Category Archives: Spotlight

Rare Disease Day

Rare Disease Day

Today, February 28th, is Rare Disease Day. It’s the day to recognize and increase the general public’s awareness for these diseases. Honestly, in the past, I would have given very little thought of this day. Of course, I would have felt awful for the people with these diseases and offered up a prayer for them. And then, I would have moved on with life.

Well, ironically, I have been recently diagnosed with one of those “rare” diseases. This past fall I was admitted into the hospital for stroke-like symptoms. The doctors diagnosed me with a complex migraine causing one-sided numbness and weakness. And that was that. It was about a month before I regained full feeling and could walk normally. Crazy, right?! I spent months (with very little improvement I might add) trying different medications, physical therapy, and seeking opinions from different doctors. This past week I met with a headache specialist, who confidently stated I met all the criteria for Hemiplegic Migraine. It is a rare and severe form of migraine disease. Side effects can include severe headache, one-sided numbness, one-sided weakness or paralysis, balance issues, visual aura, dizziness, nausea/vomiting, sensitivity to light & sound, slurred or stuttered speech, confusion, decreased consciousness, or even coma. It does act similarly to a stroke, but the symptoms are temporary and CT & MRI images are normal. However, HM has been confused with stroke and MS quite often. There are two types of HM: Familial and Sporadic. A person with familial HM meets all the criteria for HM and has a family member who also has been specifically diagnosed with HM. An interesting tidbit: Through research, doctors have discovered gene mutations linked to HM. The subtype of FHM depends on the type of gene mutation. Anyways, a person has sporadic HM when he/she meets all the criteria but does not have a family member with HM. There is no cure for HM. It is treated with both preventive medication (i.e. anti-convulsants, anti-depressants, etc.) and abortive medication (NSAIDs, narcotics, etc.) Please note: Due to contraindications, the migraine medication triptans should be avoided when treating HM. As with any other form of chronic pain, medication and procedures will only accomplish so much. One must learn to manage the pain through lifestyle changes, diet, exercise, yoga/meditation, pain psychology, etc. While these changes won’t take away the pain, they will most likely decrease the pain and the anxiety/stress levels. Life will become brighter as time goes on.

Thank you for taking the time to read this and for spreading the awareness of rare diseases!

Awareness for Hemiplegic Migraines

Advertisements

Spotlight: Yoga Studio App

20130407-013112.jpg

Okay, I’ll admit it. For years I was one of those people who thought yoga was just plain weird. I couldn’t understand why people were raving about a “so-called” workout, which consisted of twisting your body into painfully odd shapes while being perfectly quiet. No offense, but I thought you had to be some crazy, “new age” hippy to enjoy that “so-called” workout. Well, I was wrong, very very wrong. I started getting the hint when pretty much every chronic pain management books I’ve read highly recommend yoga as one of the best workouts for people with chronic pain. I was stubborn though. I liked my exercise routine. It kept me fit, and I usually felt pretty decent afterwards. I was convinced that it was working for me, or so I thought…

Wii Fit actually introduced me to my first yoga poses. I liked them; I felt “good” after them. But a whole workout of yoga poses? No way! Well, those hints kept coming from my pain management research. Out of curiosity, I started doing more yoga poses on the Wii Fit. They definitely loosened up my tight, sore muscles (dang Fibro!) I finally gave in and bought a beginner yoga DVD. After the first time I tried it, I remember saying I felt like I had a good workout but I was calm & relaxed too. I had no idea those words could coexist! I found myself doing yoga a couple days a week on a regular basis, and then it happened: I am doing it every day! Yep, I’ve become one of those crazy, “new age” hippies. Okay, maybe not that crazy 😉 And I feel wonderful! During my yoga sessions, I can actually sense the oxygen-rich blood rushing through my body to oxygen-deprived muscles. My muscles are more loose and less tender. I’ve seen a decrease in my overall pain levels. Plus I’m more calm 🙂

To expand my yoga workouts, I decided to do some investigating into Yoga Apps. Granted I’m still a newbie, but I wanted some variety and the ability to advance in yoga poses. I looked at a bunch of apps but finally decided on the Yoga Studio app. I absolutely love it! This app has over 280 poses, ranging from beginner to advanced. There are pre-made live sessions, with choices of level, duration, and focus. You can edit or create your own session, depending on your needs or taste. It has a crisp, clean design and is easy to navigate. I don’t know all the techy mumbo-jumbo, but both the pre-made live video sessions as well as your video creations flow seamlessly due to something called “video stitch.” It even has a calendar where you can schedule or record your workout sessions. Needless to say, I highly recommend this app. It’s definitely worth the $2.99.

I’m not saying yoga is for everyone, and it’s definitely not a “fix-all” exercise solution. Btw, I don’t just do yoga; I also have a aerobic/cardio workout based on the advice of my medical team. I encourage you to do your own research and talk with your doctor about possible exercise programs. So, here a few questions for you to ponder: What types of exercises are you presently doing? Are they physically beneficial? Do you find them enjoyable, or at least, pleasant? How do you feel during and afterwards? Tired? More stressed? Refreshed? Invigorated? Here’s to an enjoyable workout!