Tuesday, December 06, 2005







2006 MS Walk Update

The scorecard:

Emails sent: 457 (Tustin and Irvine Chamber of Commerce contacts
Visits to my MS Walk homepage: 9
Team members recruited:0
Funds Raised:$100.00

No Visits and no new visits, donations, contacts or team members!

Thursday, December 01, 2005


OK, the campaign has started!

The scorecard:

Emails sent: 331
Visits to my MS Walk homepage: 9
Team members recruited:0
Funds Raised:$100.00

Saturday, August 20, 2005



To be tender with the young,
Compassionate with the aged,
Sympathetic with the striving,
Tolerant with the weak and wrong....

Because sometime in your life
You have been all of these.

Thank You for this Aunt Mimi
Great timing

Sunday, June 26, 2005

Stem Cell Sanity

Getting the facts straight is crucial.


Dr. Hans Keirstead of the Reeve-Irvine Spinal Cord Injury Research Center recounts a story. He injected 1,500,000 human stem cells into a crippled rat’s spinal cord, and they regenerated lost tissue, allowing the rat to walk again. This result was published recently. He has since received hate mail claiming that by doing this experiment he had destroyed 1,500,000 human lives. This is not true, but it is an extremely common misconception. The debate over stem cell research has become as vehement as the debate about abortion, and many of the same issues have arisen. If we, as a society, are to have a reasonable discussion about these topics, we must first agree on the facts.
Stem cells, so named because every other type of tissue in the body stems from them, cannot turn into people any more than skin cells can turn into people. Stem cells are early versions of human cells that have the ability to become any other kind of cell in the body. However, the stem cells which are used in research have already undergone a critical change. After fertilization, the fertilized egg divides a number of times to become a blastocyst, a bi-layered mass of cells. Stem cells come from the inside of this blastocyst. The entire blastocyst is necessary for the development of a human being ­ individual stem cells alone cannot become people, so it can no longer be said that destroying these cells is destroying a human life. This is why George Bush could comfortably say that it is OK to do stem cell research with existing cell lines.

The promise of stem cell research is manyfold. Stem cells can be teased into becoming any kind of tissue, and then this tissue can be studied without having to remove it surgically from patients. Stem cells from diseased people could be transformed in a lab into diseased tissues (such as brain tissue), which could then be used to study the disease and test potential cures. In this way, we could greatly speed up the process of finding a cure for diseases such as Alzheimer’s, and do so much more ethically. Stem cells can also be used to replace lost or damaged tissue, such as the spinal cord in Keirstead’s rat.

The sticking point, then, isn’t what we do with the stem cells, but where we get them. The only stem cells in the U.S. today come from frozen stocks in fertility clinics. When a woman goes to a fertility clinic, the clinics typically collect and fertilize about 30 eggs, which are serially implanted until the woman becomes pregnant. The remaining fertilized eggs are frozen. These are President Bush’s “Snowflake Babies” ­ so named because they each represent a unique, microscopic, frozen individual. It is currently illegal to use federal funds to study these cells. The legislation moving through Congress right now, which George Bush has threatened to veto, would change this. NOBODY, however, wants these cells to be destroyed ­ not the scientists nor the religious right, nor the public, nor the president. This might be a good place to start ­ a moratorium on the disposal of these cells, at least until we figure out what to do with them.

Recent technological developments in Korea may provide an interesting solution to this problem ­ stem cells can now be made with that person’s consent, from adult tissues such as skin cells. These “personalized” stem cells have an added benefit: They can be used to grow tissues that will not be rejected by the donor ­ they are, after all, his or her own flesh. Techniques are also being developed to remove embryonic stem cells from blastocysts without destroying them. This would not be “science which destroys life in order to save life,” which is the only thing that Bush is explicitly against. Furthermore, since these stem cells come from adult tissues, we know that their DNA is complete. Over half of fertilized eggs have fatal genetic problems, and never make it to term. This applies to Bush’s “snowflakes” as well ­ about half of them would never survive the natural reproduction cycle.

Because of the broad ban on stem cell research, American scientists have not had access to the raw materials they need, and America is falling behind the rest of the world in this important area of research. Korea, the UK, China and now Canada are all producing new embryonic stem cell lines. If Mr. Bush insists on saving the snowflake babies, then A LOT MORE MONEY must be invested in stem cell research so that we can compensate for our own self-imposed ethical restrictions. This is the only way that America will be able to stay at the forefront of this extremely exciting field, and deliver the promise of stem cell research to waiting Americans. OCM

Frank Barbaro is chairman of the Orange County Democratic Party. He thanks Drs. Hans Keirstead, Aileen Anderson and Gabriel Nistor for their help with this article

Editorial Note:

Doctor Kierstead spoke at the National Multiple Sclerosis Society's, Orange County Chapter annual luncheon. It seemed that everyone present was spellbound by the presentation. Seeing a paralyzed rat walk again encouraged most that were there

Thursday, May 26, 2005

My first Bonsai

TYSABRI's return a matter of when, not if

Elan's CEO said that Tysabri stops the progression of MS, while other MS drugs only slow its progression; this is a "critical" piece of information Elan will raise when it formally meets with the FDA.
He said Biogen and Elan "may never have a pure scientific argument" as to what caused the PML based only on three cases. "That isn't our goal and the FDA knows that," he said. "It's a question of risk assessment."
Martin also said Biogen is continuing to manufacture Tysabri, partly due to its "extraordinary" take-up when it was on the market, and so the companies are braced for its return to market.

Thursday, May 12, 2005

Frankly Speaking, Its All About Assumptions, Presumptions and Perspective

As I stumble through my relationship with MS my perspective changes!

I ask myself, "But what if you couldn't ...?" much more often now.

When I look at an intersection I notice whether there are ramps or curbs.

I catch myself noticing whether the island dividing a street has a wheelchair ramp in it to allow persons in wheelchairs to cross.

I notice how far it is from the pedestrian crosswalk button to the wheelchair ramp and ask why the button is not adjacent to the ramp. But for some reason the question, "What if I couldn't press the button?" Never crosses my mind.

I look to see if wheeling down a ramp puts you out in the street or out into a crosswalk.

I've noticed the roadbed several inches lower than the curb when the street was being re-surfaced. And I've watched as an individual in a motorized wheelchair crossed the street only to encounter that step up!

I notice the disabled parking placards hanging in vehicles. Are they expired?

I notice the people parking in those spots who shouldn't. Damn, I wish I were that important!

I've witnessed a disabled person squeezing a second car into a disabled van accessable spot because she felt entitled.

I've seen wheelchair ramps at curbs that were lined with barricades to keep autos from driving up onto the sidewalk. Think about it!

Yet, I still find myself thinking like an able-bodied man. That perception just won't go away! It's hard to remember that I need to step first with the left foot and always pivot on the left foot.

Actually, its not that it's hard to remember. What's hard is forgetting that I used to not have to think about it at all.

Monday, March 07, 2005


Last of June 1971 I woke up and could only see items with peripheral vision in my left eye. I made an appointment with the eye doctor, he put me on prednisone. After a couple of weeks when wasn't better, referred to a neurologist in Tulsa. This doctor ran some tests because I had taken a bad fall down some steps while on vacation the first part of June and landed on my head. In about 6 weeks, sight was back to normal except for color brightness. Diagnosis optic neuritis.
Over the next nine years and a move to Nashville, things seemed to be pretty normal as I knew it. Can look back now and see things may have been caused from MS.
Spring of 1980 problem with slight numbness in my right lower leg for 3 to 4 days, but numbness came back worse a month later and leg was smaller than left leg. Was sent to Vanderbilt Hospital for a battery of tests after several days and a spinal tap, was told appeared to be Multiple Sclerosis.
I didn't know much about MS. My neighbor while growing up had MS. She would honk and I would go over and help her get in the house when her mom wasn't home. She was a lovely person, good spirit and she never talked about her MS. All I knew was she had MS and had to have assistance walking and mechanical things put on her car to drive.
June 11, 1996 I could hardly drive home after attending birth of my granddaughter. Doc was on vacation so found neurologist to see me. Since I had never had a MRI, he sent me to have one done. MRI showed (benign) Meningioma tumor on brain. He sent me to St Louis and I had surgery to remove it. While there, a MS specialist looked at tests and then checked me out.
In 6 weeks, I was back to work for half days and able to write again.
The Lord gave me my life verse just before the MS diagnosis. Verse is I Thess. 5:18, "In everything give thanks for this is the will of God in Christ Jesus concerning you". Don't know why I have this thorn but do know "He" can get me through the bad times.
Since the diagnosis, I have had several episodes with limbs. Each one lasted about 6 weeks then limb/limbs would return back to use except a little more loss of strength.
My husband cannot feel what I do but has been such a blessing and encouragement. He can look at me now and know it is time for me to rap things up and call it a day. We own a pop and mom business which gets pretty busy and stressful at times.

Just a little editorial note from Frank:

Gwen happens to be my half-sister and we are both afflicted with Multiple Sclerosis! Coincidence?

Tuesday, March 01, 2005

Tysabri, by Frank

In November 2004 the Food and Drug Administration approved use of Tysabri to fight the effects of relapsing/remitting Multiple Sclerosis. Incidentally, I had an appointment with my Neurologist on December 1. It is my opinion that I had not been responding satisfactorily to the Interferon Beta injections that were my primary treatment regiment until that time. I was given a prescription for the infusion of Tysabri every 28 days and began the process of trying to gain insurance approval to begin treatment.

After a month of failed efforts to move the process along I sought the aid of an Oncologist that I had used in a previous infusion therapy. It worked! On February 3 I underwent the first infusion with this drug.

My appointment for the second infusion is scheduled for March 3. It won't happen! The FDA, Elan Corp. And Biogen have pulled the drug off the market, stopped distribution and suspended ongoing clinical trials. Two members of the clinical study have been diagnosed with PML. In one case the patient died and it's my interpretation of the information available that the second individual still suffers from the effects of the disease.

PML is a progressive degeneration of the brain for which there is no known treatment. Just what I want! Another disease that results in progressive degeneration of the brain! Early symptoms seem to mimic many Multiple Sclerosis symptoms (that's my analysis, not a medical professional's) and the diagnostic tools used to identify it are MRI and Lumbar Puncture.

I think it’s too early to react to this! Were there other treatments that provoked this response of the immune system? What is the long term risk associated with this product and what are the long term benefits it offers?

By the way, if you are interested, I have a pretty good explanation of PML I can attach to an email for you. Just add a comment to this Blog requesting it and make sure I’ve got your email address.

The search for a cure continues!

Tuesday, February 22, 2005

Anita's Self-Advocacy

Anita left her residence in her new high-tech motorized wheelchair. She traveled to a nearby intersection. Pressed the “Push-to-walk” button and waited on the light to turn green. It did and she started to cross the street. As she was crossing, an oncoming vehicle negotiated a left-hand turn that intersected her path striking her wheelchair. The good news is that she was not physically injured!

Now the bad news. Her new $22000 wheelchair was totaled. No witnesses came forward so it was difficult if not impossible to ascertain who was at fault. The police did not cite either party. Barring a protracted lawsuit the matter was closed. Anita’s source of mobility and independence was now a heap of broken useless parts for which no one wanted to take responsibility.

Anita could have withdrawn to her residence. Depression could have set in. This situation could have simply slipped through the cracks. Out of sight, out of mind.

But she took it on herself to contact the local newspaper, “The Orange County Register”. The deaths of 3 people using wheelchairs in the past 2½ months prompted the paper to publish an article highlighting the dangers wheelchair users confront. The article appeared in the February 12 issue of the paper.

Since the article’s publication; her wheelchair has been replaced, awareness to this issue by the community in general has been heightened, and attention to this matter within the Multiple Sclerosis community has been feverish and shows no sign of ebbing. The first step in solving a problem is recognizing that a problem exists.

So thank you Anita! By demonstrating powerful self-advocacy not only have you won a personal victory; you’ve brought attention to the issues of:
1. Personal safety
2. Protecting ourselves from the unexpected loss of our mobility aids