Rock Out MS! Swim For MSAA Open Water Challenge

Posted on October 1, 2012 by RD11

After months of planning I am happy to announce that Active With MS is ready to start our mission of being a top healthy lifestyle advocate group for MS patients everywhere. On October 14th I’m returning to open water competitive swimming by  participating in Sharkfest, a mile long open water swim that will go from the San Diego Convention Center to the Coronado side of the Coronado Bridge, to benefit the Multiple Sclerosis Association of America’s pool party fundraiser.

 

To fundraise for this I will be hosting a dinner/concert at Robbie’s Roadhouse Bar and Grille in Leucadia on Oct 12th from 6:30 to 10:30pm. There will be good food, great music featuring the Jesse Cox Syndrum, a silent auction and it all goes to an amazing cause. MSAA is a leading advocate for MS patients helping to provide cooling equipment, mobility aids and even MRIs to patients/potential patients across the country.

 

So come, bring your friends, eat, drink, and help us raise money for MSAA.

Here is my fundraiser homepage which is currently a featured fundraiser on MSAA’s website.

http://support.msassociation.org/site/TR/Swim1Mile/General?px=1548101&pg=personal&fr_id=1100

 

You can learn more about MSAA by going to their homepage at msassociation.org or by calling them at 800-532-7667

 

You can also help by donating something for the silent auction or telling your friends about this event.

 

Robbie’s Roadhouse Bar and Grille is located at

530 N Coast Highway 101
Encinitas,CA 92024

 

No matter how you choose to help thank you.

 

To my fellow MSer’s, stay Active, stay positive, go forth and beat MS.

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Staying Active With Troubled Leg

Posted on March 21, 2012 by RD11

So this past week I’ve had to learn to stay active without the use of my left leg! Before I get phone calls and text messages from family or friends wondering if I’m okay yes I’m fine, I sprained my achilles which on a side note I don’t recommend because it isn’t happy time and it takes a while to heal. So while it doesn’t actually have anything to do with MS it provided me with an opportunity to write this piece because there are some days with MS when your legs can feel useless. Spraining my achilles made it hard and painful for me to walk and consequently harder for me to stay active with MS.

Since walking a lot wasn’t going to be an option for a few days I decided the best place to start would be stretching. I took time in the morning and at night to stretch my arms and legs holding each stretch for at least 30 seconds. If you don’t hold the stretch for at least 20-30 seconds you aren’t actually stretching, you’re just contracting and relaxing your muscles and that’s not as helpful. I don’t want to get injured/ injure myself more in this case so I really find it important to take the time to stretch. Out of habit when I stretch I start from my neck and work my way down just because that makes it easier to remember and I don’t accidentally skip things as much. I try to pay particular attention to ab stretches because the stronger your core is the stronger you can be and leg stretches because throughout the day your legs take some serious abuse whether you’re lifting, running or heck even just walking or standing. I could try to name specific stretches or explain them but I may end up confusing you and confusing me which would confuse you more so may I suggest a yahoo! or google search for everyday stretches. If I find the time and motivation I’ll take pictures doing some stretches and throw them up here.

Stretching is a great start but it only gets you so far. To stay active with MS without my legs I added more dumbbell and resistance cord exercises. Dumbbells can be tricky for me because at times my left arm can’t hold as much as the right. When this happens I combat it by doing dumbbell exercises that require me to hold the dumbbell with both hands and using resistance cords to replace the other dumbbell exercises. If you don’t have resistance cords I really recommend them because they’re lightweight you can use them no matter what kind of day you’re having and they give you a great workout. As an added bonus many of them come with posters or handouts of different things you can do with them.

Last thing I want to share on this topic is that during this time and whenever I have actual MS issues with my leg I do what I can with my leg. When I left the hospital after losing the feeling in both legs especially the left one I set mini goals for myself when I got home. Rob, walk to your car, walk to the mailbox, walk to the street corner, walk around the block and I would do what I could. I listen to myself, when I feel like I’ve got to sit or I don’t think I can go anymore I rest, I lay down, no shame. If I’m feeling the workout and I think I can go more, I push. I hit the brakes when I need to and push the gas when I can. Whether doing what you can is walking across your living room or walking to the next town and back it’s important to have the right attitude and try.

Before I go, a question I have for you is what gadgets/equipment do you have to stay active with? I mentioned my resistance cords do you use those? Do you have other things? Let me know.

However you stay active I think it’s awesome and I’m your biggest fan. Stay active, stay positive, go forth and beat MS.

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Rob’s Diagnosis Part 3

Posted on February 27, 2012 by RD11

On the day I left the hospital the neurologist told me it’d be 3 weeks before specialists in another state could go through my file and send back the results. Two weeks later I got a letter in the mail from the neurologist saying the results had come in and that I had an appointment with him a week later. It was at this appointment that I was officially diagnosed with Multiple Sclerosis, you had to see it coming since this website is called Active With MS. In the 3 weeks leading up to the appointment I learned a lot about MS and actually the more I read the more I thought it was going to be the diagnosis. My symptoms fit perfectly and the neurologist had already told me that had moved to the top of the list of potential things.

Everybody who gets news like this deals with it in his or her own way. Some people don’t ever tell anybody, some people make websites about it, some people get angry, sad, confused, every story is a bit different from the next one. Real quick on disclosure, there are so many things involved in this I’ll make it one of the near future posts, I think its important to have at least one family member or friend you can turn to with this stuff but in general you have to be careful about disclosure. Really consider your situation before disclosing, again this will be the topic of a near future post that will be much more in depth. My initial thought was shock, how could I have a degenerating disease with no cure? My second thought was “I need to tell my fiancée and start building my support team.” I’ll write another post just on that, building your team. I went home and told her and we agreed it was better to have a name of a disease to combat instead of being in the dark still. She told me that she was going to be there with me every step of the way and that we’d get through every challenge together. While this wasn’t an ideal hand to get dealt I reminded myself it could have been much worse.

I didn’t stay at the house very long. I went home, told my fiancée the results and drove up to the National MS Society. My way of dealing with this disease is to learn as much as I can about it and carry the flag against it. When I got to the chapter they brought me in and answered the questions I had, gave me lots of information about the disease, what they do and how I could help. I left the chapter with an orange bracelet that I wear everyday and the mindset that MS is beatable with the right mindset and a few life changes. Getting involved in so many MS related things is my support group, its therapeutic to me. To physically make myself better I started eating better, exercising regularly, taking vitamins to go along with my new medication.

People have their opinions about the medications and vitamins too and I’m not going to preach either way about them but yes I am on a medication, no I don’t know 100% if they’re working but yes I’ll take my chances on them. As far as the vitamins go even though there is no concrete evidence they do anything for MS I would swear the side effects of the medication were lessened on the days I took them so now I take them everyday. I really don’t care how you treat your MS, I just want your goal to be to feel better, to live better, do that any way you believe is right for you. Some people can’t handle medications, some people have blood like Keith Richards. People ask me about what its like to give myself a shot and honestly needles don’t bother me but seeing my blood does. On a couple occasions I actually almost fainted after seeing 1 drop of blood on my abdomen after my shot. Seeing other people’s blood doesn’t bother me nearly as much, which is a little weird, but it’s true. There’s one oral drug out right now with a few more coming down the pipeline but for now I’m fine with my little shot every other day, I just have to remember to avert my eyes.

With all the research I’ve done on MS and just in my experience so far, nothing makes me feel better than physical activity. I had to make adjustments and in the beginning it wasn’t easy to do things that I did before but I’ve gotten to a point where I actually might be overall healthier now than I’ve been in 5 years, I even ran a half marathon in January. Take that multiple sclerosis! Physical activity has helped me with stress, MS fatigue and spasticity. Going from not being able to walk in October to running my first half marathon in January is what inspired me to create this site, start movement for myelin and really make it my mission in life to spread awareness about MS and find other MS patients and reach out. If you don’t have MS I wrote this 3 part diagnosis to give you an idea of what it can be like and I hope you come back here or to other sites to learn more about MS. If you do have MS I hope you’re doing well. My hope for you is that you’ve found the right combination of things that make you feel better today then you did yesterday. This diagnosis doesn’t mean you have to give up on dreams, you are still capable of awesome things. Sure you may have to achieve them in a different way but there’s nothing wrong with that. Find some activity you like doing and go enjoy, test yourself and try and get as good as you can get at it. I look at MS as an inconvenience in the grand scheme of things, don’t let it get the better of you.

Go find your activity and show MS who’s boss.

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Green Smoothie Time!

Posted on February 23, 2012 by RD11

Staying active with MS requires some work, some days require more work than others.  One cool thing though is that there are all kinds of gadgets and information out there to help us out here. Being the information seeker that I am, I spend a lot of time researching people’s tips, tricks, gear, and news related to an active lifestyle with MS then I go test it out to see what I like or to see what works for me. Maintaining proper nutrition is an important aspect to staying Active With MS. One trend that I see discussed all over the internet and in groups is the Green Smoothie.

BeholdTheGreenSmoothie

No need to adjust your computer monitor, it is green.

It took me a while but I have now stopped ignoring the Green Smoothies and decided to give them a try.

If you haven’t heard of Green Smoothies they consist of nothing but raw fruits, vegetables and water mixed in a blender to make a green drink. A google search will lead you to about 800 billion different recipes that all come with laundry lists of health benefit claims. To make one without a recipe just take about 40 percent vegetables and 60 percent fruit add water put it in a blender and presto! Green Smoothie Time! You can adjust those percentages how you like, that’s just the ratio I used but just note that the higher the percentage of vegetables typically the more bitter your smoothie will be. Maybe you like bitter.

As far as the health benefits go I’ve used these smoothies all of 2 days so I’m not really sure I’m qualified to fill you in on the amazing long term effects of these superdrinks but I can tell you that they’re filling enough to where I drink them as a meal replacement and since its nothing but water, vegetables and fruit they are high fiber, and probably pretty low fat and low calorie. Generally speaking then, whatever concoction you come up with it will probably be pretty healthy. I guess there could be those people out there making a banana coconut avocado iceberg lettuce green smoothie but we wont count that.

There are people out there who swear by these smoothies, make them everyday without exception and tell the world the glory of drinking them. This is probably why I ignored them for so long. The green smoothie fanatics remind me of Duke University basketball fans, we get it your team is good now go away. I have a lot of respect for Duke University and the basketball team but the Cameron Crazies ugh… I’m getting off track. Green smoothies are great, they’re simple, inexpensive, healthy and super quick. The ones I made tasted good too. While I’m not ready to write a book about them, tattoo a picture of one on my back or join the green smoothie fan club they’re getting added to the regulation of meals for the week so I can fuel my Active With MS lifestyle.

My question to you today is have you tried a Green Smoothie? What did you think? What did you put in it? Mine was kale, spinach, banana and apple. Sounds weird but it was actually good.

Also to give you a Movement for Myelin update I now have 5 miles down 495 to go with a run coming tonight, not sure how long that’s gonna be but I will post it when I get back. Have you joined the movement yet? Click the Movement for Myelin button for more information.

Hope you’re all staying active, no matter what you do to stay active with MS I think you’re awesome and I’m your biggest fan. Stay active, stay positive, go forth and beat MS.

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Rob’s Diagnosis Part 2

Posted on February 21, 2012 by RD11

In part 1 of this 3 part story, I had just been told that I was being sent to emergency for a possible case of Guillain Barre. I didn’t know what that meant but I was happy to put a name to my symptoms. I wasn’t in the emergency room long before I was in front of a neurologist and he ordered an MRI of my spine for that day, so much for waiting a month. The neurologist started to tell me the list of tests he was going to do, actually the list of tests the nurses were going to do, and I knew I was going to be there a while. At one point I thought he was just telling me a list of all the tests he could name off the top of his head. To get a diagnosis of Multiple Sclerosis doctors have to rule out everything else because there is no definitive neon sign you are here test for it. So after testing negative for about every disease on the planet he was able to narrow it down to an autoimmune disease.

By this time I’d been tested for cancer, stroke, HIV you name it. I was still waiting to hear from the neurologist about my two MRIs when he came back to test for Guillain Barre. The test for Guillain Barre is a lumbar puncture, a large needle that is stuck into your spine to remove spinal fluid for testing. The neurologist that did the LP is a nice guy, when I see him at the doctor’s office I always make sure to say hi to him, but on this particular day I was not his biggest fan. To properly insert the lumbar puncture into my spine it took eight tries, I don’t mind needles but dang this is no ordinary needle and it doesn’t look that hard on episodes of House M.D.

If you’ve never had the amazing journey of an LP I hope you never know how much I’m about to save you if you ever need one. First off the needle is no picnic but they do numb your back up, you can’t get around the needle part but believe me it’s something you can get past. What’s really critical about the lumbar puncture is what you do after the test is done. Lie down and don’t lift your head for any reason for as long as you can. If you lift your head you will get a headache that has no adjectives to explain how awful it is. I’ll get back to this. After feeling like a pincushion/guinea pig/lab rat and only having hospital food for days I told my fiancée I wanted her to sneak me in a diet coke and M&Ms that night. She did and the next morning I felt good, so good in fact that I talked the doctor into letting me go home rather than keeping me there for 2 or 3 more days like he suggested. I just had to come back on those days for a solumedrol IV for my still at this point unnamed autoimmune disease.

Lesson #1 If a doctor suggests that you should stay in the hospital for a few more days, clear your schedule and stay. That night my head hurt, not crazy yet but it hurt. The next day I managed to drive myself to my solumedrol IV and back but by the time I got home that day I was in a lot of pain. A friend of mine came over to see me and I was a mess. I’d never had a headache like I was having and it was just debilitating. I was really happy to have him there but I wasn’t much company that day. I was really confused too because I felt great the morning after the lumbar puncture so what the heck was happening. The following day was the worst day of my life, I mean I felt like I just passed the 9th gate in Dante’s Inferno, abandon all hope ye who enter here. I barely remember the morning because of the crying and screaming to go back to the hospital. Yes, I am a 26 year old male and I cried, hard. I feel bad for my fiancée because she was seeing me in agony, she drove me to the emergency room and they couldn’t put me in a bed fast enough. They gave me a couple IVs to help ease the pain and rehydrate me and actually I was surprised how fast I felt better but I was exhausted. A nurse who wasn’t assigned to me saw my file and came over to my bed. She put her hand on my hand and gave me advice I wish I had when I left the hospital the first time. All she said was “diet coke and dark chocolate.”

Lesson #2 In case of lumbar puncture load up on diet caffeinated soda and dark chocolate. WHAT?! I’d been trying to avoid this stuff since I got out of the hospital because I was trying to eat healthier. Then I remembered my M&Ms and diet coke the night before I was released, I had self-medicated without knowing it, that’s why I felt fine the next day. Why caffeine worked was explained to me like this, imagine your spinal fluid being a pool you want to keep full and the lumbar puncture being a leak in that pool. Your body can only refill that pool so fast, in my case not fast enough. Caffeine helps refill that pool faster by allowing your body to regenerate spinal fluid faster, this is important when your lumbar puncture takes hmm eight tries. The doctor prescribed me some caffeine pills and I was a new man.

If you only get one thing from this post let it be in case of lumbar puncture lie flat, eat dark chocolate and drink lots of caffeine.

I’m backtracking now but the lumbar puncture showed that I didn’t have guillain barre. Now I’m nervous, guillain barre didn’t sound so bad after I had some family do research on it for me. Neurologist comes back and says the MRIs showed 2 lesions on my spine and 3 on my brain. This news just had my stomach in knots, lesions? Between 2007 and these events I had gone to the doctor 3 other things. Once was for a knee injury and subsequent surgery so I don’t even count that. In July 2008 I had pain in my eyes, especially the left, blurry vision that would get better at times and worse at times. The Ophthalmologist told me my optic nerve looked normal under his ophthalmoscope and that I probably got hit in the head and don’t remember. Turns out optic neuritis can’t always be detected with an ophthalmoscope. I don’t blame the doctor but sometimes I wonder what an MRI in 2008 would have showed. In April of 2011 I actually went in to see my doctor because I had lost some feeling in my feet and shins for a few days but unlike this time it went away and wasn’t nearly as bad. With this information the neurologist said it sounded like it fit multiple sclerosis but he assured me the case was mild at this point and he would tell me for sure in 3 weeks after he sent my file to a group of specialists in another state. For the first time in this process I was actually going to have to wait. Three weeks gave me time to learn what Multiple Sclerosis was but something told me that it was going to be a long 3 weeks.

To Be Continued… Stay Active Stay Positive Go Forth and Beat MS!

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Rob’s Diagnosis Part 1

Posted on February 19, 2012 by RD11

As a recently diagnosed MS patient, I’d say the most common question I get from people besides explaining what the disease does is how I got diagnosed. Getting diagnosed with multiple sclerosis can be quite difficult actually because as I would learn there is no definitive test for it. What it takes is a bunch of tests; doctors need to rule out anything else. Tests I’d only seen previously on episodes of House M.D. were ordered for me. For some people the diagnosis process can take a long time, for me it was fairly quick. I’ll be putting up a fairly thorough account of my diagnosis over a couple of posts starting with this one to give you an idea of what it was like for me. Remember that multiple sclerosis affects everyone different so take these posts for what they are, my story.

On September 17th 2011 I was working supervision and cleanup at a back to school dance. It felt like it had been a long day before I even got to work because I felt unusually sluggish. I loaded up on some caffeine and did what I could to snap out of it. About 2 hours into the dance my left foot fell asleep, I’d been standing around a while so I tried to ignore it and decided to go walk around outside for a bit until it came back. Fifteen minutes of walking around trying to get rid of that dang pins and needles feeling in my foot and it wont go away? I’m thinking what the hell! Now I swear it even seems like my right foot is starting to feel the same way. By the end of the dance both feet were completely asleep. I ignore it and tell myself I need to get more rest and whatever I had planned for the next day is just going to have to wait for me to wake up.

The next morning after plenty of sleep I’m annoyed when the pins and needles have not left my feet. They’re not swollen, they’re not blue, what the heck did I do? I let this go for a few more days before I went to the doctor. Couldn’t get an appointment with my personal physician on such short notice but I didn’t mind I just wanted to figure this out. Doctor 1 ordered some blood tests and told me I should talk to neurology about setting up an MRI the following week. He told me to come back if it got worse. This sounded fine to me so I left, the next day it got worse. My foot issue was now a foot, shin and knee issue; especially the left one. Doctor 1 said come back if it gets worse so I scheduled another appointment. It was now Saturday so my doctor’s office was closed but I got an appointment for another doctor in a nearby open office. Doctor 2 seemed to be an a hurry, 2 minutes of examination and he tells me I should try to use a heating pad. Really Doctor 2? I’ve had this thing for a week it won’t go away in fact its moving up my legs and you suggest a heating pad?! I’m starting to get worried but I go home and decide to just wait to see the blood test results Doctor 1 said I should be getting sometime Monday.

Monday comes and I’m checking for the results online every chance I get. Monday night they become available and as far as I can see they’re all normal so as Doctor 1 had suggested I called neurology to set up an MRI. They gave me a date in late October, about a month away. I questioned this a little but scheduled the appointment. By this time I had gotten so used to my weakening legs I barely noticed it, Wednesday morning I was back on notice.

I am by nature non-confrontational but when I woke up Wednesday with feeling going away from my hips down and parts of my left arm I decided the logical thing to do was to drive to my doctors office and sit in the waiting room until someone paid attention to me. When I got there it was clear they were not interested in hearing what I needed and I was really getting on the receptionist’s last nerve. Didn’t realize this at the time but my doctor’s office doesn’t provide primary care on Wednesdays and was essentially closed when I got there but I wasn’t leaving until I saw my doctor. Frustrated with me the receptionist called for my doctor’s nurse to take me back and do a quick evaluation. After a few minutes of questions she left to talk to my doctor, I couldn’t hear what she said but within a couple of minutes my doctor was in a room with me and told me I needed to be driven to emergency to treat a possible case of Guillain Barre. This was good and bad. Good because even though I had no idea what Guillain Barre was I felt I was going to get an answer and bad because I needed a ride to the emergency room. I drove myself there fueled by fear and perhaps a bit of anger and didn’t stop to realize how dangerous/stupid it was to drive when I couldn’t even feel my feet on the pedals. If I wanted to drive, which at this point I didn’t, the office assigned someone to walk me outside and watch me get into a car to make sure I didn’t. My fiancée left work early to come pick me up and take me to the emergency room. Given the frustration I’d felt that morning I felt like I had accomplished something getting my doctor’s referral to emergency that day. At that point in time I didn’t care if it was Guillain Barre or not I knew I was about to get some real tests done and I “knew” I’d be leaving with an answer.

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