INDUSTRIAL DISEASE...

Doctor Parkinson declared 'I'm not surprised to see you here
You've got smokers cough from smoking, brewer's droop from drinking beer
I don't know how you came to get the Betty Davis knees
But worst of all young man you've got Industrial Disease'

-Dire Straits 1982
The song takes a look at decline of the British manufacturing industry in the early 1980s, focusing on strikes, depression and dysfunctionality. For example, the absurdity of media-driven maladies is laid out in a segment of the song describing the narrator's visit to a doctor's office for treatment of his "Industrial Disease".

The reference to "Brewer's Droop" as a medical condition is an in-joke, referring both to the effect of alcohol on libido and to the band of the same name that Mark Knopfler played in prior to Dire Straits.
I wish someone would ask why I'm in a wheelchair so I could tell them I have Industrial Disease...

[edit]

EDUCATION...

Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.

Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.

Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.

Wild men who caught and sang the sun in flight,
And learn, too late, they grieved it on its way,
Do not go gentle into that good night.

Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay, 
Rage, rage against the dying of the light.

And you, my father, there on the sad height,
Curse, bless, me now with your fierce tears, I pray.
Do not go gentle into that good night.
Rage, rage against the dying of the light. 

-Dylan Thomas

Great poem. I'm glad "they" only made me read and memorize the last two lines though... ;-)

Where I am with Annette...

Ok. That video was horrifying to watch but she's dead and and has no worries. I've got my own problems and they are not that bad. Also, I am comforted by the fact that my family would never try to keep me alive at all costs for that long. Happy Master's!

bummer not that she's dead but that she lived so long...

http://www.ctvnews.ca/video?playlistId=1.985726

Thich Nhat Hanh...

“Letting go gives us freedom, and freedom is the only condition for happiness.”— Thich Nhat Hanh

We often attribute our happiness to external circumstances. But in reality, how happy you are is less dependent on what happens to you and more about how you deal with it. Yet, a lot of those insidious thoughts are in our subconscious. We either aren’t aware of them or don’t realize the power they have on our state of mind. One way to take back control is to begin paying attention. Tune into your thoughts. Listen to find out if they are trying to sabotage your life.

from belief.net

So very true...

ANOTHER TRUISM...

Also from MS message board:

"I am told all the time by my patients that walking is something wasted on the ambulatory. People do not appreciate the ability to be able to get up and move around.  You don’t think about it unless it is something that has been impaired or lost." 

PROGRESS...?

You know, Richard Cohen said it years ago but I just read it again and the impact was a little different this time. Even though my MS has been and remains stable at this time it still feels a little like a wake up call.

"The dirty little  secret about progressive diseases is that they progress."
-R.Cohen

SO TRUE...

A quote from an MS message board:

"I stopped trying to explain my M.S. It was like trying to explain what air looks like."

All I can say is ditto.

BEST THING...

The best thing to ever happen to audiophiles and iPod owners is the Logitech "jam box" for mp3 players. No question. You can find it at amazon.com for about $110. Do yourself a huge favor and buy one. Charges for a few hours by plugging in to the wall. No batteries! I have two of them.

AMEN...

Posted on FB by my friend, Kristin F. Thank you for posting and all I can say is amen! Read this.

http://www.abc.net.au/news/2012-07-03/young-inspiration-porn/4107006

DOCUMENTARY FILMS...

I must say that I'm horrified that there are well educated and well traveled people in this town who have no understanding of what a documentary film is... I don't like it here. Have I mentioned that?

OK WITH IT ALL...

Maybe it is the heat but I kind of just realized today that I'm ok with whatever happens MS-wise. You know, Tysabri could stop working for me at any time and I'm ok with that. In fact, I'm actually kind of tired of fighting "it". That being said, I would love to live another 20 years or so...to see what happens with technology if nothing else!


Peace to all,
H

MY MOTHER IS THE FONZ...

Remember the FONZ from Happy Days and how he could make the jukebox turn on if he just whacked it with his fist? That is my mother. Although if she is the female version of that, she may be Rizzo from GREASE. I first recognized this phenomenon with our refrigerator. It rattles sometimes and if she whacks it with her fist, it stops. I've tried it. Nothing. Now I'm sure of it. I've had a fan for @ a month and it stopped working yesterday. I tried everything from using a different outlet to smacking it on the side. Nothing worked and she kept asking if I wanted her to look at it to which I replied "No, I've already tried everything". Once I said "Fine. Do whatever you want", she went downstairs and immediately got it to work by tapping it gently on the side. Are you kidding me? Rizzo  magic? You be the judge.

MANAGING STRESS, SOCIAL SUPPORT IN MS

FROM PSYCH CENTRAL VIA TURNFIRST: 


Patients with multiple sclerosis who receive stress management training experience less new disease activity, according to a study published in Neurology.

Half of the 121 participants in the study received stress management training, which included meeting with a therapist for 16 individual 50-minute sessions over five to six months.

They learned problem-solving skills, relaxation techniques, and how to increase positive activities and enhance social support. They were also given the option to choose extra sessions on topics such as fatigue management, anxiety reduction, pain management and insomnia treatment.

After the treatment ended, the stress management group was followed for another five to six months. The remaining participants were put on a waiting list as a control group. After 10 months, they attended a five-hour workshop on stress management.

During the treatment period, 77 percent of those in the stress management training group had no new lesions, or brain damage that indicates disease activity, compared to 55 percent of those in the control group.

“The size of the effect is similar to other recent phase II trials of new drug therapies for MS,” said study author David C. Mohr, PhD, of Northwestern University Feinberg School of Medicine in Chicago.

“While it’s premature to make any specific recommendations about using this type of stress management training to manage MS disease activity, it will be important to conduct more research to identify specifically how this treatment is benefiting people with MS.”

Furthermore, questionnaires revealed that those receiving the training had greater reductions in their stress levels than did those in the control group.

Interestingly, the positive effects of the training did not continue after the treatment period.

“This was unexpected,” Mohr said. “It’s possible that people were not able to sustain their new coping skills once the support ended, or that some aspect of the treatment other than stress management skills, such as the social support, was the most beneficial part of the treatment.”

PROPRIOCEPTION

I explained this phenomenon to my mother recently perhaps it will help with the door thing....

PROPRIOCEPTION

Basically, proprioception is the sense of where your body is in space. It can quite obviously be strongly and adversely affected in people with MS. I am one of those people resulting in my slamming into the doorframe. Anyone else? 

Door frame too narrow...

I'm 42 and live with my parents now. The door to my bedroom is not wide enough for a wheelchair and I constantly get bitched at for running into the frame of the door. Does anyone else have this problem. Please tell me if you do because I'm starting to resent my parents...

DANCING QUEEN...

It's funny how certain songs stick in your head and remind you of a specific time. For me, It is "Jungle Love" and "Dancing Queen". 


"Jungle Love" reminds me of a time when I was about 15. When I went to China with my Dad and the former Secretary of Health and Human Services in 2008, the Secretary came up with a game for us to play. We were sitting at the dinner table at the home of the ambassador to China. Secretary Leavitt decided that we all needed to think of a song that reminded us of a specific time when we were between the ages of 13 and 15 and then tell the group about it. I panicked at first then remembered a time when I was driving down a dirt road with friends and we were listening to "Jungle Love" by the Steve Miller Band. I had to sing it for the group. As I'm sure you can imagine, my performance was breathtaking.


The next song that is stuck in my head is "Dancing Queen" by ABBA. I heard this song while riding back home to Atlanta with a friend after my MS diagnosis. It was very poignant as I had never been a dancing queen and knew then that I probably never would be. I could not listen to the song for a long time but I am able to enjoy it now. I do however always get a lump in my throat when I hear it.

PLEASE READ BEFORE YOU CONSIDER CCSVI....

          http://www.fda.gov/MedicalDevices/Safety/AlertsandNotices/ucm303318.htm

UPDATE

Turns out my recent deficits were from the heat as suspected. My neurologist said a two week delay of my meds was fine. Also, had an infusion today and feel great! Thanks for reading...

Tysabri and venting...

So, I finally got the Tysabri two weeks after it was due. I have felt some backlash from the insurance delay and the heat...I'm sure. It has been at least 15 degrees above normal for this time of year for the past couple of weeks. So, in the low 80's rather than 65. This stinks for me more than you know.


 I do hope I will get back to "baseline" after more infusions...not that I'm bitter about my parents not just paying for it so that I could get it or anything...just saying. It feels like more of a death defying feat than usual to take a shower right now but it is always kind of difficult for me. So, it is hard to know what exactly to blame it on. It may be that it is unrelated to the delay. 


My new life plan is to take a blogging workshop by Hollis Gillespie when it cools down a little bit. My mother greeted this with disdain because it is in "Atlanta"...which she said, well...with disdain. I will get over my "little mood" though... I swear.

You're not from around here are ya?

I had the pleasure, and it truly was a pleasure, of sitting next to a very nice man in the infusion center yesterday. It's mostly an oncology center but you get my point. He was older and to understand his comment and the effect it had on me, you have to know a little about me and my home town.


First of all, my hometown is in the deep south and is painfully conservative...in every way. Second, you should know that while not wild and wooly, I am the opposite of that. This man was charming and engaging but seemed "kind of churchy" if you know what I mean.


We were chatting and he said "Now I can tell you're not from around here. Where are you from"? I giggled and said "actually I am from here...born and raised. I did live in Colorado during graduate school and spent 10 years in Atlanta. Maybe that's what you sense". To which he gave a very knowing "oh".


No greater compliment has ever been given or received. Thank you, whoever you were. Also, I didn't receive my Tysabri yesterday due to an insurance glitch...but hopefully will on Friday... Insurance is a nightmare.

ANIMALS DISCRIMINATE AGAINST THE HANDICAPPED...

They really do. I swear. If you are not handicapped, you have no idea. I can only speak about raccoons, cats, and dogs but I'm sure they all do it. Suffice it to say that if you try to correct an animal in any way and are handicapped, they will blow you off like you wouldn't believe. It is definitely a "talk to the paw...loser...what are YOU going to do" type of situation.

JC VIRUS...

I forgot to report that according to my latest blood work I am JC virus negative. This is a big deal. It effectively means that my chances for contracting PML while on Tysabri are significantly diminished.


Please see the following article to understand more about this issue.


http://ms.about.com/od/treatments/a/Testing-For-Jc-Virus-Antibodies-For-Tysabri-Related-Pml-Risk.htm

I'M BACK...

Well, I went to Atlanta on my first trip back in a couple of years. First, let me say, I had a great time. I really did. But second let me say that it really highlighted for me just how difficult it is to function out in the world.


It was incredibly difficult to get to a bathroom I could use. While I had a roll in shower, grab bar, etc. in my room, outside of the room, was a whole different story. I did, by the way, fall in love with the roll in shower. But...I found myself "running the gauntlet" to all of the non-handicapped accessible bathrooms throughout the hotel...from walking up 21 steps with my sister-in-law carrying my walker to rolling myself a REALLY long way across the hotel to get to an accessible bathroom. It was exhausting and my arms are pretty sore.. 


When I was alone in the hotel, I also fell and it took me at least an hour and a half to get up. I ended up with bad rug burns on my knees or maybe they are more like rug scrapes. Despite it all, I had a great time though it does give me pause about planning my next trip. Although, I probably will because that is just how hard headed I am.

GOOD LINK...

http://www.invisibledisabilities.org/educate/invisibleawareness/multiplewhat/