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from Julie Stachowiak, Ph.D. Before you give up anything you like to do, consult with an occupational therapist (OT). These people work to keep us functioning, even when some of our body parts don't seem to be playing on the same team that we are. Look, MS has taken lots of stuff from most of us and it is up to us to hold on to the pleasurable things in life. If you love to garden or cook or paint, but can't figure it out with your spasticity or fatigue or tremor, talk to an OT. Take the steps you need to in order to keep doing the things that make life fun and help you forget about (or at least be at peace with) MS for a little while. Take care of yourselves, my friends.

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FDA Confirms 13 Cases of PML with MS Drug
By Peggy Peck, Executive Editor, MedPage TodayPublished: September 17, 2009

WASHINGTON -- The FDA said it has confirmed 13 cases of progressive multifocal leukoencephalopathy (PML) in patients receiving natalizumab (Tysabri) monotherapy for multiple sclerosis.
Four of the cases were patients in the U.S.
The FDA said there have been no confirmed cases in patients receiving natalizumab for Crohn's disease, an indication the FDA approved in January 2008. But in its safety update, the FDA noted that less than 2% of natalizumab use in the U.S. has been for Crohn's patients.
The FDA is not changing natalizumab labeling or prescribing information, or altering the TOUCH prescribing program, which is a risk management effort that oversees all natalizumab prescribing in the U.S.
A paper published online last week by the New England Journal of Medicine put the total number of PML cases at 14, but that paper included cases reported since November 2004, when natalizumab was first approved for treatment of relapsing forms of MS.
When reports of PML surfaced in 2005 the drug was withdrawn and was then reintroduced in July 2006.
The FDA said the risk for developing PML appears to increase with the number of natalizumab infusions received. The 13 patients who developed PML received an average of 12 to 35 monthly infusions per patient. The average number of infusions received before the diagnosis of PML was 25.
Among patients who have received at least one natalizumab infusion, the overall rate of developing PML was less than one case per 1,000.
"Based on available data from the U.S. and outside of the U.S., the current rate of PML in patients who have received at least 24 infusions ranges from 0.4 to 1.3 per 1,000 patients," the FDA said.

Flu shots or not?

I have a feeling about taking the regular flu shot as well as taking the H1N1 vaccine. It is a uneasy one, as I am not confident in what I am hearing from our government officials and the medical community as well as the MEDIA. I asked my Neuro at my exam the other day, he forgot to tell me what he thought because he was telling me why Big Pharma would not fund the trails on Adult Stem Cell Transplant because the money isn't there for them to get off of therapy drugs(already approved) and development of new versions of old therapies that can be patented, and become a blockbuster money making products that the medical community endorses and prescribes. once again, greed prevails and the patient gets the raw deal. Therapy, no cure but another bandage that treats symptoms but doesn't cure the disease. Someone told me the other day that the Medical and Scientific community has not CURED a disease since Jonas Salk discovered the CURE for Polio. That was back somewhere in the early 50's. If that is fact, it is amazing. Smell conspiricay? I will let you know what I decide on the flu shots. Any opinions would be welcome.

Almost 3 months out!!

October 23, 2009 Quote
Change "The only difference between a rut and a grave is their dimensions." ~Ellen Glasgow

Today got my fix at my chiropractor,adjustment,Tens, and acupuncture. Feeling great,more exercise is what I have to incorporate into my daily routine. Most of the time the intention is there but I can rationalize really good. My joints feel relieved since I have been taking a juice supplement. Another two and a half weeks and it will be three months since I had Stem Cell Treatment in Costa Rica. The Doctors said that it typically takes 3 to 6 months for the new cells to start to grow so I am getting anxious.Everything regarding my MS symptom's feel 20 to 30 % better except my balance, which I would classify as the same as before, pretty shakey. None of the friends that we met at the Institute of Cellular Medicine have communicated any significant changes yet so we must all be on the same page with the new cell growth. Lets' all have agreat weekend and may all your favorite football teams win today and tomorrow. Blog at you on Monday, Roger

THIS POST IS A LESSONS WE ALL CAN TRY TO INCORPORATE INTO OUR LIVES, BY CHANGING OUR FEELING'S, ACTION'S and THOUGHT'S(FAT) Written By Regina Brett, 90 years old, The Plain Dealer, Cleveland , Ohio . "To celebrate growing older, I once wrote the 45 lessons life taught me. It is the most-requested column I've ever written." My odometer rolled over to 90 in August, so here is the column once more:1. Life isn't fair, but it's still good.2. When in doubt, just take the next small step.3.. Life is too short to waste time hating anyone.4. Your job won't take care of you when you are sick. Your friends and parents will. Stay in touch.5. Pay off your credit cards every month.6. You don't have to win every argument. Agree to disagree.7. Cry with someone. It's more healing than crying alone.8.. It's OK to get angry with God. He can take it.9. Save for retirement starting with your first paycheck.10. When it comes to chocolate, resistance is futile.11. Make peace with your past so it won't screw up the present.12. It's OK to let your children see you cry.13. Don't compare your life to others. You have no idea what their journey is all about.14. If a relationship has to be a secret, you shouldn't be in it.15. Everything can change in the blink of an eye. But don't worry; God never blinks.16. Take a deep breath. It calms the mind.17.. Get rid of anything that isn't useful, beautiful or joyful.18. Whatever doesn't kill you really does make you stronger.19. It's never too late to have a happy childhood. But the second one is up to you and no one else.20. When it comes to going after what you love in life, don't take no for an answer.21. Burn the candles, use the nice sheets, wear the fancy lingerie. Don't save it for a special occasion. Today is special.22. Over prepare, then go with the flow.23. Be eccentric now. Don't wait for old age to wear purple.24. The most important sex organ is the brain.25. No one is in charge of your happiness but you.26. Frame every so-called disaster with these words ''In five years, will this matter?".27. Always choose life.28. Forgive everyone everything.29. What other people think of you is none of your business.30. Time heals almost everything. Give time, time.31. However good or bad a situation is, it will change.32. Don't take yourself so seriously. No one else does.33. Believe in miracles.34. God loves you because of who God is, not because of anything you did or didn't do.35. Don't audit life. Show up and make the most of it now.36. Growing old beats the alternative -- dying young.37.. Your children get only one childhood.38. All that truly matters in the end is that you loved.39. Get outside every day. Miracles are waiting everywhere.40. If we all threw our problems in a pile and saw everyone else's, we'd grab ours back.41. Envy is a waste of time. You already have all you need.42. The best is yet to come.43.. No matter how you feel, get up, dress up and show up.44. Yield.45. Life isn't tied with a bow, but it's still a gift.

Well the weekend is past and it is already mid-day on Tuesday the 20 th. of October. I am too old,time and life is flying by. Last night we studied : John 3-16 in our BSA fellowship. Over 450 men of all ages coming together to Study The Word. This is my first year and I really enjoy the group of 15 other men in our individual group. I get great calm and reduction of stress. This is great for my MS symptoms and my mental As I was visiting with one of the fellows in our group our conversation turned to golf and my health. When he told me that his adult daughter has MS it turned into a neat conversation as not only did I know her and her husband but had spent the weekend with them and two other MS couples that were guest of The Eastern Chapter of the MS Society. As I mentioned in a previous blog we were in Ashville, N.C. for aweekend retreat/ reward for fund rasing accomplishments for this (2009) MS Walk. It really shows how God controls all things. Jen and her husband were so much fun getting to know, by the way Jen and her team have raised over 100 thousand dollars in the last 3 years. GO JEN! Wish she was on our team, Get'er done. Really feeling good today and will head for the YMCA to ride the bike for 30 minutes. Rember to Remember and Attitude is Everything!! http://todaywithms.blogspot.com/ See you tomorrow. Roger

The last few days have slipped by like hours. Over the weekend we spent 3 days in Ashville,N.C. as guest of The EASTERN CHAPTER OF THE NORTH CAROLINA MS SOCIETY. We enjoyed meeting new friends involved in fund raising for The MS Walk. The 4 couples together raised over ONE QUARTER of a MILLION Dollars in the last three years for THE EASTERN CHAPTER. That is a big number, a great effort of TEAM MEMBERS, and tremendous generosity from FRIENDS, FAMILY, AND THE BUSINESS COMMUNITY. Monday involved travel to The David H.Murdoch Science and Research Campus in Kannapolis,N.C. This is was created by David H. Murdoch with $185 million dollar commitment to research for disease, one of which is MS. Most of what I learned at the conference was that there is little or nothing going on with Adult Stem Cell research. All focus seemed to be with finding more Pharma therapies that aid in treating the disease rather then finding a cure. I was concerned and disappointed that Stem Cell Research was not on the top of the list. Well the new weekend is here and I hope that all of you have a great one. My new cells are starting to grow and I am feeling great, Remember to Remember and that ATTITUDE is what determines your ALTITUDE!! Best of Health, Roger