a sort of meh feeling

lately I've been having a sort of disconnected feeling, disconnected socially because I'm still in the process of whittling down my FB friends and at the same time I took a look at folks who used to be my friends by their undoing. I harbor no grudges I thought I'd try to address the latter with my audience. I'm not saying that folks who know me have unfriended me because of my MS per se, I always assume that most folks unfriend me because I always post about my political views and most have an opposing views. Aside from that Does anyone out there believe they might have been "unfriended" or just avoided by your friend(s) after you were diagnosed with MS?

My new War!

My last infusion that was twelve days ago and I'm feeling good for the most part except for a anti-social fit that I had this week. I'm considering deleting my second profile on Facebook because it's more trouble than it's worth. I made that profile to learn and to share information, now it seems that all that happens is I see people denigrating my treatment choice. I take it personally because Tysabri is seen by many as being dangerous because it carries the extra risk of PML Progressive Multifocal Leukoenephalopathy. It's an extra burden that I'm willing to risk it because even after twenty two infusions I FEEL GREAT! I had my little fit because it seems to me that the biggest opponents of my treatment are believers of the liberation treatment or CCSVI. It's very disheartening to me at times but I try to look beyond it. I'm not against any treatment but I come to realize that people will still have their opinions- hence my dilemma. My concentration has been further blurred on FB by OTHER causes, although very worthwhile it has shifted my focus from what I'd made the profile for, no more craziness. Make of this what you will, I'm not trying to argue I'm just tired of bullshit

minor bump

bruised toes

last Friday before my infusion I had a minor fall in my living room, I hooked my long monkey toe around my cane (which was tucked to the side of the couch) I couldn't disengage my toe quick enough and I fell. No big whoop but I thought I'd mention it anyway. My big toe is a bit swollen and I'm just mad because I have to sit out from going to the gym for at least a few days. I might have perfected my falling technique but going to the gym on an unbalanced foot is not worth it.

my monkey toes

it may not be too visible but theres a bruise there

Disabled in the Kingdom

not exactly like the Disney scooter but close enough

My wife and I decided to to accept an invitation to accompany some friends to the Walt Disney theme parks. I have visited the parks ( Magic Kingdom & Epcot ) twice before but I hadn't been to the parks since I became disabled. I knew little of what was in store, I had an inkling that I would be using a mobility scooter, costly as it was it was a life saver. As I have mentioned here before I have always had a love of walking around and sometimes just walking endlessly, Disney without a scooter would have been my undoing so I'm really glad that we went ahead and got it. Along with the scooter I also signed up for a guest assistance card in order to circumvent the long lines, having Multiple sclerosis I am sensitive to prolonged heat. Most rides entrances cannot accommodate the size of the scooter so plan accordingly, thankfully there are plenty of areas to park the scooters and luckily my cane came in handy to help me mosey to and from the scooter.

I have to say that I am impressed with the care that I received from the cast members, and for the most part my fellow guests were accommodating as well (most people see a big guy in a scooter and assume he's just being lazy, I think having my cane and AFO helped). Being disabled shouldn't stop anyone's fun, I am glad that the Disney Corp is so accommodating.

Loss

Adam Nathaniel Yauch (August 5, 1964 – May 4, 2012

On Friday May 4th the artist known as "MCA" Adam Yauch passed away at the age of 47. This is truly a devastating loss for not only the music and Hip-Hop industry but for humanity in general. I remember my brother buying the LP for "Licensed to Ill" in 1986 and we would bounce around our bedroom pretending to rap for what seemed like hours, "(You gotta) Fight for your right to Party" seemed like the best idea I'd ever heard, I was ten at the time and didn't know what they truly meant but you can't argue with wanting to have fun. With the progression of time came newer releases "Paul's Boutique" "Check your head""Ill Communication", the guys grew as artists and grew away from the personas that were mostly manufactured by Rick Rubin. They were becoming husbands and fathers, and in the case of Adam Yauch humanitarian. I mourn the loss of having him be part of this world, but moreover I celebrate him. In all of the songs that I've heard from them I never heard negativity, never heard of killing people. All I ever heard was of having fun, of dancing.

AWARENESS!

With the passing yesterday of Junior Seau I thought I would again bring up a subject that is very important, Suicide Awareness. Having Multiple Sclerosis the subject of brain issues (which is a possible element to Mr. Seau's passing) is obviously something I can relate to. In my case and the case of many MSers the issue at hand involves depression and how it can effect us and hinder us. I say with all respect to Mr Seau, his family, his friends and fans, but this is an excellent opportunity to shine a light on a serious matter. No one should suffer in silence, regardless of the issue, mine is MS but there are countless others that aren't physical health issues such as those that effect service personnel. I shared last year about actor Michael Showers who apparently took his life shortly after he was diagnosed with MS, I didn't know Mr. Showers personally but I know plenty of other MSers. I can say that having (or knowing) people in the same situation is great because it serves as a great support system. You are not alone 1-800-273-TALK or you can message me if you need to talk, I am NOT a pro, but I can listen. 

todays workout

Most of lifes obstacles NEED to be overcome, MS is no different. I should preface that with if it's possible to overcome an obstacle in MS I think you should try to do so. At this time last year I was in the process of joining a gym because I was discharged from outpatient physical therapy. Upon starting at the gym I gauged my comfort level on certain machines since the gym didn't have the same machines as the phys. therapy office.

the treadmill in my gym is similar to this one but has a longer plastic  "handlebar" area to grab  onto

One machine that has turned into a necessity is the treadmill, at the gym my first few weeks I hovered around a 1.5, eventually I was able to progress to a 2.0 for an average of a 10 minute walk. These past few weeks I've been gauging my strength and endurance during my treadmill time and progressed to 2.1 and eventually 2.4, when doing all this I keep the emergency stop with arms length because I have also been increasing my walking time to 20 minutes. So far so good, I'm thankful that I haven't had a relapse or  had any other complications. Today I did a good 20 minutes at 2.4 and walked for .78 of a mile. I'm not a math wiz so I don't know exactly what the 2.4 translates into a per hour ratio but I know I feel great. While I do all of this it is important to note that sometimes dial down the treadmill speed to compensate for my dropfoot.