• August 11th, 2024
• Life
• By Steve Shead
• 0
• 2

Part Three - Flying - Stuck in the FAA Medical Loop...

UPDATE 08/08/2024

I am still waiting for the airmans records - the theme here being 'waiting'. It's the last packet of information my lawyer needs to hopefully clear up the final hurdles. Yep, I've probably mentioned all this already but as you can see it's not the second week of August and I'm still waiting.

I'm still unemployed and dealing with the aftermath of having my position eliminated. I still can't fathom how anyone could think that was a good idea, more specifically since I am a cybersecurity expert. I need to stop thinking about that since all it does is dredge up some pretty strong emotions. I could go down the rabbit hole of depression, but I choose not to. I choose to look ahead and keep moving towards whatever that next goal is.

Right now I have a good batch of folks that are willing to fly with me. This week I've flown twice, each flight cost me around $45 in gas (since I own the aircraft). Each time is a release, a reminder of the freedom of being in the air, a sanity check per se, and there are enough folks to fly with me that will keep me occupied for now. But you know, nothing beats flying alone or with a loved one, family, or friend. I am so looking forward to that.

Hopefully this week the airmans notes come from the FAA and we can wrap this up. Much as it has been a journey I am ready for it to be done, and get back to carefree flying.

Still fighting ...more as it happens.

Onwards and upwards!

Cheers

Steve

UPDATE 08/14/2024

I sent an email to the FAA to check on the status of my request for airman notes - they still haven't sent them, but they said they were actively working on them today. It was July 10th (I believe) when I sent the request in and much as the FAA has promised to do better, it's still not happening. I can't blame the employees over there. My take is they are doing the best they can with what they have. This is on the records side by the way. I'm still stuck behind the fact that an FAA consultant who doesn't know me at all can make a ruling that supersedes the medical experts who are my current medical doctors. It blows my mind that can happen, and reading the notes from those consultants is mind-blowing. I'll get off that soap box for now, but man, that system needs a serious overhaul.

I'm ranting, I get it. Next month will be two years that I've been fighting to get my medical back. Meanwhile I've amassed around 110 hours of flying with no issues. I fly with PPL holders in my plane - they pay half the gas - and we have fun. Ethically I cannot and will not fly without a medical but I have to say the temptation has been there in the past, especially noting the FAA's posture on medicals. I have two medical professionals that have stated on paper that I do not have any medical condition to treat. Why is that not enough?

Sorry - ranting again. I'm hoping that the FAA will send my notes today and I can wrap this up. I wish I could be more optimistic, but having gone around in circles so many times, gotten my hopes up only to be disappointed, it's hard to see an outcome right now.

I'll get off the pity party now ...sorry 'bout that.

Still fighting ...more as it happens.

Onwards and upwards!

Cheers

Steve

UPDATE 08/17/2024

I received the airmans notes today and reading pertinent parts has hit me quite hard. The sleep consultant stated he cannot make an assertion of diagnosis if he can't see the original diagnosis. In other words, if he can't refute the original diagnosis he can't approve the medical. I'm still numb having only just received and read it. Next month it will be two years of fighting this and every time I make headway another wall is put up in front of me. 

I'm not done fighting but every brick wall thrown up has a finality to it. I will wait to see what my lawyer states but I am uncertain on how this is going to work. This coupled with being laid off is his me hard. Too many knocks ...it needs to stop.

One way around this is to leave the country and fly somewhere where there isn't a mark against my medical record. I self identified with the FAA. How many folks out there fly with disqualifying conditions that they don't report to the FAA? I'm mad because I know I don't fall asleep unless I'm in bed. No-one I know has the sleep hygiene that I have, and the attention to mental state that I have, and I'm the one being denied the privilege of flying? Don't you think DMV would not let me drive if there were anything to worry about? On that note - zero car accidents in 26 years of being in this country ...sorry, ranting again. 

I need to let this go for now, and wait and see what my lawyer says. We cannot provide the original diagnosis since records older than 10 years have been purged. And to ask for sleep apnea details and a CPAP report when I don't have sleep apnea and don't use a CPAP leaves me wondering what the hell is going on over there at the FAA. I'm stuck in a loop of self-pity right now. That's not me - just need to get over myself for a while, somehow.

I'm mad, sad, depressed all wrapped up in a bundle. I know I will need to get a hold of myself, but I need to go through these emotions to get them out of the way. We'll see where this ends up. I am ever hopeful that I will be allowed to fly, and will continue to fight for that right as long as I can. I don't know what comes next ...a miracle perhaps?

Still fighting ...more as it happens.

Onwards and upwards!

Cheers

Steve

UPDATE 08/19/2024

I've had a day or two to get over the initial shock. I'm done with the emotions of it, for the most part, and I'm not giving up. I sent everything over to my lawyer right after I received it and just now (3pm) got an acknowledgment of receipt. Now I wait for the attorney to go through it and find out what next steps are. I really don't know what comes next.

What this is not going to do is stop me flying. There are plenty of folks at the local flight club that need hours and are willing to contribute half the gas for a couple of hours of flying with me. I've been doing that once a week for the last few weeks in my RV6A and loving the cross-countries we have done. I also have my bi-annual flight review in the next week or so - that'll be fun. I've done the ground portion already, just need to fly.

Where does this leave me? I have absolutely no idea. I am out of ideas and don't know where this will end up. If I look at it 'as stated' it looks like I will never get a medical, specifically because the one consultant has a viewpoint that perhaps my own sleep experts don't agree with. I just don't know how to interpret what goes on behind closed doors at the FAA. In one document to AME's is states “If additional testing, evaluation(s), or documentation verifies the diagnosis of Narcolepsy was rescinded, no longer requires treatment, or has resolved, submit the following for FAA review…” Why would they ask for documentation proving rescinded, no longer requires treatment, or has resolved if they will default deny the application based on a consultant's thinking? It feels like half of the FAA wants to modernize, but the other half is stuck in the last century.

In between all of this disappointment, I am still unemployed. I have had a couple of interviews that haven't panned out, and have a couple of irons in the fire - nothing notable right now though. That doesn't help my frame of mind. I'm making sure to keep busy every day. I work out six days a week and still follow Weight Watchers points plan to keep my weight in check. We go out once a day to at least have a change of scenery, and I do at least one job search a day. I'll keep going.

Another iron in the fire is trying to sell our house to move back south. That hasn't panned out either. We've been on the market for a long time with very little activity. We've had an offer from someone who wants us to carry a note for up to 90% of the purchase price. That's too risky for us.

So, all in all, some shitty situations to be in but what can I do? I have to ride them all out and hope that my sanity stays in check. It's a weird place to be in. Too many negative things going on yet I have to keep smiling. At least I'm managing to keep smiling. 

Time to get on with the day. I'm not the 'depressed' type and have a lot that I can be doing. If only the medical would be approved I would gain so much of myself back. I cannot give up the fight - I will not give up the fight.

Still fighting ...more as it happens.

Onwards and upwards!

Cheers

Steve

UPDATE 08/21/2024

I had a call with my lawyer today - there was no hope in his voice and my heart sank. He says we really can't fight the memo that the FAA consultant put out there. We'll still answer the requests from the FAA but it looks like I am done.

He highlighted a couple of things to try. There are two lab tests that I could do. One that is done through a lumbar puncture (CSF Hypocretin-1 ) and one through a blood test (HLA DQB1*0602). These don't prove or disprove Narcolepsy but can show a propensity for it. He also mentioned he is going to reach out to the FAA consultant to see if he is willing to do a consult with me. Perhaps the personal perspective will show him that I am safe to fly.

I'm a little nose blind right now. Two years of fighting, multiple years of no symptoms and it comes down to one person's viewpoint. That one person doesn't know me and has never seen me as a patient. His word against two industry sleep experts who know me intimately and have worked with me for years. It doesn't seem right. 

I'm in shock. Each time the FAA takes action the opportunity to regain my medical gets smaller. Each time they say no but if you provide X ...then reject again. It's left me feeling numb. There's not a lot that can make me hit the bottom of the barrel. I lost my job ...yep, that sucks but I know it wasn't my fault and I know I will find something eventually - no rock bottom there. 

Why does it affect me so deeply? I don't know. All I know is the passion that I have for it and the way it makes me feel. It's like a love story. Without it, I feel hollow and empty. It's a part of me deep inside who I am, and I am and would be lost without it. Have I given up? No! But I don't know that I can get past this now.

I still have my plane and can fly with qualified pilots, but I cannot fly alone and I cannot take my husband flying, and I can't tell you how much that bites. Yes, I'm oozing self-pity right now, after all, it could be worse. I could be seriously ill; could have no money; could be in debt and a whole host of other things so, am I still blessed, of course. I have a loving husband, a roof over my head, food to eat, and even the luxury of a car to drive AND enough money to weather being unemployed so, in essence, I am truly blessed. I will never take that for granted or forget that - so - forgive a guy who is griping over a medical for a costly hobby. I feel a profound sense of loss.

I truly hope that the FAA consultant agrees to meet with me. Perhaps that perspective will let him know that there is no risk for flying. My integrity and conscience will always be guiding lights for me, much as it sometimes hurts.

It's now the end of 'that' day. I am tired and mentally sore. I can't let this get to my relationship with my husband so will have to eat it a bit. He knows what it means to me but I don't know that he knows the depth of what I feel about it. I need to regroup and hope that the last straw is the one that allows me to get my medical back.

I have an interview with a recruiter for a job that I really like tomorrow afternoon. I am also flying tomorrow with a new person, and doing my biannual flight review on Friday with my favorite CFI. It could be worse. 

Where is the magic cordial when you need it? (inside joke, kinda thing).

Sorry for the pity party. I have to find creative ways to get it off my chest, and this is pretty much the only outlet I have. But then I'm assuming that folks actually read this. There is me assuming again.

Still fighting ...more as it happens.

Onwards and upwards!

Cheers

Steve

UPDATE 08/22/2024

I needed that vent yesterday - even though it was a 'woah is me' post it helped me get it on paper and off my chest. I'm still fighting it, but not in the self-pity sense, more in the resolute sense. In the post I apologized for the pity party - I shouldn't apologize for having real emotions. I am not weak, I am human, and we all have those days. So, I got it off my chest - now to fight another day. Yeah, it doesn't look good right now but you know, it might just change.

Still fighting ...more as it happens.

Onwards and upwards!

Cheers

Steve

UPDATE 09/02/2024

The game plan now is to try to contact the consultant that did the review. Apparently he has retired now so getting a hold of him is proving difficult for my lawyer. My lawyer is on PTO this week but has the contact information of the consultant's ex-secretary and is going to try that route.

Meanwhile, I'm writing a letter to the FAA safety division asking them to consider my case. Symptoms don't just appear, they are progressive over time so I would self-report and self-ground if I thought symptoms would occur. The core values of the FAA Flight Surgeon Division are:

• • Create a just culture.
  • When reaching a hurdle, try to find ways to get to “yes.”
  • Conduct risk-based decision-making.
  • Treat people as individuals.

If this is the case the FAA should trust that I would not fly if I felt I were impacted by symptoms. Note I would not fly if I could not follow the IMSAFE checklist anyway, which is:

• • Illness: Do you have current or recent illnesses that could affect flight?
  • Medication: Have you been taking any meds that could impair your ability to fly?
  • Stress: Are you experiencing unusual psychological pressure and/or anxiety?
  • Alcohol: Have you had any alcohol in the last eight hours? Are you hungover?
  • Fatigue: Are you tired and/or not adequately rested?
  • Emotion: Are you emotionally upset about anything?

So, this is where I am right now. Still cannot fly solo or with friends or family. Still flying at least once a week with a safety pilot. Last week I completed my bi-annual flight review with a CFI (certified flight instructor), which was a bout 90 minutes in the air doing maneuvers and aircraft handling and 60 minutes on the ground going through theory. Yep - I passed that too.

I fly a lot with a pilot that is doing her commercial and instructor ratings. She has the same passion for flying, and we fly for a couple of hours and a couple of hundred miles chatting about aviation, marveling at the scenery and finding new places to go to practice touch-and-go's. Last week we flew from Troutdale to Shelton (slightly north of Olympia) and back. It was a wonderful flight. We dodged around the hills and flew past Kelso. We were around 4500 feet and having a blast. Those flights go by so quickly since we both enjoy them so much. I'm 'paying it forward'. She needs to build time and I have an aircraft and need a safety pilot so we spilt the cost of the fuel. That saves he hundreds of dollars an hour to get the time she needs, and gives me a pilot to fly with. It's a win win.

That's where I am right now. My mind is still resolute - I'm past the self pity stage and still marching forward.

Still fighting ...more as it happens.

Onwards and upwards!

Cheers

Steve

UPDATE 09/12/2024

I managed to find contact details for the FAA consultant and sent him an email, as well as a message on LinkedIn. It's a long shot but I have to try every avenue to get my medical back. Here's what I sent:

--------------------------------------------------

"Hi Dr. A,

Recently you consulted for the FAA on my case for a Class 3 Medical, which is still in process. You mentioned in your response that you haven't met with me regarding my case, thus I wanted to ask if it would be possible to do a virtual consult with me to help with that case. Here's the reference number: PI # 2171318

I know this is a long shot, but I have been working with the FAA for two years to get my medical back, and this is the furthest I have gotten.

I also understand that the answer may be no, and that's ok, but I have to ask. I think understanding my case more so by meeting with me will add perspective and clarity.

As a 40 year veteran pilot I am and have always been deeply passionate about flying, and still continue to fly but with a safety pilot or Certified Flight Instructor. I have to continue to fight for the right to fly.

Thanks in advance for your help.

Sincerely

Steve Shead"

--------------------------------------------------

I'm not sure how I feel about what I wrote but there it is. I was trying to get him to have a conversation at least. He replied on LinkedIn. Here is his reply:

--------------------------------------------------

"Good afternoon, Mr. Shead.

I appreciate you reaching out. I certainly understand and appreciate your passion about flying. I’m pleased you’ve found a way to continue in the air while things wend their way through.

As you may know, I am not the person who decides whether to issue an authorization for special issuance. To help provide you with more information, I spoke with Dr. Penny Giovanetti, the Director of the Medical Specialties Division. Dr. Giovanetti assured me she would be contacting you directly to provide you with more information.

Sincerely"

--------------------------------------------------

I feel like he missed the point. I need him to be able to ask me questions and talk through the diagnosis with me to better understand my case. Instead, he is deferring to what seems like a HIMS AME. I believe my lawyer also sent him an email but I'm still not sure if the email I sent was received. I tried a follow-up note on LinkedIn but haven't received a reply yet. The mess remains messy, and the path forward is still foggy, and long. It's not getting any clearer and each time I jump over a hurdle, another one appears, or at least that is how it seems. One of the points that needs to be known and talked through is the effects of Narcolepsy. Symptoms such as Cataplexy. The severity can vary and for me, it was extremely mild, but was only felt after a long period of sleep issues. Once the sleep issues were cleaned up it was never felt again. To that end, the symptom is predictable. Even if it were to happen it would be after severe sleep issues and would be gradual in severity, hence being able to self-ground if issues occurred. That being said I haven't had symptoms for over 17 years. You would have thought that would mean something.

My lawyer wants me to make an appointment with a specialist at the Mayo Clinic if we can't get this guy to meet, and to take a couple of tests that I mentioned in a previous post. This has already been a super expensive and time-consuming process, and going this route will just amplify that - but - what alternative do I have? I'm still unemployed, so money is tight, so if I can get another opinion at the Mayo clinic it would have to be a virtual consult, otherwise, I cannot afford to do it. Doesn't that feel wrong? You can't win if you cannot afford to fight. Welcome to life...

In the meantime, I sent an appeal to the FAA safety director. This isn't a 'usual' track but in my research, I've read that someone got their medical after such an appeal, so I had to try. I sent that certified mail yesterday. I played on the 'trust' point - trusting that if symptoms were to appear the airman (me) would ground themself and report the issue. That's what I did the first time around so to my mind it shouldn't be different - but - what do I know? At this point, I feel like I'm throwing darts at a dart board that I cannot see!

I keep asking myself when this nightmare will end, and it does feel somewhat like a nightmare. You know, the hall of mirrors - you think you see a way out then 'thud' you hit another glass panel? Yeah, that ... 

I'll continue to fight, and continue to fly. This week we flew to Scappoose and pounded the circuit for an hour and a half. There were four other aircraft doing pattern work so it was a stress test that we both aced, even when a Diamond DA42 entered the runway whilst we were on a short final. Yeah, we did a 'go around' ...even though the pilot of the Diamond stated they would be out of our way with enough time to spare. If we had continued the approach we would have landed on their roof ...that was fun!

Time for bed!

Still fighting ...more as it happens.

Onwards and upwards!

Cheers

Steve

UPDATE 09/14/2024

I received an email from an FAA Dr. stating I am not allowed to consult with the consultant that made the assertions on my case. How do you truly diagnose (or understand) someone if you haven't met with them? So, that avenue is off the table. 

Here's what they said:

"Dr. A forwarded your message to me.  We feel that it is important for our consultants to maintain their objectivity, and therefore we do not allow them to see the airman they review as patients.  Dr. A is an expert in sleep medicine and the opinion he wrote is well supported by the literature.  One normal sleep study does not negate a diagnosis.  That said, we are always willing to review new information and reconsider a case.  I wish I had something more encouraging to say."

So ...to be blunt, I have had two sleep studies completed around a year apart. Does this mean they have not read my case notes? If they are to make an assertion I would have thought they should know the details. I'm confused. the AME guide also states that if a diagnosis is resolved, rescinded or no longer requires treatment submit the results - which I did - yet they it seems like they are not honoring their own words. Again, I'm confused.

Here is my reply to them:

"In that case, I apologize. I did not realize there was a rule for contacting consultants. Please accept my apologies.

To your comment about a sleep study, two sleep studies were done about a year apart with the same (normal) results – no Narcolepsy and no sleep apnea. I have had no symptoms in over 12 years. I have also been off the medications for two years and there is still no EDS, which in turn means no cataplexy. I believe all of this was outlined in the case put forward by my lawyer.

I am putting together more information to respond to the communication on 7/2/2024.

Thanks for the email. I appreciate it."

I thought considering how annoyed I was at the time this was a good reply. I'm not sure I'll get a response to be honest. It seems they might have bent the rules just sending me that. It sometimes feels like a nameless machine that cycles through folks medicals without a thought to the fact that they are dealing with actual human beings. I know that sounds rude, but I always like to think about, what if the shoe was on the other foot? How would I react? And I always land on the personable 'being real' side, cognizant of the person on the other side of the conversation, whether empathetic or not. In some way I get it. They are over whelmed, but they are also working through an antiquated thought process. These days you can fly a "light sport aircraft" (100HP or less ...there's more to it but it's a lower powered type of aircraft) with just a drivers license. That's progress "somewhat" but the thinking about medical conditions and how they pertain to human performance is still stuck in the old ages, or that's a common opinion. Enough of that...

My lawyer wants me to arrange consult with someone else at the Mayo Clinic but I need guidance on what I'm supposed to be doing with that. I cannot afford to travel to them since I am still unemployed - plus - I have already spent over $10,000 just getting this far. Yep, still confused.

There are major things going on in life right now, this being one of them. It's a test - I get it, but it's time to put this to rest and just fly. I have a drivers license with zero accidents; no EDS (extreme daytime sleepiness); I track sleep to average 8 hours a night and am fit and healthy. Hmm - I think I just went off on a tangent again.

Time to wrap this up. Frustration is kicking in again that two years on I still have to fight this. My last thought is, there is a general lack of understanding of what Narcolepsy is. I'm not going to go into details but as with any other condition it can be anything from mild to severe. Symptoms don't just magically appear, they gradually come on with bad sleep, causing EDS. If the FAA system is based on trust, why can't I be trusted to self-ground and self-report if symptoms were to occur, as I did when I was first diagnosed? Folks have gotten medicals after heart attacks, epilepsy, diabetes and unexplained loss of consciousness, all of which are not predictable. Mine is, so what is the problem? End of rant!

Still fighting ...more as it happens.

Onwards and upwards!

Cheers

Steve

UPDATE 09/19/2024

We are staying with friends in Aptos this week, and during a conversation about flying our friends mentioned their friend, who is a highly regarded Sleep Doctor / Psychiatrist. I pitched that to my lawyer instead of cold calling someone at the Mayo Clinic, and he agreed it would be a good path forward. I reached out to the new doctor yesterday, sending over a ton of information and he has already gotten back to me. So, this part of the journey begins. Now to get him up to speed on where things are and what I need from him. 

Meanwhile, we are taking time to relax and disconnect from the mayhem at home. With this medical fight, losing my job, and trying to sell our house, there is enough stress to bowl over a mule, so time away is good. Our dear friends used their airline miles to fly us down to California. I have to say, it was stressful thinking about taking time away from all that is going on, but it's been a fantastic distraction. We are both really tired, but we are getting sea air, some great walks and some outings, plus we get to see our friends (more like family). 

Obviously, the fight is still on. I am hoping that this sleep specialist can provide the context that we need to succeed. I was irked that the FAA had a consultant rule on my case without allowing me to speak with him. That seems so one-sided.

On the flying side we took a flight from Troutdale to The Dalles - did some pattern work - from The Dalles to Goldendale - did some pattern work (man, that runway is narrow!) - from Goldendale to Hood Rive - landed so we could both get a bathroom break - then back to Troutdale. Just over two hours of flying - it was fantastic. At least there is that.

Still fighting ...more as it happens.

Onwards and upwards!

Cheers

Steve

UPDATE 09/20/2024

Just chatted with the referred doctor - he can't do anything since he says Narcolepsy is not his specialty. He gave me a referral to someone he thinks might be better suited to help but also stated this is an uphill battle. Every time I hit a roadblock my body and mental state take a hit. It's the ongoing battle, as you know. He empathized with me. He knows exactly what I am trying to prove but it's my word against the FAA at this point, and that's a hard one to win.

I asked for an introduction to the referral and will know more once I get that in order. Until then ...

Still fighting ...more as it happens.

Onwards and upwards!

Cheers

Steve

UPDATE 09/23/2024

A quick update - I got the referral to another sleep specialist but I swear folks don't read what I actually write! We have been going back and forth in email and it's getting frustrating. I'll write something if I can ever get him to either acknowledge my request, or not. I'm probably being unfair but I get a sense folks don't read what I write, they read what they want to read. ...probably just me.

It all feels overwhelming, then I fly, and I'm good. This is why I cannot give up. I have to go all the way with this, even though it's stressing the hell out of me.

Still fighting ...more as it happens.

Onwards and upwards!

Cheers

Steve

UPDATE 09/28/2024

I'm still going back and forth in email with the sleep doctor. He seems hesitant, which makes some sense since he doesn't know me and hasn't treated me. That being said, I tried again to get him to assert in a letter ...we'll see if he does it this time around. I can't push too hard. It's not like he's charging me for his time and he genuinely wants to help.

In other news, we received an offer on our house. Inspections were yesterday so we'll soon know if the buyers are going to try to nickle and dime us on fixes. Honestly, being unemployed and not 'needing' to move I'm not inclined to pay for anything. They got the house $35k under asking. That in itself should be enough. I'm not going to jump the gun - let's see what comes back.

No job yet - I have an interview on Tuesday with the CEO of a credit union. I'm hopeful that will go well and perhaps something will come of it. My resume has also been sent to the CEO of a local company for review so their may be a backup plan.

I'm not panicking on any fronts right now. I need to keep a calm head for fighting the FAA, and for my overall sanity. There is a lot of stress going on right now and still no 'symptoms', which further shows I don't have any disorders to treat. Now if only the FAA got that.

Still fighting ...more as it happens.

Onwards and upwards!

Cheers

Steve

UPDATE 10/05/2024

I'm still going around in circles. This evening I sent an email to my lawyer, trying to get traction. The letter from the FAA consultant has basically blocked me, and I'm still not getting engagement from the 'other' sleep doctor. Meanwhile, our lives are upside down with me losing my job and the house not being sold. I'm stressed to within an inch of my life yet I still don't have sleep issues, nor have I had any cataplexy incidents. ...yep, venting. For want of not repeating myself, here is what I sent my lawyer in two separate emails:

FIRST EMAIL ---------------------------

I was thinking about what Dr. A said about cataplexy, and that if there were a drug the FAA recognized that treated cataplexy he would support it. In my investigations around the web, I found this:

“Venlafaxine (Effexor) is one of the most commonly used medications for reducing cataplexy because the dosing is convenient, side effects are uncommon, and it is often very effective. Venlafaxine increases brain levels of both norepinephrine and serotonin.”

According to the FAA:

“Beginning April 24, 2024, airmen who are treated with Effexor, Cymbalta, or Pristiq, may pursue FAA medical certification pursuant to special issuance authorization protocols already in place for antidepressants. A special issuance authorization works like a waiver.”

Therefore there is an approved drug for treating cataplexy. Can we use this in my case?

END FIRST EMAIL ---------------------------

I know there is a point about sleepiness, but one of the main points seemed to be cataplexy, and I wanted to address that specifically. One of the points that irks me is this consultant is making an assertion without meeting with me, the patient. That doesn't feel right. I sent my lawyer a second email:

SECOND EMAIL ---------------------------

One more point – in my research, I have found folks with the following have been issued medicals:

• Cases of sudden unexplained loss of consciousness (still got his medical back)
• Cases of people with heart attacks (not predictable)
• Cases of people with epilepsy

If we lose this round and have to go the route of NTSB appeal, can we use this – or can we even use this now? It seems we have done more than enough to prove our point. What is different about the cases above that they merit medical issuance, but my case does not? I’m not seeing consistency in rule-making and granting of medicals and see the bias as default deny, not as the FAA should be in trusting airman and finding a way to ‘yes’.

I’m confused as to why the FAA would state in the AME guide to produce evidence of resolved, rescinded or no longer requires treatment if they are not going to abide by it. We’ve proven the condition (if it exists) is under control, yet they still keep denying me.

I’m thinking of sending another letter to the representative …what do you think?

I’m in a state of flux right now. Our house is now sold and we have to move out by November 8^th – we don’t know where we are moving to yet since I’m interviewing in both Portland, OR and Santa Rosa, CA (neither is a given). …and I’m getting frustrated that the FAA won’t issue me a medical.

Sorry to vent – my stress levels are through the roof yet I have no cataplexy and no sleep apnea – isn’t that telling?

I’m still working with the sleep doctor …he’s not the most communicative. I will be following up on Monday 7^th.

END SECOND EMAIL ---------------------------

Yeah, frustration is coming out with my lawyer as well. I feel like I'm doing the research and the fighting, and he's not. I don't believe that's the truth, but it feels like it. He's a great guy and he's probably overloaded. I feel like I've lost but I can't stop fighting ...so...

Still fighting ...more as it happens.

Onwards and upwards!

Cheers

Steve

UPDATE 10/15/2024

I finally met with the doctor I have been emailing back and forth with. We did quite the long consult and, again, it gave me hope. The only problem with giving me hope is what it feels like when that hope is dashed.

Here's the letter wrote for me:

---------------------------

"Dear Mr. Shead,

I am writing this letter in regards to your sleep condition. You may forward it to FAA examiner when needed.

I have reviewed all your sleep medicine records since 2010 from Stanford, Palo Alto Medical Foundation, and the Vancouver Sleep Clinic.

I found two normal MSLT results and you have not had cataplexy for more than 8 years. Also, you do not take naps during the day. Your Epworth score is 7.

MSLT on 01/27/23 showed a mean sleep latency of 10.2 minutes and no SOREMs.

MSLT on 10/06/23 showed a mean sleep latency of 8.5 min and no SOREMs.

I have never seen a narcoleptic patient who does not take daily naps. I have asked my other colleagues and Emmanuel Mignot, MD, who have not seen any such case either.

I believe he does not have narcolepsy nor cataplexy based on the above findings.

Regards"

---------------------------

So, now I have three current sleep physicians stating I do not have a condition to treat, the last one stating I do not have Narcopsy or Cateplexy. I sent this over to my lawyer and am waiting to hear how he is going to respond to the last letter from the FAA. I can't fathom how they can overrule three current experts based on one retired expert's assertions, but then this is the FAA - they are a law unto themselves. Oops - off on a rant ...go figure.

I don't have a lot of brainpower left to write too much tonight, but I have written a draft communication for our Congresswoman to get involved. She can't make medical assertions but she can pressure the FAA on why they refuse to issue a medical given all of the information available to them. I have to keep the pressure on. Fundamentally I feel I have a case. Much as I lost hope after the last round, I feel a sense of hope again. Like I said at the beginning of this post, I don't want to feel hope because being rejected again would be crushing (again).

Whilst all this is going on, our house is now sold. We have to move out before it closes on 11/8, and we don't have anywhere to live yet. We are going to rent a fully furnished townhome from our realtor in the meantime. I still don't have a job, but I'm in the hiring process with three entities right now. One in Santa Rosa, CA, one near Sacramento, CA, and one in Portland, OR - all while packing our house up. My office has been deconstructed so conference calls are either on the dining room table or in Tim's office. So much stress, yet, my sleep continues to be stellar and I have no cataplexy. Telling, no?

One more issue. I went to fly yesterday but my plane had a flat tire! Totally new to me on how to fix that. I purchased an innertube from friends at the local flight school, so that was handy. Now I need help to install it. Wow ...what a week!

I need to shut up now - time to go relax. 

Still fighting ...more as it happens.

Onwards and upwards!

Cheers

Steve

UPDATE 10/22/2024

I met with my lawyer this morning, noting that we now have three currently certified sleep doctors that have met with me and asserted the same way. Much as it seems this should be a slam dunk, it won't be. I get that - the FAA are so antiquated in their practices that they can't see the nuances in a case. This time though, one of the doctors (the last one) has stated that I do not have Narcolepsy or Cataplexy. That should hold weight.

My lawyer is going to put the case together and try to get it out by the end of this week. I am again hopeful - welcome to the rollercoaster. I wonder how many times we go around this one? 

If this is not successful my lawyer feels we have a case to present to the NTSB. Much as the NTSB can't rule on special issuance requests, my combined three doctor submissions are all indicating that I do not have Narcolepy or Cateplexy, therefore should be granted a Class Three medical. Of course, it's never going to be that easy.

The last part is I have written a request for help to our Congresswoman in the hope that she can for the FAA to respond to why they are not issuing a medical, especially noting the three doctors testimony. I will send that a couple of weeks after my lawyer responds to my case in the system. Another olive branch so to speak. Not sure our Congresswoman can do anything, but it's worth a try.

So, once again I find myself hopeful. Having had my hope dashed so many times I'm surprised at myself for daring to feel hopeful, but what else can I do? I am not going to give up. 

Meanwhile, last week I had a puncture in the right mainwheel of my little plane. Normally that would be a simple thing to do but not having worked on aircraft wheels before I didn't want to chance anything. The guy I purchased the plane from came out and helped me change the innertube, and it wasn't that difficult. He showed me how to jack up the aircraft using the tiedown holes and a jack, as well as how to remove the wheel, and then the tire. It took us just over 90 minutes, so not long, and it was good to learn how to do it. I am very thankful the previous owner was so gracious with his time and wanted to help.

Okay - enough optimism for now. We live to fight another day. Let's hope this one is the last hurdle we have to jump through. Much as I love flying with other folks I want to fly on my own and with my spouse - I deserve that.

Still fighting ...more as it happens.

Onwards and upwards!

Cheers

Steve

UPDATE 10/25/2024

I read through my last post and kinda don't think it makes much sense - but then it's raw. If that's the way it came out, I'm going to leave it be. It seems grammar is a stalling point for me, though ...just sayin'!

That being said, my lawyer let me know he will be sending a submission next week. I've read through it and it makes sense, but I don't know that it makes the point strong enough. That's probably just the 'dramatic' me thinking, how do we pound the point into the brain of the reader? He's coupled that with over 200 pages of submissions from a clinic I went to earlier in my diagnosis. I want to be excited. After all, I now have three medical providers that assert either I have nothing to treat, or don't have Narcolepsy or Cataplexy.

I'm actually having trouble concentrating right now. I had an interview at 11am, plus we've been packing the house up. I think my brain is done for now. I have an all-day interview on Monday with a company near where we currently live - that'll be a long day. I also haven't heard back from the credit union I interviewed with on Tuesday. That was a third-round meeting with three would-be peers ...but then they aren't the quickest in communication. I've been in process with them since August 2nd - yeah, that long. One wonders if they are serious at the rate things are progressing.

Good thing though, I flew yesterday with a female CFI friend. We flew up past The Dalles to Goldendale, did a couple of touch-and-go's then flew back. It was peaceful and the scenery was awesome. The saving grace in all this is still being able to fly. My primal brain says fly anyway - my conscience says stick to the rules. I have a strong conscience so sticking to the rules it is.

Well - I didn't really want to write too much tonight - I guess I blew that out the window.

Still fighting ...more as it happens.

Onwards and upwards!

Cheers

Steve

 

UPDATE 11/7/2024

The update is, there is no update. We're in the hurry-up-and-wait loop again. The MedXpress website is still saying declined. I wondered if it would change back to 'in process' or similar with the new information. Early next week I 'might' be sending another document to our congresswoman. I'll need to check with my lawyer on that.

In other news, I'm still interviewing with the company up here. This was interview number seven. It's time for them to make a decision. We sold our house and are living in a furnished rental whilst this interview process goes through. If I don't get this job, we'll probably travel south. If I do, we'll stay up here and buy a house. It's all up in the air right now.

Anyway - the interview today fried my brain so it's time to relax.

Still fighting ...more as it happens.

Onwards and upwards!

Cheers

Steve

UPDATE 11/14/2024

I sent the congressional request on Monday and still haven't heard back, yet. And, no change with the FAA MedXpress website or any indication of receipt of the updated case. Perhaps the election got in the way, or it's just the same old FAA doing 'hurry up and wait' - nothing new there I guess. Two years and two months now - sheesh. Do you ever get those moments of fear where you want something so bad that it feels like you are actually pushing it away? Yeah ...I'm there.

I don't know what to make of the congressional inquiry not being acknowledged. The first one I sent was acknowledged on the day I sent it. Again, perhaps the election, who knows. I'll have to ask my lawyer when it is prudent to follow up.

Meanwhile, after multiple rounds of interviews, I didn't get the job. The consensus is I dodged a bullet, but it still bites to get a rejection after so much effort. That makes three refusals. That's tough, considering it has only happened once before in my career. I'll keep applying and keep trying. Tiring? Yeah ...Stressful? Yeah ...gonna get to me? Nope!

Other news - we decided to stay up here and purchased a house in Portland. Yep - that happened. We close on 11/22. Fun times. That narrows the job market a bit, but we need stability, a home base, so to speak. I'm looking forward to stability, even without a job. I haven't given up hope.

There is so much stress around right now, I'm surprised I'm keeping an even keel. But then I was always good at handling stress. So much for the 'condition' being exasperated by stress ...oh wait, according to the doctors I don't have a condition. Yeah, sarcasm and irony ...what a concept. I'm fading ...long day!

Still fighting ...more as it happens.

Onwards and upwards!

Cheers

Steve

UPDATE 11/25/2024

It seems the congressional folks replied the day after I sent it, but I didn't receive the reply. I followed up today and got the response that it's in process. They give the FAA thirty days before escalating, so we wait ...oh, there's that theme - hurry up and wait! 

The FAA hasn't responded to my latest communication sent through my lawyer. Not a peep ...the MedXpress website remains on 'denied'. I get that they are probably understaffed but the lack of any communication, coupled with the extended wait times are just horrendous for those on the wrong side of that curve. It's been 26 months now, and counting.

Other news - our last container arrives at the new house tomorrow. We actually closed on the 20th, which was nice. We've been taking stuff over and have unloaded the first container already. I installed a Ring Doorbell and a new Bluetooth front door lock. I have an alarm system to install also - but - the main reason for this is to establish a base and some normality...I'm blanking on the right way to state this. It's like a foundation for what's to come. We've been in a state of flux since May when we put our house on the market ...then I was laid off in June so we've been up in the air since then (pardon the pun!). 

I haven't flown in a couple of weeks. Safety pilot availability as well as weather have gotten in the way of that. I'm hoping to fly in the next couple of days.

So as not to bore you too much more, I'll stop now!

Still fighting ...more as it happens.

Onwards and upwards!

Cheers

Steve

UPDATE 12/4/2024

I received a reply from the congressional inquiry. Here's what the FAA told them:

"Since our prior correspondence with your office dated June 17, 2024, we denied Mr. Shead for medical certification due to his history of narcolepsy with cataplexy and obstructive sleep apnea. He has submitted new information which is currently pending review. We will notify him of our determination once the review is complete."

It feels like a boilerplate reply, considering the information I sent over. I'm never too sure what to make it the FAA ...I would call them cold and emotionless and lacking any care about the pilots they deal with - but then I have a jaded sense of them. The MedXpress website still shows denied. I would have thought they put that back into review, but that's just me.

We are in our new home now, slowly getting things sorted. Once I put up some artwork, it will feel more like home, but we are enjoying a walkable neighborhood, and some of the local eateries are awesome. There's a place called "The Heist", which is a compound full of food trucks with a central hall for eating when it's cold. We ate there twice, both times the food was awesome.

I haven't flown in a month — the weather and moving got in the way. I'm hoping to remedy that tomorrow, assuming the weather plays.

Anyway, I'm still in the same frame of mind. I have a case - I have three medical professionals certifying me against one FAA consulting default no and one saying remission after 6 months. I wish this was simple.

Still fighting ...more as it happens.

Onwards and upwards!

Cheers

Steve

UPDATE 12/17/2024

Still nothing - no news, no information, no reply, not even from the congresswoman. MedXpress is still stuck on "denied". I worry about timing with the whole new president thing. Will the FAA survive? If so, will it still be viable? What will happen to the medical process? So many things that I cannot control.

So much time, so little progress, and this is ok, apparently. Or am I just marred by the process? it's been 28 months of waiting, and denials and has cost an arm and a leg. I'm unemployed now and still have to fight. I have three certified specialists, two of which have stated "nothing to treat", and one has stated that based on what he sees I do not have Narcolepsy, so, how does the FAA get to deny my medical? They are basing this on two opinions they've received. One stated the he cannot approve anyone with Narcolepsy - the other stated the condition being resovled is based on 6 months without symptoms. So, even the FAA specialists are split. That makes the professional opinions I have even stronger. But wait, that makes too much sense, doesn't it?

Other news - a friend help me install an oil sump heater on my RV6A yesterday. I'll be installing a remote switch once it turns up so I can turn it on a few hours before I fly. I'm still having issues with the battery, or the battery charger - I'll know more when I can get over to the hangar to do some fault finding. I've only flown twice in the last month, and that is getting to me. It's easy to get someone to fly with, but the weather this time of year sucks. So, flying stuff is still happening, and always will.

Ah yes, rambling again - best leave this here and go relax.

Still fighting ...more as it happens.

Onwards and upwards!

Cheers

Steve

UPDATE 12/31/2024

It's the last day of the year - my how the days, weeks and months pass by so quickly.

Yesterday I received a notice from the FAA the my appeal had been sent to the Federal Air Surgeon's Psychiatry/Sleep Medicine specialist for consultation again. The last time they did that it was denied. This time the difference is a third opinion that I received from a highly qualified current sleep specialist stated I do not have Narcolepsy or Cataplexy. I cannot fathom for the life of me why they keep denying me when the specialists all say the same thing. The only difference is the consultants the FAA use don't know me, nor am I allowed to consult with them. They are making arbitrary decisions without meeting me. Oops ...ranting again.

The MedXpress website still says not cleared to fly. 

Philosophically speaking, this has been a bit of a shit show. Some arbitrary FAA doctor (consultant) making assertions without talking with me. All the while three experts are stating I do not have the conditions stated, but those assertions don't seem to mean anything. It's almost like a comedy of errors. The FAA are going to deny me, period. They don't seem to care that I have been cleared three times.

My lawyer has stated that if this appeal fails, knowing that I have one of the specialists state I don't have the conditions, we can go to the NTSB and appeal the FAA decision. Great - another avenue is good but that means more waiting, more fighting and more angst for me. All the while I'm asking why is this happening? I get it. The FAA have to safeguard the skies but this is bordering on rediculous.

Yup! I'm getting bent out of shape again. The futility of the FAA in light of what's supposed to be the modernization of flying is overwhelming. Them ignoring expert opinions in favor of retired consultants opinions is baffling the hell out of me.

Oh dear - I went off again. Ok, I'll stop. Here is a pictures of a short flight today over Vancouver, WA. Vancouver was socked in with fog so we bounced around the east hills for a bit. The engine needed a workout since we hadn't flown in a while, and we got to proof the new engine heater with remote switch, which worked extremely well.

Still fighting ...more as it happens.

Onwards and upwards!

Cheers

Steve

UPDATE 01/12/2025

You guessed it, still no news. Nothing, nada, no letters, the MedXpress website is still the same, no communication - typical FAA. This fight has been going on for 29 months now - 29 months! Three experts say I don't have the condition but still I don't have a medical because the retired FAA doctor doesn't agree! Retired FAA doctor ...versus three currently serving medical specialists, one of whom works with the world's foremost expert. This is the definition of insanity, I swear! I'm going to stop here with the rhetoric. Coupled with being out of work for six months and my patience for this bullshit is about gone.

I still fly the plane that I own. There are plenty of pilots out there that need to rack up hours but can't afford the normal hourly rate. If they sit right seat for me they get around two hours of flying in a fantastic little airplane for around $40. They love that - I love that. Below is a pic we took last week flying up the Columbia river chasing fog over Kelso.

This is 'me doing me things', in a place were I am content and away from the whims of the world. This is all I ask for from the FAA. I wanna swear so bad right now...

Still fighting ...more as it happens.

Onwards and upwards!

Cheers

Steve

UPDATE 01/15/2025

Short update - I got another letter from the FAA stating the same as the one I already received. One was dated 12/19/24 and the new one was dated 12/30/24. One is from the FAA medical branch, the second was from the manager of appeals. According to my lawyer it's just a repeat stating they have sent my file to a consultant - again. I dare not get my hopes up ...

Still fighting ...more as it happens.

Onwards and upwards!

Cheers

Steve

UPDATE 02/09/2025

I guess it'll be another short update since I've heard nothing from the FAA or from the Congressperson. MedXpress still says 'not authorized' and the pilot lookup still says no medical information. Here we are 30 months in and still going around in circles. I'll say it one more time - I have three certified sleep qualified doctors stating I do not have Narcolepy or Cataplexy versus two retired contractors making erroneous statements about what Narcolepsy is or is not. The FAA believes the contractors over the certified folks - is that a government thing?

Anyway - just letting folks know nothing has changed. 

Still fighting ...more as it happens.

Onwards and upwards!

Cheers

Steve

UPDATE 02/20/2025

It's not good news. I just received an email from the Congresswoman relaying that the FAA has denied me yet again. I'm confused, angry, and (for some reason) hurt by this. Having proven to the FAA three times that I do not have Narcolepsy or Cataplexy, they defer to their retired consultants. It is ridiculous...pathetic ...stupid, and any other word you can think of to describe the asininity of the FAA and the rulemaking.

The reality of modern flight is that if you have a valid driver's license you can fly a Light Sport Aircraft. You don't have to disclose any medical conditions at all. You could have a heart condition, sleep apnea or worse, and the FAA will let you fly - yet - here I am, an accomplished pilot with thousands of flight hours, and they won't let me fly. 

Yes, I'm venting. I don't know how to get this out of my system. I have been unemployed for 8 months now, which is compounding how I feel. I'm sitting in the kitchen at home, alone, and part of me wants to give up. I'm not going to, but I'm tired of the stupidity of the fight. If only I could get some power behind what's going on, but most folks don't want to get involved.

Perhaps the new government will get rid of the FAA - but then that is bigger pile of shit than I'm dealing with right now.

Time to walk the pup and get some of this frustration out of my system. I'm not done.

Still fighting ...more as it happens.

Onwards and upwards!

Cheers

Steve

UPDATE 02/21/2025

I received an email from my lawyer this morning stating they called the FAA today asking about my case and were told it is still in review. The analyst could not find any reference to a denial at this time. I don't dare get my hopes up. It could be just another example of the asininity of the FAA and their inability to coordinate - or - it could be that they are in disarray with the current administration, or, it could still be in review. My head is spinning ...

Still fighting ...more as it happens.

Onwards and upwards!

Cheers

Steve

UPDATE 03/11/2025

Still no news. Typical FAA - takes forever to get anywhere. I'm tired, still unemployed and running on empty so, yeah, I'm frustrated. I'll say it again - why is it okay for retired FAA consultants to overrule three board certified, current experts that have actually met with me? 

I'm not feeling particularly coherent right now, so I'll leave this alone, and just post a pic of my happy place.

Still fighting ...more as it happens.

Onwards and upwards!

Cheers

Steve

UPDATE 04/02/2025

It seems my database keeps getting reset, which is odd. So I have lost a few posts ...sigh. The update is, there is a letter waiting in the queue at the FAA for me, but probably won't be sent out until the end of April. Lord knows why it takes so long. So, no change. Still no medical, still waiting, still trying to work out why I keep getting denied.

It doesn't feel like this letter is going to be any different since MedXpress still shows me as denied. The next available step is to petition the NTSB to reverse the FAA decisions, assuming it's a rejection letter waiting for me. Honestly, I'm tired and grumpy, but I'm not done. I do not have any medical conditions that would deny my a medical. I have proved that three times over, yet, the outdated FAA are using retired consultants to review, and to ultimately deny my medical. It's a farce.

Couple that with being unemployed for the last nine months and, yeah, my head is not in a good place. So as not to be a total downer I'm going to post a picture of my happy place (again).

Still fighting ...more as it happens.

Onwards and upwards!

Cheers

Steve

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