Hi. My name is Scott McDaniel. I was diagnosed with MS (multiple sclerosis) in July of 2025 after becoming ill in November of 2023.
Table of contents:
- who am I?
- what's wrong with me?
- what do I want?
- didn't you used to be funny?
// Who am I to you? //
You may know me from my IT/Web/Consulting work at The Learning Company, Chilliware, Promethean, the Southern Poverty Law Center or from working on projects with companies like Coca-Cola, American Airlines or others.
You may know me from Twitter. You may know me as in independent software developer in the late 90's and early 2000's. You may know me from various blogs and sites I operated, such as BabyGotMac.com, or perhaps from my work and advocacy within the Linux, WordPress, Drupal and MacOS communities.
You may just know me from hanging out on the dark underbelly of the internet for 30 years.
If you do know me, you are aware that I have always been a problem solver, a (sometimes infuriating) vocal champion for the underdog and a bit of a troublemaker.
You also know I am vulnerable to a fault, and pride myself on coming from trailer parks and housing projects to having everything anyone could wish for (for a while). If you know me in real life, you are also aware I suffer from depression, anxiety and childhood ptsd.
As if all of that wasn't fun enough, I got sick out of the blue...
// Begin Medical Timeline //
- late November of 2023, I got covid after a week long company get together.
- throughout December 2023, I remained ill and spent Christmas and New Years in bed.
- in January 2024, I was finally able to see my doctor and lab results indicated I had a condition called Epstein-Barr.
- on February 2nd 2024, I was admitted to the hospital for dehydration and infections.
- on February 5th 2024, I was dismissed from my job and lost my insurance on March 1 2024.
- in April 2024 I enrolled in the ACA (Obamacare) and was able to get access to Teladocs who attempted to treat the Epstein-Barr effects on my thyroid, liver and kidneys.
- around August of 2024, I began experiencing increased fatigue, muscle weakness, a marked decline in cognitive abilities and, most alarmingly, I was falling down. Literally standing up doing something and the next moment on the ground - not fainting or passing out...just collapsing like jello.
I told both my therapist and the Teladoc about these issues. My therapist did some basic tests and recommended that I see a neurologist. He referred me to one but my insurance wouldn't cover it.
Here is the part where I tell you that between my therapist and 3 individual Teladocs, I spent over 9 months trying to find a neurologist. Eventually, I had to re-enroll in insurance and switched insurance carriers. (The American healthcare system is hell - but that is another topic altogether).
So after the new insurance kicked in, everything started moving very quickly:
- June 2nd 2025 - my first visit to the neurologist. He agreed that there was something odd going on and scheduled an MRI.
- June 13th 2025 - brain and spinal MRI performed.
- July 14th 2025 - neurologist review in person of films and preliminary diagnosis of MS based on brain and spinal lesions, atrophy and ongoing symptoms. Lumbar puncture scheduled and a followup was scheduled for August 12th 2025.
- July 24th 2025 - lumbar puncture performed.
- July 31st 2025 - lumbar results are posted to MyChart. Neurologists office asks me to come in asap based on the results.
- August 4th 2025 - neurologist confirms MS diagnosis as well as 'Demyelinating disease of central nervous system', 'abnormalities of gait and mobility', 'Anarthric dysarthria', 'abnormal reflexes' and 'stenosis'. He refers me to both a rheumatologist (which is scheduled for December 29th 2025) and a neuroimmunologist.
- September 19th 2025 - neuroimmunologist denied my referral with the note 'based on spinal cord impingement and mass effect it would be best for him to be urgently evaluated by Neurosurgery'.
- October 7th 2025 - seen by neurosurgeon, who determined that he wanted to first try to lessen the impingement by means of medication and physical therapy before he starts digging around in my spine.
- October 10th 2025 - Neurologist assesses neurosurgeons notes, refers again to neuroimmunologist (still waiting).
- October 20th 2025 - first physical therapy session. Scheduled for twice weekly for the indefinite future.
So that's where my health is at.
I have difficulty with speech, cognitive recall, a drastic impact on my lifelong dyslexia, anxiety and depression and to top it all off, constant pain. Though the medications and therapy/exercises are helping somewhat. My sleep schedule is non-existent...I slept for about 3 hours before getting up to rewrite this at 2:30am.
The neuroimmunologist role is to ostensibly help me deal with and treat these issues. The rheumatologist is to address the auto-immune issues related to the disease.
// End Medical Timeline - I will update as changes occur. //
// Financial Needs //
By March 1st 2024 I was again living on my savings.
I had no idea that by the Summer of 2025 I would be barely mobile, using a cane, hardly able to speak coherently and that my cognitive functions would be so impaired that I couldn't remember what to do after opening a terminal session, code editor or anything that had defined my career for 30 years.
- I can't stand for more than 15-30 minutes without spiraling into severe pain that can put me down for hours.
- I can't type accurately as my left hand is virtually useless.
- Don't tell me your name or what you do or who you are. Make me take a picture or have you transcribe it into my notes app.
- I can't spellcheck, even with spellcheck on. It results in some fairly bizarre acid tripping Shakespearean monkey prose.
- I can't carry on a conversation or even have a simple phone call without the other other party becoming uncomfortable.
- This is all to say that I am unable to work.
In January of 2025, I applied for Social Security Disability (SSDI). This was, of course, denied in late August because my two SSDI mandated medical exams were in May or June 2025, before I saw specialists.
I immediately appealed, including the comprehensive results from this Summer and Fall, including *all* of my doctor visits and notes.
A quick note on the SSDI thing: I have been paying in to Social Security since 1985. I simply need my benefits now instead of in 10 years. The good news is I will probably die 10 years before the normal person so it all washes out, right?
Protip for you kids out there: save all you can on your own, but don't let it stop you from living a good, enjoyable life.
Note: I also reached out to the VA and was denied despite my honorable discharge because my 1988 discharge was for non-service related PTSD as a child, and the MS is not service related. An entirely different saga, I'm afraid.
I have exhausted the benevolence of my friends (a few very generous people have helped me out since first asked back in...April, I think?) and family (my youngest pays for my internet and prepaid my cellphone for a year - MintMobile).
At this point I am at the mercy of the SSDI, which could take several more months. I have sold pretty much everything I have of any value, aside from my car, which I still need to get back and forth to my doctors. I haven't been further than 30 miles from home and doctors offices since February of 2025.
I have set the goal for this at $10,000.
I know the amount seems like a lot, but it is to help cover rent, bills, copays, medications and such. Also, it is to to purchase medical/mobility aids like these: https://www.amazon.com/hz/wishlist/ls/26UZ4MC22RUL7?ref_=wl_share
A couple of notes about the medical wishlist:
- an ADA compliant toilet is 17" off the ground...that is incredibly low. I am trying to get something around 24" so I don't destroy my spine during bio breaks. My landlord has agreed to install whatever I acquire at no charge.
- I have *a* recliner, literally one chair in my apartment that I bought back in 2020. It has no real support, no heat, no massage - nothing. It's just your basic broke-ass recliner. I use it with heating pads and pillows but they're inconsistent and always slipping off.
- Insofar as mobility aids, I have canea, but man, I could really use one of those little walking things. My gait weakness is in my right leg, while my hand and arm weakness is on my left side - which makes a simple cane impossible to properly use.
- I did purchase some of those suction cup grip bars and they are insanely strong and work great, so thank you for allowing me that opportunity.
To break down my monthly expenses:
- rent: 750
- utilities: 150-200
- car and health insurance: 150
- copays, medical: 60-100 weekly now that PT is involved
- gas (car) - 20-30 monthly
- Wounded Warriors donation: 35 (I could stop but I have contributed to them monthly for several years and I would hate to let them down)
- food: 150
- miscellaneous: 50-100
Around $1500 monthly, give or take.
$10,000 will help me survive for a solid 6 months. If SSDI isn't resolved by then, well, I don't know.
// End Financial Needs //
I just need to survive until I am certain I won't become a burden to my children - who I refuse to allow to watch me disappear like my Mom did. And I think we all know that the chances of me ending up in a dark, crappy nursing facility are zero.
Feel free to share this with others, to absolutely roast me on the internet or to go about your own life in peace without guilt...we all have our own crosses to bear, I know.
Thanks for reading and, hopefully, caring.
Scott
Organizer
