Move It!!!

http://www.nationalmssociety.org/

National MS Awareness Week

As my first official act to make others aware, I'm posting this extremely small image with which I was provided by the NMSS. LOL. You'd think they'd have made it a little more... uh... noticeable?? I'm guessing it would really pop on a huge billboard, though... provided they covered the whole board with it. I'll have to search around and see what else I can find for my blog.

As for my second act: I'm going to see my extremely brilliant hippie-chick MS specialist in the morning. I'm anxious to hear some good news. :) That good news will not come at the weigh-in, however, as I'm positive I've put back on a few of those pounds that I had lost.
:(

For now, though, I bid thee adieu... for I am completely exhausted.

Please, oh, Please, oh, PRETTY PLEASE!!!!

I'm soooooo excited! The medication I have been wanting to be on for MS is FINALLY up for FDA approval after years of clinical trials! It's a PILL... not a shot!!! Woo-Hoo!!!!

As long as I stay relapse-free I can start it as soon as it's approved! Please pray that I stay relapse-free! So far it's been 14 months since the MS attack that left me wheelchair bound. I'm so thankful to God for keeping me relapse-free this long. I'm learning so much, and I'm grateful. I just pray that I use what He teaches me for His glory.

Check it out HERE.

Won't you pray with me that this medication will be available to those of us who have MS as soon as possible?

Praising God!!!

I am simply in awe of God! He has been so good to me!! I'm going to post what I've been sending in emails to friends... praise the Lord with me!

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"But verily God hath heard me; he hath attended to the voice of my prayer. Blessed be God, which hath not turned away my prayer, nor his mercy from me." Psalm 66:19-20

With the progressive form of MS I have, the doctors had pretty much given up hope that anything would help me. The last resort was to use chemo to kill off my immune system entirely so that it would stop attacking my body instead of doing its job. When they all said “chemo” – it just freaked me out! I have so many people who I love who have been down that road due to cancer, and they are just so much braver than I am!

I was told this a few months ago, but I had to go through a bunch of tests before I could begin. All the while I kept asking God to give me direction and wisdom because I didn’t want to make the wrong choice. The chemo drug that I would be going on has a high risk of heart damage and Leukemia. I have a daughter! These risks just didn’t sound great to me. She already goes through so much having a Mommy who can’t do the things other Moms can do. She’s such a little trooper!

A few weeks ago after being told yet again that chemo was my only hope, I prayed and I cried for a long time. Then I accepted that it was what I had to do. I told God that I’d do it if that was His will for me and that I’d trust Him to take care of me. I was still scared, but I kept saying the verse “What time I am afraid I will trust in Thee” over & over again. It comforted me.

Then one day 2 weeks ago my specialist called & said she wanted to put the chemo on hold for a week. That was okay with me!! I began to wonder if God was doing something, but still wanted to be willing to do whatever it was that He wanted. When I got to the neurology department at Penn last Monday after a long 2 hour drive, I signed in and we went into the waiting room expecting at least a 45 min. wait which is standard there. After about 2 min. my doctor personally came out and got me. Another first for her! She said she was anxious to see me. She did a thorough exam and was very pleased to find some improvement since our last appointment. She said that was extremely odd given the form of MS I have and the fact that there was no improvement visible on the MRI.

Then she sat there and just stared at me with a weird look on her face. After a few moments of silence she said, “This is just all very odd to me. Obviously something inexplicable is going on in your body because medically this makes no sense. Since you are doing better without any treatment, I’m going to recommend that we put chemo on hold. If you have another attack in the next few months we’ll start the chemo immediately. If not, I’m going to put you on the oral medication that should be FDA approved early next year.”

Now, what I should explain is that the oral medication is what I have wanted to be on for the past two years! It was in clinical trials and I couldn’t pass the physical portion of the exam to get in the trial because you had to be able to walk the length of a football field unassisted. Being in a wheelchair pretty much ruins your shot at getting in that trial! The people I know from different MS forums who are on it have had wonderful success. But, in January I flunked the physical exam for the final trial phase and I was told that I’d have to go on something else. My doctor pointed out Monday that if I had been accepted in the trial, right now we’d all be thinking that it was the pill holding the MS back...and that I may have been put on the placebo instead of the real medication and been giving that the credit. Isn’t it great that God kept me off that trial so that He could be glorified!!!

My friend Brenda referred me to a doctor who takes a holistic approach. I figured, “why not” and went to see him. He gave me all kinds of supplement suggestions. Then we began seeing a nutritionist. While I can’t medically prove that all the supplements and the subtle change in diet had anything to do with stabilizing the MS, I truly believe that God used this to help me. Having said that, I never imagined taking so many vitamins in my life! It’s crazy...but it’s helping!

So, no chemo for me at this time -- PRAISE THE LORD!! My muga heart test came back extremely healthy...no problems there other than my daughter pulling at the heartstrings! :)

I realize this was a lengthy, jumbled response, but I’m just so truly amazed at God’s grace! You’d have to know my specialist to truly get the whole picture. She’s this brilliant hippie chick. Saying that she wants to put chemo on hold and do nothing is directly opposite of EVERYTHING she had said before and of everything my other doctors recommended. It was clearly an answer to prayer! It was clearly a “God” thing!!! Yes, I may have another MS attack at any point, but I told my husband that if I do than I must accept that as God’s plan as well.

I really appreciate your prayers, and would truly appreciate your continued prayers that the attacks would stay away. Thank you so, so much!

Isn’t God AWESOME?!!!!

World MS Day

Please pray for a cure!

Personalized MS Treatment

Hmmm...this sounds hopeful. I like the idea of it being personalized to your own body! After all, MS affects everyone differently.

"Clinical trials of Tovaxin, a personalized vaccine against multiple sclerosis, have shown that the therapy can improve visual impairment within six months of beginning treatment. The therapy also decreased annual relapse rate and improved disability in trial participants with the most active MS.Tovaxin is created by isolating the T-cells within a patient's blood that react to myelin, replicating them, then reinserting them into the body as a vaccine. The goal is for the patient's immune system to attack not only the cells in the vaccine, but all other T-cells in the body that react to myelin, essentially stopping the immune response in MS and allowing the body to heal."

Stem Cell Drama

I found this article interesting. Having MS myself. I'm sure hoping that a miracle happens through stem cell research, but NOT at the cost of human lives, Mr. President!!!

Stem Cell Drama

President Barack Obama on Monday signed an executive order to lift restrictions on federal funding for embryonic stem-cell research. "In recent years, when it comes to stem-cell research, rather than furthering discovery, our government has forced what I believe is a false choice between sound science and moral values," Obama said. "In this case, I believe the two are not inconsistent." Both the president and most media outlets rarely make a clear distinction between embryonic stem-cell research and research using other types of stem cells, but simply use the generic term "stem cells" when referring to embryonic stem cells.

But the president did more on Monday than to just force taxpayers to fund embryonic stem-cell research, which requires the destruction of human life. He also rescinded an executive order President Bush put into place that funded adult stem-cell research and new research seeking alternative technologies, such as induced pluripotent stem cells (iPSCs), which are now the talk of the scientific world. (See PWB, 3/6/09.) Even Dr. James Thomson, who first grew human embryonic stem cells in 1998, has pulled his resources from embryos and invested in iPS cells, because, apart from satisfying the moral dilemma, these cells are easier and cheaper to reproduce.

"I can think of only two reasons for this action, for which I saw no advocacy either in the election or during the first weeks of the administration," said bioethics attorney and watchdog Wesley J. Smith. "First, vindictiveness against all things 'Bush' or policies considered by the Left to be 'pro-life' and, second, a desire to get the public to see unborn human life as a mere corn crop ripe for the harvest."

Many believe that Bush could have been ahead of his time in promoting both adult stem-cell research and alternative research, such as regression, also known as direct reprogramming. In this process, differentiated cells from adults are reverted into stem cells, with no destruction of human life. As recently as last week, researchers announced that they had successfully turned ethically created cells into the neurons that break down in Parkinson's disease. The week before, scientists produced evidence that they had treated Parkinson's in a patient with his own adult stem cells. Almost daily, researchers are celebrating new breakthroughs without compromising a single human life. Over 70 diseases and conditions have already been treated through adult stem cells, helping patients overcome everything from juvenile diabetes to heart disease. "While the Obama administration and its supporters claim to be on the cutting edge of science, the new President is pursuing old technology," said Tony Perkins of the Family Research Council. Smith says the Obama decision to also reverse the Bush order funding adult and alternative stem-cell research shows that Obama is really the anti-science president, not his predecessor.

A further misconception is that embryonic stem-cell research was made illegal and terminated. However, only federal funding of such research was banned by the Bush administration. Privately funded and commercial embryonic stem-cell research has continued for many years, but has yet to produce a single cure or benefit to a patient. In fact, in recent weeks, embryonic stem cells have been condemned for causing tumors in one patient in Israel. "Embryonic stem-cell research is the research of the past. Millions of dollars have been spent on embryonic stem-cell research and it has failed," said Americans United for Life president Charmaine Yoest. "To pour more money into it is simply a waste."

House Minority Leader John Boehner issued a written statement immediately after the signing that said, "Non-embryonic stem-cell research is not only showing great promise in the laboratory, but its applications are already being used to treat scores of diseases and medical conditions. Indeed, science and respect for human life can coexist. Politicians in Washington would be well-served to recognize this fact before they ask taxpayers to subsidize the destruction of innocent human life simply to advance a particular agenda." [LifeNews.com, Washington Update, OneNewsNow.com, FoxNews.com]

Top 10 Things NOT to Say to Someone with MS

10. Must be nice to sleep all day.

9. You’re lucky you don’t have to work.

8. I know how you feel..

7. But you look good.

6. Just show some self-control & do this diet.

5. Just stop drinking diet soda. After all, that’s why you got MS.

4. You just want attention.

3. It’s all in your head.

2. It could be worse.

1. But my Aunt Marsha has MS & she doesn’t have any trouble doing things.

Stem Cell Breakthrough

A group of scientists have developed what appears to be a safer and more effective way to produce stem cells without the use of human embryos. The new stem cells are called induced pluripotent stem cells (iPS).

An international team of researchers, led by Dr. Andras Nagy of Toronto's Mount Sinai Hospital, have discovered a new way to turn adult skin cells into stem cells that behave much like embryonic stem cells without the problems normally associated with the procedure. In the past, a virus was used to make genetic changes to the adult cells. But the virus often damaged the healthy DNA, and had the potential to cause cancer.

Nagy and his team have developed a technique that does not use a virus to reprogram the adult skin cells into embryonic-like cells, thereby eliminating the danger of DNA damage or cancer. Nagy has reported that a series of tests have shown that the transformed cells have many of the properties of embryonic stem cells.

Many researchers believe that the flexibility and regenerative ability of stem cells hold great promise in the treatment of such diseases as Alzheimer's, Parkinson's, heart disease and diabetes. Those with ethical concerns about the use of embryonic stem cells are pleased with the potential of the new discoveries. "Stem cell research that requires destroying embryos is going the way of the Model T," said Richard M. Doerflinger of the U.S Conference of Catholic Bishops. "No administration that values science and medical progress over politics will want to divert funds now toward that increasingly obsolete and needlessly divisive approach.

[TheGlobeAndMail.com, WashingtonPost.com, Washington Update]

Please pray for a cure!!!