Posted by: franfinney | September 2, 2014

Onward into September

Hal is gone. Just “for now” I hope. But he is gone, at the very least “for now”.  I feel his absence acutely. All day. Much of the night. Little things, big things. 

I stopped posting on this blog over a year ago. Caring for Hal as he continued to decline was all-encompassing, and reporting on his ongoing losses was tough, although the manner that Hal dealt with each subsequent loss was truly inspirational.

Hal did not want to leave this world. He intended to stay here, despite his ALS, despite his body paralysis, despite his relying on life support and round the clock care. Unless (Note – not “until” but “unless”) he risked becoming totally “locked in” (see “total locked in syndrome” http://en.wikipedia.org/wiki/Locked-in_syndrome  )

Hal started to notice he was losing control of his eye movements almost a year ago. Using his eyes to maneuver his computer became more and more difficult.  He had to give up coding (he was working on some bitcoin related open source improvements).Then he had to give up posting or emailing. Then using the internet at all. Then reading ebooks. Then using his speech program. Then watching television. Finally he was only able to communicate by raising or lowering his eyes. Around June 2014 he started to lose even that small amount of eye control. It became almost impossible for him to communicate anything other than issues of extreme physical discomfort and urgency. Then, and only then, is when Hal decided it was time to to go to “plan B” – cryonic preservation. 

I continue to derive inspiration from Hal. I take comfort in the possibility that he will come back to this world some day in the future.  I hope to be there with him.

Taken July 2009

Taken July 2009

Taken July 2013

Taken July 2013

Posted by: franfinney | July 6, 2013

The Society of Timid Souls, or How to be Brave

In late 2009, after learning that he has ALS, Hal posted an article on a site called “Less Wrong“. His post was titled “Dying Outside”, a play on a short story titled “Dying Inside” by  Robert Silverberg. This post caught the attention of many people, including British author Polly Morland, who was in the process of writing a book about courage. Polly contacted Hal, and in early 2011, she came to the United States to interview him and me.

This month, Polly’s book, The Society of Timid Souls, or How to be Brave come out, both in print and on eBook Kindle. Psychology Today also featured an excerpt of the book, which includes parts about Hal and me, in their July/August issue. Here is a scan of the Psychology Today excerpt:  Psychology Today Article Title Page

Psychology Today Article Page 1

Psychology Today Article Page 2

Posted by: franfinney | February 17, 2013

We’re still here

Family shot, Nov. 2012

Family shot, Nov. 2012

First I want to thank SBAA  https://www.sbrunning.org/ for continuing to have a link to my blog on their site.  I hardly feel like I deserve it – the posting (and running) I have done in the past few years has been at best minimal. But it sure makes me feel good to see that link still there. Thank you so much guys!!!

Hal is still very much alive.  His ALS has progressed a lot since my last post. He doesn’t have much ability to move his body – just his head, a little. He can’t talk or swallow  – even his tongue is paralyzed – but he can still smile, and that beautiful smile is like sunshine.

I am still getting out a little – mostly for 45 minutes or less, unless I have a nurse or other medically trained person to help Jason monitor Hal. Besides the boring stuff like going to the market, my most frequent “escape” is to go for a short run with our dog Elsa, or even better, go for a run with Elsa and a friend.

December 2012: Elsa, Jason, Fran and Hal going for a walk around the neighborhood

December 2012: Elsa, Jason, Fran and Hal going for a walk around the neighborhood

I am grateful that our son Jason is able to live with us – both he and I are now full time caregivers for his dad, and that’s a huge job!! I am also grateful for the many people who express concern and have helped us keep Hal alive and happy.

Life is different now, but it’s still good.

Posted by: franfinney | May 24, 2011

There IS life after a Tracheostomy

Easter 2011. Supervised egg dying, but can't eat them!

Fran. Blogged on ALS forums.com  April 23, 2011: 

I have so much to say! It’s been hard to find time to go online these past two weeks! Hal is in bed now, alarm outside his door, let’s see what I can do!Caregivers perspective here: Today, I feel really bad that I encouraged Hal to get the tracheostomy NOW. Hal and I both have always planned for him to have the trach when it was time. The problem is, how do you know when it IS the best time – not too early and not too late – If you wait too long, then it’s more difficult to recover from the trach proceduere. It is also more difficult and stressful to learn how to suction, care for the trach, etc, when the person with ALS is in bad shape. However, if you don’t wait too long, then you never know if you could have “gotten by” safely for a few more weeks, a few more months, maybe even a year, without having the trach.Before getting the trach, Hal never complained about shortness of breath. His breathing was not an issue to him. I, however, always seem to his progressive changes before he does. I noticed that he was frequently winded after minimal movement. I worried about how frequently he choked on his saliva. So I encouraged him to see his pulmonologist last month, barely over one week after the previous check up. The appointment was March 28. That same day, earlier, we learned htat Hal’s mother had died. Terrible day. The pulmonologist was not able to get any actual test numbers – no FVC, no blood gases – and he pushed us into having the trache done ASAP – he wanted to check Hal into emergency that same day! We put it off until after Hal’s mother’s funeral.The procedure was done April 12, 11 days ago. Hospital experience was not good. Hal could not speak, nurses are always busy, and no one had the time to try to really try to figure out what Hal was trying to communicate. So I spent day and night in his room. Slept on a chair in ICU and later on a cot when he was moved out of ICU. A very difficult week! I won’t go into all of the mistakes made, even with me there. Here are just two: Second day post-op in ICU, after a change in staff, the night nurse almost gave him double meds while I was out of the room – the day nurse had forgotten to chart the evening administration! Hal tried to stop the nurse, I walked in and was able to do that just in the nick of time. Another mistake: First day post-op we were informed that Hal had tested positive for MRSA. Tape around the room. Everyone had to wear gowns, masks, gloves. Even I was supposed to do that. Felt like Hal was a pariah. I kept pressuring the hospital to re-test his sample. Our doctor finally helped make that happen. After four days of isolation treatment, turns out it was a mistake! Hal did not have MRSA.So now here we are, 11 days post-op. Home. Much nicer. However,  Hal is still much weaker than he was before surgery. He is much more uncomfortable. I cannot leave him alone unless I have someone who can take over with a sterile suctioning procedure. So far that has only been paid for LVNs. Speech is now almost non existent. Before he had the trach done, he could talk – it was just difficult to understand him. Currently, we use the ventilator only at night. It’s unpleasant, but Hal is getting used to it. During the day, he breathes through the trach. An opening in his neck. Messy. Lots of secretions. If they accumulate he cannot clear air though that opening.  Cannot let that happen. The good news: Hal is getting stronger every day. He is needing suctioning less and less frequently. Last night, only twice. During the day, internal suctioning maybe 8 times, although we do need to draw the secretions out though external means frequently.. And after Hal heals, he will be able to be suctioned more easily, and it won’t have to be as sterile, so I’m hoping to train some family or friends to help out.

Am I glad we did this now? NO! NO! NO! (Did I say “No?”) 

The problem is, I can’t see into the future. Maybe Hal would have been fine without a trach for a relatively long time. And maybe not. I’m not a gambler. I want Hal to stay alive! Doing this early is a chore. It’s unpleasant. It’s difficult. Hal has lost some more of his independence. Hal suffered damage to his heart or lungs or brain. And he recovered quickly – out of the hospital and back home in one week. We will get used to his new limitations. We have to. And they would have happened at some point, anyway.

But I am very sad. I caused this. Poor Hal.

ONE MONTH LATER:

May 21, 2011. Windy day. GREAT to be alive!

Fran  May 23, 2011
 


What  a change one month makes! Hal now is going from noon until 11pm without any suctioning  whatsoever – and has managed that for 9 days in a row.  He is speaking a bit – using a one-way valve that allows air to pass in through the opening in his neck, but blocks airflow out, sot the expired air moves past his vocal cords and out his mouth. What a gift speech is!
Hal has regained much of his initial post-surgical strength loss. He is snacking on ice cream through his mouth.  He is smiling. Laughing.  So am I.  Soon I will be comfortable leaving him with friends for short periods. Life is good once again.
I do admit, my life now would be considered rather far from “normal”. I am now truly a full-time caregiver for my husband. Here is my daily “Hal Care” schedule:
.

7:30am: 

  • Administer Rilutek.
  • Take Hal  off ventilator.
  • Prepare Hal’s breakfast and morning medications and vitamins

 9am  

  • Get Hal out of bed, help him use urinal, and help him into wheelchair
  • Check and clean opening around trach tube, change inner tube lining and dressing
  • Wash face/brush teeth
  • Shave face
  • Suction trach tube as needed
  • Wipe eyes as needed

 9:30-10am

  • Bring Hal (in his wheelchair), with alarm, and iPad, into family room
  • Breakfast (2 cans Nutren, meds and vitamins by g-tube)

 10 – 11am  

  • Wipe or suction trach tube as needed
  • Urinal as needed
  • Wipe eyes as needed

 11am -1pm:  

  • Toilet time
  • Vaporizer for 30 min.
  • Deflate cuff, deep suction, apply Speech valve (Hooray!!!!)
  • Urinal as needed
  • Wipe eyes as needed

1 – 5pm

  • Snack
  • Shower (every other day)
  • Change inner tube lining and trach dressing
  • Check/change g-tube dressing
  • Lunch #1(1 can Nutren + 2 oz vitamins by g-tube)
  • Lunch #2 (1 can Nutren + 2 oz vitamins by g-tube)
  • Urinal as needed
  • Wipe eyes as needed

5 – 10pm

  • Rilutek + 16oz water at 5:30pm
  • Central line: Administer IV nutrition/flush Change dressing and connector Thurs.
  • Dinner #1(1 can Nutren + vitamins and meds)
  • Dinner #2(1 can Nutren + 2 oz vitamins)
  • Move to recliner at 8:15pm
  • Wipe or Suction trach tube as needed
  • Urinal as needed
  • Wipe eyes as needed

10pm- midnight

  • Transfer from recliner to wheelchair
  • Urinal
  • Floss, brush teeth and wash face
  • Remove speech valve (boo-hoo!), inflate trach cuff, change dressing and inner tube lining
  • Transfer to bed
  • Deep Suction
  • Set up Ventilator
  • SLEEP! Lying next to My One. My Hal.
.
Yes, Life if far different from what I might have planned before the tracheostomy. Before ALS.  But I have Hal.  My life is with him.  It is life.  And it is very, very good.
.

Here is a direct quote from exactly one, very long, month ago:Am I glad we did this now? NO! NO! NO! (Did I say “No?”)” 
.

Please allow me to update that quote:
Am I glad we did this now? YES!”
.

The hard work is done.  We did it!  Now we are prepared for the future.  As ALS continues its relentless course.  Hal and me.  We did it.
Posted by: franfinney | February 27, 2011

Roses En La Playa 2011

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. . .

Posted by: franfinney | February 6, 2011

Superbowl 4-miler 2011

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????

Posted by: franfinney | January 15, 2011

And the world keeps spinning. . .

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.

Posted by: franfinney | November 26, 2010

Winning is NOT Everything: The Thanksgiving 4-miler 2010

9:05am Thanksgiving 2010


Yesterday, I ran the Thanksgiving 4-miler. It was the 7th race I ran this year. All seven have been GP races. And, because I am in a new age group, (55-59) I have taken first place in my age-group category for my first six races. I anticipated I would win this one as well, and, for the first time win my age group in the GP.

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.

Posted by: franfinney | 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

Older Posts »

Categories

Follow

Get every new post delivered to your Inbox.

Join 183 other followers