Jason, Hal, and me - Photo by Jessica, after finish

First of all, I want to thank Jose Gonzalez and SB Action Pro for organizing two races in a row that started not too early in the day, and were wheelchair accessible – so that Hal could come watch me run!

Second, I want to thank Jason and Hal for being there!  It made all the difference to me.

It was another beautiful race day. Sunny, dry, cool but not frigid. Plenty of wheelchair accessible parking for our van.  The registration was well organized, great volunteer staff, and everything started off very efficiently.

I have not been training in the way I used to, but over the past 4 weeks I have been able to sneak a few workouts in. So I felt more ready to run than I have in several months.

Hal rolled up to the start with me. Despite a disorganized and slightly late start on my part, everything went well and felt so familiar! I caught up with my running buddy, Gary Clancy, and used him as a pacer to get my bearings. Thank you, Gary. I happily recognized YMCA fav Leroy Thomas – as well as SBAA/SBRR stalwarts Mike Shalhoub, Ricky Ho, and Jessica Douglas on their ways back – all really moving! (Sorry – Ian – I don’t know you – but I also did see you booking it!) Leroy finished first, in 16:21 – Mike, in third place, only trailed him by 8 seconds. Jessica was 2nd place woman, with a time of 19:13, trailing first place Cindy C. by a little under a minute.)

And, there at my finish, my special Hal, waving his left arm in recognition, and my son Jason, with a big grin.

My time? 23:15.  About two minutes short of my best time on that course over the past couple of years..  But way better than I’ve been doing lately.
Feels so good to “be back.”

Over the past two years, Hal has gone from being considered an “athlete” to being so weak that most “disabled” modifications are not enough. It has been if nothing else, an education. For the whole family.

When Hal the “athlete” first started experiencing problems (that we eventually found were part of his ALS) , he was running over 50 miles per week at a good clip – training seriously to qualify for the Boston Marathon. A local Rheumatologist we consulted was confident that Hal’s muscular soreness and fatigue were a normal part of aging. He advised Hal to back off on his training. Hal followed his advice, but continued to get weaker, and started to develop subtle speech abnormalities. Six months later, when Hal was finally diagnosed with ALS, he was still able to run at a much better than average pace for his age.  No longer considered an athlete by his performance level, he was still considered “fit”, well above average in strength, lung capacity, and  endurance. Some of the medical  professionals we saw locally and at UCLA did not appear to be too concerned at that point. They tried to reassure us that Hal’s progression could be very slow – that it might be several years before he needed assistance with daily activities. Some extended family members also tried to reassure us  - after all, although Hal was not up to his usual level of fitness, he was still running, talking, eating, he looked strong – why worry about the probably distant future.

Do I wish they had been right! But unfortunately, Hal’s progression was  rapid, even though his general heath and fitness were superb at onset. Hal ran a half marathon on September 4, 2009 – one month after diagnosis. The way he describes it, that race “used up his running muscles”.  After that race, he was only able to jog, and for not more than a couple of miles.  But when compared with the general population, Hal was still “normal” and healthy. By November 2009, Hal had to give up even jogging.  By early December, he was walking with a cane. He still managed to walk 2 miles, with breaks, and would still take the dogs out occasionally. By January 2010, he was using a walker and needed to rest after a few hundred yards.

In March 2010 Hal and I visited his mother in Texas. We took along Hal’s first motorized wheelchair – a small, transportable one without back support.  By then, Hal fit into into the “disabled” category. He could still enjoy activities, but needed to prepare and plan so that he would not overtax his muscles. He could still eat, although he needed to be careful and eat slowly.  He could talk, but not too loudly, too fast, or for too long. He could type, but his typing speed had slowed from 120 words per minute to at best 60 words per minute. He could hold things if they weighed less than a pound or so.  Despite these limitations, travelling was fun.. An adventure. And modifications to allow for his disabilities were everywhere.

As 2010 progressed, Hal continued to weaken. He became more disabled – but still fit into a handicapped or disabled category. It was only recently that we became aware that most assistive and adaptive technologies are no longer relevant to Hal. He cannot be simply categorized as “disabled” now. He cannot write, and types with one finger of his left hand . His speech is difficult to understand.  His hands are too weak to hold most things.  When we travel, the focus is not on adapting things so that he is able to participate in various activities –  but on his being kept safe and comfortable. Even for short trips, we need to bring his large, motorized wheelchair.  A manual wheelchair is not sufficient – his wheelchair must not just provide transportation, it also needs to offer the tilt, recline, and elevation functions that supply back and neck support and offer us a way to move him into and out of the chair. Sitting upright in an airplane for over a couple of hours is very difficult for him. Plane changes are fraught with potential for losing his wheelchair, and other mishaps. Any place we stay overnight must not only be wheelchair accessible, it should also have a hospital bed, room for his Bi-Pap equipment, and some way for him to get to and use the shower and toilet. Just a ramp, shower bench and grab bars are not adequate. Being labeled “wheelchair accessible” no longer necessarily means “appropriate for Hal.”

There is no category for Hal now – no mass grouping with appropriate accommodations  that allow him to easily travel and experience different, fun things.  It has become very difficult to find places to go or stay that are set up for his needs. We can’t even go into most people’s homes. Because of this, trips and and touristing have become so much more challenging than they need to be! And he wants to and should be able to travel and enjoy life..

Now the good news: I actually found a hotel (the Mirage, Las Vegas) with patient lifts, adjustable beds, and other really cool accommodations.  Places like that do exist – ya just gotta look hard to find them.

Las Vegas, here we come. . .

Hal and me, just before the race.

Ran a race this morning!  Very last minute.

Yesterday, Hal asked me if I was planning on running the Superbowl 4-miler race..  As usual for me lately, I had not gotten up early enough to run yesterday. I said “Maybe. . .” and Hal said “I’ll come!” Jason, our son, who generally prefers not to go to my races, was willing to come along help Hal out during the race. So off I went to Outfooters – to sign up and commit myself.

I had no expectations whatsoever for this race.  At least in terms of my performance. Two years ago, I ran that race in 27:44 – 6:56 per mile. Last year, six months after Hal was diagnosed with ALS, I ran the race in 30:28 – 7:37 per mile.  My most recent race, the New Years Resolution 5k,  I ran at over an 8:05 per mile pace.  And that was a shorter race. But I did have a hamstring strain at the time. My training strategy since New Years?  Recovery. As in no running.  A bit of jogging with my dog  - once a week –  for 2 miles at a 15 minute  per mile pace, with my brace on. Not very impressive.

So there I was. Beautiful day.. Sunny, no wind, not too cold or too hot. I put myself In the back, and off to the side, so I could see Hal and wave. The race started.  I trotted over toward Hal. And waved.  Then I started passing people.

Well – I can’t say I ran a great race, or even a good one, but considering my “training strategy”, it went surprisingly well.  Rusty cheered me on twice – to my embarrassment and delight. Hal and Jason were waiting near the finish. Hal raised his left arm to show he saw me. And I finished strong, coming in at 31:25 – an average pace of 7:52.

So.  Recovery. A good strategy?  Hmmm…  I do think, unfortunately,  there is a limit to the performance enhancements one can expect, if one follows that stategy exclusively.

But right now, I feel great.  Coached workouts, here I come????

Hal, December 25, 2010

So. I haven’t posted for a while. Not because things have stayed the same (I wish.)
More because I haven’t had the energy.

Went for a jog this morning with Elsa, my ridgeback. Haven’t been able to run with SBRR or SBAA since I pulled a hamstring warming up a month ago. (I did run the New Years Resolution Run with that pulled hamstring – but it hurt and I was very slow. Don’t feel justified in complaining though – I CAN still run, walk, etc. and will probably be fast again at some point in my life. . .)

Hal has continued to lose strength. It’s difficult to assess if the disease progression is slowing. What I can assess: It is more difficult for Hal now than it was a month ago to speak intelligibly. It is more difficult for him to get out of bed. It is more difficult for him to move from his wheelchair to his recliner. Typing is slowly accomplished using one finger of his left hand. He rarely wants to try to drink anything, and chooses not to eat more than a couple of cookies or a pudding over the entire day now – so he needs to be fed by tube. Everything has become more difficult. I dread the day when Hal won’t be able to do those things at all and will be completely dependent.

Meanwhile it is difficult for me to motivate myself to run, swim or do any form of exercise other than teach classes. My available windows of time for such things are narrowing. And it just seems so crazy that I should be working on my fitness when Hal cannot do even the most basic things. In addition, when I do actually attempt to run I keep injuring myself. The most recent injury was about 5 minutes into my warmup.

I do have one special thing to cling onto. Hal is here. With me. And the world keeps spinning – with us together in it.

9:05am Thanksgiving 2010

It’s been a tough year for me in terms of running and training. Hal’s ALS has progressed very, very rapidly. In September 2009, he ran a half marathon, albeit very slowly for him (9-minute mile pace.) By late November 2009, a year ago, he had just given up running, but he was still walking, and doing everyday things in a normal way. The ALS progression did not stop, or even slow down from there. Hal continued to experience losses in strength throughout his body. He is now not able to walk. He will be getting a G-tube (feeding tube) next week. His speech is very weak, sometimes incoherent, and he will be getting a speech device within the next few weeks. The pulmonary doctor thinks it’s time for him to get a trache and start using a ventilator, at least on and off through the day. Every week, he needs help with more and more activities of daily living..

I’ve been gradually getting back my running speed since my knee surgery in June 2010. It’s been challenging, because I am now on a “Hal schedule” – Hal can’t be alone. And we have a 12- hour IV medication schedule to meet. And I’m still working part time. Recently, I ran a couple of early Tuesday track workouts at sub 7-minute mile paces – with my heavy rigid knee brace on – and the pace actually felt normal again. I ran one morning with the Vieja Valley group, again wearing that annoying brace – at a sub 8 minute pace and it felt easy. One thing about “brace training” – it’s like training with extra weights and restrictions – you feel so free when they’re gone! And they are gone for short races. I allow myself that luxury. Hallelujah!

Hal loved to run. He also loved to watch me run races. The last few races I ran were difficult for him to get to – too early, too far, too off road. So he wasn’t able to come come. I won my age group in those races, but Hal wasn’t there to watch me win. He was really happy he would be able watch me race the Thanksgiving 4-miler.

I was really happy, too. To make it even more special, our daughter Erin, who lives in Denver, was in town for Thanksgiving, and she decided to join us.

We arrived at the race early yesterday around 8:10am, and parked the wheelchair van near the registration/finish. Beautiful weather! I picked up my race number and warmed up. Felt great! Came back to check on Hal and my daughter near the car around 8:45am. The line of people who had not pre-registered was still very long. Around 8:50am there was an announcement that the race would start 10 minutes late. I stayed with Hal and Erin.

At 8:04am as I was thinking I’d better head over to the start, Hal said “Let me take a picture of you and Erin”. Erin and I posed. Smiling. Facing Hal. It took Hal a while to take that picture– pulling out his cell phone, manipulating the controls – all very challenging for him. But he did it!

Then he said “– oh – Fran – I think the race has started!” My back was to the race, and I had no clue. I was stunned. Glanced at my watch – it was only 9:06 – the race wasn’t supposed to start until 9:10 according to that announcement.

I took off toward Hollister.

Got to Hollister – and to my dismay I saw people already turning onto Turnpike. I hit my GPS lap button – (No time to stop/restart!) and kept running!

I ran a very fast race – considering my erratic training over the past year. My time – 28:14 – was over a minute slower than 2009 (27:05), – but it was a good, fast run for me, just over 7-minute pace.

However, I did not come in at that time on the clock. Because of my late start, my official time is at least a couple of minutes slower than my actual race time. I did not win my age group. And although I had bested my current age-group competitor in every head-to head race prior to this one, for the first time, I came in officially after her.

Am I unhappy? No. Disappointed, yes. But very happy. I had a great run. My husband, the love of my life, was there. So was my daughter. If I have to chose between having Hal and Erin at that race vs. winning the GP for my age group, there is no competition whatsoever – and I got my choice.

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

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.

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.

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