Failure to Launch!

This post is a difficult and emotional one for me to write.

Melanie and I rescheduled our tandem skydiving to this past weekend.  We were excited!  It was beautiful weather, warm, great weather for a jump day!  Mike at the Maytown Sport Parachute Club instructed us to show up at noon.  We were there on time, and it wasn't very crowded at noon.  John took us right into the classroom to watch a video about the risks of skydiving and to sign our lives away - I think there were probably close to 50 paragraphs we had to read and initial indicating we wouldn't sue in case of accident or death, and our heirs wouldn't sue either.

I gave Mel the opportunity to choose whether to jump first or second.  She chose first, afraid that if she waited she might chicken out.  She put on her jump suit with John and went through the drill of how to get out of the airplane and what the videographer Mike wanted her to do.  After about a 30 minute wait for others on the manifest to jump and refueling the plane. Mel, John and Mike boarded and went skyward.  About 12 minutes later, we saw them overhead exiting the plane at 10,000 feet, tine specs.  Then we saw John's drogue deploy to slow them to 120 mph (instead of 170mph) and Mike circling them taking video.  After a little less than a minute, John's chute deployed and Mel and John floated to earth.  Mel got to steer the parachute and they did a lot of tight turns that she said were a lot of fun.  They landed without incident and Mel was all smiles.

While Mel was in the air, Chuck and I suited up and Chuck walked me through what was expected to get into the tandem rig and exit the airplane.  There was one flight manifest between Mel's jump and mine.

When Mike got his chute repacked, he walked over and talked to me about the video and what I should do when we were freefalling.  We waited for another manifest in front of us to jump and the plane to refuel, then it was our turn.  We had another lady with us in the plane who took a "short jump" at 4,000 feet.  She looked like she was in her 60's, and she indicated she had jumped about 6,000 times since she started in 1970.

It was a breath of cool fresh air when they opened the door at 4,000' feet and she jumped.  They closed up the door and we started our climb to 10,000 feet.  It takes a while.  The scenery was beautiful! 

I made a mistake when I put on my jumpsuit.  Due to ALS, my mouth alternates between too much saliva and being totally dry.  I remedy the dryness and stifle the urge to gag by sucking on small sugar free lozenges.  I had quite a few with me, and I put one in my mouth before I got my jumpsuit and tandem harness on.  However, I neglected to plan ahead, and having waited almost 30 minutes with my jump suit on before boarding the plan, my lozenge was gone shortly after the lady jumped and I had no more at hand - they were buried in my pants pocket and inaccessible.  Maybe if I had a drink before I got on board I would have been okay, maybe not.

Normally, this wouldn't be too bad, but with my heightened excitement (okay, I was appropriately scared) about jumping out of a plane, I started feeling like I was going to gag on our climb to 10,000 feet.  That happens to me fairly often these days, but the lozenges work well.  Unfortunately, I couldn't access them in my pocket with my harness and jumpsuit on.  I started gagging around 8,000 feet and thought I might vomit in the back of this small plane.

Chuck was concerned and told me if I had to vomit to do so in my helmet - they don't carry barf bags like a commercial flight and it would be a real mess and ruin everyone else's afternoon if they had to smell it on their ascent after my plane ride.  I didn't barf, but it was a near thing.  I felt like I was starting to get some control back as we approached 10,000 feet and felt I could exit the plane for the jump, but Chuck and Mike quickly decided that it wasn't worth the risk - for Chuck and for me.  The jump masters take their life and their passenger's life in their hands for every tandem jump, and if someone is in distress like I was, it is always safer to abort and retry.

So, after fifteen years of waiting to do the deed and jump out of an airplane, I came very close, but failed to launch.  My body let me down this time.  Obviously, I was extremely disappointed, but I respect the difficult safety call that Chuck had to make.  I was clearly in distress, and I have no doubt that he made the correct decision and credit him for doing so.

I was defeated and morose as we flew back to the ground.  Chuck and Mike were very sympathetic, and Chuck told me several times to keep my chin up.  We went back into the classroom to talk about what happened.  They gave me every chance to convince them I could use the lozenges to control the gagging and was ready to go back up and try again, but I felt that I couldn't face a second disappointment if it happened again and I was concerned that even with a drink ahead of time and several lozenges it could still happen.  So, I decided not to wait for a new manifest and try again that afternoon.

I am very happy that Mel succeeded and that she had such an incredible freefall and canopy experience.  She said she would do it again and when I am ready she will go with me again.  She should have her video later this week and I look forward to seeing it.

My third attempt wasn't the charm that I hoped it would be, but I know what to expect now and I hope that I have a chance to try again and am successful the next time.  It was definitely a life experience and a learning experience, just not the one I expected.

Grateful!

I have a lot to be thankful for!  I have felt really good since my appointment at the Hershey ALS Clinic on Wednesday morning.  I cut down my caffeinated coffee to one each morning, but no headache.  I feel less stressed, stronger, and am definitely less worried.  I have had fewer gagging/choking events the past few days, and I am very grateful to have some relief!  I don't know if the Riluzole can act that quickly, if I am experiencing a placebo effect, all of your prayers are being answered, or if my body has finally relaxed a little bit, but regardless of the source/sources, I am very relieved to not be suffering the same effects! 

Thank you for your continued prayers!

We have already exceeded our team goal for the ALS Walk for the Cure on June 7 at the Hershey Med Center!  Three people have signed up to walk with Kim and me.  A sincere thanks to everyone that has donated or signed up to walk with us!  The Team JFK page is open and accepting new walkers and donations.  Kim and I will match the total donations up to $1000 total to thank you for your generosity.

Reading about the Brainstorm Clinical Trial in Boston, where they will be testing the safety and efficacy of a stem cell therapy that has had excellent results outside of the U.S. for a product called NurOwn, based on harvesting the individual's mesenchymal stem cells, treating them, and then reintroducing them into the individual's body again.  There is another stem cell research project in Atlanta, called Neuralstem.  Since ALS is a brain/spinal column/motor neuron disease, it makes sense to me that stem cells may hold promise for a future therapy or a cure.

Enjoying the long weekend so far!  I got up at 2:45AM to try to see the meteor shower, but it was completely overcast.  Oh, well!  Hope that some of you were able to see it.  They were predicting between 500-1000 meteors/hour, which would be phenomenal.

Doing a little bit of work, interspersed with reading my book, sitting and holding Kim's hand, talking to Jean.  I brought Jean some of my purple Columbine, which has been spreading at our house over the past 10 years.  She planted them this morning - I hope that they survive.  They are a beautiful color!

I learned that my Uncle Frank in Grand Junction, CO fell this week and may have had a minor stroke.  He is at the VA hospital for now and my Aunt Geneva is living alone in their apartment.  Our prayers for both of them and I hope that Frank recovers quickly, regains his strength, and gets home soon.

For our traditional Memorial Day weekend cookout tonight we are having hamburgers, hot dogs and Kim's famous hot dog sauce, Pasta salad, baked beans, and deviled eggs.  YUM!  I'll cook them on the grill shortly.  Have a nice bottle of red wine I am going to open in a minute to let it breathe before Kelly and his dog Liam come over.

I hope that all of you have an awesome weekend, spend quality time with your family and friends, and make some good memories.

Diagnosis ALS

My first symptoms started in early November 2013, just after I got my annual flu shot at work on my Anniversary, 10/24.  I woke up one morning, and my speech was slurred and I noticed muscle spasms in my face and neck at night when I was sleeping or waking. 

I thought it was related to my stress at work and maybe the flu shot.  I told my doctor as much.  We decided to wait and see if it cleared up.  I started googling slurred speech and its causes and found lots of things  it could be, but I never figured it would be ALS.  I didn't know that ALS has a form called Bulbar, that tends to start above the shoulders.  I just learned that about 1/3 of ALS diagnoses start this way, the other 2/3 start in lower limbs like arms, hands and legs.

Of course I procrastinated going to see the doctor.  I'm a mutt of Norwegian and English/Irish descent, so I am stubborn and hardheaded - just ask my wife Kim or my family.  I have the usual stubborn streak for a Knudson - a mile wide and a mile deep.  We were dealing with my father-in-law's nursing home stay and driving to State College from Mechanicsburg every weekend to help with Bill Harris at Hearthside and Jean at home and had been for 16 months at that point.  Work was crazy, lots of projects, some that needed to be done by year end, and lots of hours on weekday evenings and weekends. 

I saw my doctor again before our week in Jamaica with family and friends at an all inclusive resort.  We agreed that if my relaxation didn't fix my problem that we would go the next step and refer me to a neurologist.  I though at first it was better during the early part of the week, but it was back and getting worse again by week end.  I went back to Dr. Young the following week and he gave me a neurology referral.

Dr. Young sent me to a very good neurologist at the new PinnacleHealth West Shore Campus, Dr. Liana Laza.  Dr. Laza told me that based on my symptoms she thought I could have the Bulbar form of the disease.  She helped prepare me for the eventual diagnosis so that confirmation wasn't as difficult as it might otherwise have been.  Three weeks after my initial visit, I went back to Dr. Laza for an EMG test.  The lower portion of my body was good, but she couldn't get a reading with the electrode on my partially paralyzed tongue.  So, a referral to Hershey Med Center and the Neurological Center, which also has an ALS Clinic.

I saw Dr. Velazquez (de Espana) and Dr. Simmons Thursday morning 5/8 for over an hour.  They ordered blood tests across the street and asked me to come back at 12:15 for another EMG test.  This one was conclusive, and they diagnosed Bulbar ALS based on the fasciculations they saw on the EMG machine.  A fasciculation is a non-normal electrical response from the nervous system, a misfiring, if you will.

Seven months later, work hasn't slowed down much, if any.  I have about 7 different projects/initiatives I am involved in between 4 different clients and have been spending three to four days a week onsite at PennDOT since February with a project that has to be completed in June so that the Department can submit their annual mileage and roadway information to FHWA.

I am a workaholic.  I admit it.  I have lived to work instead of working to LIVE.  That changed last week on Thursday when I was diagnosed with Bulbar ALS.  While things are still crazy for the moment, I have to make time for myself, my loving wife Kim, my family, and my friends.  That means making lots of plans immediately for the next 2 years and making lots of lasting memories for the rough days that will be ahead - both for me and my family and friends. 

I have a positive outlook, and I think I am a strong man, but my faith, my body, my patience, and my loves, family, and friends will likely be tested in the years to come.

Next: Speech Pathologist on Wednesday morning this week.