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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.
Friday, October 30, 2009
Tuesday, October 27, 2009
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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When reports of PML surfaced in 2005 the drug was withdrawn and was then reintroduced in July 2006.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.
var addthis_pub="medpagetoday";
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.
Monday, October 26, 2009
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.
Friday, October 23, 2009
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
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
Thursday, October 22, 2009
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.
Tuesday, October 20, 2009
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
Friday, October 16, 2009
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
FDA approval possible by October 22/09
Oct 14, 2009
Panel Recommends that FDA Approve Fampridine-SR (proposed name Amaya) for Symptomatic Treatment of MS -- Found to improve walking speed for all types of MS
A U.S. Food and Drug Administration advisory committee today recommended that the agency approve marketing of Fampridine-SR (Acorda Therapeutics, with a proposed name change to Amaya) for its ability to improve walking speed in people with any type of multiple sclerosis. While the FDA is not required to follow the recommendations of its advisory committees, it usually does. The agency is expected to make a final decision about whether to approve the drug for market on or before the target date of October 22, 2009.
During an all-day meeting held October 14, 2009, the FDA advisory committee considered Acorda Therapeutics’ application for approval of Fampridine-SR, reviewing data about the drug’s effectiveness and safety. The committee also heard public testimony from individuals and patient advocacy groups, including the National MS Society, which testified to the unmet need for therapies to improve walking for people with MS.
Among its discussions, the advisory committee recommended that the FDA require the sponsor to evaluate the effects of doses lower than originally studied, but that these studies would not be required to be done prior to the drug’s marketing approval. In addition, the FDA is likely to require a plan to mitigate potential risks. During its presentation to the committee, Acorda representatives outlined such a plan -- the Risk Evaluation Mitigation Strategies (REMS).
Background on Unmet Need: Problems with gait (difficulty in walking) are among the most common limitations in MS. While there are six FDA-approved disease-modifying therapies that are at least partially effective against some forms of the disease, as well as rehabilitation and symptomatic treatments for some symptoms, at present there is no pharmacologic treatment specifically available for MS-related difficulty walking. This disability has wide-ranging effects on people’s lives, even in its milder manifestations.A recent survey among more than 1,000 individuals with MS and many of their family members examined the impact of mobility issues, such as difficulty walking, on quality of life among patients with MS and their families. Some two-thirds of patients reported difficulty walking and of these, 70% reported that such difficulty was the most challenging part of their MS, and most reported that difficulty walking restricts their daily activities significantly, including their ability to travel. (Read more about survey results)
About the Drug: Fampridine-SR is a sustained-release formula of 4-aminopyridine, which blocks tiny pores, or potassium channels, on the surface of nerve fibers. This blocking ability may improve the conduction of nerve signals in nerve fibers whose insulating myelin coating has been damaged by MS. The first studies of this potassium-blocking approach in people with MS were supported by the National MS Society.
What Clinical Trials Found: Acorda Therapeutics sponsored two phase 3 clinical trials of the drug. In the first, involving 301 people with any type of MS, walking speed increased by 25%. Results of this study have been published (February 28, 2009 issue of The Lancet (2009 373;732-738), summarized here). Results from a later, second phase 3 study involving 240 people with MS confirmed the benefits seen in the first, finding that a significantly greater proportion of people on the therapy had a consistent improvement in walking speed compared to those who took placebo. Among those taking Fampridine-SR who improved in walking speed, there was a statistically significant improvement in leg strength.
In the first study, common adverse events (side effects) experienced more often by those on active treatment included back pain, dizziness, insomnia, fatigue, nausea and balance disorder. Two serious adverse events led participants to discontinue taking the drug (one case of anxiety and one seizure in a person who developed sepsis from a urinary tract infection). In the second study, additional common adverse events in those on therapy included urinary tract infection, falls, and headache.
Comment: “The clinical trial results suggest that for a substantial percentage of people with MS, Fampridine has the potential to restore some significant function and make a real difference in people’s quality of life,” said John R. Richert, MD, Executive Vice President of Research & Clinical Programs for the National MS Society. “If the FDA agrees that Fampridine is safe and effective, this would bring a welcome symptomatic therapy that has potential utility for a large number of people with different types of MS.”
Further study and clinical practice may help determine the extent to which the drug may impact other functions not measured in the clinical trials, and provide hints as to which patients are most likely to respond.
Panel Recommends that FDA Approve Fampridine-SR (proposed name Amaya) for Symptomatic Treatment of MS -- Found to improve walking speed for all types of MS
A U.S. Food and Drug Administration advisory committee today recommended that the agency approve marketing of Fampridine-SR (Acorda Therapeutics, with a proposed name change to Amaya) for its ability to improve walking speed in people with any type of multiple sclerosis. While the FDA is not required to follow the recommendations of its advisory committees, it usually does. The agency is expected to make a final decision about whether to approve the drug for market on or before the target date of October 22, 2009.
During an all-day meeting held October 14, 2009, the FDA advisory committee considered Acorda Therapeutics’ application for approval of Fampridine-SR, reviewing data about the drug’s effectiveness and safety. The committee also heard public testimony from individuals and patient advocacy groups, including the National MS Society, which testified to the unmet need for therapies to improve walking for people with MS.
Among its discussions, the advisory committee recommended that the FDA require the sponsor to evaluate the effects of doses lower than originally studied, but that these studies would not be required to be done prior to the drug’s marketing approval. In addition, the FDA is likely to require a plan to mitigate potential risks. During its presentation to the committee, Acorda representatives outlined such a plan -- the Risk Evaluation Mitigation Strategies (REMS).
Background on Unmet Need: Problems with gait (difficulty in walking) are among the most common limitations in MS. While there are six FDA-approved disease-modifying therapies that are at least partially effective against some forms of the disease, as well as rehabilitation and symptomatic treatments for some symptoms, at present there is no pharmacologic treatment specifically available for MS-related difficulty walking. This disability has wide-ranging effects on people’s lives, even in its milder manifestations.A recent survey among more than 1,000 individuals with MS and many of their family members examined the impact of mobility issues, such as difficulty walking, on quality of life among patients with MS and their families. Some two-thirds of patients reported difficulty walking and of these, 70% reported that such difficulty was the most challenging part of their MS, and most reported that difficulty walking restricts their daily activities significantly, including their ability to travel. (Read more about survey results)
About the Drug: Fampridine-SR is a sustained-release formula of 4-aminopyridine, which blocks tiny pores, or potassium channels, on the surface of nerve fibers. This blocking ability may improve the conduction of nerve signals in nerve fibers whose insulating myelin coating has been damaged by MS. The first studies of this potassium-blocking approach in people with MS were supported by the National MS Society.
What Clinical Trials Found: Acorda Therapeutics sponsored two phase 3 clinical trials of the drug. In the first, involving 301 people with any type of MS, walking speed increased by 25%. Results of this study have been published (February 28, 2009 issue of The Lancet (2009 373;732-738), summarized here). Results from a later, second phase 3 study involving 240 people with MS confirmed the benefits seen in the first, finding that a significantly greater proportion of people on the therapy had a consistent improvement in walking speed compared to those who took placebo. Among those taking Fampridine-SR who improved in walking speed, there was a statistically significant improvement in leg strength.
In the first study, common adverse events (side effects) experienced more often by those on active treatment included back pain, dizziness, insomnia, fatigue, nausea and balance disorder. Two serious adverse events led participants to discontinue taking the drug (one case of anxiety and one seizure in a person who developed sepsis from a urinary tract infection). In the second study, additional common adverse events in those on therapy included urinary tract infection, falls, and headache.
Comment: “The clinical trial results suggest that for a substantial percentage of people with MS, Fampridine has the potential to restore some significant function and make a real difference in people’s quality of life,” said John R. Richert, MD, Executive Vice President of Research & Clinical Programs for the National MS Society. “If the FDA agrees that Fampridine is safe and effective, this would bring a welcome symptomatic therapy that has potential utility for a large number of people with different types of MS.”
Further study and clinical practice may help determine the extent to which the drug may impact other functions not measured in the clinical trials, and provide hints as to which patients are most likely to respond.
Thursday, October 15, 2009
More on SCT
10/15/2009 Did the video but have not got it posted yet, have to get a friend to show me one more time how to load it to You Tube. I’m technically challenged, but stay in denial. The PHYSICAL THEREPY at the hospital was FIRST CLASS in all respect. The therapists were very specialized in dealing with MS patients. While I was in treatment I received PT 7 times at an hour each time. Totally wiped out after each session. The Doctors suggested that we exercise when we returned to our homes to encourage the NEW CELLS to start growing. The two weeks that I spent at the ICM went by quickly and when we got home on Sunday night it was like I was now starting a new journey. I have been home for 6 weeks and the report on my health (SYMPTOMS) is that I’m confused because some days the SYMPTOMS are mild and then on other days when I do too much and get very tired my SYPMTOMS seem to flare up and my balance really goes to HELL! It is very frustrating when friends tell me how good I look and I know how bad I might be feeling that particular day. My weight has gone from a too heavy 246 lb’s. Down to 192 lb’s. In the last year so there is something very positive. Anyone need 42 and 40 dress slacks like new and also men’s’ golf shorts new? Give me a call 349-9525, just come and pick them up.
October 1, 2009 Went to my chiropractor this morning, had acupuncture, tens, and an adjustment on my spine. I have 3 active lesions at my C2, C5, 6. So the adjustment really felt like it was of great benefit. Feeling good and Attitude is GREAT!! PROACTIVE, going again tomorrow. Don’t let things like the bullsh-t we have to deal with get you down, you still can control your THOUGHTS? Make them GOOD THOUGHTS and when it seems impossible, and then call out to your Savior, Jesus for strength. I Talked with Richard Humphries on Monday and he said he is feeling good and that he talked to Holly Huber. Holly has many videos posted on You Tube about her SCT at ICM in Costa Rica. Holly received her first SCT in November of 2008. Now she is back for a new dose of ADULT STEM CELLS. I will be trying to touch base with her next week. You can see her on Face Book or You Tube. If you have MS or some one you are close to, it is very informative. Here is an article that will be helpful on gaining a resource for information if you are not familiar with social networking.
What is Facebook? It is a social networking website that was created to connect people. After signing up for Facebook, which is free, individuals make a profile page, begin to connect with others ("friends"), exchange messages, join groups, and play games. Today, there are over 300 million active Facebook users.
Facebook: The Power of Social Media
Living Well with MS
With the dawn of the digital age, our means of connecting with others have changed dramatically. Today, digital mediums--especially online communities--have changed the way many of us think of communication and the act of connecting with others.
For people with MS, online communities, such as Facebook, are proving to be incredible connecting tools. This has certainly been the case for Sandi St. Clair-Vargo who, after joining Facebook, began to discover a global network of support.
"Meeting other people with MS has been amazing...there are 100 plus people I've met from all over the world through Facebook," Sandi said. She describes these people, who she only knows digitally, as "kindred spirits," because they know what she is going through.
"All these people reassure you," Sandi said. "We're all going through the same thing."
Sandi has connected with many of these "kindred spirits" through MS-specific groups--of which there are more than 500. Each group offers something different, and runs the gamut from "Fight Multiple Sclerosis" to "Tysabri: As long as my body tolerates it, I'm not scared of PML!" The groups are key in connecting people with MS, despite geographical distance.
Have you seen the Rocky Mountain MS Center on Facebook page yet?
October 1, 2009 Went to my chiropractor this morning, had acupuncture, tens, and an adjustment on my spine. I have 3 active lesions at my C2, C5, 6. So the adjustment really felt like it was of great benefit. Feeling good and Attitude is GREAT!! PROACTIVE, going again tomorrow. Don’t let things like the bullsh-t we have to deal with get you down, you still can control your THOUGHTS? Make them GOOD THOUGHTS and when it seems impossible, and then call out to your Savior, Jesus for strength. I Talked with Richard Humphries on Monday and he said he is feeling good and that he talked to Holly Huber. Holly has many videos posted on You Tube about her SCT at ICM in Costa Rica. Holly received her first SCT in November of 2008. Now she is back for a new dose of ADULT STEM CELLS. I will be trying to touch base with her next week. You can see her on Face Book or You Tube. If you have MS or some one you are close to, it is very informative. Here is an article that will be helpful on gaining a resource for information if you are not familiar with social networking.
What is Facebook? It is a social networking website that was created to connect people. After signing up for Facebook, which is free, individuals make a profile page, begin to connect with others ("friends"), exchange messages, join groups, and play games. Today, there are over 300 million active Facebook users.
Facebook: The Power of Social Media
Living Well with MS
With the dawn of the digital age, our means of connecting with others have changed dramatically. Today, digital mediums--especially online communities--have changed the way many of us think of communication and the act of connecting with others.
For people with MS, online communities, such as Facebook, are proving to be incredible connecting tools. This has certainly been the case for Sandi St. Clair-Vargo who, after joining Facebook, began to discover a global network of support.
"Meeting other people with MS has been amazing...there are 100 plus people I've met from all over the world through Facebook," Sandi said. She describes these people, who she only knows digitally, as "kindred spirits," because they know what she is going through.
"All these people reassure you," Sandi said. "We're all going through the same thing."
Sandi has connected with many of these "kindred spirits" through MS-specific groups--of which there are more than 500. Each group offers something different, and runs the gamut from "Fight Multiple Sclerosis" to "Tysabri: As long as my body tolerates it, I'm not scared of PML!" The groups are key in connecting people with MS, despite geographical distance.
Have you seen the Rocky Mountain MS Center on Facebook page yet?
Wednesday, October 14, 2009
the video is posted on You Tube and I will blog what I said on the video. Since returning from treatment’s, (MY SYMPTOMS, NUMBNESS IN MY LIMBS, WEAKNESS ON THE RIGHT SIDE, DROP FOOT , FATIGUE, AND BALANCE), all improved about 10 %. PAIN IS DOWN FROMa 9 to a 4.5. My joint pain is down even more, could be the new cells, along with the supplements I have been taking. REMEMBER IT WILL BE 3 TO 6 MONTHS FOR THE CELLS TO GROW. Even tough I am very impatient to get dramatic results. I must remain realistic and continue to put EVERY ASPECT REGARDING MY LIFE, NOT JUST MY HEALTH, IN JESUS CHRIST AND HIS FATHER.
Tuesday, October 13, 2009
my videos posted on YOU TUBE SCT treatment started on the 3rd. of August. It will have a new post tomorrow, that’s the plan. The best Nugget I can throw your way today is to be PRO ACTIVE in the management of your disease. Get some exercise everyday. It improves your ATTITUDE and also mobility and self-esteem. Get some fun in your life and chose to be around fun and funny people. Be aware to laugh at yourself. Because of our disease the goofy things like tripping, falling, forgetting, dropping stuff (you get the idea)NEED to be released and not be REACTIVE but rather being PRO ACTIVE TO WHAT EVER THE SITUATION IS. Remember,” THE SITUATION IS THE BOSS AND THE RESULTS ARE THE JUDGE”! SAY THAT OVER AND OVER IN YOUR MIND AND LET IT SINK IN, IT IS A NATUREAL LAW.
Wednesday, October 7, 2009
Here we go, everyone take their attitude adjustment tonic. The most important thing in our day is attitude, it’s everything. So, let’s play the hand we were dealt and make it as good as we can. I always have been a fun person and have looked for humor in almost every situation. While traveling to San Jose on7/31/09 fortunately I had the airlines provide an agent to wheel me to my gate in a wheelchair, I’m not on a cane or walker or wheelchair and can still walk but not that far, and both in Charlotte and San Jose, getting thru customs would have been a nightmare without it. We were met by representatives of THE INSTITUTE OF CELLULAR MEDICINE and transferred to THE CHRISTINA APTOHOTEL, about a 20 minute drive. Checked in, everything in order. The facility was perfect. Clean, convient and close to ICM headquarters and only 10 minutes by the transfer van to the hospital. That night Sarita and I enjoyed a wonderful Italian dinner at a restaurant located in the hotel. That by the way was my last glass of wine. The doctors suggest that you not drink alcohol for 6 months to help insure that the new cells will grow. Yes, I do miss an occasional glass of wine! After a good nights rest, we needed it, and hearty breakfast, it was off to the Headquarters of ICM to be interviewed and filmed about our personal MS story and what each the us expected from the treatment of the transplanted stem cells. One thing I don’t want to fail to mention is how humbling it was to meet so many other MS suffers’ that were so much worse off in their fight of this Crazy disease. Many on walkers and even one friend in a wheelchair. There were 11 others from Texas, Ohio, Tennessee, Colorado, California, Georgia, and several other states. Several were there with children with Autism. See you to morrow, I’m tired.
Tuesday, October 6, 2009
9/22/09 I’m back, pretty busy day yesterday, 5 miles on the stationary bike at the YMCA, WAS DEAD TIRED AFTER BUT AM ALWAYS HAPPY THAT I MADE MY SELF DO IT. ONCE THE FATIGUE SUBSIDES I REALLY FEEL GOOD MENTALLY. Then onto Bible study last night till 9:00 PM. A little Monday Night Football and then finally gave up around the end of the first half. Congrat’s to the Colts and Payton Manning, good start at 2/0. On with my story and my Stem Cell Transplant in Costa Rica. For 1 year I have been going on the INTERNET looking for any new information about treatments for MS. I had pretty much come to the conclusion that my Neurologist was not in a position or did he have the time to do all the research because he was busy diagnosing and prescribing. I decided to be PRO ACTIVE with regard to finding new information each and everyday. At one point I was considering going to China for treatment with SCT. I backed out and changed my mind because of cost, distance, and that my wife would not be available to accompany me. My relentless search for new information lead me to discover a You Tube a video that featured a MS patient by the name of RICHARD HUMPHRIES who had treatment (SCT) at The Institute of Cellular Medicine in San Jose, Costa Rica. After seeing RICHARDS’s video and finding out how much success and promise ADULT STEM CELLS had, I started to investigate. Then on our local TV station, W.R.A.L featured an article about a local police officer named AJ Luedtke who had just been to The Institute of Cellular Medicine. I called him and the next day we had lunch and discussed his experience and the reduction of many of his MS symptoms. This was very encouraging to say the least! Speaking with the staff at the Institute of Cellular Medicine, exploring their web site, at CELLMEDICINE.COM and communicating via e-mail with many of their MS patients that had been for SCT felt commfortable with my discisson to go for a STEM CELL TRANSPLANT. We flew to C.R on the 1st of August and I spent 2 weeks in treatment. (Good stopping point)
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