John Darrow medical and Social Security status (8/12/2005)

Several people have asked about my medical status, and my progress towards receiving Social Security Disability Insurance (SSDI) benefits.

As many of you are aware, I've grown progressively weaker over the years, including having some sort of seizures/blackouts for many years. I filed for SSDI benefits once I realized that these conditions were now severe and frequent enough to significantly interfere with being able to seek, hold, or consistently maintain a job. The weakness is the primary problem, and often prevents me from being able to talk on the phone or leave my desk even to go to the restroom. Over the last 30+ years, the problems became more and more frequent, and the weakness more and more debilitating. I find I can function well enough now to participate in a meeting for a few hours, but I'm utterly drained afterwards and have frequently slept for 10-14 hours afterwards.

I persisted in working through almost all of that, and found ways to compensate so I could work, such as by using a wheelchair (beginning in 1993). I definitely wanted to continue working, and did keep working even after I was eligible for early retirement. However, by early 2001, I was no longer able to adequately compensate, and was considering retirement, going so far as to request pension estimates, when Qwest made the decision for me a few months later by eliminating my job (along with thousands of others). I had also stopped driving back in 1971, so that's another "major life activity" that's been impacted for a long time. I've had a couple of times I needed someone else to help dress me, and several times I've had to have someone feed me, either because of weakness or tremors, including a few times at Communion. (When I'm shaking enough to spill my cup of water all over, I describe it as "my drinking problem" as in the movie Airplane!) I blacked out briefly rolling down a hill in October 2002 and ran into a wall, scraping my wheelchair along it for a bit. A few months earlier the same thing (brief blackout going down a hill; no wall involved though) happened and I scraped up a shoe and left my foot a little tender. On another occasion I was unaware through several sections of a Sunday morning church service without realizing it - I thought that some songs and other items in the bulletin had been skipped, but when I asked Zora about it, I learned those had been done. I also have had spasms/seizures twice when reaching for a tray of ice, and torn a bit of skin off one knuckle.

I had worked in the computer field for 34 years, including 28-1/2 years with what is now Qwest. This included Web design and development, relational database work (including speaking at two International conferences), antivirus and security education (I spoke at several security organizations to educate their members), and a slew of other stuff. Since filing for SSDI, I have been able to give some intermittent help to a few nonprofits in the computer area, but can't sustain the consistent schedule needed with a job. (I was only able to manage 23 hours for Community Ministry over 7 weeks - less than 10% of a normal work schedule. I tracked the time so they could count it as "in-kind donations" of technical assistance when applying for grants.) The SSDI benefits would amount to 18% of what I earned the last full year I worked, so seeking disability benefits obviously isn't a way to make money. However, with my Qwest pension, they would allow us to meet our obligations. (Note: beginning in February 2004, Qwest increased the amount retirees pay for medical insurance, and the copays for prescriptions and doctor visits were increased, effectively cutting my net pension by over $250 a month.)

At my Claimant Conference for Social Security, I was told that qualifying for benefits would be dependent on the severity of my conditions. After several hearings and three denials, my case is closed with Social Security. The reason given for the denials was that although my doctors have confirmed the blackouts (I had been reporting these for 30 years), they have yet to discover the underlying cause or condition. At a hearing on April 14, 2003, I had two witnesses besides my wife testify to what they had observed as to my condition, especially the growing weakness. The judge said there wasn't anything in my medical records to support my claim. She also expressed concern/hostility at not finding any prescription for my wheelchair use, although I never claimed it as limiting me, but as having helped me to keep going. (I was able after the hearing to locate records signed by two different doctors, in 1997 and 2001, that included my wheelchair use, and sent those in to Social Security.) One of my major mistakes in the hearing was to not regard "Can you do <whatever>?" type questions as really being intended to reflect "Can you consistently or regularly do <whatever>?" The judge also regarded my volunteer work (already documented for one period as 23 hours total over 7 weeks) as indicating an ability to work.

One suggestion was that a mental health evaluation might be in order. (Another possibility they mentioned was asymptomatic migraines.) I've had three sessions with a psychologist who has told us she sees "no psychiatric problems", especially depression, and one session with a psychiatrist who administered an MMPI-2 and told me the results wouldn't rule out "conversion disorder." (The scale on the MMPI-2 that is higher with this condition is also higher for people with higher education, higher intelligence, or in higher social circles. Conversion disorder also usually, but not always, follows a particular trauma, rather than being a progressive condition.) The psychologist also agreed that it appears that the fact that I've found ways to compensate for this deterioration over the years works against me now on getting disability benefits, because the records then don't show it stopping me when it was less severe.

For a while I was on L-dopa for Parkinson's disease, a disease that fits with the weakness, difficulty talking or moving, and tremors. This medication was both to treat these symptoms and as a diagnostic tool as to whether I might actually have Parkinson's. However, a Parkinson's specialist decided that I have "essential tremor" rather than Parkinson's, and took me off the L-dopa.

Besides the weakness and blackouts, I'm affected by tremors, arthritis, asthma, sleep apnea, and diabetes - some of which are now under good control. I'm having significantly fewer blackouts than I was at one time, perhaps due to being on Dilantin.

My diabetes and my asthma are both fairly well controlled. Some early blackouts (1977 and 1985) that required paramedics, ambulance trips, and hospital emergency room treatment were probably asthma-related.

My sleep apnea is also under control. At diagnosis, my apneas (when I stopped breathing) were 103 an hour. (The death rate rises significantly beginning at much lower levels than that.) Use of a CPAP machine and oxygen concentrator at night has raised the oxygen saturation in my blood to above the 90% level, instead of below 50% where it had been.

So that's my current status. If we can find a medically determinable cause for my condition, I can file a new case. And if a cause is found by April 2006, 4 years after my initial SSDI filing, I can request that that case be re-opened. A lot of this will be repetitious for many of you. We greatly appreciate your prayer and concern, and the assistance we've received from several individuals and organizations.