Its been a while……..
From the mouth of misery: “Having an invisible disability means carrying the burden of proof wherever that person may go. It means creating a support network to help manage the challenges and celebrate the victories. It means having the courage to face the outside world hoping for a level of acceptance that makes them feel safe. Having an invisible disability doesn’t make it any less real or any less painful.”
Be well
Live fully
No regrets
I was the guy who played bruised, cut, stitched, etc. Football, baseball, hockey. I never let a bruise, cramp, or cut sideline me. When I got older I was the same way. I kept that ethic with me. Unless I couldn’t get up from bed, I was where I was expected to be.
I never expected to have to push through life. Multiple Sclerosis taught me that. What made me a good addition to the team, in sports and work, was preparing me.
It didn’t ready me completely. Constant pain and pushing yourself to do something that used to be easy, drains you. It’s a drain on your mind, your soul………… everything that you used to motivate yourself is now a reminder of what this disease has taken.
For my son, Shea. I hope I get the chance to tell you all this myself, but life is tricky.
You are compasionate, empathetic, and conscientious beyond your years. Dont let the world take that from you.
Don’t let sadness live in your heart
Don’t let any type of loss take over you’re mind
Know when to speak and when to stay quiet
Don’t ever smoke
Don’t be afraid to ask..most people go through life never achieving what they could because they were afraid to ask.
Don’t let yourself do anything to the point of no return, dont eat til you want to throw up, dont exercise til you cant move, dont drink til you pass out.
Don’t be ashamed of who you are.
Read as much as you can
Read the news
Read your texts books further than you have to.
If you feel light headed; stop, try to sit, and drink some water.
Don’t hurt people if you can avoid it.
Avoid situations that might cause you to hurt someone, especially someone you have feelings for or care about
All feelings aren’t love, it may seem that way to you in the moment, but real love only comes once or twice in life, you’ll know when you feel it so dont try to force or rush it
Try to keep some money from each paycheck, ideally $100, so that you’re never caught by surprise needing money.
Try not to lend or borrow money, you can lose friends even family over debts
If you have to lend dont lend more than you can afford to not get back
If you have to borrow money dont borrow more than you can payback in 14 day
Learn the basics of electronics and cars
Know how to check and change your oil
Know how to change or jump your battery
Know how to change a tire
Know how to hook up your tv and home entertainment system, computer ,etc
Always let your car warm up after you start it
Learn to cook one really good meal so well that you could make it without really thinking
Always have a sharp chefs knife
Always have eggs cheese milk and butter in your refrigerator rice pasta beans good pasta sauce and ramen in the cupboards… play around making meals with just what you have in the house. You’ll never go hungry or be bored
If your friends call you after 2am STAY HOME, nothing good happens after 2am
If friends or family are hungry, feed them
Always carry a couple of $1 bills to give to someone who needs it on the street.
Don’t forget where you came from
Your grandparents and your parents worked as hard as they could.. harder than they could until they couldnt anymore, but none of them ever gave up… Thats the kind of people that you come from
Plan ahead, save money, start to save for retirement as soon as they offer it at your job. Plan to get sick, plan for a day that you wont be able to work. I pray it never happens, but its better to be prepared
Always use a condom, even if you have known or been in love with each other for a long time, unless you’re mentally and financially ready to be a dad
Learn to file your own taxes
Make me feel dumb, know/learn more than me.
Never forget how much I will always always love you,
DID YOU KNOW…
“Total all-cause healthcare costs for MS as reported by studies that included direct and indirect costs ranged from $8,528-$54,244 per patient per year….
CONCLUSIONS:
MS is a costly chronic disease. Further research is needed to understand: costs by MS type, costs associated with increasing disability and early retirement, and the potential impact of new treatments expected to launch in coming years.”
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Like the time jumps on my favorite show. My life seems to have done the same. The Copaxone Diaries begat the the Gylenya glitch before Tysabry tragedies and now and for the last few years I’ve been riding the Rituxan rode.
Sorry i ran out of alliteration ideas. Or the 10mg of Ammbien are kicking in.
BE WELL
NO REGRETS
So after the extremely screwed up last 6 years I’ve survived with MS I’ve come to the realization that not EVERYONE is an inconsiderate a$$hole and the world isn’t out to get me. It’s the MS that’s out to get me. This realization came much to late in some cases but, at least going forward, barring anything new, I have a little insight as to my moods. MS..THIS SONGS FOR YOU!
A phase 1 trial of a new treatment to reset the immune systems of multiple sclerosis patients shows the therapy is safe and highly effective.
German researchers today unveiled the results of a study on a new procedure that safely resets a multiple sclerosis (MS) patient’s immune system. It can reduce the body’s attacks on the protective myelin sheath that insulates nerve cells in the brain.
For this small Phase 1 trial, which was a collaboration between Northwestern University’s Feinberg School of Medicine, University Hospital Zurich in Switzerland, and University Medical Center Hamburg-Eppendorf in Germany, ten patients were selected. Eight patients with relapsing-remitting MS (RRMS) and two with secondary progressive MS (SPMS) were enrolled initially, but one RRMS patient withdrew before the procedure.
Multiple sclerosis is an autoimmune disease in which the immune system attacks the myelin covering that insulates nerve cells in the central nervous system, which includes the brain and spinal cord. MS is a chronic, degenerative, and often disabling disease affecting more than 400,000 people in the U.S. and more than 1.2 million people worldwide. Symptoms can range from mild numbness to paralysis and blindness.
The study involved giving patients a single infusion of their own white blood cells, or T-cells, which were processed and then reintroduced into the body. The T-cells were used to deliver billions of myelin antigens into the bloodstream, forcing the patients’ immune systems to recognize the antigens as harmless and build up a tolerance to them. An antigen is a substance that the body believes is a harmful invader. When the body detects an antigen, it releases antibodies to find and destroy it.
In patients with MS, the body creates antibodies to fight very specific antigens, in this case myelin-specific peptides, residing in the central nervous system. The seven antigens researchers used in this study were all proteins found in myelin. Using more than one antigen increased the odds that the correct antigen targeted by the patient’s immune system would be included.
The patients’ T-cells were isolated and then coupled with all seven antigens used in the trial. The coupling was achieved using a chemical cross-linker called EDC that allows the antigens to stick to the T-cells but does not, itself, become part of that bond.
These T-cells, with their antigen hitchhikers, were then rinsed twice to remove the cross-linker and re-suspended in the patient’s blood plasma. This cocktail of antigen-spiked T-cells, suspended in plasma, was then given to the patient through an IV. The process from start to finish took about nine hours.
The results showed that the therapy was safe and reduced the patients’ immune system attacks on myelin by as much as 50 to 75 percent.
“The therapy stops autoimmune responses that are already activated and prevents the activation of new autoimmune cells,” said Dr. Stephen D. Miller, Ph.D., a professor of microbiology and immunology at the Feinberg School of Medicine in Chicago, Ill., in an interview with Healthline. “Our approach leaves the function of the normal immune system intact. That’s the holy grail.”
According to the study, the side effects of the treatment were virtually non-existent. The only effect of note was one patient’s complaint about a “metallic taste” after the injection.
“This treatment should not lead to any major side effects (that is our hope and expectation) and be highly specific, i.e. leave normal immune responses that we need to defend ourselves against infections untouched,” the study’s principal investigator Dr. Roland Martin told Healthline.
For the hundreds of thousands of M.S. sufferers in the United States, this is perhaps the most promising news of a non-drug treatment to surface in years. Although there has been much recent excitement over FDA approval of several new drug therapies for MS, they are all part of either a daily, every-other-day, weekly, or monthly regimen to which a patient is indefinitely tied, at a cost that many cannot afford.
For safety reasons, this trial was conducted in a hospital setting, but if approved, the treatment will most likely be an outpatient procedure.
A single-dose treatment with no side effects, performed in an outpatient setting, that leaves a patient’s immune system intact sounds almost too good to be true. However, further testing is necessary to validate the safety and effectiveness of the procedure. “At this point we are trying to acquire funding to carry this process into a phase 2a trial,” Miller said.
When asked how long it might take to complete additional trials and the FDA approval process, Miller speculates, “Realistically, this could take three to four years.” Compared to other trials for new drugs and treatments, however, three to four years is practically the blink of an eye.
“The phase 2a trial is fully planned, and we have approached various funding sources, among them the European Union,” Martin said. “We have also begun to discuss the project with pharmaceutical and biotech companies and hope to find support in the near future. The phase 2a trial will most likely be a two to four center study, and if a US center is interested, we are very open as long as this would not create a major extra hurdle with respect to regulatory filings.”
I am me. I may be missing a few pieces but, I’m not broken. I may not be complete, but I am whole.
Already the gun lobby and GOP are sending e-mails(I signed up as a GOP supporter) warning that the Obama administration is looking to take away our right to bear arms. It’s obvious that any meaningful gun control or limitations are going to be fought and will be changed, repealed, or left to expire; just like Obama himself let the Clinton Era Assault weapons Ban EXPIRE in 2004. The only change that would be permanent or more difficult to just sign away would be an amendment to the US Constitution. Please sign this and make in a message from Americans that we support gun control, not a gun ban. That we don’t need 100 round clips in assault weapons to protect ourselves or hunt. I’ve never been taught how to shoot by anyone except Nintendo and the one time I went to a range I put 9 shots center mass out of a REGULAR capacity clip. If you need 100 round clip you need to practice more or go back to playing Duck Hunt.http://www.causes.com/causes/807102-we-need-an-ammendment-to-the-2nd-ammendment
The Copaxone Diaries 