weeks.
During that two weeks, I found myself depressed. A second blood test confirmed my fears. I found myself at the crossroads needing to make a difficult decision. On one hand, I could continue down the same familiar road I had been traveling for nine years, but with an increased risk of a scary side effect. On the other hand was a new road and I was unsure what the future would hold on my MS journey. Then came my follow-up appointment.
I was nervous sitting in the waiting room. Even though I had two weeks to consider my change in treatment, I really didn’t know what I was going to tell the doctor. I just knew that whatever I said was going to result in change. I knew that even if I continued on my current treatment that there was increased risk and with that would come increased monitoring and a new sense of worry that didn’t exist before the lab results.
Once we got past the pleasantries, my neurologist looked me in the eyes and asked if I had made a decision. Without thinking about it, I blurted that I would try the new treatment.
With that, I felt a weight lifted off of me. I finally accepted that I had to change and the only way that I would be successful would be to embrace and accept that change. However, I did need to experience all of those emotions before I was open to accepting the change.
The thing that I learned from this situation is that no change should be taken lightly. Pasteur once said that chance favors the prepared mind. In my case: I evaluated my neurologist advice, took a validation blood test, researched the recommended treatments, talked to my wife and loved ones about the pros and cons, and in the end made an informed decision. This was not a change I wanted to make, but the unpredictable nature of MS thrust this upon me. In the end, I am at peace with my decision and embracing the road ahead.
*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
By Meagan Freeman
All things are temporary, including darkness.
Butterflies are a wonderful example of this. Look at these incredibly beautiful creatures, fluttering and dancing on flowers like living magical fairies from some other world.
These are some of the most graceful, elegant creatures on Earth, but they did not start out this way, did they? These creatures began as rather ugly caterpillars and worms. They become beautiful after a long period of change.
This period of change is spent alone, in darkness, with no input from the outside world. They depend on no one during this time, only themselves. This metamorphosis, or period of transformation, is one of the most miraculous biological phenomena on our planet.
These creatures completely transform every aspect of their lives, and they do it alone. Lessons of our own can be learned just by observing these creatures. Our period of darkness and transformation begins with our diagnosis of MS. Most of us experience a long period of darkness and crisis from that moment on, lasting for months, or even years. Beginning at the moment of diagnosis, we must completely change our self image. This is a difficult process, and no one can really help us through it. We must resolve this new identity within our own minds, and it takes time.
I often refer to my own years following diagnosis as my “metamorphosis.” I changed entirely, and I am not the same person I was before August 24, 2009. Change is difficult, painful, and uncomfortable. Change is awkward, frightening, and exhausting. But, change is an essential part of life. All is temporary, every single thing in this world. This helps me get through the tough times, because I am reminded that the darkness will not last forever. All is temporary.
The transition from “healthy” to “MS patient” is not immediate, and we should allow ourselves time to adjust to this new identity. After all, we spent decades of our lives as healthy people before we obtained this new label. How can we adjust to this overnight? The diagnosis of MS is made on one specific day, and it is shocking.
After time, I learned to accept this diagnosis, though it still makes me angry, frustrated, and sad at times. The first year after diagnosis was the most difficult, when the mind struggles to accept. Slowly, though…I began to realize that this was reality. This was part of me, whether I liked it or not. What else was there to do other than accept it? I learned to predict my symptoms more efficiently, to understand which symptoms were familiar and which were new.
We each spend a period of time transitioning, accepting, and changing after diagnosis. The most important thing to realize is that it takes time. The way you feel after initial diagnosis: The shock, the anger, the fear…won’t last forever. Your life will go on, and it may even be wonderful. MS does not mean that life is over, rather it means that life has changed. Change is never easy, but it can often lead to great things. Try not to fear the metamorphosis, because you never know how beautiful your life might end up being in the end….
*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.
By Lisa Scroggins
“In this world, nothing can be said to be certain, except death and taxes.” – Benjamin Franklin
I would argue with Mr. Franklin that his famous aphorism should be amended to include the word “CHANGE.” Change happens whether we want it or not, and this is true for all people. However, for people with MS, change, generally, tends to be unwelcome.
Maybe I need to change my perceptions of change.
Maybe, since change is going to occur, I need to change.
You probably know some older people who frustrate you with their rigid approach to life. Those people whose most common complaint is something to the effect of this:
Young people today are shallow and don’t know how to work!
She is such a malcontent. Always complaining about MS symptom this, and MS symptom that. She should just DEAL with it! I’m not even sure that’s a “real” thing.
For me, change in regards to my MS has generally been negative. Changes, especially in the past few years, have meant less mobility. For others, it may mean cognitive difficulties or the loss of another ability. Given the vast array of symptoms presented by MS, there is almost no limit to the loss (DISability) that might be sustained. It’s exhausting, dealing with MS, or as I have written in the past, “I’m fatigued and I’m tired of it!” (Pun is definitely intentional.) I am one of those people who have been dragged into my new normal, kicking and screaming and protesting loudly all the while! Inexplicably, I have recently changed my resistance to change in one small way. For the most part, I get annoyed with the way that many people seem to prefer watching a video for everything. It’s probably related to my learning style, but I much prefer to read about something. For example, when I Googled “multiple sclerosis symptoms,” I got a huge list of links, and many of them were to recordings, a great deal of which were on YouTube, with some to news broadcasting stations and to WebMD. Typically, I would ignore those and look for the links with lists.
But I stumbled upon a new link and a lot of the information there is in recorded videos. The information is new to me, and I find it very helpful. I have actually listened to and watched several of the videos. This particular website was created by a person with MS, and I have found information there that was new: http://www.msviews.org/msviewsandnews4/ I have to fess up: I only listen to some of the videos there and don’t always watch, so I guess I remain stubborn. The website was previously known as Stu’s MS Views and News, but Stu has managed to get a lot of help on his side and his website has grown a lot. There are partnership links there, and you may or may not be impressed by those, but in any event, there is probably something there for you to take in. I really enjoy Dr. Ben Thrower, who is a neurologist and offers a lot of information in a form that people without a science background can understand.
I was diagnosed a long time ago, and have seen many headlines that read as though the misery that is MS was about to end! HUGE breakthrough! Promising treatment! All the excitement has worn thin for me, and I view such headlines nowadays with skepticism. Remembering the time when I was diagnosed means telling you kids a story. It was the early nineties. My resources were limited: the public library, my doctor, and any local support groups. Email was nonexistent, as was the World Wide Web. There were a few national organizations, and they had 800 numbers, and mailed out written publications. I don’t remember when or how I learned about the MSAA, but it was not the first organization devoted to MS that I knew about, even though it was founded in 1970!
The truth is that a lot of change in the field of MS has vastly improved:
- The availability of information
- Treatments: there are more than a dozen treatments available
- Organizations that help patients dealing with MS
- Research into the etiology of MS
Now, there are many organizations specifically formed for us, the MS patients, and information is overwhelming. It can be difficult to navigate and even to discern which information is reliable. The pace of change is brisk, indeed, which I believe is positive for us.
Dealing with change can be done with grace and likely will benefit you. I have changed my perception of videos about MS.
What change in dealing with change will you undertake?
MSAA is excited to announce that, in partnership with HealthUnlocked, we have launched a new peer-to-peer online community called My MSAA Community! This free online forum is a safe place for anyone who has been affected by MS, whether they have been diagnosed or are a care partner, to share their stories and find information and support.
Sometimes when you are going through something personal and you try to share your feelings or your experience with someone who hasn’t been through the same thing, you can find yourself hitting an emotional wall. The person you share your feelings with may be able to empathize and understand what you are sharing to a certain extent, but they may not fully appreciate what you are going through, since they haven’t experienced it themselves. In these situations you can feel like you need to talk to someone who “gets it” and has been through what you are going through.
My MSAA Community is designed as an online community and forum for people whose lives have been affected by multiple sclerosis to find each other and share their experiences as a way of providing support and information. This community allows members to post questions and get answers from others on the forum and contribute to other ongoing conversations.
Follow or join the community at: https://healthunlocked.com/mymsaa
By Stacie Prada
In the last three years so much of my life has changed.
My beyond-two-decades-long marriage was ending while my career took a completely unexpected and welcome turn. I moved to a new place, and I had a few surgeries. Valued in-person friendships were no longer nearby, and they shifted to Facebook interactions. All of my daily routines I had in place no longer fit into my new life, and I spent a lot of time redesigning them. Often it felt like my entire life was tossed in the air and landed scattered on the ground. Picking up the pieces and deciding how to arrange them again took up a lot of my time and mental energy.
Any of these changes would have been big for me, but juggling them all at once took a lot of effort. MS was a factor in this because I strove to maintain my health throughout these changes. My biggest goal was to avoid an MS exacerbation, and, fortunately, I succeeded.
Experiencing change can alter how I view the world, myself, my past, my future, and the people around me. It’s a mental shift from what I thought I could count on to knowing how vulnerable and impermanent everything can be. The diagnosis of MS made me question my body’s abilities and health. I thought my body was strong and healthy. Being diagnosed led me to realize that a healthy and mobile future isn’t necessarily in my control. I can eat right, exercise, and get checkups, and still have no guarantee for good health or the ability to walk in my elder years.
Adjusting to change is a skill I’ve cultivated to save my sanity and bring myself mental peace. Some years ago, my New Year’s Resolution was to “Embrace the things that I resist.” It was a great experience acknowledging when I was resisting things and actively shedding the internal resistance I had to doing them. When I was nervous about running a public meeting, I decided to dive in and just do my best. When I liked a fashion choice that I thought might be too flashy, I decided to try it anyway. When the group sang karaoke, I got up in front of the group with my not-great singing voice and sang my heart out. I knew I might sound terrible or look silly, but I let myself have fun doing it.
My personal challenge that year allowed me to think about and recognize why I resisted things, and it helps to think about it when dealing with change. Most of the time my resistance stemmed from the following:
- Uncertainty for what the next step was or how to decide
- Being afraid that following that step would lead to an outcome I feared
- Being overwhelmed from the quantity of things to deal with at that moment
- Fear of making a mistake, making what I would later judge as a wrong decision, failing, or being judged negatively by others
- Holding on to a belief that I have control over the future, others, or anything other than what I do, say or believe.
Coping with change:
With MS, a lot of change stems from the domino effect of losing mobility, cognition and physical abilities. Focusing on these losses can lead to depression and a sense of doom. When an exacerbation hits, it’s natural to worry about where it will lead and how it will affect the future. It’s all understandable and natural, but it’s also incredibly unsettling, frustrating and just plain hard. I try to embrace changes I’m resisting by doing the following:
- Recognize that feeling unsettled, nervous or fearful is natural. Accept it will be stressful but try to do what I can to minimize the stress.
- Think about why the change is stressful. Does it require changing my life, my relationships, or just my attitude?
- Seek inspiration and motivation from people who have lived through a similar change. What insight can they lend?
- Pace myself. Take on only a few extra tasks each week or month, and reduce some of the things that aren’t necessary for my physical or mental health. Know that my regular life still requires a lot of energy, and something needs to give temporarily.
- Know the deadlines and what’s at risk if they aren’t met. Give myself enough time to do things, but not too much so that it feels never-ending.
- Break down the steps to dealing with change into smaller doable tasks to avoid getting overwhelmed.
- Prioritize based on importance, deadlines, and energy level. If my energy is low, I’ll do the easy tasks for now and the more involved tasks at a time of day when I have more energy. Certain things may also be able to wait months.
- Wait to start until I’m ready to commit. I keep a list of things to do, but I don’t start until I’m ready to do them and complete them.
- Set realistic expectations and ambitious dreams.
- Look forward to something. Whether it’s seeing kids or grandkids grow up and being a part of their lives, traveling, dancing, watching the sun set, or anything else small or large that brings joy.
- Enjoy the path I’m on even when portions of it are difficult. Give myself credit for all of the things I do that aren’t hard because I’ve put so much effort in the past into getting better at them.
- Trust that I’ll do what I think is right for me each step of the way and that it’s enough.
Dealing with change has been a learned skill for me, and it’s taken a lot of effort to cultivate that skill. It’s been worth the effort to reduce my internal stress and increase my sense of contentment. Relaxing into and embracing change has improved my confidence, given me opportunities and experiences beyond my expectations, and made for a much more satisfied and joy-filled life.
*Stacie Prada was diagnosed with RRMS in 2008 at the age of 38. Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/
Every year, the American Academy of Neurology (AAN) and the Consortium of Multiple Sclerosis Centers (CMSC) hold meetings to present on topics of interest to the multiple sclerosis community. This year, the annual AAN meeting was held in Vancouver, Canada in April and the CMSC meeting took place in Maryland at the beginning of June.
After each meeting, MSAA condenses all of the information presented at these meetings, which is meant for medical professionals, to easy-to-read articles to keep you informed about what is new in the world of multiple sclerosis.
Both meetings this year covered a range of topics, but here are a few items highlighted in MSAA’s annual review of these meetings:
- Updates on a sampling of approved and experimental treatments
- Trial results for new symptom-management treatments and programs
- Interesting studies on pediatric MS, risk of MS, and children of parents with MS
- Various other topics, such as gut immunity, the effects of poor sleep, and gaps in public awareness about MS
Read the full article on MSAA’s Latest News section to see more topics presented at this year’s meetings!