I’m Living with a Rare Neurological Disorder and I Need Help to Drive Again and Escape Abuse

February 1, 2024

I received my vehicle back from Mobility Works January 25, 2024. I’m currently in major debt, since apparently people think this is covered by insurance which it’s NOT. This is a major out of pocket medical expense which I can’t afford.

I’m currently trying to sell my Japanese massage chair just so I can afford this vehicle with hand controls. I have it listed in Facebook marketplace and EBay. I’m trying to find other things to sell since apparently no one donates to fundraisers for medical needs.

January 16, 2024

Craig from Mobility Works called me yesterday to schedule my fitting which is January 19, 2024.

December 31, 2023

[Vehicle Modification Journey: The Long Wait and Unexpected Setbacks]

On September 12, 2023, I dropped off my Subaru at MobilityWorks to have adaptive hand controls installed so I could drive safely again due to my neurological condition, Hereditary Spastic Paraplegia (HSP) and Dystonia.

Unfortunately, things didn’t go as planned.

By Thanksgiving, I was informed that my car had to be shipped to Independent Driving Systems in Texas because they ran into unexpected complications with the reduced-effort steering system. That was just the beginning.

On December 29, 2023, they told me the steering issue was finally resolved—but they had now run into another problem with the shifter, and wouldn’t be able to provide any updates until after the New Year.

These delays stretched my timeline by months, made it harder to access my medical appointments, and increased my financial burden—especially with no help from insurance or state assistance. I’ve had to shoulder this out-of-pocket while already trying to escape a harmful living situation and support my special-needs daughter.

Despite all this, I finally got my vehicle back on January 25, 2024—but it still needs additional modifications to be fully functional and safe for my needs. I’m deeply grateful to those who have supported me so far, and I’m still working hard to raise the rest of the funds to complete this journey.

Your support truly means the world to me.

With thanks,

Erin

August 13, 2023

To safely drive again, I require specialized adaptive vehicle equipment, including:

Reduced Effort Steering (RES): My steering column must be removed and shipped to Texas for modification.

Electronic driving controls

Push/pull hand controls with tri-pin and counterweight

Custom gear selector and park brake system

I completed my adaptive driver’s training in Johnstown, PA, which cost me $3,125 in total:

$575 for the evaluation

$2,550 for 15 hours of lessons ($170/hour) I also paid $600 for lodging, plus all gas and food while away. I passed my training using a Dodge van, which handled very differently from my current vehicle—a Subaru Outback.

My quote from Mobility Works:

Reduced Effort Steering: VRES – $21,515

Auxiliary Battery System: AUXBAT – $1,600

Backup Battery – $275

Labor for Battery Installation – $600

Steering Rack Removal & Shipping – $1,200

Gear Selector & Park Brake ECU: GSPB – $2,450

Standalone Gear Selector Install – $945

Gear Shift Cable Assembly – $210

Roundtrip Shipping to Texas – $500

Hand Controls: SureGrip Push/Pull – $1,705

Switch Control Button: SH103 – $160

City Mode Steering Add-On – $175

Tri-Pin Grip: SureGrip – $345

Tri-Pin Counterweight – $160

NMEDA Equipment Certification – $129

Total Cost Due Upon Delivery: $31,969

Once installation is complete, I’m required to undergo an additional 15 hours of training in my vehicle with the new controls before I can take the NJ driving test. My instructor, Jordan Brant (from Brant’s Driving School), must travel to Allentown, PA for this—his fee is $300 for travel and $170/hour for training, totaling $2,850

Why This Matters:

I’ve been fighting for nearly three years to get mobile again. Sadly, many people don’t understand the necessity of adaptive driving equipment or what it’s like to live with rare, invisible disabilities.

I live with a long list of disabling conditions—Hereditary Spastic Paraparesis, CRPS, Dystonia, Raynaud’s, severe osteoarthritis, and more—that affect my ability to walk, stand, or drive safely without adaptations. I experience:

Severe tremors and spasms in my hands and feet

Frequent falls and balance issues

Muscle weakness, swelling, and unpredictable pain

Limited fine motor control and grip strength

Despite clear medical necessity, most of my needs are not covered by insurance. My wheelchair requests have been denied for over 13 years. I even cook less because I struggle to lift pans. Acupuncture, reflexology, and custom medical foot care are some of the few things that give relief—again, paid entirely out of pocket. I’m maxing out credit cards with 33.99% interest.

Even more heartbreaking, my daughter Ja’Jandra may require her third elbow surgery. Her condition causes severe tremors in her right arm, and her NYC-based specialists don’t take insurance. Office visits are $600+, not including imaging or surgical costs.

I’m doing everything I can—selling items like my Japanese massage chair on Facebook Marketplace and eBay—because fundraisers have brought in very little. But I can’t keep taking on debt for medical needs no one helps cover.

I can’t afford to wait any longer. Every day I’m without full driving capability, I risk injury, isolation, and worsening health.

If you’ve read this far—thank you for understanding just a fraction of what it takes to survive with rare, invisible disabilities.

August 12, 2023

NDI Assistive Technology Loan Experience:

I explored the Assistive Technology (AT) Loan Program through the National Disability Institute (NDI), which claims to help individuals with disabilities secure affordable loans (from $500 to $30,000) to purchase assistive technology such as home or vehicle modifications. The loans are funded by the U.S. Department of Education, with interest rates as low as 4–6%, and are serviced by lenders such as New Community Federal Credit Union (NCFCU), Bryn Mawr Trust (BMT), or Spring Bank. Sounds good on paper—until you apply.

In reality, your loan application doesn’t go directly to the bank. Instead, you must first go through Laurie, a financial counselor at NDI, who decides whether to pre-qualify you and pass your package along. That alone raised red flags.

Although I applied for a loan—not credit counseling—I was lectured about a $33 gas charge that showed on my credit report (despite being paid off monthly). I’ve worked as a financial advisor and budget counselor in the military, so I understand how credit reporting works. My children—who’ve been authorized users on my credit cards since they were 16—have credit scores above 830. Yet none of that seemed to matter.

Then came a list of confusing and excessive requirements:

I was told I must list Spring Bank as a second lienholder on my car insurance, with proof of full coverage for the entire value of the car plus equipment ($79,919 total).

USAA had to fax confirmation that my adaptive equipment (classified as medical necessity) was fully covered.

I was told to mail my car title to Spring Bank to add a second lien—something most banks do not require or accept.

I had to provide a voided check, detailed income documentation, and every monthly or annual bill.

Despite all this, I wasn’t even pre-approved. The application never made it to a bank.

Laurie ultimately suggested I trade in my current vehicle—claiming its resale value would be zero due to modifications—and finance a MobilityWorks conversion van (which I don’t need). She insisted hand controls “shouldn’t cost more than $7,000,” ignoring the actual cost of my quote: over $31,000, which includes advanced equipment like Reduced Effort Steering and electronic gear selectors.

I’ve done my research. My equipment is transferable to a new vehicle if I ever choose to upgrade, and my car can be returned to OEM settings. Adaptive vehicles, when sold correctly, do retain resale value—especially if the buyer has similar needs.

After submitting over 100 pages of documents between June and August 2023, I received nothing but stress, misinformation, and delay. The disability community deserves access to up-to-date knowledge about assistive technology—not outdated assumptions and patronizing advice. After three months of trying to get through this process, I wouldn’t recommend NDI or Spring Bank to anyone.

Loan Rate Comparison (June 2025):

Here’s what I found on my own after a full day of research, without triggering hard/soft credit pulls:

Discover $40,000 @ 8.99% – $643/month for 84 months $30,000 @ 8.99% – $483/month for 84 months

USAA $35,000 @ 12.89% – $671/month for 84 months

American Express $35,000 @ 6.98% – $866/month for 48 months

NDI/Spring Bank (if approved) $34,819 @ 4% – $353/month for 120 months

MobilityWorks Financing Awaiting loan options this week

Why This Matters:

I launched a fundraiser to avoid predatory loans and stay out of further debt. My legs are deteriorating, and I avoid driving unless it’s for medical care. Getting access to safe, medically necessary equipment should not involve being interrogated, misinformed, or shamed for having a $33 gas charge on your report. People with disabilities deserve better.

July 6, 2023

Why I’m Fundraising for Vehicle Modifications and Adaptive Driving Support

I’m currently fundraising to raise $34,819 to install medically necessary adaptive driving equipment in my vehicle and complete the final steps to safely return to the road.

$31,969.00 – Quote from Mobility Works for medium-high tech hand controls and adaptive equipment.

$300.00 – My certified driving instructor’s travel fee to meet me at the installation center.

$2,550.00 – 15 hours of required follow-up adaptive driving lessons in my car at $170/hr to complete final certification.

Without these modifications, I can’t drive safely—and without safe transportation, I can’t access critical medical care or help care for my daughter, who has special needs due to a traumatic brain injury and orthopedic issues.

Why This Matters So Much Right Now

My medical conditions include:

Dystonia, which causes painful and unpredictable muscle spasms,

CRPS (Complex Regional Pain Syndrome),

HSP (Hereditary Spastic Paraparesis),

Severe Osteoarthritis (Grade 4 in my right knee),

Loss of motor sensory in both feet, and

Raynaud’s disease, making winter even more disabling.

I’ve already had a failed Brostrom-Gould ankle surgery, due to misdiagnosis and poor surgical judgment. After years of fighting, no orthopedic surgeon will operate on my legs again due to risk of permanent harm from my neurological conditions. I’ve lost dorsiflexion completely—meaning I can’t lift my feet—and have zero sensation in both feet.

Despite all this, I’ve been denied SSDI (Social Security Disability Insurance) repeatedly. I was told I “need to work in New Jersey for two years” to qualify—an alleged rule I cannot find documented anywhere. I moved here in 2010, and my military civilian doctor submitted paperwork for SSDI and Total & Permanent Disability (TPD) forgiveness back in 2011.

Since then:

I’ve submitted over 100 pages of documentation to try to qualify for the NDI Assistive Technology Loan Program—my application never even made it to a bank.

I’ve been passed around between 47 divorce lawyers, state legal aid, and my Congressman, whose intern told me my only option was to get divorced to qualify for help.

I’ve been living in pain, unable to drive, missing crucial specialist appointments, and off my Dystonia medication since May.

This is not sustainable.

Why This Fundraiser is Urgent

This isn’t just about driving. These modifications will allow me to:

Finally see my specialist neurologist in NY, who manages my Dystonia and prescribes my controlled meds.

Get a new gait analysis, as I’ve missed two required follow-ups.

Access long-overdue orthopedic consults at Hospital for Special Surgery (HSS) in NY.

Give my daughter transportation to her care team for her traumatic brain injury and deformed elbow, which still needs treatment.

Get back to participating in clinical research studies and medical trials for rare diseases—something I used to do regularly to help others like me.

May 25, 2023

As of today Brant’s Driving School submitted my script to Mobility Works. Now I wait for a quote.

May 23, 2023

Here are some details about my driving plans and lessons!

Since my lessons are in PA, once equipment is installed, I have to pay $170 per hour for the team to drive to MobilityWorks to inspect/make sure everything on the script is correct and at the right settings or if I need adjustments or to add anything. I was practicing on a Dodge where it had lights and wipers on the left, and I drive a Subaru which the turn signals and lights are on left but right side are the wipers.

He'll be adding push button vs my current gear shift - I don't have the strength to pull it down or push it up (Drive, Park, Reverse) on my Subaru which will add more cost. That's a big issue I've had since I bought it.

On the Dodge, it had an armrest for my arm while my hand was using a tri-pin. I don't have an armrest on my Subaru so they might have to adapt one for me. My instructor won't know until after the equipment is installed.

Once all the equipment is added to my car, my instructor has to come to NJ and verify the equipment and settings. If something needs to be added, the cost goes up for equipment and I have to pay him $170 per hour. If I need a refresher lesson since I was driving a Dodge during my driving lessons and I'll testing on my Subaru once all equipment is installed: I still have to pay $170 per hour. I already told them I want a refresher lesson, especially while he will be here for my final checkout with Mobility Works.

Once everything is cleared, I can take my New Jersey driving test. However, once I pass the test, my driver's license is coded differently, so I can no longer drive a normal car.

May 13, 2023

Medical Pedicures & Disability Reality: What $85 Bought Me

I finally caved and got a medical pedicure—not because I wanted pampering, but because my toenails were driving me over the edge. With Dystonia, Ataxia, and neuropathy, it’s not safe or easy to cut my own toenails, and finding a place that understands medical needs is nearly impossible.

After days of trying:

Two places refused to see me because of visible bruising on my ankles (which is from Dystonia spasms, not injury).

One finally agreed today—and charged $85 for just toenail clipping.

Let me be clear: this wasn’t some luxe spa treatment. I asked for:

Hot water: I got cold water instead.

Hard pressure massage: She barely touched me. I asked for deep tissue because I need strong sensory input to calm spasms—but got a feather-light rub instead.

No polish: She still wanted me to wear flip-flops, which I can’t safely walk in.

Hot stones & towels: I couldn’t feel them at all due to nerve damage.

Ankle bruising: She scraped it like dry skin, which made it worse.

For $85, nothing improved—my feet looked the same when I left, and I had to consciously think about walking straight because my legs felt thrown off from how weak they are. My shoes even felt too big.

Honestly? I’d rather go back to my $85 full-body reflexology session with hot stones and deep foot massage that at least helps with spasticity and pain. At least then I know what I’m getting, and I leave feeling like something actually worked.

This was my first and last pedicure like this.

Medical care—even basic hygiene support—shouldn’t be so hard, so expensive, or so misunderstood for people with neurological disorders and mobility challenges.

May 9, 2023

13 Years of Being Ignored by Military Insurance—Until Now

After 13 years of fighting with USFHP (military insurance), I was finally allowed to see a PM&R (Physical Medicine & Rehabilitation) specialist—something that was not even a covered benefit until April 1, 2023.

For over a decade:

I was denied access to NeuroRehab and PM&R, despite multiple conditions that clearly require it.

Over 70 doctors have written prescriptions for a lightweight, foldable wheelchair—and every one of them has been denied.

In 2013, I was issued a 51-pound non-folding transport wheelchair—completely useless for daily independence. I eventually gave it away to someone who needed it more than I could even use it.

Now that PM&R is finally covered:

This new doctor immediately recognized my need and ordered both a lightweight wheelchair and a power chair.

The power chair is due to my latest fall, which resulted in 3 tears in my shoulder, bicep, and elbow. I still can’t get an MRI approved to assess the damage fully.

I’ve lost function in my left arm, which affects my ability to perform daily activities safely or independently.

She’s also ordered gait therapy and bilateral AFOs (ankle-foot orthoses) because I’m a high fall risk with a gait score of 15.

But here’s the problem:

The only DME provider I’m allowed to use under my plan doesn’t know my rare neurological conditions and has repeatedly fabricated braces that actually increase my risk of falling.

The plastic AFOs they made broke during a Dystonia spasm, and they’ve never offered a suitable replacement.

Once again, I expect the wheelchair prescription will be denied—just like all the others.

I’m not asking for luxury. I’m asking for the basic tools to live safely and preserve my body.

This isn’t about comfort—this is about preventing more falls, dislocations, and surgeries I’ll never recover from. Every delay causes more permanent damage.

April 16, 2023

Brant's Driving School called me last week and scheduled me for 2 weeks, Monday-Friday from 10am to 4pm.

Evaluation is $575

Lessons are $170 per hour

The hardest part was finding lodging for those 2 weeks for a mobility room with roll-in shower.

March 26, 2023

Thank you to all who have donated!

March 3, 2023

Driving Lessons with Brant’s Driving School – Cost Breakdown

Since March 1, 2023, I’ve been in contact with Brant’s Driving School to begin training with adaptive driving equipment. I’ve spoken with Amanda, who helped outline the full costs and logistics involved.

Driving lessons are $170 per hour

If instructors travel to me, it adds $40/hour in travel fees

To keep costs lower, I plan to travel to them directly, which eliminates travel fees but adds:

Lodging expenses

Meals

And extended time away from home and caregiving duties

Why I’m Self-Pay:

Because my adaptive equipment and specialized training are not covered by insurance, I have no choice but to self-fund all of this, which is why I’ve started fundraising through Help Hope Live.

In total, between the cost of the equipment, driving lessons, instructor’s travel for final fitting, and temporary relocation, I am facing a total cost of $34,819.

Every dollar I raise goes directly toward giving me the freedom to drive again safely, attend medical appointments, and care for my daughter.

February 17, 2023

Driving Incident and Setback – February 14, 2023

On February 14, 2023, I traveled 1.5 hours each way for an adaptive driving lesson. I arrived early, and since my instructor had a cancellation, he asked me to observe his driving using the hand controls.

Unfortunately, while I was riding as a passenger, we were involved in a car accident. He attempted to turn left at a known blind spot, against his own training advice, and my side of the vehicle was struck. I’m grateful I wasn’t the one driving—because I never would have made that turn. I always wait until the road is completely clear.

That accident totaled the driving school’s van, ending my lessons with that provider. As a result, I’ve had to start over completely, now training with Brant’s Driving School in Johnson, PA, which comes with new costs:

$575 driving evaluation

$170 per hour for each lesson

Lodging and meals for up to 3 weeks while I train out-of-town

Because it has now been over a year since purchasing my vehicle, I’ve also lost my $1,000 Subaru rebate, which was contingent on having hand controls installed within a year of purchase—a deadline delayed by factors completely beyond my control.

February 9, 2023

Adaptive Driving Equipment Timeline and Setback Summary

October 13, 2022 I received initial quotes from Mobility Works for adaptive driving equipment totaling $30,000. After reviewing the specs and consulting directly with ColleBuilt and IDS (the manufacturing companies), they advised that I consider a horizontal steering wheel system, which may better meet my long-term needs and potentially prevent the need for future costly upgrades.

October 30, 2022 I experienced a serious fall down the stairs, injuring my left arm, hip, and leg. This forced me to temporarily stop my driving lessons and delay progress on equipment setup.

December 21, 2022 I resumed training with a horizontal steering wheel system. The new configuration immediately reduced strain on my arm and was a better match for my dystonia, intentional tremors, and fatigue. Previously, I was using a tri-pin steering wheel at 2 o’clock, but after about 30 minutes, my arm would begin to tremor and fatigue significantly.

February 7, 2023 I began training using a horizontal steering wheel with a knob, focusing on using my left hand for gas and brake.

The push/rock mechanism triggers my intentional tremors.

Pulling back for gas induces additional arm spasms. My instructor has continuously adapted lesson plans and techniques to accommodate my complex neurological challenges.

After months of evaluation, equipment trials, and provider consultations, the custom EMC driving system—which includes a horizontal steering wheel and electronic controls—is projected to cost approximately $70,000 based on the latest estimates. This setup is essential for my safety, independence, and ability to transport myself and my daughter to ongoing medical appointments.

September 19, 2022

Driving Evaluation with Moss Rehab – Long Awaited Milestone

March 2022 – Present I’ve been on the waitlist with Moss Rehab in Jenkintown, PA for a driving evaluation using high-tech controls. This evaluation is crucial to finalize the right adaptive equipment setup for my vehicle.

June 2025 Update Moss Rehab finally called—I’m next in line! Unfortunately, I’ve had to reschedule multiple times due to:

Conflicts with my kids’ school and work schedules

Not having a consistent or accessible ride to the facility

I’m now looking at using Uber, which is $85 one way, as my best option to avoid further delays and continue the process without being fully dependent on others. Even though it’s expensive, this evaluation is critical in determining what assistive technology I need to drive safely and regain my independence.

July 20, 2022

Why I’m Still Fighting for My Mobility and Medical Access

Car Delivered Early – Unexpected & Overwhelming I recently received my vehicle, earlier than expected, and realized my arm strength has significantly decreased since 2015. Although I was able to get medical tint for my UCTD, I still don’t have the adaptive controls installed, which I need to drive safely.

Spinal Cord Stimulator Complication In June 2022, I had back surgery to remove a dead spinal cord stimulator. I let it die in 2018 after learning the implant was part of an unauthorized project by a pain doctor who used me to test theories on spasticity without informed consent. It ended up worsening my Dystonia severely. It took years, but I finally found a new pain doctor who removed it.

Bracing, Falls, and Broken Equipment My new pain doctor wants me back in AFOs/KAFOs, but they’ve never helped me—they’ve made me fall more often. I’ve broken past braces during Dystonia spasms, and most DME providers recommended are out-of-network or make braces that simply don’t work for my conditions. He also prescribed a back brace, but with my fall history, it won’t prevent injury and may even worsen my instability.

Neurology Visit Critical – Patchogue, NY I’m supposed to see my neurologist in August, but I don’t have reliable transportation to get there. This visit is vital: my condition is worsening, and I desperately need a plan of care.

Frequent Falls and Functional Decline My balance has worsened drastically. If I sit or stand too long, it feels like my back is going to snap. Just recently, I fell three times in a row trying to get up and walk to my daughter’s room. It took me over 40 minutes crawling on the floor just to wake her up for volleyball. These aren’t rare incidents anymore—they’re becoming daily struggles. And I’m scared.