I CAN BE A REAL ASS SOMETIMES

I've made a horrendous ass out of myself yet again, I went to the cinema with my wife and her sisters. Shortly after sitting down I heard what appeared to me to be a small baby cooing and making noise. After the movie was over and we filed out I was complaining to my group about the noises And asking "who would bring a baby to a movie?", that is when my wife directed my attention to a very young disabled boy in a wheelchair. The only reason that I mention my selfish and uninformed behavior is to point out that circumstances like that might happen ALOT and as much as I try to be enlightened with a bit of pressure I too can be an impatient asshole. I just hope  that the grumbling I was doing didn't affect the young child's afternoon.  It's clear that I know I lost my cool and I should have waited before I made ANY kind of remark. To the boy and his mother I can only apologize NOW in this form and again apologize if my words ruined their movie

Just being there

I was informed this week of a new Facebook program being implemented regarding users who post messages or content that could be seen as suicidal in nature. click here , Considering that I have MS and most of the folks I communicate with do also, depression is too common in the MSer community. Another thing to add onto that is the upcoming holiday season and the fact that it tends to be an overwhelming time for many. I have written about depression before, a very talented actor who was diagnosed with MS took his life previous post, regardless if you have MS or not, the holidays can be too much for some people we should have open ears

remembering the weirdest stuff

Having cognitive issues can be funny at times, this past week I was trying to explain MS and my current level of functionality to my cousin. In the process of explaining I couldn't remember PML  (Progressive Multifocal leukoencephalopothy) for the life of me I couldn't remember PML,  Meanwhile yesterday I was watching an old Val Kilmer movie and I recognized a character actor from the 80's, I wanted to look up the actor and I took a stab at his name William Atheron  And it turns out that I was right. I am amazed at the general nonsense that the brain can store but at the same time it can draw blanks on very important issues.  

100 post wrap-up

according to my blogspot dashboard THIS will be my 100th post and I thought I'd share something a little out of left field. Lately I've really been anti-social, the only setback with that is that I haven't attended my in-person MS Support group for the last three months. Aside from going to the gym I just don't enjoy being around people at times, It's really a shame, in the meantime I try to keep myself informed online (re: MS). The next meeting is in January and I do plan to attend that one..

sometimes hanging out alone is ok, making it a habit is not good 

Aside from my bouts of being a recluse I do try my best to include myself through family members or through Facebook, although I have to admit that sometimes I do feel the urge to just turn off the laptop and just hole up somewhere non-digital. What do you think?

just my usual

I tend to feel odd sometimes because I never know what I should share.  It's usually a draw between sharing info or trying to motivate in some way. This week nothing unusual has happened and I'm thankful for that, I sometimes wonder what my myelin look like close up. The best way to explain myelin to someone not in the know is describing like an insulated wire or electric cord, and for MSers like me that cord is damaged and
since I've been feeling good, never telling what'll be a good day and what'll be a bad one.

"regular" 

"damaged" myelin

re: handwriting atrophy

just a quick mention since I noticed that my original posting gets a lot of hits. I have a revised opinion on the matter, I don't have conclusive proof that my handwriting was directly changed, (since I can't read my MRI). Thinking on the matter (no pun intended) I believe that it's just a case of falling out of practice, I mostly type, there's not too much handwriting that I need to do

Wrap up and some food for thought

Thanksgiving is almost upon us and I've become introspective. I continue to be thankful for good progress and for limited pain these past few months, I had some shoulder pain a few weeks ago that was caused by me slumping my shoulder. I use that instance as a reminder to remember to walk tall (cane included), and for the most part I feel great. I'm thankful for my body continuing to remain balanced (frontwards/backwards at least) After the run-in with shoulder pain I had to struggle to remain motivated,  at the end of last week I accidentally forgot to take my morning pill and vitamins, I really didn't feel anything wrong through that day but the next day I felt as if my life was in slow motion. I'm thankful that the situation there was easy to fix

I'm also thankful that I can continue to be there for friends on Facebook, aside from games, Facebook is a great tool to spread awareness and to motivate. I may not be THE go to guy on FB but just being there is ok with me.

It didn't occur to me until now, (a few hours after I posted this) I'm really just thankful that I'm at my current level  of disability as opposed to being further incapacitated, it may sound odd or even cruel to my fellow MSers but I don't intend it that way. Like everyone I'm just trying to power through (both to show that achieving a sense of wellness is possible, to fellow MSers) and for myself being ambulatory is a good thing, self esteem -wise and safety-wise.

Feeling groovy

I thrive on boredom, when my body isn't in pain it's a Great thing! I mention the boredom because since I'm not in pain it must mean that I'm getting better right? Well that's the tricky thing with MS or at least my MS. I started out 22 months ago with a walker and limited mobility, with my treatment and therapy I have progressed to a cane, an AFO (ankle foot orthotic) and have become a lot more ambulatory. I have been thinking about that a lot lately, I'm doing my best to be a greater example to some folks, mostly in how I "try" not to be judgmental, try to keep open ears for my friends on Facebook, "being there" is very important to me considering what we go through having MS, the depression can destroy a person. I just want to help, don't have to be a doctor to do that!

in light of my previous post

rather than just rely on my motivational artwork only I have to remember to take a cue from the old Nike Slogan and Just do it. What I mean by that is I have to remember to Be more energized when I do my daily duties. All though it might be difficult, I should do my best to leave footprints in the sand and not Buttprints. Considering that it's my MS that I'm talking about, having Energy might sound tough but I believe it is do-able. If the millions of other MSers can do it then I believe I can do it to

I continue to get better or rather have less difficulty at the gym, so thats a pretty good accomplishment. My new goal is to continue with the same amount of energy and "gusto" throughout my day

fun with fonts

I have to apologize, I have been writing at a snails pace since the readathon. I have just had my attention pulled into different areas recently. I was reading in the Erase MS mailer about Teri Garr and how she is making a difference by her speaking engagements and as a member of the board of Directors for the Nancy Davis foundation. It got me to thinking about what I have been doing or to put it more directly, What MORE can I do? it's not that I'm trying to outdo people here but I look at a fellow MSer like Ms Garr as inspiration. One thing that I'm fond of doing is making little illustrations through the 'Paint' feature on my laptop, mostly taking fonts from online sources and typing out inspirational ideas or thoughts to help others. I just wanna try to do more sometimes.

toot my own horn?

I like sharing on this blog, the fact that I share information makes me happy. When I'm offered the opportunity to post or guest-blog at another blog I take advantage of it. Last week an original posting of mine(not featured here first) was featured on the Erase MS blog. I shared my own experiences kind of like I do here. It's nice to be recognized for something you do but in the long run I just try to share here just to try and speak with my fellow MSers, (I'd say commiserate but that involves pity and I don't like that) I also try not to get a swelled head, offering guidance to someone who was just diagnosed (last week or whenever) doesn't make a an MS Yoda it just makes me a possible friend (to someone).

http://erasems.org/news/2011/oct/20/multiple-sclerosis-manly-disease-guest-blog/

my readathon retrospect

well first and foremost I had fun, that should be the key ingredient/motivation for anyone to take on this challenge. It takes a certain amount of discipline to do this as well. I just double checked my stats, I lasted two hours longer on this challenge than I did in last April's challenge, that's not terribly important but the only reason I brag about it is in having MS I'm very prone to fatigue. It's a miracle I stayed as alert as I did for as long as I did.

I didn't read my WHOLE book but I got damn close to it. Out of the book I chose two stories, "Rita Hayworth and the Shawshank Redemption" and "The Body". It helped me visualize especially since these stories were featured as movies. Of the two I enjoyed "The Body" most. It involves the adult recollections of Gordon Lachance and how he and his friends set out to see a dead body just before Labor Day in 1960. I have quite a few other King books which I think might be next on my reading list.

To my fellow Read-a-thoners I say see in six months!

To my fellow MSers, keep safe and painfree and keep reading!

read-a-thon post 6 I'M STILL HERE

In April's readathon this was about the time I started to get cross eyed and tired.. I have found away around that, Starburst jellybeans!!

Re: my wonderful book, I am really enjoying this book, King has added a depth to these characters (in both Shawshank and Stand by Me) that the movies couldn't fully represent. I have just gotten to the part where the boys have to outrun a freight train. Coming up on Sweet 16!!

The Body (continued)

so I had previously mentioned The Body swerves into a substory written by the Gordy Lachance character

as I continue to read it is explained the Gordie wrote in in college because he was writing about his own brother. I easily get confused so I was glad that this was explained to me, from the two that I have read so far both seem to be centered near and around the fictional town of Castle Rock, Maine. ok, enough jibbering, tah tah

The Body

in the middle of "The Body" aka Stand by me, I must say I am really enjoying this story, for the most part it is pretty much like the movie, as I continue to read I have stumbled upon a "side story" that Gordon Lachance writes as an adult. Confused at first but it gives you insight on what the character felt. I only say this because I assume that (just like the movie) the "Gordy" character is writing the story as an adult.

Aside from thinking that I read slow I really haven't had any difficulties. It helps that both of my books (so far) were also movies with narrators, so when I get bored I can always imagine Richard Dreyfus is speaking the words. Almost at the 12 hour mark GO GO GO!!

read-a-thon post 5 almost dinner time

as I have previously stated I read Rita Hayworth and the Shawshank Redemption, part of Stephen Kings Different Seasons, it was a good read, the only little bumps were some minor changes the movie makers made in their movie. I decided to skip Apt Pupil and go straight to The Body. It to was made into a movie but so far it seems that Rob Reiner and the screenwriter haven't strayed from King's story. I thought I would put in some pump up music, http://www.youtube.com/watch?v=KQ6zr6kCPj8&ob=av3e See you soon!!!

read-a-thon post 4

having fun with my book, for all intents and purposes I'm done with "Shawshank" I might be adventurous and jump out of sequence and read "The Body" (Stand by me). I was reminded or should I say encouraged by comments I just read for my previous posting, I should remember that this is not a race, this is for my Fellow MSers and to "merge" my MS world with my Reading world. Best of luck to all my fellow readers out there!

http://www.msassociation.org/?gclid=CNKkuNT__KsCFQPs7QodHTBOmg

and the Nancy Davis Erase MS website which I have guest blogged for them in the past
http://erasems.org/

updated 40 minutes later


I tiptoed around the end of that book and took some time to review the main blog. I've decided to start on "The Body" next

read-a-thon post 3

I'm slowly plugging away taking my MS into consideration, the story is short but I'm a slow reader MS or no MS. But I'm near the end, so far the book is giving me a broader depth of the movie. One thing that I do like that movie changed was the character of Red being an older black male while in the book he sounds like he's white (from his red hair), not being critical, just love Morgan Freeman in that role

 I'm enjoying a warm Florida fall day and I've had some hummus and pita chips for lunch.

read-a-thon post 2

getting into the "Rita Hayworth and the Shawshank redemption" and I'd thought I'd pause. I've seen the movie version of this story dozens of times it's one of my favorites, but it's just interesting to see the depth of the story and see the elements that the film maker left out, I'm just kicking myself for not having done this earlier...
.... I should have a snack!

Fall Read-a-thon post 1

it's that time again, to enjoy the fun side of reading, For this go-round I've chosen Stephen King's "Different Seasons" I haven't gotten terribly far considering that we're only an hour into the read-a-thon. The first part is the basis for a well known movie "Rita Hayworth and the Shawshank Redemption", I', having fun with the subtle differences between the story and the movie.

I'm trying to be generous with my reading times because of my cognitive issues (ie I might have to re-read a sentence). Well, back I go!

my readathon update

less than two days away from the start of the readathon and I'm feeling good. I'll be doing this for Multiple Sclerosis; both to bring awareness to the disease and to remind folks that although we might have cognitive issues and vision difficulty we can still enjoy a good book. 

thick sucker

a little worn but still good

As far as my choice is concerned, I've mentioned that I'll be reading "Different Seasons", I thought that I'd need a back up book (Because the goal is to try to read for 24 hours, I was just perusing the outside of the book, that sucker looks HUGE, I know I can do it though. I plan on doing my snack shopping tomorrow, nothing like some chips while ya read!.

Mid-October update

I continue to forget my cane and walk away from it into other rooms, it doesn't scare me so much I just see it as a sign that my brain wants to re-adapt and move along. This week my wife and I are with friends who are visiting from out of state, we're in a condo enjoying different, yet similar scenery (we live in Florida) we visited the Yuengling brewery and had a chance to sample some of the product.


unrelated to my excursions I have decided what book(s) I would like to read during the read a thon that I have mentioned in previous posts http://lookingatmyms.blogspot.com/2011/09/taking-part-in-read-thon.html. I plan on read Stephen King's "Different Seasons", one of Kings best it includes Rita Hayworth and "The Shawshank Redemption" and "The Body" which Stand by Me was based on. I like to participate in the readathon for the challenge of it as well as trying to bring awareness of MS and the MS community to the book blogging world and bring awareness of book blogging to some of my fellow MSers. side note in the unlikely instance that I'd finish my book I have a grouping of King books as secondary choices. Trying to read and bring such awareness to it is really close to me, a few months after I was initially diagnosed with Multiple Sclerosis I had developed retro-bulbar optic neuritis, (can't find the older post :(  ) and after the effects of the Optic neuritis subsided I decided to celebrate my reading. The read a thon challenges two things in me that I have/had difficulty with (memory/cognition and vision) the Readathon is slated for October 22nd weekend.

Attn: MSers and Comics fans

I came across some articles about a new comic book that got optioned for a movie, the comic is about a boy who has MS he is granted a wish, he chooses to live as his favorite Crime Fighter "Superior", I tried my best to get this comic today but wasn't successful.(the comics are pretty popular due to the writer) I was really intrigued by the premise especially since I can sympathize with the boy. From what I know the comics are supposed to be a 7 issue run (they just released #5) I will wait a few months, the issues are going to be released together in hardcover for about 16 dollars. http://en.wikipedia.org/wiki/Superior_(comics)

http://www.amazon.com/s/ref=nb_sb_ss_c_1_13?url=search-alias%3Dstripbooks&field-keywords=superior+comic&x=0&y=0&sprefix=superior+comi

progress report

I'm not having a relapse but thanks to my night tremors I have some tightness in my left leg (my effected leg). Pair that with a digestive traffic jam it pretty much meant no gym for today (even though exercise aids in digestion)

Aside from this minor roadblock I think I'm making progress in regards to my treatment. Most days I can maneuver around my house w/o my cane (not for too long and not long distances), I've gotten used to getting up from the couch and realizing that I left my cane in another room, so it's a slow "Frankenstein walk" over to the cane

taking part in the read-a-thon

I am again taking part in Dewey's 24 hour readathon . This is an event that celebrates the love of reading and blogging or just discussing said book through social media. I took it upon myself  to try it last time because reading tends to be difficult for me because of my cognitive challenges having Multiple Sclerosis. Last time I read for eighteen hours (I remember a few things but I wouldn't be able to do a book report about it). I plan to "re-enlist" in the reading army to try to blend my two worlds together; while I write to my fellow MSers about reading I can again enlighten my fellow reading friends about the MS world and what someone like me goes through in this Challenge. I like the aspect that it's kind of like a dance marathon in that you see how long you can go but it's ok if you don't "dance" all night, (which is good for me cause I only dance with my cane) The readathon is slated for October 22nd and I plan to have Hi-Liters, scrap paper and bookmarks on standby as well as extra caffeine. (Balanced with water)

optimism

if there's one thing that I try to hammer home through this blog and through Facebook is that I do not tolerate negativity. To combat that I try to be vocal and vigilant when I see someone that may be showing signs of depression. I try to share information as I come across it and I try (on facebook) to share some laughs. For me optimism is difficult but VERY do-able, this past week I was informed that my blood work related to my tysabri infusions showed that I show the antibodies for the JC Virus. I am not worried, a few of my fellow "tysabrians" have shown the same result but like me are continuing with the treatment. having the antibodies present doesn't mean that one HAS the virus but that they should be monitored closely. I also try to be optimistic when it comes to the naysayers that think I'm crazy for choosing to continue on my treatment.

to veg or not to veg, semi-veg might be the answer

my digestive system rusts shut sometimes

Multiple Sclerosis is never easy to get used to, every day brings new challenges that your body throws at you. In my case I have been having the usual difficulties with digestion. I have been doing good with taking vitamin supplements (the usual with MSers, Fish Oil, B-12, Multi-Vitamins, cinnamon) but I still have been having difficulty. A few weeks ago I had seen a news story about Bill Clinton and how he improved his health by cutting out red meat, it made enough of an impact on me that it had stuck with me. I weighed the difficulties I might have, I'm cuban and culturally red meat is an important staple to us. But I've gotten my toes wet and so far so good, I decided to be creative and made Baba Ganoush (it was pretty tasty) and like MS it'll be a day by day challenge. I want to clarify, I'm trying a semi-vegetarian lifestyle I still eat fish and poultry but red meat is my only no-no, unlike President Clinton I'm only doing this for my digestion, any weight loss is just a good by-product. I still take daily regimen and my digestion is improving slowly... I'll keep you posted

Depression

Depression is all to common once someone is diagnosed with Multiple Sclerosis, I thought I'd share a little of what I know regarding my life and MS. I was diagnosed in January of 2010, leading up to that diagnosis I had difficulty walking and difficulty with my concentration. What I didn't think about at the time is that I also had an underlying depression that I attributed to lack of sleep and working a lot of hours. Upon diagnosis I was in my hospital room by myself when the neurologist bluntly told me, "You have MS". Regardless of age, regardless of physical prowess, being told such a thing is devastating to say the least. The next night at a time when I was by myself, again I started over-thinking and I just started crying and thinking to myself, "How am I going to do this?" "What have I done to my wife?" . Thankfully for me the attending neurologist popped in to check up on me and saw me crying, after a few questions he prescribed me a daily antidepressant. I mention all of this because an actor named Michael Showers who had been diagnosed with MS this past March was pulled from the Mississippi River this past week. As per the coroners office Mr. Showers had been dealing with depression. Instances like that remind me of why I try to do what I do. A diagnosis is not a death sentence, it's a very sad situation nonetheless for Mr Showers friends, family and fans. My condolences to them all. I sincerely hope that if someone reading this that is having difficulties and needs help that they seek it. I don't advocate for drugs being the only solution that was MY solution in this matter but please just let someone know.
read the E! online article here


http://www.imdb.com/name/nm0795297/




Disclaimer: I am not trained in any way to diagnose or treat anything

keep working out

as I mentioned on an earlier blog post I've been working out and enjoying my progress, the only difficulty lies with ... ego. Before I was diagnosed last  year I was holding  had down three jobs, I've always had a strong work ethic and it kind of fell by the wayside upon my initial diagnosis. (in the sense that a disabled man with cog-fog shouldn't be in charge of doing paperwork or unloading a truck in the Florida heat) I mention my ego because I still have the mindset of going the extra mile (literally) or wanting to. The only difficulties lay with working within my boundaries. The success that I have enjoyed is that I may not be able to start the treadmill on 3.0 but I can start at half of that and move the incline up to 10.0 without much difficulty and pain. trying to do that with the mindset of health NOT bulk is always something that I have to keep in mind.

Treatment

For a while now I've tried my best to not directly address my treatment viewpoint on this blog, I try to not lean too much in one direction because most MSers get really serious about their chosen treatment. It's no secret that I'm on Tysabri, I try not to mention it too much because I was once told on Facebook that I must have some "big balls to take that poison" Since then I had been dancing around the topic of mentioning treatment choices (at least somewhat). To me it mostly seemed that the main group of anti-tysabri people are proponents of CCSVI. I myself have no desire to engage in a pointless war of words with anyone I think it won't help anyone. Ever since I was in physical therapy following my initial hospital stay I've tried to dwell in positivity, there were a few people in that rehab that were just too angry so I had made a conscious effort then and there to try and focus on my health and not feel bad for myself. As for my REAL feelings on CCSVI, I think its a good thing I want MSers and those afflicted with other problems to benefit, is it right for me now? No, My tysabri may not be the choice of other people but it's mine, I'm at a point where I can walk without pain and I can drive and remember things without too much concentration. In the future it may be an option for me that's why I try to keep open ears and learn from other bloggers and Facebook friends, the other anti-tysabri group seems to be the holistic/anti-drug lobby, I tend to be more puzzled here because folks in this camp ALSO call Ty poison but start to talk alot of stuff about Biogen and go on and on and on sounding like conspiracy theorists like we're being kept sick on purpose. The thought that I'm being kept sick on purpose is just dumb, we're allowed to be mad it's our given right as Americans to be mad. You can have a differing opinion if you try to post it I may not publish it. If you do respond remember that this is just my opinion

there's strength in numbers

no matter what the diagnosis, people shouldn't face a disease alone. There's a certain freedom in commiserating with others in your situation, whether it be an in person group or an online forum - sharing ideas and stories with your contemporaries goes a long way in helping people cope and deal with their situations and lets people know that they are not alone. - All that said, I came back from my in-person support group for my multiple sclerosis just now and I feel pretty good, it was good to hear that my own neurologist is going to be involved in some upcoming medication studies and I also got to see some of my friends that I hadn't seen in a few months.... I wanted to share this because I feel it's never too late to speak your mind and have an open ear to listen at the same time.

quick note on me

I was just thinking of what was keeping me from driving, there is of course the obvious (my not being able to press my foot down adequately on a brake pedal in order to stop a car) after a few months of treatment and physical therapy my new hurdle became optic neuritis, I also have minor cognitive challenges which seemed to unnerve my family (difficulties in short term memory half of the time not in the sense of mistaking 2011 for 1991) Once I was cleared to drive again it was just a matter of retraining my brain - because during my 18 month driving hiatus my brain reverted to my 8 year old passenger only mindset. It's a slow process but it's worth it.

I make a difference!

I don't think of myself as an expert I just try to educate and enlighten as I go along. One of my previous postings about optic neuritis was featured on Erase MS website  http://lookingatmyms.blogspot.com/2011/06/how-i-got-my-reading-groove-back-or-how.html .. Not to gloat but I was thinking about my role the MS community today, I never thought of myself as an advocate but like the nerd I am I looked up advocate

ad·vo·cate

  [v. ad-vuh-keyt; n. ad-vuh-kit, -keyt] Show IPA verb, -cat·ed, -cat·ing, noun

verb (used with object)

1.

to speak or write in favor of; support or urge by argument;recommend publicly

by that definition not only am I an advocate but so are my fellow MS bloggers, my friends at my MS Support meeting and most of my Facebook friends as well. That leads me to what I did this morning, I went to my local Staples and took advantage of a coupon for free business cards (basically so I don't have to write down the blog address anymore) 

falling back into practice

me and my Ranger November of 2005 pre-MS

as I have mentioned I recently started driving again after a nineteen month absence. My initial return started out a little bumpy, I had a near miss while trying to change lanes (don't know if I can take responsibility for that one or if I can blame the huge blind spot my truck has) regardless of that no harm has come to anyone in my vicinity and I continue to get into a good groove re: driving. I liken my recent driving adventures to my recent forays in handwriting, at first it'll look scary but I just have to slow down and try again. being thirty five and having relapsing remitting multiple sclerosis theres a small part of me that misses the daily bump and grind then theres the logical side of my brain that dictates that a forty hour work week will only zap my strength, that trying to do a 90 minute workout will do the sane, zap the hell out of my strength. It's all a matter of perspective and being responsible, can I drive? yes. should I drive in a torrential downpour or in a sparsely lit area? not really, for myself or most people in general I think. Can I do a moderate 45 minute workout? yes! can I do a 45 minute session of trying to go twice as fast on the treadmill or lift twice as much on the leg press? no. a responsible workout for myself would include a basic workout to prevent atrophy not a workout to look like a juicehead.

feeling alright

today I'm happy because I was able to do my entire workout. I also feel happy because I was cleared to drive nine days ago. After initial insecurities and scaring my wife with a near miss last weekend I think I'm settling into a groove. I really do my best to drive safely, keeping in mind that in the the world of optic neuritis there's no telling what tomorrow brings. Luckily my eyes really haven't gotten worse, I do my best to not overdo it at the gym because the last thing I need is to throw a monkey-wrench into my progress.

handwriting atrophy?

I'd like to share something about me that's changed since being on disability, since I no longer work and just use a laptop at home to communicate with friends I really haven't had any situations that have called for handwriting skills. My neuro's office already has my pertinent info down so I don't have to re-write anything for subsequent visits.I mention this because When I went to join my gym last month I DID have to use my handwriting and it was seriously lacking. In my working past pretty much all of the jobs that I have had have required writing of some sort or another be it progress reports or a shipping manifest. The afore mentioned gym membership sheet looked like a ransom demand. I really wasn't embarrassed I just found it odd how being out of practice for a year can really wreak havoc on someone's handwriting. My proposed solution, I have an old moleskin journalbook that I will use to occasionally scribble in, I have no problem with that since I used to that in highschool anyway.                         That is NOT my handwriting up there

Getting over it

I came to the conclusion that if I'm going to be imparting a little bit of wisdom or guidance here on this blog I should get over my fear of taking a peek at my brain. Yesterday I made it a point of viewing my MRI and having the details explained to me. I was given a detailed tour of my head in a matter of slivers. It was a black and white MRI that made my brain look a nice shade of gray. I was kind of expecting my lesions to be these ginormous white blobs but I was relieved to see that they were small white areas. I was also relieved to learn that my disease modifying drug (tysabri NATALIZUMAB) is working for me.


                                                                                                                                 (not my MRI)

we can work it out

*please consult a general practitioner or neurologist before starting a workout


I have developed a good workout based on the same exercises I did at physical therapy. In that routine I do an average of 10 minutes on the exercise bike and 8-10 minutes on the treadmill. Part of my difficulty is that I still have my old thought pattern of being gung-ho and wanting to do more than what my body will allow me to do. that is the main reason for putting a cap or time limit on any or all of the machines. My routine also includes 3 weight machines after the bike and treadmill. I changed it up today did 20 minutes on the treadmill and subtracted the weight machines (just for today)

taking a walk

after I was diagnosed with Multiple Sclerosis I first relied heavily on my walker, in July of 2010 I started Tysabri infusions, I believe that those infusions (along with my vitamin supplements, and determination to not fall) have lead me to using just a cane and being able to work out in a real gym and not a phys. therapy gym. I'm not wearing my AFO in this shot (I wear it to the gym) 

transitions w addendum*

I recently concluded my physical therapy, sometimes the baby-bird has to leave the nest, under the physical therapists recommendation I'm continuing my physicsal regimin at a local gym. I've been having an interesting time transitioning to my new gym's equiptment, the physical therapy gym's equiptment seems very different. One thing I have to keep in mind I'm not looking to bulk up and get muscles, the main goal in my case is to exercise legs muscles, keep those muscles active so they don't attrophy. My main three machines leg curl (being seated with raised legs, pushing my legs downward, drawing weight down)  

leg extension                                                                                                                           

being in a seated position, drawing my legs straight out pulling weight along with it.

and leg press which in most cases involves being in a seated or reclining position with both legs bent and

*I neglected to mention that I do believe that I might have overdid my workout a tad,  when I was making my way to the locker room I caught the end of some carpet in a hallway, its a miracle I didn't bust my face open on the tile and after that near miss and making some poor gentleman rush to try and catch me (he must have thought I was drunk) I had a unusual moment walking to my truck, it wasn't so much a near miss as it a "mid-flight course corrction", I felt very happy in the fact that while walking to the car I was able to do a walking balance adjustment as I was walking. I only mention that because it serves as a good reminder to MSers to take a cue from our turtle friends and remember "slow and steady"..... not that we're looking to win races.

something to keep in mind when it comes to reading what I write

I do my best to stay current and to inform people about what I go through and hopefully enlighten people. In my rush to try and type, my thoughts and ideas get garbled, not on purpose mind you but I constantly notice that my main thought/train of thought often gets derailed. Another bad habit of mine is bad grammar, I ask that people keep an open mind as I'm trying my best to not sound drunk as I type. It's mildly 'cog-fog' related more with the fact that I have un-diagnosed adult A.D.D.   

a bit of what I think about conspiracies

Most of my daily routine involves immersing myself in MS, by that I mean that in the morning after reading my emails and drinking my coffee I catch up on my Google Reader. By that I mean that I read through my MS related blogs, it also collects MS related tweets. Through that process I mostly do that to stay up to date with MS News and the community as well, in that respect  I also use Facebook for that same purpose. In all of that MS knowledge immersion I have come to a strong conclusion about myself I don't believe in  conspiracies or playing detective when it comes to my MS. Some people will think I'm naive but I really believe that companies are moving forward to find a cure, I don't really think that we're being kept sick on purpose. Money can still be made by these companies if they find a cure. I respect different peoples thoughts and ideas. In regards playing detective, trying to trace your medical history in most situations can be a headache in regards to trying to track down the 'genesis' of the disease into your body. I do my darnedest to respect anyone dealing with disease, we all have different ways of dealing, coping, getting by

you may have a different opinion, please use discretion if you comment

Progressing

When I initially went to physical therapy I was there for about three months when I came down with a case of fear and "demotivation", by that I mean I was trying to use a cane before I was ready and fell straight on my face. After that point I let that fear get the better of me and I stayed bed bound for a few days and stopped going to physical therapy, after that I moved to staying on my couch for that summer. That October I mustered up the strength to go back to physical therapy. I had a three day a week routine consisting of the exercise bike, leg press and a few other machines. That routine in conjunction with my Tysabri therapy have greatly assisted me in moving forward  great deal. I have progressed to using a cane and not relying so much on my walker, this is also due to the fact that I had to learn from those failures and just press forward. This week I "graduated" from physical therapy, there's only so much that can be taught/done before a student/patient must move on. I joined my local gym where I plan to continue that 3 day a week routine. I don't have the same therapy environment so I plan to update re any difficulties I might encounter.

Yesterday I received good practice for keeping a positive mental attitude while visiting one of my team of doctors. (hectic waiting room, unruly children, angry patients) The clinical side of the visit was fine though, since I have optic neuritis my opthamologist has done a good job of checking all the odds and ends when it comes to my optic nerve. Optic neuritis involves an inflammation of the optic nerve that often leads to sudden vision loss or obstruction in vision (like seeing a grey blob in your line of sight). They conducted a field vision test which I didn't "fail", nor did I "pass", I did the same as a visit right after the onset of the neuritis. The test is very peculiar it looks like a miniature mock up of what I imagine a UFO might look like on the inside stark a single color and tons of flashing lights going off one at a time in random order. My eyes were then dilated so the  Dr can take a peek inside the eye itself, from the pupil area looking in. The pressure in the eye (their words not mine, don't ask me) was good. The appointment ended with a referral for a second opinion since this is a neurological condition she wants a second opinion on how we should proceed with my eye from a neuro-opthamologist   that above is the field of vision tester, the UFO part is within the circle area

Positive mental outlook when it comes to MS

No one ever said that having an incurable disease was an easy thing, but being in the midst of this battle I figured being negative and being angry doesn't help or my wife. The only drawback that I can see is that some people might view me as being weak or a tee-totaler, I've been refered to as worse (I'm from New Jersey after all). Having a thick skin helps in many of lifes battles, I encounter situations everyday on the internet*, a few of these situations play out in discussion boards regarding specific MS Treatments. (*fighting on the internet is pointless and only accomplishes a hollow victory) People in the MS life we are an open and usually accepting bunch but when it comes to treatment there seems to be defined camps. Regardless of treatment choice, I try to view ALL battling this disease as an all, someone who can share knowledge fro their point of view (Your MS may not be like my MS and vice versa)

You don't necessarily have to be religious to have a pacifist like attitude, meditation can help (as well as help in MS). For me it's a combination of a few things, one of them being Citalopram (Celexa) http://en.wikipedia.org/wiki/Citalopram ,it may not be everyones personal solution but I have to admit it has really helped in my life. Please consult your doctor as I am NOT one :)