Friday, November 21, 2008

You don't know what you've got til it's gone





The Importance of the Opposable Thumb
The thumb, unlike other fingers, is opposable, in that it is the only digit on the human hand which is able to oppose or turn back against the other four fingers, and thus enables the hand to refine its grip to hold objects which it would be unable to do otherwise. The opposable thumb has helped the human species develop more accurate fine motor skills. It is also thought to have directly led to the development of tools, not just in humans or their evolutionary ancestors, but other primates as well. The opposable thumb ensured that important human functions such as writing were possible.The thumb, in conjunction with the other fingers make humans and other species with similar hands some of the most dexterous in the world.
That's the Wiki definition. Let me elaborate.

Try without using your thumb for example:

  • turning your key in the ignition
  • buttoning clothes or pulling up your fly
  • using a tweezers (my eyebrows become Neanderthal overnight)
  • signing your name
  • finding the correct change

The list goes on...I know from my own stupid experience.

I chopped not a slice, but a divot, from my thumb while making soup. Yes, it was chilly herein South Florida, all of 55 degrees, and I needed to make a large pot of soup. (I swear, this Martha-mode stuff is a seasonal disorder with me)

It the knowledge of the usefulness of the thumb from one's dominant hand isn't enough, try stopping the profuse flow of blood from one with your other hand. It was rather comical, and messy. So much for my soup.

In other news, I have completed my first week taking 4 aminopyridine. The first two days were rough. My head felt like a helium balloon. I was dizzy and every nerve that ever went blinky before was in full spaz mode. I even felt blue, out of the blue, so I knew it was the introduction of this new chemical compound to my brain.

And on the third day ( of course I'm going to say it!) She rose again!

Yes, amazingly. I felt great! I walked not only without dragging a leg behind me, my gait was smooth! While sitting or in repose, I didn't experience any of those myclonic herky-jerkies, and I wasn't fatigued!

It's been a week today, and I'm still not ready to give this capsule the credit for my renewed self. It could be the weather. It could be coincidence, or as in my case (LOL)...Divine.

I shall keep you posted.

Now , I have Miss Joni Mitchell in my head.

Wednesday, November 12, 2008

New MS Journey or New MS guinia Pig






Yup..I'm going to do it. I'm going to try a new drug.


Briefly, (for the benefit of the new MS bloggers out there that might have just recently tuned in) I have been off all drug therapies that are meant to slow the progression of the disease for a year now. My journey began with strong oral immune suppressants like Cellcept and Imuran. I was on Copaxone for a couple of years. I had no adverse reaction to it other than bothersome site reactions. I could have gone on taking it but my lesion load doubled in the last six months while on it. So, on to interferons. I hated them but gave it my best shot (pun not intended). My side effects were worse than the disease. I was miserable, but I kept trying different doses, different brands, animal and bacterial. After a year or so of that nightmare I decided to quit. The only other option I was given, if not pushed to try, was Tysabri. I just wanted a break from feeling miserable, and to everyone's surprise I have been doing very well without them. I have had my ups and downs but I have felt fairly stable.
I have had no new lesions during this time.I can't help but think that if I had been on a drug, the drug would have been credited with my success.

I've had a great year. I've taken three trips by myself to visit my children. I took a long road trip with my hubby. I've been active again in my interests. I have been painting, going out with friends and generally enjoying myself despite the MS.

Don't get me wrong. I still have MS. I do face the uncertainty of progressive disabilities. I think I've just adjusted to life with it better than in the past. I still have trouble with my vision. I still use an intermittent catheter. I have spasticity, tremors, TN, headaches, nerve pains, fatigue. I walk funny with a cane. I was listing to port all day yesterday. I'm either numb or in pain (never could understand how that is possible) and I get the HUG.

I was forced into unemployment and disability 6 years ago, so I don't have to push myself to keep a career or job. For me that means less cash flow and an abundance of time. I can crash, be slothful, or just basically go to hell and the only pressure I face is the one's I still tend to place upon myself. It would be a magnificent arrangement if not for the lack of legal tender and the plethora of unpredictable symptoms that come with my new daily life.

In a recent post I told you about my last neuro visit in which I merely asked about 4-AP. Unable to answer any questions about it, he wrote a script for it without any prompting almost daring me to try it.

I did my research with the help of Lisa at Brass and Ivory.
It looked promising to alleviate the nerve pain I experience with walking and general fatigue. I'm hoping it will help with all the twerpy paroxysmal symtoms.

I finally took the script to the compounding pharmacist in town. I was amazed! He knew nothing about 4-AP either, but spent more time with me than my neuro ever has, researching it and taking account of all the meds and supplements I take regularly. He wanted to look into it even further and vowed to call me back the next day with what he had learned. Amazing!
The only side effect that he was concerned about was the possibility of it raising my blood pressure. All in all it felt it was safe, ordered the needed chemicals and filled my prescription.
He gave me all the information including ammunition to use if necessary with my insurer, citing the prescription's Orphan Drug Status and FDA approval for use in MS and Spinal Cord Injuiries.

Today's the day. I'm staying put in the house. I took my first dose this morning. I'm monitoring my BP. When beginning any new promising drug therapy, I experience contradictory feelings about it. I'm hopefully excited that it will help with my daily quality of life and I'm leary of putting yet another man made chemical compound in my system. Yup, I feel like Alice.

Now if I could just get Huey Lewis out of my head....

Wish me luck!

Sunday, November 9, 2008

My God





I really wish my MS brain would allow me to remember the lyrics to this ditty. There have been so many times I have wished for these very words when confronted by friends, family and acquaintances who seem to stand "taller" , if you will, because...yes...they have THE answer, and it came to them from THE highest authority.


I have heard this on endless topics too! Recently some of those connected folks have made mention of such mandates that I should follow concerning:


  • My health ( Yes...if I had treated my body like the temple that it surely is I would not be afflicted or I must have sinned against Him /Her or If I only ate raw organic foods without faces I would surely be cleansed or maybe , I get it, I most likley have been praying to the wrong Him/Her)
  • My Politics. ( So, if my guy won and God's on your guy's side that must mean...OMG! Where's that handbag? We're on our way...should be a helluva ride!)

Monday, November 3, 2008

Scream!

As I write this I'm experiencing what I refer to as "Silly Word Syndrome". Really...SCREAM? Maybe from the childhood rhyme, You scream, I scream, We all scream for Ice cream". Ok, I'm over it.

Enough about SCREAM, this post is about STRESS. 'Tis the season, apparently. Season's are all running together, it doesn't seem to matter. The fact that the holidays are right around the proverbial corner is just icing on the cake. We have personal illness, medical costs, relationships, finances, and on the bigger picture screen we have war, failing economy, bigotry, bias, intolerance...the list is too long.

Ask anyone with MS and they'll tell you that it's true, stress very often precedes a flare of symptomatology. Having the disease itself is cause for significant stress, and stress causes what?...more disease? Feel that hamster wheel spin. It's enough to make you...OK, back to that again: SCREAM!

I recently read a study on social/emotional stress and autoimmune disease. Of course the study was done on mice (poor mice). It showed that social stress levels elevates pro-inflammatory cytokine interlukin-6 and worsens autoimmune disease symptoms. Apparently their was this happy group of cohabitating mice. They all got along nicely. They had no stressers and life was good. They were injected with a virus that caused an infection that affected their nervous system similar to multiple sclerosis. Still, they got along and life was still good but now they had something like MS. Then the researchers added social stress. They introduced an intruder mouse. He must have been an alpha bully. Bad Ass Boss Mouse stressed the other once happy, stress free mice that now had compromised nervous systems. This new social stress caused a rise in the interlukin-6 levels in the brains of the once happy rodents and produced more severe MS-like symptoms.
The study went on to theorize that if a neutralizing antibody could be administered it would inhibit the body's pro-inflammatory response and reduce the MS symptoms. This could include anti-inflammatory drugs, excercise, antidepressants, omega-3 fatty acids, mindfulness , meditation, relaxation training.
Seems silly...why not just say no to Bad Ass Mice.


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