With MS the F word is FATIGUE! Most people get it but not all and in varying degrees. Sometimes it is very bothersome and many things can trigger it so one feels even worse. Being tired is different than being fatigued.
Sleep takes care of tiredness but not fatigue and that is the problem. This was one of first big symptoms I started to have and it was unrelenting and over powering. I started to miss days at work and even if I got there felt like doing nothing. If it was a warm day then I felt like someone had poured Jell-O in me and poured cement on top of me, I could barely move! NO matter how much sleep I got it didn’t help. I would go to bed exhausted and get up feeling tired and drained. Well in time I got diagnosed with MS and to this day no one really understands why this is such a problem with MS but it is! I can fall asleep anywhere at any time (I try not to of course). I have sat in the DR’s office doing the usual waiting and looking at floor and thinking, “would anyone mind if I just curled up and went to sleep” that’s how it is sometimes. SO through the years this is what I have done to fight this.
I may not win the war on this but one day at a time as with all MS things and eventually I get somewhere. I have learned to live with it but more on MY terms :) By Holly I feel like it’s been forever since I have had any time to sit down and write something for HCJ, between school, school, Little Baby Cupcake, headaches, Muckfest fundraising, zappadoo repair and regular life there hasn’t been much time! Let me explain. Being in the education profession means that I must keep all sorts of certifications and other fun stuff so, I had to take a graduate class on reading instruction. This was a great way to spend my Tuesday evenings for 6 weeks; it made for some really long days, weeks and weekends writing papers. Finally that’s over so now I can work on getting through to the end of the school year. Before the school year ends Little Baby Cupcake should be here!! For those of you that don’t know, my wife and I are expecting our second child at the end of this month a little girl. We’re very excited for her arrival, as is her big brother whom thinks she should be named Little Donnie after me…So we will call her Little Baby Cupcake until we can come up with a name for her…a girl’s name. Along with picking out a name we’ve been getting her room ready and all of the other fun stuff that goes along with preparing for a new roommate to move in. While I have been super incredibly busy lately I did have a nice 3 week visit from my old friend cluster headaches just to remind me that…well I really don’t know why he stopped by we really don’t get along, at all! 25 Headaches in the first week landed me in the emergency room on a nice sunny day. The upside was I got to watch the entire baseball game in the waiting room; the downside was I also got to watch 3 helicopters land at the hospital. If you came to the ER by helicopter you can have my place in line. 8 hours in the ER and I received my steroids so I was all set to go home. Usually a big infusion of steroids kicks out my unwanted guest, not this time he stopped by every few days but has finally gone, I hope. This year Mother’s Day fell on a Sunday, a seriously rainy Sunday. Being the good son that I am I was on grille duty for dinner. My Bioness did not enjoy having wet feet and shorted out. This left me back under gimpy cane power until my replacement part came in the mail. Not having my electronic foot drop device (or zappadoo as my son calls it) for a few days really put me in my place. Since I’ve been trucking around on the zappadoo I have really not had to struggle to get around as much as I once did. I struggled, huffing and puffing around at my carpeted school. I took a few stumbles and crashed into the walls on multiple occasions, but all in all it was a humbling experience and I am grateful that I do have the zappadoo. Through all of this my MS has been behaving itself, I thought when the headaches kicked in I would get a visit from him too. But it seems that Tysabri continues to kick butt and no such flare up. In honor of kicking MS butt all over the place Healthcarejourney.com has sponsored our MuckFest team this year! If you’ve never seen or been to a MuckFest check it out, better yet join our team and help raise some money for research! Be a Warrior Today, Donn Team Healthcarejourney.com is moving up the leader board and is currently in the top 5 for most money raised in the state for this year’s MuckFest Detroit event. It’s a personal choice if you want to do the training for a service dog yourself or wait and have one trained, just look into each carefully. Doing it yourself has many, many rewards though and for us the only way to go. When you get them as a puppy you can start to lay the groundwork for training and developing a close bond for life.
First though get the right breed for the task at hand and research a good breeder who knows what you want the dog for and no health problems. They have to be smart, willing to learn and have an excellent temperament and absolutely NO aggressive tendencies. Not all dogs by any means should or can become Service dogs. Golden Retrievers and Golden Labs are good choices for example. Second, research your area to find the best dog school to take your dog to and take ALL the classes they offer that will head you in the direction of your dog becoming a Service dog. When your dog can pass the Canine Good Citizen test your dog then is really ready to learn all the personal things you want your dog to learn to help you. Ideally if you can find a Service dog trainer to help you train is MOST helpful. Some things to keep in mind 1. Where ever you take your dog for schooling or training it should always be done with Love, Praise and Rewards like some small dog treats and never be taken out of your sight. Your dog should be treated with utmost kindness at all times! 2. Whatever your disability is does not make your dog a Service dog until it is trained and you have the certificates to prove it. Plus if you say your dog is a service dog and it’s not you are breaking the law and you can be charged with a Felony. 3. Gather all the American Disability Acts information you can so you know what your rights and obligations are and the general public’s rights regarding Service dogs. OK now for some of what Candi does for me: 1. She picks up dropped things from the floor and gives them to me. 2. She takes the dried clothes out of the dryer and gives them to me. 3. She opens the refrigerator door and every door in the house, yes the front door too unless locked, opens all cabinets and drawers that she can reach. 4. She can bring me my cell phone to whatever room I am in VERY IMPORTANT. 5. Helps me up off the floor if I fall or just get stuck getting back up from doing something else. 6. Alerts me to sounds to check out (due to MS my hearing is very poor). 7. Knows how to walk next to a wheelchair, scooter and a cane if needed. 8. When not at home walks right next to me (on a short lead) to help with my balance. If I start to waver I just pull up on the leash and that motion steadies me. 9. Helps me in public bathrooms. 10. Opens doors to get inside or outside of buildings if they are the electronic type, even if they are not she goes for it. All the above is done by commands that she is taught so she knows what I want. Well you get the idea and there is much more she can do plus the normal dog tricks. What you need to do is just train your dog where you need the help and what they can do for you. Is mine perfect of course not but she sure tries and we work on her two weaker things. If a dog is just not getting something you want done it usually means you are at fault with the training somehow and that needs to be figured out. Don’t get mad at them though, just walk away and try another time. Dogs can be trained to do the most incredible things and they are the most amazing creatures. All they want in return is to be loved and taken care of :) Holly PS I have had or been around dogs all my life and I have dearly loved them all and all the fabulous memories are such wonderful treasures to keep forever! As I do research each month to try and find new ideas and discoveries in the news about Multiple Sclerosis, I'm finding new ideas difficult to find this month. A white paper published in March by the National MS Society titled Wellness for People with MS outlines the findings from a group of professionals. This excerpt from the paper summarizes their findings. People living with MS identify wellness as a high priority in their lives. They want to know what they can do today – particularly related to diet, exercise and emotional wellness – to feel and function at their best. In addition, they want the support of knowledgeable healthcare professionals who are armed with accurate information about wellness interventions, as they pursue their wellness goals. At a recent meeting convened by the National MS Society, people with MS, healthcare professionals, researchers and society staff summarized what is currently known about diet, exercise and emotional issues in MS; identified key questions to be answered in each of these areas, along with the research gaps and challenges to be addressed in order to arrive at the answers; made specific program recommendations to ensure that people living with MS are getting the personalized support and information they need to achieve wellness; and outlined next steps to move this important priority forward. After reading this paper, I reflect back on my history and on moving forward. I have so many unanswered questions. Obesity has been a major issue in my life both as a child and as an adult with MS. Approximately ten years ago, I underwent a gastric bypass and had extreme success. I was able to lose 200 pounds. The following year, I was diagnoses with MS. However, doctors felt that I probably had been living with the disease for many years. I have been obese my entire life and probably my heaviest between 20 and 30 years of age. Was MS caused by dietary intake? The answers to this question has not been researched enough. Does dietary intake increase relapses? What role does exercise play in MS? Hopefully with new research we will finally get some answers to these questions. Over the past ten years, I maintained the weight loss up until year eight, when I gradually started gaining again. I immediately returned to the weight loss experts, who didn't have enough data past eight years post op to give me any direct answers, and continue to struggle with definitive answers about obesity. So where does that leave us as patients? Here is what I know and what my research seems to make me believe. Eating healthy,nutritious food is essential in managing life with MS. There is no miracle diet in MS. Some believe in a low saturated fat diet, gluten free diets, fruit instead of refined sugar, no diet sodas, low fat dairy products, Paleo Diet and the list goes on. All of this is just very confusing to me. What I've learned is no one diet works for everyone. Keep saturated fats below 15 gms a day. That's a basic fact for anyone. It's really OK to have a piece of birthday cake. Don't do it every day, choose fruits more often. Eat vegetables (easier said than done for some of us). Asparatane, caffeine and alcohol can increase bladder issues if you have those health problems related to MS. However, you aren't going to get MS by drinking diet soda. As for the caffeine, it might reak havoc with your sleep. There have been studies that suggest a higher incidence of gluten intolerance in MS patients and their family members. This doesn't mean every MS patient should be gluten free. Hopefully, my thoughts are are depicting my true thoughts. There are no definite answers. What works or doesn't work for me may or may not work for you. Try things, be open to new ideas. Maybe one thing will work. That leads me to exercise. Move it or lose it seems like a good place to start. That said, for those of us with MS this is not always easy. I know it sure isn't for me. My balance fatigue and general health make exercise very difficult. It also doesn't help with decreasing or maintaining weight loss. Here's my advice. Take one day at a time. Every little bit or step helps. Use friends to help motivate you. Even sedentary movement helps. There may not be a cure for our disease, but it's not fatal. We all have different issues to deal with. Heart disease and cancer are the two highest causes of death in MS and yes in the general public. See we are just like everyone else. Whether it's fatigue, numbness, depression, bladder issues, or obesity, my biggest mantras are: one day at a time, one step at a time, and everything in moderation. I may not have given you five things in the news this month but hopefully this note has helped someone in some little way. Try and take what's hopefully going to be good weather coming soon and get outside and move, even if it's just one step at a time. A BIT ABOUT SUSAN...Susan is a registered nurse who worked in high risk obstetrics at Brigham and Women's for twenty years. She is also a certified nurse paralegal. She is currently not practicing as she is disabled because of MS. She was diagnosed 8 years ago with RRMS and has a daughter who also has MS. What I mean by hidden leaning is that most of the time it is not obvious as to what I am doing. When I DO stairs it is tough. I have to take one step at a time mainly that is due to a trice operated on right knee. Also my knees tend to ‘give’ on me so I have to hold on tight to a railing. Makes me feel a hundred years old for sure BUT can’t take the chance of falling on stairs. Did that once and I know what that is like. I learned a long time ago to ‘hook’ my foot under furniture; cabinets or anything that I could get my foot under if felt a ‘lean’ going too far. Works quite well too. When being seated or getting up like in a restaurant I hold on to my husbands arm and it makes him look so chivalrous too J Same thing in holding those heavy doors open in public. When in a clothing store those nice clothes racks are great to ‘lean’ into and help with balance when I get tired. In the food store those shopping carts are great to push and no one knows WHY I really am pushing it. There again my husband does the shopping I just push the cart J One time he grabbed the cart and said” I will be right back need to get some heavy things we forgot, stay there!” OOPS so I just moved real close to the shelves and put one hand on it like I was reading something all the while steadying myself. In both our bathrooms we have grab bars in the shower and in mine a place to sit down, very helpful! Mine has glass doors and I prefer it that way because I can’t fall through that. Where as a shower curtian will let you fall right out of the tub. Also the sink counter is close to the potty and I use that as a ‘leaner’. When out in public I always go for the handicapped stalls for they are much easier to use and safer. When in a waiting room I pick a firm chair to sit on. So much easier to get off of and to ‘lean ‘ into those arms. In the kitchen I stand right next to the counter so I am leaning into it not hard but just enough to keep me steady. I pretty much lean on everything but it dosen’t look like I am doing it for any reason in paticular. Yes I do the “wall walking” on bad days. Even my dog gets leaned on my me but she takes it as affection kind of a two for one thing there J I also use what motivates me to lean on mentally. But my friends are the best ‘leanees’ of all. When I have really had it with something all I have to do is mention it and I get all kinds of support back, no better LEAN than that J Holly This picture is of Candi my Service Dog and the usual service dog vest she wears with the appropriate information on it, her Gentle Leader over her nose and her leash attached to it. That is my husband sitting next to her in a cable car as we take a ride up the mountain to the ski area. You can read the blog before this one (Service Dogs/Part 1) to read the first part of this two part blog. For me having a Service Dog is heaven on earth but, is it right for you? There are many things to consider. First off do you really like dogs and have you ever had a dog as a pet? If yes then you have an idea of what it takes to be a pet owner. However it is considerably more to be a Service Dog owner. Especially if you plan to train the dog yourself which many do. There are the costs of all dog training classes and courses, all medical bills and shots to keep them current on everything. They must have the best dog food you can afford, a dog bed, vests and leashes, ID tags and current dog license and yes dog toys. Mine also has a doggy rain coat and doggy coat if very cold outside for walks. In other words you need to be able to afford one and take excellent care of your dog. You have a big responsibility in keeping your dog properly managed, well groomed and well behaved especially in public. Only a real Service Dog is allowed in most the places you go to. IF they make a mistake on the floor let’s say, YOU have to clean it up right away. If you keep track of their potty times you should never have a problem. Depending on what they are trained to do for you they should be on a leash right next to you, no wandering around. Never hand their leash to someone else unless they are a trusted person you know well. Remember a Service dog is a still a dog first and they need a lot of love and respect and need to be around you all the time. Besides what they do for you they need their play time, exercise, walks and rest. They like you can have an ‘off ‘day now and then but still need to be treated with love. Develop a strong bond with your dog too and gain their absolute trust in you. Show them that being a Service Dog is a wonderful happy thing. I have seen Service dogs that look so down trodden that it breaks my heart for that is NOT necessary! Here is another big thing to consider, can you by yourself take care of ALL their needs? My husband walks Candi, bathes her, gives her good play time and walked her thru all her dog training classes and does potty detail. Oh I do a lot too but if he passes before me could I still do his part? Yes I could, it would not be easy BUT I never would give her up!!! If I went first she would have him. A family situation is the best for all concerned for many reasons. However if you are alone you better have help available if you need it. If you have never had a dog this might not be a good option for you. We don’t mind the dog hair, the work involved, the expense and all of that. Forget having a totally neat house or worrying what their tail is going to knock on the floor, don’t mind the dog smudges on your vehicle windows or patio doors, the dust or what gets spilled on the floor. I like a clean house but love my dog and her help way more!!!!!! Both my husband and I have loved and had dogs all our lives so having a Service Dog was just the natural next step after I came down with MS, it has been a huge blessing! Next time Part 3 Tips, Tricks and What Candi does for me. Holly It's that time again a new month and hopefully a warmer one. Sometimes it's hard to come up with new things each month to peak readers interest. Hopefully these will touch someone out there in cyber world. 1. Brigham and Women's Hospital (my old stopping grounds for twenty years) is doing a study regarding genes and the environment as it relates to MS. The study does not require you to go into Boston and involves a saliva sample. The link below will provide you with more information and allow you to discuss what it entails with their research nurse. My daughter and I will definitely be looking into this as results may help her children. http://dejager_lab.bwh.harvard.edu/wp-content/uploads/2012/11/FAQ-Genes-and-Environment-in-Multiple-Sclerosis.pdf 2. While writing this information, I will try to say things in a bipartisan way. Keep tract of the news regarding Social Security Disibility Funding. There are many theories out there, that say the funding will be empty by 2016. Get involved. As I write this, I am an independent who believes both parties have great ideas. Just hoping one of these days, they will work together. For me, I couldn't survive without this benefit. This is a brief article from the Associated Press dated February 12,2015. Urging the U.S. Senate to Ensure Continuation of Disability Benefits February 12, 2015 In early January, the U.S. House of Representatives passed a rule that has caused a great deal of concern in the nearly 11 million Americans – including many with multiple sclerosis (MS) – who rely on Social Security Disability Insurance (SSDI). The rule makes it more difficult to transfer funds between Social Security programs further threatening the soundness of SSDI which is expected to become insolvent in 2016 (largely due to long-term demographic trends including an aging workforce). If Congress takes no remedy to address these barriers, SSDI beneficiaries could face benefit cuts of up to 20 percent by the end of 2016. The average monthly SSDI benefit for someone with a disability is $1,140, just over the poverty line and often enough to sustain only the basic necessities of life. Immediately after this House rule went into effect, the National MS Society – in partnership with about 50 other national disability organizations – sent a letter to all members of Congress about our concern. On Wednesday, the Senate Budget Committee held a hearing titled, “The Coming Crisis: Social Security Disability Trust Fund Insolvency.” Witnesses included Acting Social Security Commissioner, Carolyn Colvin. The Society and other disability advocacy organizations again joined forces in a statement for the record, urging Congress to expeditiously allow for easier transfer of money between Social Security funds. A temporary shift of Social Security’s incoming revenues to the Disability Insurance fund – called “reallocation” – will extend the fund’s solvency for almost two decades without cutting coverage, eligibility or benefits – and without increasing taxpayer contributions. Congress has made similar shifts 11 times in the past, almost equally increasing the percentage of Social Security revenues going into one fund or the other. Under reallocation, the solvency of the overall Social Security system stays the same, with the combined funds remaining fully solvent through 2033. 3. National MS Awareness week is March 2-8. Try to be a part of this, even in a small way. Go to the MS Society website for ideas of how you can get involved. 4. Does coffee protect against MS? If interested in learning more about this, the Amercan Academy of Neurology will highlight this at their annual meeting in April in Washington, D C. There are many additional articles on this subject and the abstract of study can be found on the National MS Society web page. 5. Health Allies. Stay tuned for this amazing launch. Susan Looking for something to do on a cold snowy day? If you are like me and love to read but have a difficult time managing a book, then consider a fantastic program for free books on tape. The Perkins School for the Blind sends you three or so books on tape at a time. They have thousands of titles to choose from. The program services anyone with a disability that makes it difficult to read in print form. Once you fill in the appropriate paperwork and qualify for the program, the school sends you a free reader that you pop the tapes into. When you are done listening to the audiobook, you just send it back in the mail free of charge and then the School will send you your next three books. The following guidelines are for Massachusetts residents but most libraries in other states have similar programs. Service Eligibility Guidelines Library services are available for Massachusetts residents who meet one or more of the following eligibility guidelines:
For further information check out: http://www.perkins.org/library Trying to stay warm in Boston! Limitless Lizzie #MS #multiplesclerosis Taking better care of yourself does not have to be a daunting task. It is a game of experimentation. Baby steps of trying out one thing and then the next. There will be setbacks and disappointments when a hoped for treatment or self-care regimen does not work for you, but with experience, this just becomes part of the process. A journey in learning your particular body in a very intimate way. Since being diagnosed with multiple sclerosis four years ago, I have tried a number of diets to get my body to its optimum functioning. Many started off as promising and then, sometimes suddenly, no longer seemed to work for my body. Recently I was all fired up about the Wahls Protocol. I was not seeing the results I wanted being on the second stage of the diet, so after several months I modeled the diet Dr. Wahls is on herself, Wahls Paleo Plus. And then I felt relapse symptoms coming and I developed this crazy chronic migraine. The migraine has lasted a month now. I experienced some vision disturbance and a loss in sensation on much of the right side of my body. But my vision is back and the rest seems to be clearing. My hunch is that the large amount of coconut prescribed on this diet, a common migraine trigger, may not react well with my body. So I have dropped back down to Wahls Paleo and am experimenting with a possible food sensitivity by cutting out coconut (I tapered off of it over two weeks.) This has been my biggest disappointment to date. There is so much positive talk about the Wahls Protocol. Dr. Wahls has improved so much herself. And so many other people with MS have too. But, like with everything, and particularly with MS, I have found that one size does not fit all. Where I have found solace in my disappointment is with the acknowledgement that Dr. Wahls crafted her diet by experimenting for years with what her own body responded well to. There is a science to what foods to eat and why but as far as what one body needs that another may reject, that is individual to the person. And I have also found that if there is an exception to the rule, I will be that exception! I was tempted to go off the diet altogether and binge eat corn chips, rice cookies and grapes but the reality is that I cannot be bitter or resentful towards Dr. Wahls or my own body. My body is telling me something and I may not like what it has to say because it is “ruining” my plans, but it is yet another reminder to honor my body and honor my journey. This diet of eating 9 cups of vegetables a day is bringing me health and vitality I have never experienced before. I wished I felt better currently but I fed my body junk for so many years, I cannot expect that I can revamp it in just a few months. This will be a process just like it all is. Maybe my body can’t handle coconut right now but will be able to after a year on Wahls Paleo. Maybe it is not coconut at all and was some other undiscovered trigger. Little by little I will chip away at what works best for me. I’d love for your support on my journey and I would love to offer you the same! Please leave comments below if you have experienced anything similar or have advice for others like me. Blessings! Emily Royce #wahlsdiet #wahlspaleodiet #wahlspaleoplus #multiplesclerosis #MS Written by Susan Sheehan As I read through all the MS information on the web, I thought I would bring you some interesting tidbits (at least from my perspective as someone living with MS) from my readings:
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