a pill!

i was diagnosed with ms 17 years ago. during that time the 1st 'disease modifying' drugs became available. they were helpful, but every drug required some form of injection - subcutaneous or intramuscular. the newer medicine that i've been using, tysabri, is by intravenous injection. while their worth was great, i am so excited to report something better.

the 1st ever disease modifying oral treatment has been approved by the fda! initially called fingolimod, now GILENYA, is simply a pill to swallow. i think this new one will bring the number of pills i take each day to be about 24, this includes vitamins and supplements. gone will be the needles and i should make even greater progress toward limiting my disease progression.

from my understanding, gilenya will keep the immune cells that are attacking my myelin from ever leaving the lymph nodes. if the myelin is left alone, no new symptoms should appear. myelin can even be regenerated very slowly. that means there's a possibility of me regaining some functions that are gone now. there are risks, but stopping this disease is worth it.

i'll keep you posted.

positives

2 things have been making a big difference in my life.

the 1st is medical: my tysabri treatment. my energy is significantly increased in endurance. it used to be that one active day would need a resting day to follow. now, i can have 3 active days in a row and just need a good night's sleep. gone are the days when activity overwhelmed my body. i still don't push myself too hard. it's just nice not to spend half my time recuperating after doing things i enjoy...visiting friends, strolling around my neighborhood, etc.

the 2nd is spiritual/emotional/mental: using the ideas from 'the secret' [see my last post]. the change in perspective has made everything a bit better. i'm much less frequently sad. when i do get upset, i can temper it w/ images of my future able body. just the thought that 'my able body' is possible [though i have no idea how] makes everything more bearable. visualizing takes practice. my mind tends to wander. so practice i do. writing seems to help me stay focused. my images are not fancy. i see myself in everyday activities - stepping into the shower, standing up from the toilet, working out at the gym. the process is strengthening my spirit, rejeuvenating my hope. i will not forfeit my dreams.

the secret

i just saw a movie called 'the secret.' the secret is the law of attraction. the thoughts we have literally draw things to us. all along, i've been expecting my ms to worsen. it has. well, no more.

i'm doing what the movie suggests.
i ask for what i want.
i believe it will happen.
i am open to receive the good health that i seek.
i give thanks every day for the richness of my life.
i'm visualizing myself in an able body - standing to hug my husband when he comes home from work, walking around my neighborhood, swinging at the park with my niece. i don't know how it will happen. i ask, i believe, i will receive.

if you can, see the movie. it is empowering.

pain

Dr. Donald Barone, director of the MS Center of SJ:
“There are no words that take away the pain people experience as they see their physical functioning declining.” [MS Connection 2009 issue 4 p.6]

i couldn't have said it better.

improvement?

dare i write it…? could i actually have some improvement? i put it as a question out of fear that it’s not true. it is though. there is an exercise i do w/ my arms, my aide always does the left arm. a while back i could put my arm straight out in front of me and raise it toward my ear. a few months ago i couldn’t lift it, only hold it straight as my aide lifted. yesterday, i lifted it again! so yes, there is improvement. i am still having days when my right arm and hand are weaker than 6 months ago but not worse than 2 months ago. i think my decline has finally become a plateau! the 1st i believe since 2007! thank you God, Tysabri, my body.