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

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Whew. Another experience with ignorance and downright meanness.

Hal and I traveled by plane to San Francisco last weekend. To attend a conference. The Singularity Summit. The conference was put on by the Singularity Institute for Artificial Intelligence (AI), a nonprofit that promotes research and exploration into the fields related to development and benign use of AI. Hal was specifically interested in how an enhanced Computer Brain Interface might help him to communicate once he completely loses all voluntary movement.

The conference ran Saturday/Sunday. We traveled from Santa Barbara to San Francisco Friday evening, with our scheduled return flight Sunday at 10:40pm. The last Santa Barbara bound flight out of San Francisco that night. Since Hal needed to take his heavy motorized wheelchair, we planned to use BART for transportation in San Francisco – no car or taxi would be able to accommodate the large wheelchair.

Our trip out went relatively smoothly. We arrived for our 6:20pm flight around 4:30pm, and were all checked in and put through security by 5pm. United Express was able to handle the 300 pound chair in their cargo. The Santa Barbara Airport folks were very nice. One downside – in our tiny Santa Barbara Airport, there is no restroom once you go past security. Since Hal needed to use an “aisle chair” – the name give to the narrow chair that carries disabled people up the ramp and into the plane – we boarded the plane first, and left the plane last. By the time we de-planed in SFO, we were both ready for a restroom break. Hal wheeled into the handicap access bathroom on his own. I waited for him, and once he was done we took off for BART.

Hal can still get out of his chair to move around the room, use the sink,etc. At home he uses a walker. While out of the house a cane is easier – he can carry it on his chair. While we were riding on BART Hal noticed that he did not have his cane – he had left it in the airport bathroom. Oh no! It was already late – almost 9pm – and we had not checked into our Travelodge hotel or had dinner. How would Hal move around our hotel room, use the restroom,etc?

We checked in, found a pharmacy within walking/rolling distance of our hotel, and bought a new cane. Hal chose a bronze cane – and said he would try to get his old black cane back on the return trip through SFO. We had a hurried dinner at 10pm, at Wendy’s (on the way back to our room) and fell into bed – setting the alarm to wake us up at 6am for our BART trip to the conference.

The conference itself was really interesting. No major mishaps on the ADA front, although we did encounter entries, passages, and other areas marked as “wheelchair accessible” that were blocked by planters or other large objects. But people at the conference, and at the Hyatt, where the conference was held, were very helpful and considerate. Both days were great. Very worth our trip.

The return trip was not so great however. First mishap: On BART, with all of our luggage, heading back to SFO. We attempted to enter a car with the handicap logo – but the space for a wheelchair was taken by a bike. Hal proceeded to move on to the next handicap accessible car, confident that the conductor would hold the train, since the BART website says if the handicap area is occupied, people needing a wheelchair spot should proceed to another car, and the conductor would hold the train. I hurried after him. Our conductor did not hold the train. The doors closed as Hal attempted to enter, despite my yelling. We had to wait for the next train.

It gets worse. Much. We arrived at SFO, checked in, and were told to go to the boarding gate. We proceeded through security, checked in at the boarding gate, were given seats, and were ready to go – except that we had not had a chance to look for Hal’s old cane. Hal’s wheelchair battery was almost dead – so I suggested he wait at the terminal while I went on a “cane hunt.” I left him with the carry-on luggage, so I could move faster.

I will spare you the details of that hunt. Key points: 1. I did not find the cane. 2. I accidentally exited from the security area. Without ID or a boarding pass.

When I realized I could not get back to the gate, I tried to talk with one of the guards who was checking passengers through. She was very unwilling to listen to me. As soon as she found out that I had no ID, she was ready to call the police. I asked her if someone could go get the ID from Hal. She said they could call him on a cell phone. Unfortunately, the only working phone Hal had was my cell – buried in my carry-on backpack. Hal would not be able to rummage through the backpace to get the phone – ALS has weakened his hands too much. I tried to explain that to her. I told her Hal has ALS/Lou Gehrig’s disease. That he was weak and in a wheelchair. The woman was very angry at this point. She said “Ma’am – I don’t believe your story! I need you to leave! If you don’t have ID you need to leave the airport! Or I’ll call the police!” I forced myself to stay calm. I asked her “Do you know what ALS is? Do you know what Lou Gehrig’s disease is?”

She said “No, Ma’am! And I don’t need to!”

I stood their quietly, and did not leave. She called out to a co-worker. The co-worker called their supervisor, who listened to my story, and then went out to the gate to get my ID and boarding pass from Hal. By the time I had gone back through security and re-joined Hal, it was time for us to board the plane. Thank goodness we made the flight. But I was shaking.

Bottom line – it was my inattention that created the mess – I should not have passed out of the security zone. Or at least I should have had my ID, etc. on me. But given that people do make mistakes, just a tiny bit of compassion form that woman at SFO would certainly have been much appreciated.

Posted by: ElliptiGO Girl | June 26, 2010

Run, run, as fast as you can – or not

Day two after right knee surgery. Sucks.

About four months ago, I hurt my back lifting and moving things while we were having the house modified to allow for wheelchair access. I had to stop running. I also stopped lifting heavy things. But in order to function, I relied on my knees to do the brunt of the lifting.

I knew that I have a vulnerable left knee. I was born with congenital bilateral “discoid meniscus” and I injured my left knee during my wild, tomboy days as a child – jumping off trees, etc. 31 years ago, in 1979, I had the lateral meniscus removed. The surgeon told me at the time, I should expect to need a total knee replacement in about 15 years.

Jump forward 26 years. 2005. I discovered that I could run well despite the left knee. Although it complained, I was dealing with far more painful issues in the left toe. Running did not seem to aggravate the left knee- the toe stopped me before it could.

Jump forward another 4 years. 2008-early 2009. Hal and I were running together. Hal was training for the Boston Marathon. I built up my distance – although speed was my forte – and ran my first half marathon, in Denver, with Hal. I also won the Masters Women State Street Mile, and did some really fast, fun running.

Jump forward one more year. Late 2009-present. Hal was diagnosed with ALS. Then he could no longer run. Then he had problems walking. His balance became bad, and he started falling. He began to spend most of his day in his motorized wheelchair. We had to modify the house.

Jump forward to back injury, March 2009. I stopped running. I tore the meniscus of my wonderful, strong right knee not running, but, while protecting my back while still babying my annoying left knee. Did not know that the injury to the right knee was serious. Thought it was some annoying minor knee strain. My back healed. I tried running. My right knee screamed at me. I tried to use my left knee more. Both knees screamed at me. Finally went to see an orthopedist who insisted on an MRI – for a minor knee strain? and then informed me that I had a torn medial meniscus in my wonderful right knee. A big tear. From the rim into the posterior horn. The scan of the left knee showed “bone on bone” arthritis in the lateral compartment, with some tears and irritation medially and behind the kneecap. The right knee was treatable – remove the torn meniscus ASAP or the tear would get bigger. But this orthopedist felt the left knee was way too “far gone” – the only option for the left knee would be total knee replacement.

So here I lie. Right knee elevated, compressed, iced. Post-op bandage on my right knee. Annoyed with my stupid left knee. Sad that I injured my beautiful, trustworthy right knee. I want to run.

Yet I do see the ridiculousness of my behavior. My angel Hal is losing his walking. His standing. His moving. His speech. His eating. Yet here I am fretting and getting mad about an arthritic knee -while Hal continues to lose more and more of his movement and strength.

I want to run. I want to fly. I want to break free from the restrictions of my evil knee and toe. I am a child. Trying, trying to grow up.

Posted by: ElliptiGO Girl | June 6, 2010

Rolling down the beach

New adventure: Using a beach wheelchair.

Today Hal and I headed over to Carpinteria City Beach to try out a beach wheelchair that the city lends out to individuals with mobility limitations.

Quite an adventure indeed!

We arrived at Carpinteria beach shortly after 11am – didn’t actually get the chair onto the sand until almost noon. Thank goodness Vic Anderson, who organizes a weekly 11am Sunday ocean swim there, warned us that the chairs might not be in operating shape – so we brought along our bike pump. Neither of the two chairs was ready to ride – but one had only one obvious thing wrong – a flat tire. The beach store didn’t have a pump – but (thanks to Vic’s warning and Hal’s response) – we did! So we eventually got the chair up and sort of running.

It was fun! Beautiful weather. We wheeled down to the water’s edge, and then from Ash to Linden and back. If you include the trips from our car to the rental area and back, maybe a total of 1.5 miles with the chair. Hal even got out of the chair while we were by the water and got his feet wet.

Gonna try that again next week!

The magnificent Beach Wheelchair, all pumped up and ready to go!



Mission accomplished: Feet wet, heading back to the chair


Two happy beach bums

Posted by: ElliptiGO Girl | June 5, 2010

“Dancing down the beach”

This week while at the supermarket, I ran into Marybeth, a woman who came to my Nordic walking classes for a while last year. Marybeth stopped me and asked how I was doing. I said I was doing well, but Hal was continuing to get weaker. She expressed surprise and concern – turns out the last time she had been to class was prior to Hal’s diagnosis last August. I filled her in a bit. She lightly touched my arm and said “I met Hal once. On a Nordic Walking trip to the beach. I remember watching him fly past everyone, running with his poles. He looked so graceful, so athletic – like he was dancing down the beach. I told you. You smiled and said that’s how he skis too – like he’s dancing down the slopes.”

Hal. My beautiful dancer.

Hal, second from left, with the Nordic Walking group, June 2009

Posted by: ElliptiGO Girl | May 31, 2010

Humans are resilient

Humans are resilient. Humans recover. Physically. Emotionally. George Bonanno, a clinical psychologist, believes psychological resilience is at the core of human grief and trauma reactions. http://en.wikipedia.org/wiki/George_Bonanno

This morning, I went for a run on the beach. Actually, a 1.5 mile run to the beach, a 3.4 mile on the beach, and a 1.5 mile run home. My first run in about 2 months.

It was slow. It was short, at least compared with the weekend runs I would do last year. But I did it. My back let me do it. My knees let me do it. My body is resilient. And my soul said “Thank you.”

I listened to my iPod shuffle, singing along in spots. Janis Joplin’s version of “Bobbi Mcgee started to play. I sang with it. I remembered how months ago, when I first learned of Hal’s diagnosis of ALS, I went for a run with my iPod. Bobbi MGee came on. I sobbed, cried, and screamed out the words – “Freedom is another word for nothing left to lose” Today, I sang the words with a heavy heart, – but I did not cry.

Hal, October 2008

Body shot, early 2009

Hal, November 2008

On our 30th anniversary bike ride, 7/29/09

ALSA walk, 11/09

At ALS MDA Conference, May 2010

Posted by: ElliptiGO Girl | April 12, 2010

Today . .

Today is Monday, April 12, 2010.

Today I woke up at 4:30am. Hal took his Rilutek and went back to sleep. I got out of bed.

Today I will teach a Spin class, train some clients, and work on my “to do” list.

Today I will try to keep the house in order during our re-model, keeping floor open for Hal’s wheelchair, and trying to keep dust away from his IV supplies. I will give Hal an intravenous infusion. I will work on his tired, sick muscles with a therapeutic massage. I will send my sister Andrea a picture of the new wheelchair ramp she helped us with, and ask for advice on how to keep it from falling apart. I will take a nap during my break.

Today I will pause every now and then to enjoy Hal. His smile, his crinkley eyes, his voice, his silly jokes, his just being there. I will listen to him talk and treasure every word. As I watch him struggle with his cane, his speech, his swallowing, instead of morning his losses, I will be mindful of the many things he can do. I will care for and protect him him when he needs it. I will cherish him. Love him. Hold him. I will celebrate our togetherness. Every moment of it.

Hal and Arky, 3 weeks ago

Today is the first day of the rest of my life.

Posted by: ElliptiGO Girl | December 7, 2009

Life is a Marathon – and ALS sucks!

Once a runner, always a runner. Read More…

Posted by: ElliptiGO Girl | November 20, 2009

The ALS Fundraiser

Last week I sent an email out to many runners that I know, telling them about the fundraiser for ALS that is being held in conjunction with the Santa Barbara International Marathon. It’s through the Muscular Dystrophy Association – ALS division. It gives me something positive to work on, helps raise public awareness of local familes impacted by ALS, and hopefully will raise enough funds to help MDA in their research to fight ALS. We will be doing our fundraiser in conjunction, and with the support of, the inaugural Santa Barbara International Marathon. Other local families with a member who has or who has died of ALS are also getting involved.

On August 5th, 2009, my husband Hal was diagnosed with ALS, better know as “Lou Gehrigs Disease.” We had just celebrated our 30th Wedding Anniversary exactly one week earlier. And suddenly our lives fell apart. Below is the letter I sent to several of our running colleagues:

You probably mostly know me from seeing me running – at the Saturday morning coached workouts, or occasionally in races, especially short ones! A few years ago, I wasn’t running at all. I had some health issues that kept me off my running feet for almost 15 years – until about three years ago my husband, Hal, encouraged me to ease my way back into it.

Hal himself was training. He had a goal – to run the Boston Marathon. But first he had to get in shape. He started running every day. Lost 50 pounds. Joined the Santa Barbara Athletic Association. Gradually got stronger and faster. Looked like he was right on track to qualify this year. Hal registered to run the Santa Barbara International Marathon. He was very excited about the event. He planned to qualify for Boston at the Los Angeles Marathon – and then improve his performance at Santa Barbara.

Then around February, things started to fall apart. He was tired all the time, and getting weaker instead of stronger. He kept injuring himself. Blamed it on “overtraining”. Then we noticed his speech seemed slurred. He tried to run the Los Angeles Marathon. Had to stop halfway because of severe cramping. Couldn’t finish. Kept training, but with more rest, less distance – and thought he would surely qualify for Boston at the Santa Barbara Marathon. But things kept getting worse. Finally Hal saw a doctor. Then a Neurologist. Then went for tests. And more tests. He was sent to UCLA for even more tests. Finally, on August 5th, 2009, we got the horrible news: Hal has ALS. A degenerative disease that causes progressive muscle wasting, eventually leaving the victim unable to move, talk, eat, or even breath. There is no cure. Yet.

People with ALS can continue to live and even enjoy life, if they are able to access good medical care when they need it- communication devices, motorized wheelchair, feeding tube, ventilator. And research scientists are out there trying to find effective treatments – maybe even a cure. . .

Meanwhile Hal, amazingly, is enjoying life. As he loses his strength, he tells me he appreciates more and more what he has left. This week he was able to jog/walk with our ridgebacks for almost 2 miles. He is very happy he can still jog. And walk. And enjoy More Mesa and Ellwood. His speech is slow – but he is happy he can still talk. He chokes on food and water frequently – but he is enjoying every taste, every swallow. He needs help opening jars, bottles, and other things – but he isn’t embarrassed to ask me for the help – he does it with a small smile. . . I don’t know how Hal can see life in such a wonderful way – but I am grateful that he has that ability, and am trying to support his positive attitude. And I cherish every moment I have with him.

One surprising thing Hal and I have learned is that ALS is more common in marathon runners and endurance athletes than in the general public. This is statistically significant. And very disturbing.

I am sending you all my direct link to the MDA ALS website for the Fundraiser. Some of you have already donated and/or are helping me in other ways. Thank you so much. Please don’t feel obligated to donate. Come cheer our ALS relay team on (after you finish the marathon, if you’re running it.) We’ll be wearing yellow T-shirts, and Hal is going to anchor the last 1.9 miles. He might not be running, but he will be finishing the marathon.
https://www.joinmda.org/sbmarathonals/fran

Hal and me running a half marathon in Denver, April 5, 2009


Hal's last long run: Disney Half Marathon Sept. 6, 2009

See you on the road –

Fran

Another nice link is the link to the MDA-ALS team page, which has links to other participating local families, each with an story of their own. . . https://www.joinmda.org/MyEvent/MyTeamHomepage/tabid/116843/Team/ActiveAdultsAgainstALS/Default.aspx

Posted by: ElliptiGO Girl | October 24, 2009

Because we can

Tomorrow, (Sunday, October 25th) Hal and I are participating in a fundraiser walk for the Los Angeles branch of the ALS Association. It is a two mile walk, and it’s being held in Pasadena, CA. Hal is going to walk it with me and other family members. The logo on the T-shirt says “We walk because we can”

This morning I did a tempo run workout with Rusty and Mike. We ran a total of 13.5 miles – although only 7 of that was at tempo. That is a long distance for me. I almost did my usual bit – start hard, and finish early. But instead, I hung in and completed the whole thing. Because. I. can. I run because I can.

And afterwords I felt great. What a gift – to be able to run! And walk. To be able to trainl And get stronger. To be able to overdo it sometimes. And recover. To be able to plan for the future.

I run because I can.

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