Posted by: ElliptiGO Girl | October 9, 2010

HALS PALS fight ALS with SBIM

SBIM (The Santa Barbara International Marathon) is coming! Second year – and the second time that we will have a relay team representing MDA ALS in the race. Last year, Hal had registered very very early for the 2009 inaugural SBIM, (basically, the day registration opened up) He intended to use the race as a Boston Marathon qualifier, if he didn’t qualify in the Los Angeles Marathon.

Well, things did not work out as planned. Hal was unable to complete the 2009 Los Angeles Marathon in May – his legs seized up on him. Little did he know that he was experiencing an early sign of ALS. He was diagnosed in August. Still able to run, albeit at a much slower pace, Hal dreamed of being the first person with ALS ever to run and finish a marathon.

That was not to happen. By November, Hal had to give up running completely. He was still able to walk a couple of miles, however, and so, with the permission of the SBIM committee, Hal walked the last two miles of the marathon, and crossed the finish wearing the relay team chip.

We were able to raise $7000 for MDA-ALS at the Marathon last year. MDA (the Muscular Dystrophy Association) has a sub-section dedicated to ALS. All of the funds raised go to ALS research.

Over the past year, Hal has weakened considerably. He can no longer walk. His speech is slurred, weak, and slow. Typing on the computer is very challenging. But his mind is clear and his spirits are good. Last month, the Neurologist from UCLA called to tell us UCLA was ready to initiate phase three of the ceftriaxone trial. Ceftriaxone is an antibiotic that is used to treat Lyme disease. It has two interesting attributes: It can cross the blood brain barrier into the cerebral spinal fluid, and in addition to being an antibiotic, it lowers levels of glutamate, a neurotransmitter that can destroy nerve cells in high concentrations. People with ALS are known to have toxic concentrations of glutamate in their cerebral spinal fluid.

Last week Hal and I spent a day at UCLA being tested to see if we qualify for the clinical trial. I say “we” because Hal has to be strong enough, and I need to be willing and able to administer his intravenous medications. Two days later we got the good news: We both passed!

On October 12, 2010, Hal and I are going down to UCLA. Hal will have a central line implanted into his superior vena cava. I will be trained in how to administer his trial medication, keeping everything sterile. We both have high hopes for this trial.

Because government funding has been decreasing, private donations from non-profits like MDA make trials like this possible. We know that without further intervention, Hal will probably continue to rapidly lose his strength. But now, he may have a chance to significantly slow his progression. We both feel very, very blessed to be able to be part of this clinical trial.

Hal is participating in the SBIM this year again to raise funds for ALS research. He will cross the finish line wearing the relay team chip – this time in his wheelchair. https://www.joinmda.org/alsrelay2010/fran

Advertisements

Responses

  1. Will be encouraging you as you run/ride through the finish line of SBIM this year.

  2. Hey, Nancy – thanks! (The term”run” might be a bit optimistic here – Hal will be riding – and I will be hopefully not limping!)

  3. Hi to you and Hal. Yin and I are thinking of you.


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Categories

%d bloggers like this: