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I Can’t Dance Anymore
“The Transition from Grief to Acceptance”
March 12, 2012
I started dancing when I was three years old, and always loved all types of dancing. My favorite dances though were those of my cultural heritage. My grandparents emigrated from Croatia and Slovenia and so the traditions were instilled in me as early as I can remember.
One of my greatest achievements was when I was accepted into a professional musical ensemble called the Duquesne University Tamburitzans. The longest running stage production in the United States, authentic music, song and dance portrays many Eastern European and neighboring cultures’ traditions. Affiliated with Duquesne University, as an accepted member I was awarded a scholarship while attending college. See http://www.youtube.com/watch?v=LhItCxgX-hg
My MS symptoms appeared noticeably when I was twenty-five, though in looking back, I can recall having some balance and coordination issues while I was dancing with the ensemble. My aggressive course of MS left me with the inability to do anything but walk slowly by the time I was twenty-eight; there was no more running, hopping, skipping, or dancing.
I was devastated. While I was teaching my one-year old son to walk, I was losing my ability to do so.
I attended a wedding on November 20, 1985. That night, I wrote in my personal journal: “Everyone danced tonight but me. Again. That hurts. I love to dance. I can feel the potential movements in my system that would direct me exactly how I should move, but I can’t do it. I’m so frustrated…”
It took a long time to get through first the anger, and then the sadness and depression. But the brain is a powerful organ, and I worked on my perspective. These were the thoughts I began to think about and focus on:
• I was happy that I had the opportunity to grow up with dancing and enjoyed all the years in doing so. So many people do not get that opportunity.
• I found other ways to enjoy dance: musicals, Broadway and Civic Light Opera shows, kids’ performances… Though the show “Dancing with the Stars” can be annoying, I find the actual dancing to be incredible.
• An acquaintance of mine was a ballerina with the Pittsburgh Ballet. Ballerinas can only perform for a limited amount of years. She opened up a dance studio and has been teaching young girls ballet for years. Athletes are in the same situation; their prime years are limited and then they have to transform their skills into something different.
• Most of all, dancing with the D.U.Tambutizans required immense discipline, dedication, concentration and strength. It was those particular attributes that tremendously helped me to survive my MS.
I will be attending the 75th Anniversary Reunion of the Duquesne University Tambutitzans in Pittsburgh, PA during the last weekend in March. I will be visiting my colleagues and long-time friends with this amazing organization, and watching this year’s production of their two-hour show by the current members.
I am itchy with excitement and pride. It will be tears of happiness that I will be shedding as I watch them all do my favorite dance, the polka, and remember the awesome memories and goodness that I got from all of it.
My feet don’t move anymore and I’m okay with that now. But my heart still moves with a good beat, and that’s worth more.
MSers and Their Loved Ones
“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.
Finally, I think we need to be educators and good communicators to strangers. While many people are aware of the word MS, they don’t really understand it. And once again, it’s up to us to set the tone and comfort level.
For example, recently I went shopping on my scooter and needed to try some things on in the dressing room. I found a salesclerk and asked her to help me. I told her that I had MS and couldn’t stand. When we were situated in the dressing room, I casually proceeded to explain in a step-by-step fashion what she should do, reassuring her along the way that she was not hurting me and was doing things perfectly. As time went on, she started asking me some questions about MS and I gave her basic answers. By the time we were done we were pretty good friends, with her adding that the next time I come to shop I should seek her out.
I always say that getting started with anything is the hard part. Educating and communicating with people about MS is hard in the beginning, but as time goes on, it becomes easier.
Knowledge and support are powerful. Both are needed to survive MS or any chronic illness—for both the person afflicted and those that love them. Though the gap between the two sides will never be totally closed, it certainly can be narrowed.
A Day in the Life of an MSer
“What do you do all day?”
February 27, 2012
I don’t work. I’m on long-term disability. So from time to time, the question is asked of me, “What do you do all day?”
Now that’s one of those questions that can be tricky to answer, like the question, “How do you feel?” It depends on who’s asking and what mood you are currently in. It’s a judgment call.
If it’s a casual acquaintance, I give them the basics: I rest intermittently, exercise or swim, walk my dog, read, get on the computer and volunteer when I can. One of those subjects will usually switch the conversation toward another direction. There is no sense in getting into the details of what a typical day is really like; it would probably make them uncomfortable, speechless, and sorry they asked.
Besides, everyone throughout their life has something of their own to deal with. Or, getting too specific about what I do can open up a can of worms. For example, there are the people who want to give advice about all kinds of things, which can get annoying if they really do not understand MS. And then there are the “one-uppers”; they really are more interested telling a personal story that is far worse than your situation.
But once in a while over the years, someone asks me that question in a way with a certain tone that will get a rise out of me. “So, what do you do all day?” Even when I used a cane, then a walker, and now a wheelchair, I usually “look so good” and am smiling and perky. I keep busy, do things and accomplish things without complaining. It’s like they’re implying I shouldn’t be collecting checks from the government.
So what do I do all day? Okay, it is time to get specific. As most MSers prefer, I do things on my own as much as possible to strive to maintain my independence.
• I’m in bed at least eight to nine hours a night but actually only get six-eight hours of broken sleep because of bathroom, muscle and insomnia problems.
• In the morning, it takes me at least an hour to shower and dress myself. In the winter when I have to put on socks and shoes, add another fifteen minutes. It exhausts me and then I need to rest.
• Every time I use the bathroom, it takes at least ten-fifteen minutes. I self-cath, so by the time I wash my hands and everything else, do my thing, cleanup, etc. it’s quite time-consuming and exhausting.
• I exercise or swim everyday to keep my muscles stretched, strong and toned. Afterwards, I need to rest.
• I take my dog for a walk on my scooter to get out a bit and give him exercise. That’s another hour.
• By now, almost 2/3 of my 24-hr day is gone. Add in eating, reading the mail and newspaper, going on the computer…
• Now, factor in doctors. At least annually, I have to see a neurologist, internist, urologist, gynecologist, dermatologist, dentist, and ophthalmologist. In between, stuff happens that require more visits such as a urinary tract infection, allergies or a relapse. More doctors, time, and fatigue. Recently, I developed a urinary tract problem and within a two-week period, I was in an office or lab getting a test on five different days.
• After all those basics of personal care are dealt with there are other things that need to be done, like taking care of insurance forms or claims (BIG headache here!) and paying bills.
When trying to do all this, the inevitable happens. My stiff hands will drop a jar of olives or an open box of Cheerios on the floor. Stress levels go up, exacerbating fatigue and all the other symptoms. Uh-oh, the bladder is now starting to leak and clothes have to be changed.
Now it’s time for a timeout. Then begin again on other things on my to-do-list.
We folks with MS have to deal with things like the fatigue, depression, numbness, and so many other invisible symptoms that make life complicated, exhausting and more time-consuming to accomplish things. It doesn’t matter whether we are in a wheelchair or not. There are kids to raise, chores to do, errands to run, households to maintain, finances to manage. Life without a chronic illness is tough enough. Throw in MS and the time and energy it takes to do a task double or triples. So often, many things can’t get done, get done differently, or don’t get done at all.
THAT is the life of an MSer.
Acquaintances, some friends and even some family who read my book after I published it were stunned, to say the least. Some comments: “OMG—I had no idea…”, “what an eye-opener”, “If I would have known…”
But how do you explain all this? Should you try? Do they really want to know? Again, you are the judge.
If you want to someone to know but don’t want to explain, just hand them a copy of this article.
MS and Diet
“You are What you Eat”
February 17, 2012
For years, many different diets have been promoted to help MS. Some claim to “cure” MS; others claim to stop relapses or prevent it from progressing.
I personally never followed a specific diet, such as the Swank Diet, but I always paid attention to what and how I ate. Eating to keep my weight down and my resistance up to prevent getting sick were my priorities. What made me feel well and not necessarily tasted well also were considerations. Common sense ruled. I knew extra vitamin B’s (for the immune system), C (for my bladder) and calcium (for bones, especially since I was on steroids a couple times per year) were good for us with MS.
In my book, Managing MS: Straight Talk from a Thirty-One-Year Survivor I wrote this as one of My Ten Commandments for managing my MS:
2. Eat properly.
• I follow no special diet, eat what’s good for me and avoid what’s not. Truthfully, I don’t eat a lot. Balance, variety, and quantity are key. Lots of fresh fruits and veggies (low in calories, good fiber). A mix of fish, poultry, pork, beef, pasta every week (balance of protein, omega 3, carbs…). Small meals several times a day (keeps the stomach from expanding). Very limited sauces, gravies, butter (less calories); the plainer, the better (lots of seasoning gives me gas and/or causes me to retain water). Cook, broil and grill at home—I eat out only occasionally. I always drink water, except for a mug of coffee in the morning or green tea later in the day. No dairy products (they cause bloating and nausea for me, and are binding). Instead, I take calcium, and acidophilus for ‘good’ bacteria. I don’t deprive myself of potato chips or goodies—I just put a strict limit on them. No fast food unless I’m desperate. Liquor? I’ve had a cocktail or wine many evenings for years and will not give that up! I enjoy it and deserve it. My doctor tells me to go for it, as long as it’s in moderation.
I’ve been following this regime since my early years of MS back in the 80’s. In those days, I don’t remember the tremendous focus on diets, supplements and scientific research like there is today.
Fortunately, most of what and how I eat is “correct.” Nevertheless, I find myself reading articles and studies with regard to diet and MS more and more; many of the scientific theories and findings seem logical.
There has been much buzz the past few years about Vitamin D deficiency contributing to the cause of MS and the implication for flare-ups and progression. Studies suggest this could help explain why MS is less prevalent the closer you live to the equator. There also has been attention on the negative effects of consuming milk and dairy products. Now, all this interests me personally since I grew up in Pittsburgh where there are few days of sunshine a year; I rarely drank milk or ate dairy products since I was young child. Clearly I had a Vitamin D deficiency, though I guess not consuming dairy products is supposedly a plus. Since I moved to the Phoenix area ten years ago and am always in the sun, my MS has been quite stable and so I wonder if loads of Vitamin D from the sun exposure has contributed to this.
Here are links to two sites that I would recommend taking a look at: http://www.care2.com/greenliving/dietary-tips-for-treating-multiple-sclerosis.html and http://www.terrywahls.com/
It is interesting reading. You may or may not agree with some or all of the content, but what do you have to lose? You are the best judge for yourself.
Do Weather Changes Affect MS?
"The Rain is Coming"
January 22, 2012
I’m a walking barometer. I don’t have to listen to a weather report to know that a change in weather is coming. I can feel it.
My spasticity starts to worsen; my hands, legs and back begin to feel tight. I get tingling sensations and start to drop things. My coordination and balance problems go haywire. And then sure enough within a day or so, it starts to rain.
I hate it when it rains—or when it snowed when I lived in Pittsburgh. Those low pressure systems are killers for me. And when they linger on for one day, two days or more, I become more miserable. My one ‘bad day’ turns into two ‘bad days’ or more. My MS symptoms intensify, especially the spasticity and pain. And the longer it rains, the worse it gets.
I become unmotivated, lethargic and moody.
My husband remarks that my moods change like the weather. I say, “yep, you’re right on that one!” No argument there. But, look out everybody if you are a female and have PMS at the same time…
I don’t have an explanation for why this is. I never researched it. I’ve talked with so many people with MS that this happens to; it isn’t a figment of our imagination.
When I moved to the desert from Pittsburgh, there was no question in my mind that a dry climate with limited days of rain helped relieve so much of my pain and stiffness. Pittsburgh is a soggy, rainy city almost like Seattle. People with rheumatoid arthritis move to the desert for this reason, too. My aunt has rheumatoid arthritis and she moved here over thirty years ago for this reason.
I was talking to a neighbor one day after a horrific thunderstorm passed through our valley. This good-hearted neighbor has four kids with severe brain damage. One child is biologically his, two are adopted, and one is a foster child. He told me the day before a thunderstorm hits, all the kids have seizures. I find that astonishing. There must be a neurological explanation to why this happens to us. I’m going to have to look into this. I wonder what people with nervous system disorders living in the Amazon do. Maybe there aren’t a lot them in this situation; MS is rare down there nearer the equator.
People with arthritis say the same thing when it rains. They feel stiffer and experience more pain. My friends with arthritis who visit their relatives in wet or humid climates are happy to come home to the Valley of the Sun.
I try to keep up with exercise and deep breathing to relieve as much of stiffness and pain as I can during a rainy spell. Sometimes it works, sometimes it doesn’t. Complaining about it to others in our situation doesn’t solve the physical effects, but it does help the mood. There are sure a lot of us out there in the same boat. As they say, misery loves company. Sometimes I just throw in the towel and crawl in bed with a glass of wine and a good book.
The wind has just picked up and the rain is coming. My fingers keep missing the keys as I am writing this and I am becoming very frustrated. I think I’ll just throw in the towel and get that glass of wine. Eventually, the sun will come out again.
Know thy Neighbors:
My Eleventh Commandment
January 15, 2012
If you have read my book, you know about my own ten commandments I follow to manage my MS. I’m adding another one. As I was walking my dog around the neighborhood today, I reflected on how important my neighbors are to me. When I moved from Pittsburgh to Arizona ten years ago, I lived alone for several years since my husband couldn’t join me until he retired. Being a planner and organizer, the first thing I did after settling in was become a co-director of our volunteer neighborhood block-watch program. I hosted the committee meetings and arranged quarterly weekend social events. The result? I immediately met and got to know everyone living around me. I made good friends, I found professionals (a mechanic, an a/c and heating technician, a computer guru, a lawyer…) and I felt safe. My dog Bear and I have walked and patrolled the neighborhood daily for all these years, and if people don’t see me for a few days, they’re wondering why.
When a new neighbor moves in, I want to meet them. Recently, a new neighbor was putting the finishing touches on a new paint job for his new house. I introduced myself and told him how much I liked the color. It was instant rapport!
I love my neighbors, and can count on them if I/we need something, and vice versa. One terribly hot summer morning, my air conditioner stopped working. My a/c technician neighbor came to fix it within the hour I called. Another time when my husband was back East, I accidentally pulled my Christmas tree over with my power chair at ten o’clock in the evening. I was surrounded by broken bulbs and lights! My girlfriend across the street came over immediately and picked it all up for me. If I’m home alone and I need assistance, I have a phone around me at all times so that I can call someone for help. They can get into my house by using the security-code keypad on my garage door. Many of our neighbors now are not only friends; they are like family to us and to each other. They are invaluable to me; and a critical part of my support system.