Thursday, April 30, 2009
I hope that you will go read the complete story and maybe let me know you stopped by. In future posts, I will discuss the challenges of living with multiple chronic illnesses which I know many of you can relate to.
Each one of us has a unique story of how we learned about rheumatoid arthritis and about the immune system which has decided to attack our own body tissue to cause inflammation and damage. Here is my story.
I am a classically trained pianist who spent her undergraduate years practicing piano 4-6 hours each day. Lots of repetition, developing great hand strength and finger coordination. In a very real way, I understood my world through my fingers.
I even knew how words were spelled by the “feeling” of my fingers on typewriter keys. Yes, this was before I had access to a computer. I only had to mentally type the words in question to know which letters to use when I wrote.
So when my hands began to feel a bit odd 7 years ago, mostly heavy and thick, I mentioned it to my primary doctor. Based on my symptoms we looked for possible lupus (my mother has SLE), rheumatoid arthritis, hypothyroidism, and overall inflammation. My nurse called with the results.
Read this post in its entirety:
Carpal Tunnel Syndrome or Not?
I want to have a contest so my readers can vote on them and the winner or winners will receive a free shirt. Sound good?
So if you are one of those creative and clever people who would like to win this contest, ( for bragging rights, of course) please email any ideas to firstname.lastname@example.org.
I have a few ideas but I would love your input. A few rules...Nothing religious, nothing political, nothing racist and no swear words (or keep it to a minimum) LOL
Thanks for your help. I know some of you are very creative so let's get that the creative side of our brain going! Rah rah rah!
Cathy of www.TheMSShoppe.com
On a related note, Todd of Art2Shirt has made available the first of the Artists with MS series of T-shirts. You may recall that he was still looking for additional artists to feature.
See Artists with MS, A T-shirt Fundraiser for NMSS for more information.
Thanks to all of the creative MSers out there. We make a great community.
Wednesday, April 29, 2009
I recently experienced a pseudoexacerbation with the onset of a urinary tract infection (UTI). Before hand, I’d felt a spasm-like sensation in the lower abdomen. Didn’t really think much of it at the time because I was not experiencing any pain (burning upon urination) or fever.
But when overwhelming fatigue kicked in, followed by increased weakness and shakiness in my legs, I became a bit distraught. If this were a relapse, then it seemed to be developing into one of the worse yet to affect my legs and limb coordination. In the least, it was developing at an extremely quick pace as compared to previous relapses.
However in contemplating the phone call to my MS nurse, I mentally went through the questions I knew she would ask. A pivotal question which is always asked - “How is your bladder? Any sign of a UTI?”
So, I called my primary doctor’s office and asked if I could stop by to get a quick urine test. I did have to see the doctor but was also able to get started on antibiotics the very same day. This infection took two rounds of antibiotics to eliminate it. Then an additional week or so to regain the strength I had temporarily lost during the pseudoexacerbation.
Rest this post in its entirety:
Multiple Sclerosis Relapse or Pseudoexacerbation? Part One
Tuesday, April 28, 2009
But I do have something fun to report which is going to happen soon. Well, actually it has already happened but just hasn't gone live yet.
I am the newest addition to the team at MyRACentral.com. My producer (who is different than the producer on the MS Central site) already has a month's worth of material from me. And today, she announced my new assignment to the other contributers. So I thought that I would announce it to you too.
One of the long-time contributors is Lene Andersen who blogs at The Seated View. She is very supportive and I'm thrilled to be joining her team. As soon as my posts start going live, I'll be sure to let you all know.
Monday, April 27, 2009
After her mother and I both read this piece, she said that she just likes to match words that rhyme. The poet is in the third grade. She chose a red dry erase marker. And the shape of the words resembled a heart.
I look in your eyes and finally relize
That all I can see in you is me
I tug you close and then I find that
Only roses are in your mind I stroke
Your skin It feels so pure cause it
Feels softer than kittens fur
All I need to do is
Look in your eyes
Then I find
This work may not be reproduced in any manner. Thank you.
Saturday, April 25, 2009
Thursday, April 23, 2009
"No words to express....."
dis-in-tə-grāt = To become reduced to components, fragments, or particles.I have undoubtedly avoided writing about my Multiple Sclerosis for the past year. It makes me sad. I feel like writing about it makes it real and THAT makes me sad. Truthfully though, just living with it makes me sad. Not every day but often enough to be a thing I want to avoid. There are other things more putrid that I would rather do lately than discuss, talk or write about than what MS is doing to my body.
I need to start by stating that I felt compelled for the first time this year to fundraise for the MS Walk. Compelled because I began to feel a new sense of urgency I never felt before and it was brought on by a very upsetting new change in the landscape of my young body caused by…MS. First it was my left foot that started to look strange. Later it was confirmed by the Physical Therapist that I had atrophy of my left leg, ankle, foot and toes. Followed by a month ago, when I noticed after I got out of the shower that I had a massive dent in my upper thigh/hip area. I was informed that this is also an area of atrophy caused by MS.
Informed. No one even attempted to soften the blow to my youthful and appropriate vanity. No, “I’m sorry, this is what MS does.” Just: “Yup, it’s the same as your foot.” So, god only knows if I will wake up tomorrow with another gap in my muscle on that leg. I hate MS.
There are no words to express how I feel about what MS is doing to my body. I have been struggling with another MS related change. My left foot no longer stays flat when I walk due to spasticity. I just tried out my custom fit AFO for the first time and although it needs some adjustments, it does help to keep my foot flat. The problem I have with it is that it makes wearing shoes impossible. Will I ever wear the thing? Probably not. It’s bulky, and due to my Dysautonomia I can’t walk that far anyway.
It is difficult to explain to people what it’s like to be almost 34 years old and not be able to walk with a normal gait, if at all. Or to be steadily losing your vision. Or to watch your young body be slowly disfigured by a disease you can’t understand and you can barely even pronounce.
I have been torn lately about how to confront my MS and I have some important choices to make this week. I have been off Tysabri since July 2008, taking my time to choose which disease modifying drug to go on. I realize I have taken too long because I have had a few small flare ups. I am thankful they have been nothing serious. Next week I see my Neurologist and I may choose Avonex. I am apprehensive about it because I had a bad reaction to Betaseron and they are so similar. I wish there was a better answer to treatment.
Time to choose…
Here's to you...
This Thursday and Friday marked the end of my ski season (in a different way--keep reading), where I did improve (and hopefully will improve next year too!) By being up in the mountains, I missed the front range blizzard in Colorado.
A week or 2 ago I got a message from the old sprint coach at my high school, who I also felt gave me some pointers, was a motivator, and is one of the most beautiful people I will ever have the privilege of meeting and having as a motivator when I was in high school. I exchanged the usual how are you when she contacted me, and the surprising answer was she was not so good. While I have MS, she now has been diagnosed with ALS, or Lou Gehrig's disease.
So I have been thinking a lot about her--some anger, sadness, tears, etc. The thing I will never forget about her was what she told me after I finished 2nd in a 2 mile track race, at a big meet where I was really supposed to finish 5th or 6th. I don't remember what anyone else told me after that race, but I remember her taking the time to take me aside and tell me that I could have won that race. And I knew it. I'll never forget that.
This Thur and Fri her words from way back in high school continued to go through my head. I got to a point on the slope that I always somewhat miss and all of a sudden I heard in my head, "Beth, you could have won that race." With that, I sat up, leaned as I should, and nailed that point on the slope, and then never missed it the rest of the 2 days. There were other points too where her words came into play, and it made the 2 days of skiing more meaningful and more memorable.
Here's to you, Coach. This race I did win! And then I smiled one of my biggest smiles, ever!
Instead of sharing how I worked my way through my process to get to a place of humor, perspective, and gratitude, I thought I would share the mucky part before that and see if it makes me feel any better.
I am at the MS Center getting my monthly solumedrol drip, except I had to wait a half hour after the start of my appointment since I missed my March appointment. I am being punished for my non-compliance even though I am here which means I am trying to be compliant. Too late. I'm in the slot and there I will stay.
My feet are still numb and cold and even though I left a message for the neurologist yesterday, I have yet to receive a call back. And even though I am actually present in her office, she has yet to come by to see me and respond to my message about the numb feet. More punishment? I'll show her. She misses the solumedrol and her feet get numb, let her suffer because she deserves it. She brought it on herself.
I am alone. Lots of people are here alone but there are also people who have loved ones with them. It's probably 75% alone and 25% with people. So why I comparing myself to the minority and feeling bad?
The woman who is getting an infusion in the next pot just went to the bathroom. Her husband lifted her from the recliner into her wheelchair and then took her into the bathroom. I'm assuming he had to pull down her pants, put her on the toilet and either empty her cath bag (is there such a thing) or wipe her after she went to the bathroom. Who, exactly, would do that for me? Not that I want to be in a position to be having ANYONE take me to the bathroom but, God forbid, who will take me?
I am feeling like I have no loved ones that love me THAT MUCH. I am filled with self-pity and devoid of all gratitude. I am missing my dad and started crying when the nurse asked me why I missed the March appointment. I am missing that he was a person related to me who gave a shit and who I could count on no matter what. He would never let me be homeless. But I am not homeless. I have a job and a home and a refrigerator full of food.
I am missing Ken, too, not just as my boyfriend but HIM in particular. I am missing his eyes and his voice and his kindness and his hands and his love and his body. I'm not sure why I am missing him here and now. He never came to solmedrol drip appointments with me at this place. He probably would have tried to come if I asked but he never, ever would have offered on his own. Maybe I'm missing who I wish he could have been for me. In our relationship, he gave me a lot but he could not or didn't want to give me his whole self and his whole heart as a life partner. I am missing what he NEVER could give me. But then again, I hate when people feel sorry for me and cling to my independence at all costs so why am I craving that kind of support?
I am tired and want to fall asleep but I'm supposed to be working which I'm not doing anyway, so I should probably stop whining and either do some work or shut my eyes. I keep switching screens from this one to work email and feeling resentful about that.
I am, in short, not in a good place. I am sad, mad, scared, and, generally pathetic. I know that this too will pass. I know that because I am sharing my feelings, they will be halved I will get relief from the poison in my brain.
A woman just came in with a three-month old baby and I feel better looking at his peaceful face asleep in the stroller. Thank God.
I am not asking for help and I should be. I just closed my eyes and asked but I was not hit by a bolt of spiritual lightning.
This concludes the 34th edition of the Carnival.
Acorda received a Refuse to File (RTF) letter for the Fampridine-SR NDA on
This press release includes forward-looking statements within the meaning of the Private Securities Litigation Reform Act of 1995. All statements, other than statements of historical facts, regarding management's expectations, beliefs, goals, plans or prospects should be considered forward-looking. These statements are subject to risks and uncertainties that could cause actual results to differ materially, including delays in obtaining or failure to obtain
Jeff Macdonald, 914-347-4300 ext. 232
Wednesday, April 22, 2009
Tuesday, April 21, 2009
Dysarthria is considered the most common communication disorder in those with MS. It is typically mild, with severity of dysarthria symptoms related to neurological involvement. Dysarthria evaluation in MS has traditionally included both informal and formal measures of a variety of oral-motor, speech, and voice functions, with comparison to referenced norms.
Dysphonia, which refers to a voice disorder, often accompanies dysarthria because the same muscles, structures, and neural pathways are used for both speech and voice production. Therefore, voice quality, nasal resonance, pitch control, loudness, and emphasis may also be affected in those with MS.
There are three types of dysarthria associated with MS: spastic, ataxic or mixed. Differential diagnosis depends on the extent and location of MS lesions, and the specific speech, voice, and accompanying physical signs that result. Mixed dysarthria is most common in MS, because multiple neurological systems are typically involved.
Read this post in its entirety:
How to Manage MS-Related Dyarthria (Speech Dysfunction)
Sunday, April 19, 2009
Saturday morning, my alarm clock was set for 8am. A time much too early for a 'normal' Saturday. I had planned to leave no later than 8:45 to drive the 25-30 minutes to Reston, VA, for the Solo and Ensemble Festival. However, I didn't really hit the road until closer to 8:55.
The first performer for whom I accompanied was scheduled to play at 9:28 and parking is ALWAYS horrendous at these events. It's kinda like a Frogger game (yes, I'm revealing my age here); however this time, everybody is following the Frog to Jump on the evacuated parking space. I made it to the classroom by 9:20. Whew!!
Then for the next 90 minutes, I jumped from room to room playing piano and giving encouragement to my students and additional performers who were not my students. Made it out of there at 11:05 and home around 11:30, allowing a few extra minutes to just close my eyes recoup (quickly).
Don't remember if I told you or not, but there was a 1:30pm wedding to attend in downtown DC. The plan was to leave my Falls Church, VA home absolutely no later than 12:30pm. About 12:05, my Sweetie stirred me saying that he was going to get dressed and I knew I needed to as well.
It was easy. My dress was ready and I just needed to made the hair look a bit better (leave-in conditioner, big brush, hairdryer, then hairspray would do the trick). BUT.....the Sweetie discovered that he really should have checked the wrinkle-status of his chosen shirt the night before. Yikes, time to pray that the iron (which is hardly ever used) was where I thought it might be and time to take over ironing duty. This happened at about 12:15.
Well, time when such that we managed to look spiffy, except one thing was missing. I couldn't find my make-up bag. See, that shows you how often I actually wear make-up. LOL. It wasn't where I thought I had left it. (Yes, my things are THAT disorganized around here.) So go au naturel did I with the "I think you look great as you are" from the Sweetie.
We hit the road at about 12:40 and made good time into town. Parking was unbelievably unavailable on this glorious Saturday afternoon, but we were lucky to find a parking spot about 2 blocks from the church. It was after the 2nd pass by the church at which my Sweetie said, "ugh, I really should have dropped you off." My reply, "no, no, that's okay. Let's keep looking." Made it into the church just as my feet were beginning to cramp up.
After the wedding ceremony, it was time to travel to the reception which was held at the Arts Club of Washington which is located in the James Monroe House on I Street (not far from Pennsylvania Ave and 20th St. NW). The church was at the intersection of Pennsylvania Ave and 25th St. NW. So the choice was to walk to the car, drive to the reception location, try to park again, and walk to the actually event. OR...... walk the .6 mile (or so) between the two destinations. I chose to walk.
The sun was shining but it wasn't hot. The sidewalk was uneven but I didn't trip. Maybe two-thirds there, the Sweetie asked, "how are you doing?" My response was, "I am concentrating very intently." Keep an eye on the ground, remember to swing the legs forward, and closer to the destination, simply think to the right leg - swing!! and don't drop!! Of course, my shoes had begun making the "THUD" sound so common in mild footdrop. And, I had taken my Sweetie's hand to extra support somewhere along the way. Very pleased, though, that the cardiovascular system was working efficiently and that I hardly got winded.
I made it the the Arts Club. WhooHoo!!!!! Started up the few steps to get into the Arts Club with my right leg. No go, nada, not going to happen. Left leg had to lead the way. Cocktails were being served on the 2nd floor, so up the stairs I had to go. As folks with MS are aware, sometimes you just have to adapt. I waited until the crowd had gone up before I took one step with the left foot and placed the right foot next to it. I did this all the way up, one step at a time.
The reception itself was extremely long. Cocktails at 2:30pm. Dinner at 4:00pm. Wedding cake cutting at 6:00 (?). Fortunately we were seated with friends and had plenty to talk about. The day and events couldn't have been more beautiful. Halfway through the reception, the bride and groom changed wedding attire. The bride who is Vietnamese changed into a traditional áo dài gown and the groom who is American changed into a áo gấm.
After deciding it was time to leave, my Sweetie walked back to the parked car with one other friend (who had taken the metro into town). The friend's wife stayed with me and we waited on the men to come pick us up. After a slight detour through Georgetown and then taking them to the Vienna Metro station where their car was parked, we didn't get back to Falls Church until 8pm.
I was completely WIPED OUT!!! Watched the movie, Grey Gardens, on HBO. Sweetie gave me an awesome foot rub which helped to ease some of the soreness out of my many foot joints. Went to bed and treated myself to extra Baclofen, a sleeping pill for total relaxation, and all of the other required medications. Slept like a dream.
Today, woke up still very sore, but less so than I would have been without the massage and drugs. Still, it was a very slow and sleepy day. One thing I started working on is putting together some research to present on the blog soon. Maybe tomorrow.
Overall, I feel like I completed my own "MS Walk" and survived to tell about it. Less than 1 mile, but on 'real-life' terrain and I'm as proud as can be right now. Yea me!!
Saturday, April 18, 2009
I have become acquainted with many persons living with multiple sclerosis through Twitter. One such person is Todd Walbridge who is a screenprinter who specializes in Art on Shirts.
He has a new project started as a fundraiser for the National Multiple Sclerosis Society. He has asked artists, who have MS, to allow him to reprint their work on t-shirts for sale at his website TM Design Corp or Art2Shirt.
The proceeds will be split between the artist, Todd, and a donation to the NMSS. He anticipates that the project will be underway in May and that press releases will be distributed in June.
Todd Walbridge on Twitter and on Linkedin.
Friday, April 17, 2009
Well today, it was spent getting up somewhat leisurely around 9AM, checking the abundance of email and alerts to Twitter followers I received, trying to cram reading a few blogs in before I had to get ready to leave.
Daily (almost) after my morning shower (which sometimes happens in the afternoon), I inject the holy water of Copaxone. Today was one of those days. Well, actually EVERY day is supposed to be the day, but I'll admit that I've missed a few in past 3.5 years of injections. Today's shot was amusing as I hit a vein in my thigh.
As soon as the needle was withdrawn, blood spurted straight out and spun in the air like a rhythmic gymnast's ribbon toward the ground. On the way down, some of it hit my shin, more hit my foot, and the rest landed on the bathroom floor. I moved quickly to stop the overflow with a cotton ball, but the blood was moving faster than I was.
So after laughing at the ridiculousness of the spurts of bright red fluid, I prepared to go to my physical therapist's office. Today was less a session and more an opportunity to "work out" on her equipment. See.....she is working with me in a transition period, going from the safe and supervised environment to the big, scary adult world of the county recreation center. Honestly, I'm finding it less scary and awkward the more times I go. Yeah me!!
After working out on the machines, including a 3-mile bike ride, Val (my PT) ordered me to the treadmill to walk. Less order, but more direction. Surprise her I did by helping myself on the treadmill and getting started.
"Look everybody, I teach her how to use the machines and she goes off without me."
Typically, nobody uses the treadmill alone for safety reasons and I've come to appreciate ready access to a chair for those legs which are getting just a mite bit too wobbly from the exertion.
Today was a special day at the PT office because another MS patient facilitated a group meeting which focused on Exercise, Diet, and MS. It appears that we women (who all seek Val's strict guidance and support) will be forming a support group. Of those in attendance, I am by far the most mobile as some use a wheelchair exclusively and others use walkers.
One topic discussed was how exactly do you stay fit, perhaps lose weight, and work on cardiovascular health when MS places challenges and barriers in your way. This is something I need help with as I've got a substantial amount of weight to lose and would love to make that 3-mile bike ride into 5-miles (as a short-term goal). I think it would be nice to be able to walk 2 miles out in the real world. And, heck, while we're talking about it, how about lose 1/4 of my current body weight. That would be a long-term goal after which a reevaluation would need to occur.
The meeting went until 3PM and I needed to rush home. Shorting after getting home, I began the rest of my work day with rehearsals for students who are performing in the Solo and Ensemble Festival this saturday and next saturday. Rehearsals lasted until about 6:20pm at which time I was completely wiped out, non-communicative, not interested in "what would you like for supper" discussion, or any other human discussion.
So I checked emails again, composed an email to a friend, closed my eyes and tried to drift off. By about 7:30PM, I felt ALMOST human again, just in time to eat the tomato soup and grilled cheese sandwiches which my Mom made for us. Thanks Mom. :) We watched Jeopardy followed by Survivor, while I checked in on some blogs (not really taking the time to comment on any one, sorry).
Helped the sweetie drop his car off for servicing tomorrow, stopped for a gallon of milk on the way home (as I didn't have time to go to the grocery store after PT), and made it back in the house shortly after 10PM. Crashed on the couch, tried to catch up with more emails, Twitter, and read more blog posts. Yes, I actually do try to read everybody of whom I'm "following" and then some more on top of that. Answered a few questions at HealthCentral, then....
Watched the news. Jay Leno came on. Decided to go upstairs and had a kitten eagerly follow me. Took care of the face and contacts, got read for bed, and the other kitten ran into the bedroom hoping for a nightly treat. Couldn't leave his sister out of the routine so called her. She came barrelling into the room and onto the bed so fast that if you blinked, you would have missed it.
So two treats each. Yum!! Open the computer back up. More reading, then decided to write this post. Didn't really have a good idea what I would say, but just started anyway. No goal. No clear beginning, nor clear end. Just random talk.
It is now 12:50AM and I think that I'm finally getting a little sleepy. Insomnia has been plaguing me recently and messing with my daytime fatigue levels. Damn stress, darn emotions, and dang being too busy to get on top of things.
So with that, I'll end this note. Tomorrow is another day, quite busy actually (again). Saturday morning I will accompany and cheerlead almost a dozen young musicians at Solo Festival. Then rush off to attend an early afternoon wedding in downtown DC. Maybe after that, I'll finally get to crash again. But how in the world will I ever catch up.
Such has been my life for the past month, it seems. Need more time, or need less to read.
Wednesday, April 15, 2009
Bladder Management and Fluid Intake
- If bowel and bladder dysfunction are both present, bladder problems should be addressed first. Many patients practice fluid restriction in an attempt to control distressing urinary symptoms such as frequency, urgency and incontinence.
- Once urinary dysfunction is no longer a major problem, it will be possible to increase fluid intake in order to prevent desiccated stool, which is difficult to move along the gastrointestinal (GI) tract and evacuate.
- The generally recommended fluid intake is 2 Liters per day.
- In addition to fluids, prune juice and/or dried fruits are the easiest, and often most effective dietary measures.
- Sufficient dietary fiber is essential. If a high fiber diet cannot be achieved, bulk supplements such as Metamucil, FiberCon, Perdiem, or Citrucel can be used. One or two glasses of clear fluid (e.g., water, apple juice, broth, tea) should be taken with these agents for full benefit.
- Liquid sugar concentrates are another natural intervention. They act by drawing water into the intestine, thereby softening the stool. Preparations include Sorbitol, Lactulose, and Golytely. Side effects are rare, and these agents are useful for long-term management.
How to Manage MS-Related Bowel Dysfunction
Be sure to read the comment section for more discussion on the topic.
Tuesday, April 14, 2009
Hello this is Chris Tatevosian, author, MS suffer and longtime member of Mandy's Maze. As most of us know already Mandy's Maze and MS Central are enlightening, informative and educational sites dealing with multiple sclerosis among other ailments. Mandy's Maze, designed and written by Mandy Crest who like myself has and deals with MS every day. The Maze has so much to offer to all individuals, not just those of us dealing with MS.
Recently I read this article written by Mandy Crest following a recent interview on the Oprah show. I thought that I would add my two cents..... I have added my thoughts in italics to the following superbly written article by Mandy Crest. I hope that you enjoy and please let me know what you think via e-mail at email@example.com or by visiting my web site and signing my guestbook. www.Lifeinterrupted-nolonger.com
March 2009 Mandy wrote:
I admit it -- I don't watch Oprah. But so many people told me about Montel Williams' March 17 appearance on her show that I had to get my hands on a copy. I heard it was an extremely powerful piece about multiple sclerosis.
Immediately, I was startled by Montel's outpouring of raw emotion as he spoke of his MS progression. Repeatedly breaking down in tears, the former marine and all-around tough guy described his road to diagnosis, battle with depression, suicide attempt, and chronic pain. At times I completely forgot that I live with the same disease, so drawn in was I by his circumstances and
As an author and multiple sclerosis suffer who has lived with MS for more than 29 years now, I can truly understand as do most of us with MS , from where Montell's concerns, fears, anxiety and demons stem. It's simply the unpredictable, unexplainable course this disease will take during one's lifetime.Looking back on his own talk show days, Montel spoke of having to lengthen commercial breaks in order to rest from the constant pain and burning sensation that plagues him 24/7, reaching from his shins to his feet and has now affects his face as well.
As I try to explain to readers in my book, Life Interrupted, It's Not All About Me, those of us suffering from MS, whether afflicted or acting as the caregiver for one who is afflicted with MS or any chronic illness for that matter the future is unpredictable. Especially when dealing with autoimmune diseases like multiple sclerosis. I tell readers, yes the disease is miserable, but it's your decision whether to go through the rest of your life smiling or crying and depressed. It's likely that we will always have the miserable disease whether we're smiling or crying and depressed, so how do you want to spend the rest of your days? It comes down to one of two choices? You can have your MS/chronic illness, basically your misery but you can have that misery and smile and try to make the best of it or you can have that misery and add your emotional misery to it.
Having written my self-help memoir dealing with this specific topic has afforded me the opportunity to slow down and examine my life. The obvious fact is, we have the choice to go through life dealing with whatever trials and tribulations we must with either a smile or a frown. Yes, we have an affliction, but that doesn't mean we should just sit back in a downward spiral plummeting into a state of deep depression that feeds on our own self-pity and feelings of worthlessness. As in my case, this only leads to the development of one's relationship destroying poor me attitude.
Mr. Williams suffers from depression, a side effect of MS and as Mandy states "That doesn't make him an unacceptable role model. It makes him a human being who, despite MS and serious depression, chooses not to hide. I have chosen not to hide because of my MS. No, I made my life an open book hoping to show others in similar situations that life isn't over and that your life can be great again. Having read my story, you know I'm living proof. Obviously, Mandy has not chosen to hide, but rather help others manage and live wonderfully happy and successful lives all the time living with MS.
I pray that Mr. Williams recognizes that he has the platform that would allow him to reach out and help millions of individuals around the world who are suffering in one way or another. Doing that would only make Montel Williams feel better by again having a purpose in life. Thus allowing Mr. Williams to see the positive influence that he could once again contribute to the world. Of course he first needs to get help and successfully overcomeof his depression. One would think that with his resources he could easily ascertain the best medical attention Why he has not already achieved this task is beyond me.
He follows a strict regimen of vitamins (lots of them), exercise, and healthy diet. He demonstrated his daily injection, a constant reminder of his condition. "Can't I just forget it one day?" "It" being a disease without an obvious cause or cure, and allowing for little control. "I'm tired of being sick."
Saying "I can't run anymore -- running is gone," he continues to work out every day in order to stay as strong and healthy as possible.
What really hit home for me was his description of how his wife, Tara, "has the ability to get her arm under mine and make me look like I'm holding her and drag me to another place." Those of us with loving care partners understand what that's all about.
Hello it's Chris again. Here are my two cents. Having been there myself, I would have to say that Mr. Williams likely gets depressed in this situation as did I, because feelings of low self-esteem and self worth as his wife has to do more and more for him. This is difficult for a guy to accept. We're supposed to be the strong ones, the protectors, heroes and breadwinners, at least that's what we think. This is something we have to just get over, because one's frustration and anger takes a serious toll on one's relationship. I learned that lesson too late, but I'm a better spouse for it today. This is something Montel must quickly realize, otherwise he too could lose his wife.There are dark moments, he says. African-American men, as a group, do not fare well with MS. At 52 years old, he considers the average life expectancy of an African-American male, and the slightly shortened lifespan of someone with MS, and sees his remaining years possibly numbering in the single digits.
Two more cents, smile: One must remember white, black, turquoise, what ever MS or not, any one of us could be gone tomorrow. Here's a quote from my book "worrying about the future, almost always insurers that the future for which one hopes never happens." More negative actions and feelings like depression, anger, worry and frustration takes a toll on relationships and over time can prove to be too much for one's spouse to bear."I could quit and say that's it. Stay in bed and not get up. Or I can get my butt up every single day, being a contributing member of society, and try to figure out how I deal with it."
Asked his biggest fear when he wakes up in the morning he replies, "not being able to walk." Boy, can I relate.
My final two cents: Initially the fear of losing the ability to walk is a daunting an haunting concern, but I have found the longer one lives with MS and the more knowledgeable one becomes about MS the more we find that losing the ability to walk while initially devastating does not rank highest on my list of most horrible symptoms of this disease. Every face of MS is unique. We may not have control over our physical losses, however we do have control over our emotional losses. MS can become emotionally crippling, don't you let it.Why DID he say this... Why DIDN'T he say that... real people?
I don't get it. We say it all the time here on Multiple Sclerosis Central. "My MS is not your MS." We understand a basic fact about MS -- that with all we have in common, no two cases are alike. Some people with MS barely register it as a blip on their radar screen; others face devastating disability; and the rest of us live in the million shades of gray in between. It's bad enough that we "look so good" that our symptoms are invisible to the outside world. For us to attack each other for how we appear in public is a mistake.
The man lives with chronic pain and depression. Are we really going to beat him up for admitting that? I would not expect him to feel positive all the time and certainly would not want him to fake it so that we can all feel better. I deeply resent it when other people presume to know my reality better than I do, or tell me how I should feel. And by the way, uncontrollable crying is a (rare) symptom of MS.
There is no one ideal public face to put on MS, no role model that will encompass all there is to this disease. Whether it's the healthiest looking person in the world or the bedridden nursing home patient -- each of us represents the face of MS. Because Montel Williams' MS does not resemble my MS does not mean one of us is wrong.
Your face, my face, Montel's face -- aren't we all the face of MS?
Chris at a book signing event.
Monday, April 13, 2009
Here's what Doc had to say about it:
"I found this wonderful live action video of white blood cells at work, showing the neutrophil, one of the most common cells in the immune system, (though if I’m not mistaken it looks more like a macrophage, but I’m no pathologist) , on the prowl hunting down the bacteria, set brilliantly to music, Perfect for Biology geeks everywhere. Enjoy!"
Hope you enjoy the chase.
Sunday, April 12, 2009
The following are some new videos added this week which briefly discuss stages of diagnosis and the types of Multiple Sclerosis:
Dr. Rock Heyman defines the term clinically isolated syndrome, and describes what it means to have possible MS.
Dr. Gabriel Pardo talks about the resources available to help people who have recently been diagnosed with MS, as well as the importance of early treatment to slow disease progression.
Dr. Robert Fallis describes relapsing-remitting MS, the most common form of the disease, and explains what occurs in the central nervous system during relapses and remissions.
Dr. Rock Heyman describes primary-progressive MS and the ways in which it differs from other forms of the disease.
Dr. Aaron Miller describes the available treatment options and resources for people living with advanced MS, and highlights the ongoing research efforts to repair the damaged nervous system.
Thursday, April 9, 2009
"Who I am is stronger than any disease."
Had my first Complimentary Customer Care Conversation with the Copaxone Consultants yesterday (too bad yesterday doesn't start with a C). You know, the ones where a representative calls in order to share how easy, and actually fun it is to inject yourself with toxic substances. Got my free products coming, of course--a durable plastic storage container for 30 glass syringes, another plastic container for travel, and a gel pack for injection sites. I was hoping for some Cuban cigars as well, but it looks like these are no longer being offered (if they ever were).
I also had the opportunity to rate various aspects of treatment and personal satisfaction on a number scale--1 equalling No, not really, and 4 meaning Yes, I love it!
When asked about my level of commitment to the treatment, I answered 2.
This apparently caused some red flags to shoot up with the interviewer.
Why 2? Are the injections unpleasant? Is there something we can help with? Do you believe you really have MS, or are you unsure? Do you need more literature about Copaxone?
No, it's just this irritating, unreasonable gut feeling that I cannot seem to escape--the feeling that somehow when ones body objects so strongly to the introduction of this or that foreign substance, it could somehow mean it's not a good idea.
Your body objects? How do you mean? Is there something about the injections that you don't like?
Well, I uh . . . .
Would you like to have one of our nurses visit your house?
No, I'm just saying . . . .
Are you having pain? Are you depressed? Do you have questions? Are you dizzy, breathless, confused, disoriented, having chest pains, gangrene, paralysis, loss of vision or function in any body part?
You know what? I wanna change that 2 to a 3. It's really not a 2 at all. I don't know why I said 2. It's more like a 3, honestly, or even a 3-1/2. In hindsight, I'm changing it to a 3-1/2.
Now that's more like it, Mr. Boughton. Keep yer chin up, will ya?
Happy trails to you, until we meet again . . . .
I know I haven't been posting. I also know that I start almost every one of these entries out this way. Well, this time, I'm not going to promise to write more frequently - so there.
Right now, I'm up with insomnia. I'm aching in the WEIRDEST places (my forearms and shins), but other than that, I couldn't be better.
Over the last several days, I've been getting back to myself - almost entirely. No seizures, no numbness, no nothin. It's really pretty great.
But that doesn't explain why I haven't been posting.
I know that journaling my experience may be beneficial for me and for others - but it's one thing to talk about it in your diary and another for you to think of it as your responsibility to be a strong voice in the cause.
When it comes down to it, regardless of whether or not I thought it would help other people, I created this site for me. I needed to prove that I was giving back to the community/world or whatever while I was unable to get out of bed or off the couch.
Now that I'm getting better (and by better, I mean totally used to my seizure meds), I'm able to resume doing things that I enjoy and things I don't enjoy but must do. (Can we say studying for the bar exam?) I'm not saying that it leads to less time to post here, but rather that I'm less focused on my body, and hence less focused on the subjects that pertain to that body.
Not posting on In It For The Parking as though it were my job is helping me to stop letting MS become the defining characteristic of my personality on and off screen.
I doubt that I'm alone in this - having to make the choice between focusing on my self and focusing on my body or the disease.
It's way too easy to get caught up in how you're feeling - before long, you sound like one of those horrible cartoon caricatures of old people who can't find anything to talk about besides their bodies, medicines, doctors, etc. I don't know about you, but that *certainly* isn't the person that I want to be.
At first, I cried when I thought about it -- how I'd never be able to be as physically well as I was prior to having this disease, how bizarre it would be to try and make positive changes when OBVIOUSLY everything seemed too hard, how hopeless the rest of life seemed.
But suddenly, a light peeked through my stormcloud of doom, and I remembered something very important.
Who I am is stronger than any disease.
So, I'm getting back to me.
One of the things that really struck me during my recent conversation with my dad was the notion that I should be doing creative things. I agree. That is part of why I am drawn to blogging. This of course leads to another excellent point... My father said that he noticed that I often use this blog to do battle with myself. He is absolutely right. I work out my thoughts here but I also spend a great deal of time beating myself up and feeling anxious, guilty and sad. This takes the blog from the realm of pure creativity, into personal therapy but not always the good kind. Too often, my posts perpetuate patterns I would like to change in myself and a good dose of self-loathing as well. I think in the spirit of creativity and stress-management, I need to change the direction of my writing a little. My blog does not need to be a stage for fighting with myself, but it can be a good place for finding myself. With this in mind, I find myself returning (at least in thought) to my long neglected memoir.
My father suggested that I was 14 or 15 when the foundation for the MS was laid in place. He said that at this time I lost touch with who I really was and began the long battle with myself. Whatever the case may be, I do remember losing a lot of my spontaneity, creativity and joy around this time. I became a perfectionist, a performer and a critic. I started to see myself through the eyes of an imagined, outside observer who constantly tracked both my accomplishments and failures. This was around the time I first experienced anxiety and depression. Slowly I left behind many of the activities I loved as a kid. I eventually quit both dance and gymnastics (things I had always loved). When I was little, I was an uninhibited choreographer but by the time I was about 16, I was stifled when I tried to just listen to music and dance. Sometimes I have vivid flashes in my mind of the girl I was. Now, whatever comes of this, I want to remember that girl and draw myself closer to her, not for my dad, not because of MS but because this may be the key to a brighter future for me.
I remember a story that I was once told that inspired me to great leaps of creative thought.
Once upon a time there was a little girl who journeyed with her brother into a tomato plant. They became tiny and traveled right into the veins of the plant. They did this by concentrating on the plant with their eyes until they were absorbed into the stem. Once they were inside the plant, they seemed to float along in the liquid center of the plant. They journeyed from stem to limb and then eventually into a giant, ripe tomato. There, they had fun playing until someone plucked the tomato from the vine and then they had to find a way out quickly when a giant mouth threatened to consume them.I may have gotten the story wrong but that was the kind of tale that inspired me as a child. Like Tinkerbell from my favorite childhood play, "Peter Pan" said, "You just have to believe." I used to think that if I believed enough and looked hard enough, I would see the magical things from story books.
I would sit in the garden and stare at a plant for a long time, just waiting to be drawn inside. Sometimes, I would hide among the flowers and imagine that soon I would encounter a fairy. I would even dress up and pretend I had become one.
Once, when I was about 3, I saw a unicorn. The strange thing is that to this day, the image of the unicorn across the pond is still cemented in my mind. She glows white in the moonlight at a distance and despite what my rational mind says she is there.
Today I am grateful for this chance to remember...
This concludes the 33rd edition of the Carnival.
Tuesday, April 7, 2009
* Bladder symptoms may be responsible for withdrawal from social and vocational activities.
* Frequency, urgency, and incontinence may negatively affect interpersonal interaction.
* Bladder involvement may threaten the individual’s health, with complications leading to serious morbidity.
* Bladder symptoms are often mismanaged, precipitating such problems as acute urinary retention, damage to the detrusor (primary bladder muscle) and urinary tract infections (UTIs).
Read this post in its entirety:
How to Manage MS-Related Bladder Dysfunction
Monday, April 6, 2009
1. Momentum Magazine is published three times a year by the National Multiple Sclerosis Society. Formerly named Inside MS, Momentum Magazine, provides accurate, current, and comprehensive information to people with MS and those who care for them. Past and Current Issues can be viewed in PDF format on the NMSS website.
2. MS in Focus is published twice a year by the Multiple Sclerosis International Federation and available in English, Spanish and German. With an international cross cultural board, easily accessible language and free subscription MS in Focus will interest all those affected by MS worldwide. Issues can be viewed online, downloaded in PDF form, or subscribed to in paper copy. MSIF also has downloadable “How-To” and “Quality of Life” series.
3. The Motivator is a quarterly magazine published by the Multiple Sclerosis Association of America. This publication addresses the physical, emotional, and social issues that arise with MS, and provides information and support to many of those affected by this disorder. MSAA offers a number of downloadable PDF publications as well.
4. MS Focus is published quarterly by the Multiple Sclerosis Foundation and is available at no cost to MS patients, relatives, caregivers, and healthcare professionals. It provides practical information on research, alternative healthcare, coping techniques, and quality of life issues. An Online version is also viewable.
5. Neurology Now is the official publication of the American Academy of Neurology. It brings expert advice about wellness and disease prevention, new medications and therapies, and strategies for coping with neurological disorders. Our goals are to improve communication between patients and their physicians, support disease awareness and self-management, and provide public outreach for the AAN.
Friday, April 3, 2009
A neurologist is a medical doctor or osteopath who has trained in the diagnosis and treatment of nervous system disorders, including diseases of the brain, spinal cord, nerves, and muscles.
The Initial Appointment
Prepare in advance for your first visit to the neurologist. Compile a summary (or chronology) of your illness (and other diagnoses) which should include:
§ When did symptoms begin? What symptoms did you have at the beginning?
§ What brought on the symptoms or made them worse?
§ What other symptoms have occurred? When did they occur?
§ What tests have been done? What were the results?
§ What medications have you taken? What were the results of the treatment?
§ List all current medications and the dose you are currently taking.
Symptoms to Consider
§ Changes in Vision
§ Weakness and/or numbness in arms/hands/legs/feet
§ Coordination problems in arms or legs
§ Balance problem
§ Trouble walking or falling
§ Speech problems
§ Memory loss/cognitive problems
§ Decreased attention/concentration
§ Poor judgement/reasoning
§ Fatigue (constant or intermittent)
§ Bladder or Bowel problems
§ Sexual dysfunction
The questions and list of possible symptoms listed above come directly from my own neurologist's New MS Patient Form (pdf) at the Neurology Center of Fairfax. For more information regarding diagnostic criteria, please visit the National MS Society's page on Diagnosing MS or review Diagnostic Criteria for Multiple Sclerosis: 2010 Revisions to the McDonald Criteria published in Annals of Neurology (2011;69:292-302).
Read this post in its entirety:
Beginner's Guide to MS: Do I Have MS? What Does It Take To Get Diagnosed With MS?
Late updated: Feb 4, 2012
Thursday, April 2, 2009
1. What month were you born in?
2. Does anyone else in your family have MS?
Anne of Disabled NOT Dead has reopened her blog. However, the URL has been slightly altered. Please make the appropriate change in your blogroll and help to spread the word.
New link: http://disablednotdead-anne3.blogspot.com/
Welcome new MS blogger, Robert, whose blog is titled The Gifts of MS. Here is a portion of a post which I found spoke to me: Clarity.
Now, let me begin by saying clearly, without hesitation or qualification, that I have no desire whatsoever to be disabled, laid up, or otherwise sidelined by The Disease.
What I would like, though, is either to be clearly well enough to go about my business unhindered, or clearly sick enough to say unapologetically that I need some time off.Rest the rest of his post here.
Instead, I'm living in a puddle of uncomfortable indeterminacy, "sort of" able to function just fine, but simultaneously "sort of" not able to function well, sometimes on the edge of functioning not at all.
And for my convenience, I find myself completely incapable of explaining exactly what's wrong.
Wednesday, April 1, 2009
Yes!! This truly can be done. Notice the suspended funnels to help project the sound. Notice that the two players on the left of your screen have longer instruments (hoses), thus lower-pitched "horns." It is the vibration coming from the lips in the embouchure which sets the sound in motion through the pipe, whether it be made of brass, nickel silver, or a garden hose.
So you wonder if "I" have ever played a garden hose? YES, I HAVE!!!!
Seriously, I have. Really.