MSAA offers an online database with resources in ten key topic areas that range from helping you locate a neurologist specialized in MS to finding a Social Security Disability Attorney.
In addition, each of the ten topic areas provides a “guide” designed to explain why specific resources are listed, highlight important questions to ask when contacting resources, and identify next steps.
Try it today! http://resources.mymsaa.org/
As the temperature continues to rise during these summer months there are several ways to help beat the heat and conserve your home energy. Start by trying some of these tips to lower your energy bill and keep your home cool!
The Low Income Home Energy Assistance Program (LIHEAP) helps keep families safe and healthy by assisting families with energy costs. Check in with LIHEAP about energy conservation and low income energy assistance programs. Often in the summer months, those with lower incomes, or individuals with disabilities are offered discounts on their energy bills to help keep their homes cool during the summer months. For information on applying for LIHEAP assistance, please contact your LIHEAP State or Territory agency.
Independence Day marks a day of celebration across the country. Parades, beach parties, BBQ’s and firework finales observed with family and friends are just some of the July 4th celebration traditions. The day is surely one to celebrate as it represents patriotism and the celebration of the Declaration of Independence, the symbol of freedom for our Nation. So this July 4th be sure to celebrate safely and remember what the day represents!
Please note that the MSAA will be closed Thursday, July 4th and Friday, July 5th in observance of the Independence Day holiday.
By Lyle Anderson
The race started out great. But about 15 minutes into the swim portion of the race a freak windstorm blew in. Winds were in excess of 50 mph. For those of you that don’t know an Ironman consists of a 2.4 mile swim, 112 mile bike ride, followed up by a full marathon. As the winds picked up, so did the waves! I felt like I was swimming in the ocean. We had 4- 5 foot waves. All of the swim support that was in kayaks and paddle boards were having to get rescued, as they were being tossed out of their boats. Swimmers were quitting by the hundreds!! I knew this could possibly be the only chance I ever get to do a full Ironman. So I made a decision to stick it out and finish the swim.
When I got out of the water I was expecting them to tell me good job, but we are cancelling the event. However that is not what they said and I was amazed that I had to get on my bike now and ride in these winds (which were now in excess of 60 mph). As I started riding my bike, I couldn’t help but wish I were back in the water. That swim seemed easy now compared to this bike ride. I had to dig really deep to fight off the battle within my mind to quit. For 112 miles I kept saying to myself I will just keep riding until someone asks me if I want to quit. Since that never happened I just kept of going. I finished the bike portion with only 10 minutes to spare to the cut off.
Now all I had left to do was run 26.2 miles. Believe it or not this was the easy part. I felt surprisingly good and knew at this point that I would finish. It was so refreshing to be off the bike. I wasn’t moving very fast but at this point I didn’t need to. We are allowed 17 hours to complete the full event. I finished in 16 hours and 5 minutes. As I ran across the finish line I heard the announcer say “Lyle Anderson from Hurricane, Utah YOU ARE AN IRONMAN.” That phrase still to this day rings in my head like it was yesterday.
Because of this I was thrilled to make it to the final round of the Kona Inspired contest, which provides seven slots to individuals with inspiring stories of overcoming personal adversity for the IRONMAN World Championships in Kailua-Kona, Hawai`i. For those of you who don’t know – the Kona Iron Man Triathlon is like the Super Bowl of Triathlons. This is an event that the best of the best go to. Qualifying for Kona is not a realistic goal for me to try and achieve at this point in my life. But through, the Kona Inspired program, which was introduces in 2012, I have a chance to get there and you can help me. Now through July 8th, 2013 you can vote for my video at: http://konainspired.thismoment.com?x=us-en_kona_821_.
Running and participating in Triathlons has opened my eyes to a whole new world of possibilities I never knew existed before. I realize now that anything is possible with a little work and mental preparation.
By Lyle Anderson
I was born and raised in Richland, Washington. My family moved to Southern Utah in 1993, where I still live to this day. I have been married for 16 years and have four beautiful children. I was introduced to running about seven years ago. After being diagnosed with MS (multiple sclerosis) on my 30th birthday, I decided I still had a few things I wanted to accomplish in my life while I still have the ability to do so.
When I was first diagnosed I could barely walk. My legs just wouldn’t cooperate with me. My eyes weren’t working right either which made things even more difficult. When my doctor first diagnosed me with MS she told me I could be in a wheelchair in 5 – 10 years. Looking back I’m sure she was just trying to give me a “worst case” scenario. I was totally devastated! My wife was pregnant with our 3rd child at the time and all I could think of was my wife’s Aunt, who also has MS and has been in a wheelchair the whole time I have known my wife. I had so much I wanted to do still in my life. I guess this was the kick in the pants I needed to get my life back on track. I started taking Rebif along with steroid infusions. After a few weeks the numbness went away and my motor functions improved.
In 2010 with a little motivation from my father-in-law I ran my first full Marathon. Since then I have completed 7-full marathons, 8-half Ironman distance races, 12-Olympic Triathlons, 7- Sprint Triathlons, 38-half marathons and more 5k’s and relays than I care to list. To top it all off in 2012 I decided to do the full St. George Ironman. This decision wasn’t something I thought I would ever want to do. However, they announced this was going to be the last year for the full race and I didn’t want to have any regrets if I missed it. With the encouragement of friends and family I signed up. The training was way harder than I ever thought it would be. But I took one workout at a time and before I knew it race day was here!
*Tune in tomrrow for Part II of Lyle’s story.
Usually when we hear “stay active” people are referring to some sort of exercise. But, that’s not what I’m implying when I say it, I like to keep my mind active.
And I don’t mean keep your mind active by stressing about what’s going on in your life or how your MS is affecting you that particular day. I mean, test your brain. Play some games online that really make you think; get a crossword puzzle book; or you can play games on Facebook, like I do!
However, if it’s one of those days where you just don’t even want to think too hard, because your head just can’t handle it, get lost in a book! That’s my favorite thing to do! I don’t sit there and worry about what’s going on in my life when I get lost in reading a book that I can really get into.
I can’t even describe how time goes by when I’m doing these things and how I don’t worry about how I’m doing with my MS, or anything else going on in my life. My brain is being active, but not to the point where it’s stressful, it’s relaxing. Something I really enjoy that we do at MSWorld.org is every Friday Night at 8pm ET, we play “Trivia.” One of the chat hosts puts together an hours worth of trivia, and the whole chat room plays. It’s nothing that is a “competition” or makes you think too hard, it’s really fun and gets you thinking!
Of course, it’s always good to stay physically active with MS… that’s a given, but I like to have a workout session with my brain more often than physical workouts! Needless to say, the only physical workout I can endure with out “over doing” or hurting myself is swimming. And I’m not just talking about hurting myself from doing too much, but I have made a fool of myself at the gym because I’m a walking accident!
So since it’s Summer time, take this time to enjoy and get your brain working, but in a fun way!
I’ve hosted many educational programs over the years, where I have had the opportunity to meet many wonderful people, who have enriched my life.
In these meetings, a common theme has emerged – Attitude. Presenters often speak to the importance of a positive attitude. It can have a profound impact on how we feel and handle the challenges we face each day.
One thing I hear often in the field is how frequently our clients take on a variety of challenges with a positive outlook.
One person who stands out is Dan, an MSAA client, that I met at a program. He shared his own story of overcoming obstacles with gusto and motivation. There are many individuals like Dan who come to our programs and share their struggles, as well as, their triumphs. These interactions are what make my work in the field so inspiring.
What a week in the Midwest! There were several programs held June 17-22 where clients had the pleasure to listen to prominent MS medical professionals in Michigan, Ohio, and Wisconsin. Each presented his approach for managing MS symptoms and improving quality of life. MS clients, family, friends, and caregivers were inspired. All attending learned much about the importance of nutrition, exercise, and appropriate medications. Many practical tips were discussed.
At one event in Wisconsin, I had the pleasure to meet Cheryl Vanderloop, MSAA’s Artist of the Month for June. She attended a program and introduced herself to me. She is very inspiring. At the end of the program, I surprised her by opening up our website via a wi-fi connection, where I displayed her work and introduced her to the many in attendance. She received a resounding round of applause. Her smile was infectious.
I urge all of you to attend our educational events. They’re fair, balanced, and lots of fun. Please check out MSAA’s Calendar of Events for a program near you. Also, if you have an idea for program topics please leave a comment below!
I look forward to seeing you during my travels throughout the great Midwest!
Smile!
Scott
Okay, so we all go to doctor’s appointments… and we have to get there early, in order to fill out paper work… and while we’re filling our paper work in the doctor’s office waiting room, we have to try and ‘remember’ everything that we need to write down for the doctor.
So I’m going to share some things that I do, in order to prepare for a doctor’s visit… without forgetting information that needs to be shared.
For starters, I keep a journal. In my journal I keep note of any changes in how I’m feeling or how I’m reacting to medication. It’s also very handy, when I need to write down a question I want to ask my neurologist, and if I don’t write it down right then… I’m going to forget, even if I tell myself that I won’t.
Something I always have on me when I leave the house, (as well as at home saved on my computer), is a medication list. This way, if something was to happen and I have to go to the ER or anything like that, my medication list is always with me.
I can also say that I would be completely lost, if I didn’t program alarms on my phone for upcoming appointments, and to even take my medications! Yeah it’s annoying, but I don’t forget!
Having a list of my medications as well as my journal of how I’m feeling and how I’m doing on medications, etc., really helps when I go to see my neurologist. It also cuts down time that I have to fill out paperwork, which can sometimes be troublesome as I also have issues with Upper Limb Spasticity (in my hands) mainly in the summer months, so it’s not always “easy” to fill out paperwork.
One of the benefits from keeping things written down in my journal is that, my neurologist can see what triggered me not feeling better… like I stated earlier, my spasticity gets worse when it’s hotter outside, so I know what has caused the increase in my spasticity. (Mind you, I live in Central Texas, and it’s almost always hot here… so let’s just say “hotter”… like today’s “Real Feel” is 102 Degrees Fahrenheit.)
Now, I don’t carry around a small notebook with me anymore, but I do use my phone to keep notes on how I’m doing. You have to enjoy and embrace technology these days, as the famous saying goes … “There’s an APP for that.” (MSAA does have a mobile phone app, My MS Manager, which offers a journaling feature) It’s all true.
One last tip, if you’re the type of person to forget things easily, like I am see if your doctor would mind if you brought a voice recorder to your appointment. This will allow you to play back the visit and conversation to yourself when you’re at home. This is especially helpful if your doctor answered some of the important questions you had been waiting to ask.
June is National Fruits and Vegetable month. While we should be eating fruits and vegetables every month out of the year, June is merely welcoming back the garden-fresh produce that we’ve missed all winter long. The biggest part of eating right for summer is listening to what your body tells you about what it wants to eat. As you approach these summer months, do it with fruits and vegetables in your belly and in your fridge. Stock up on vegetables rich in color. Maybe have a bowl of fruit for a snack instead of chips. Encourage your friends and family to join you in your venture towards a healthier lifestyle!
Cantaloupe, watermelon and tomatoes are great fruits to help you stay hydrated. Great summer vegetables include summer squash, sugar snap peas, corn, bell peppers and onions. Eggplant, zucchini and green beans make a great source of dietary fiber.
–Broccoli is a nutritional powerhouse: It is full of vitamin C, calcium, fiber, and vitamin A.
–Carrots are a good source of fiber, which helps to maintain bowel health, and aid in weight maintenance.
–Watermelon, which is especially terrific this time of year, offers a juicy, sweet taste and high water content, while packing in antioxidants, vitamin C, and potassium.
–Grapes aid in the maintenance of healthy blood pressure. Eating the whole fruit instead of consuming the juice contains the added benefit of fiber.
Tips for your wallet: Fresh produce is more affordable when it is in season. Also, look for weekly specials on fresh, frozen, canned, and dried fruits and veggies. At a restaurant, always ask what vegetables, including salads, are available as substitutes.
What fruits and veggies will you be adding to your diet this June?
In today’s world, work tends to be one of the main focal points of everyday conversation. What work you do, how long you’ve been doing it, and what work you hope to do in the future become areas of focus. Therefore it can be difficult when some of these conversation starters touch on a subject that’s a little less defined for some people, especially those having challenges in a job position due to a disability.
Employment concerns and issues can arise for all individuals within the workforce, and when you throw a disease like multiple sclerosis into the mix these issues can cause frustration and confusion. Some individuals have difficulties deciding which work arena would be most appropriate for their skill set and abilities, while others question how long they will be able to continue the work they are currently doing. These are all relevant and important questions to consider, as many find themselves faced with these thoughts. What’s important to know is that work issues are something you can discuss with others so you are not faced with these questions alone. Your doctor, healthcare and social work professionals, family, friends and other resources may be able to assist in this process.
There are also other outlets of information and resources where one can possibly find assistance with employment issues. A Vocational Rehabilitation office is a resource throughout each state that is designed to assist those with disabilities on information and resources regarding employment changes. There is also a resource called the Job Accommodation Network, www.askjan.org that can offer information regarding workplace accommodations which can create greater accessibility to those with disabilities in the workplace. If you’re experiencing workplace issues you’re welcome to call the MSAA Helpline at phone (800) 532-7667, ext. 154 or email us at msquestions@mymsaa.org. Again, though employment issues can be challenging and create many difficult questions, there are potential resources to help you along the way.