– Negative again! Tysabri continues!
Although my index went from .07 to .11 – its not a huge jump and still negative. We still don’t know if the Titer Index value plays a huge role or not. Some Dr’s seem to think so.
My 58th Tysabri infusion is scheduled for 1/16. That makes 4.5 years (58 divide by 13 infusions per year) on Tysabri.
I will have my MRI (its been about 2 years) in the next 2 weeks to check for lesion / Brain/Spine changes. HATE the MRI!
Growing up i was Rt hand dominant, however I Golfed lefty and batted lefty (it also gave me an extra step closer to 1st base 🙂 ). My Father said if i ever wanted to get last years clubs handed down, I’d switch and learn Righty; which I did. That was many moons ago (8yrs old and up) and well before MS Dx with optic Neuritis in 2008 at the age of 39. In the past 6 years my Rt side foot drop and Rt hand/arm Neuropathy along with Frozen Shoulder has plagued me — well, like the plague.
I use several tricks to “keep moving” and work smarter, not harder.
1. Massage Therapy (she spends a good 30 minutes on my hand, arm and shoulder alone).
2. I use a “signature stamp” from Vistaprint to sign/stamp checks and other documents where a stamp is appropriate.
3. I use a UBE (upper body Exerciser) – like a small bicycle wheel with pedals for my hands, arm and shoulder.
4. Tricep pressdowns & lat pulldowns with a velcro cuff that has a hook on it and very light weights.
5. Cable rope pulley on my door to stretch the arm.
6. I am constantly stretching my hand and fingers backwards to keep them out of the “death grip”
7. i wear a compression glove at night and a hand splint a couple nights a week that keeps my hand and fingers/thumb in a open slightly arced position.
8. I use a “Handshoe” mouse which i can move but i still have to left and right click by pushing my right fingers with my left hand’s fingers. I also have bluetooth trackpads for my Mac and Windows machines that i use with my left hand.
9. other tools i use can also be found on my blog 🙂
Hope this is somewhat helpful. I can link you to the actual products that can all be found on Amazon if you would like.
Hope for a cure, thats my wish for Christmas.
Tysabri #56. Driving and vision Test Passed!
Many of my friends know how into technology and home automation I am. I really enjoy fixing things. I always have. I can remember early on in life fixing things around the house. My technology crippled parents would be amazed when things like the toaster oven or microwave were working again after I fixed them. Or the time I ended up converting all of the hard-wired rotary phones in the house to modular jacks and touch tone. I ended up saving them $$ on their leased phones – you know the real heavy ones with the loud hammer bells? I also used to get hand held video games and take them apart to see what made them tick and then put them back together again. Sometimes a screw or part might have been missed so i’d do it all over again. I LOVED IT.
My wife asked me to fix her towel rack the other day and I was worried I’d have to call someone and pay them as this would be something I could do no problem. But MS has taken away a lot of skills from my right hand and arm so much that I so gladly would give just about anything to have back. It sometimes brings me to anger or tears the things I can no longer do that I loved so much. Well I’ll be damned, I actually did fix the towel rack for her. It might have taken me a couple minutes longer and I invented new ways of doing it or holding and propping things up but it made me feel worthy again. I even had the energy to put all the tools away and clean up afterwards.
“Tools” were then and even now a very important part of how we can get things done. I’d like to share with you some things that I use to try to make my life with MS a little easier.
Neato Robotic Vacuum! Does a better job than the cleaning lady! Cool patterns too! http://www.neatorobotics.com/
Grabber Tool. Why bend over if you dont have to? Unger 92134 36-Inch Nifty Nabber Pick-Up Tool with Aluminum Handle
NEST – Thermostat – www.nest.com – Control your heating and cooling right from the web or your smartphone!
I will post more tools of my trade that make MS life much easier in my next post. To be continued…Part 2!
Cooler weather is here! 5 Year Wedding anniversary next week. Driver training going well – has rained every day I’ve trained and ppl cant drive very well! They are testing me!
Trying to have fun…..
