Erin Cruz

Cherry Hill, NJ

Mid-Atlantic Catastrophic Illness Fund

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Help HOPE Live for Erin Cruz

Please help me be able to journey through life…My name is Erin, I have Dystonia is a rare disease which causes my feet to go 90 degrees inwards. Dystonia is a movement disorder that causes the muscles to contract. This can cause twisting motions or other movements that happen repeatedly and that aren’t under the person’s control. I am now unable to drive due to the spasms in my feet and legs, which have caused a loss of feeling in my feet.

I also have Hereditary Spastic Paraplegia (HSP) which is a rare upper motor neuron disease where my legs and feet receive mixed signals from my brain. I do have Neuropathy, Raynauds, and CRPS. The doctor explained to me that my feet are told it’s slippery when it’s not – which makes me susceptible to falling.

Have you seen the movie Take Care of Maya? That is my situation. I’ve been there and still am. Dystonia is so rare doctors end up Googling it! I’ve had Dystonia for 50 years! So many doctors never heard of it and some have a hard time believing it. I live in chronic pain, I’m constantly told my feet are too damaged. I’m NOT a candidate for surgery or a cast, or a brace/AFO’s due to my Dystonia. I have tears in my feet, along with painful clicking and popping.

Sometimes my legs drop or give out while walking. Going up/downstairs is extremely painful and if I don’t land right on my foot or when my foot is in mid air it can trigger a Dystonia spasm. I am raising funds for medium-high tech hand controls for my car as my feet no longer cooperate while driving in stop-and-go traffic. My legs are weak when pressing on the gas and brake pedals, and my arms have tremors and shake when holding the steering wheel plus I don’t have the strength in my arms anymore.

My doctors told me I needed to stop driving until I get hand controls as it’s not safe.I needed a vehicle with hand controls to drive since my narcissist spouse refuses to drive me to doctor appointments. I’m tired of always hearing if you’re rare why bother seeing a doctor they can’t help you anyways. The team of doctors I was seeing can help with symptoms, but there is no cure. I’m tired of hearing it’s my problem when I fall down/up the stairs and he doesn’t help me and just walks off. Having a vehicle I can drive I’ll be able to drive to studies, doctor appointments and hopefully get out of this toxic marriage. I’ve been blackmailed for 26 years, if I get him out of debt he’ll buy me a newer car, he’ll buy the hand control’s I need, he’ll send me to where ever I wanted for a vacation, he’ll make this house handicap accessible, but instead once I get him out of debt for the 26th time it’s just another lie and history of broken promises then he maxes out the credit cards all over again so I won’t get a dime. He controls the money, questions me about why I went to the store, what I buy, and so on, and that I’m wasting HIS hard earned money. He won’t allow us to get medical care, cuz it’s a waste of money. He’s put so much fear and BS into my now young adult kids that they NEED mental health, but he won’t allow them to go since it costs money. All my doctors have wanted me to go to DV shelter since 2014, but every time I called on I am always told to keep calling back. As of Nov 11, 2023, it was my breaking point, I can’t stay here anymore, but my car wasn’t ready. He promised me by April 2024 he would sign divorce papers, but it’s my fault I can’t get a divorce lawyer. I have no money, and I constantly blame how I am a burden, how he had to co-sign loans for me when I can’t work, how useless I am. I owe him $45,681.27 for my car and $ $31,969 for hand controls. I owe $5800 on my emergency credit card he doesn’t know I have, which paid for my driving lessons, hotel stay in Johnstown, PA to get driving lessons, doctor appointments to/from, out of pocket co-pays not covered by insurance, a storage unit, and PO Box. I’m constantly told and I have text messages to prove he tells me I need to marry a millionaire.

The only thing I NEED is a vehicle with hand controls and I’d like to build my dream modular handicap accessible house that’s all I want, besides a divorce ASAP which I can’t afford a lawyer and he makes too much money for me to seek legal aid – I’ve tried many times. I NEED a disability lawyer who will talk to me in this state As of April 2024, I learned this state doesn’t have handicap accessible DV shelters. Please help me get out of this DV situation. I’d like to get his name off Subaru of America so he can’t track me. The longer I’m in this situation the more intense and severe the Dystonia spasms last.

The pain is so unbearable as is, but when it lasts for hours and no one is around to help me. I wish someone had a heart to help me raise the funds I need to get out here. I was born with this, but my symptoms didn’t fully develop until 1992. I saw numerous neurology doctors who diagnosed me as having Charcot-Marie-Tooth disease, Congenital Musculoskeletal Syndrome, and Parkinson’s. As a military spouse from 1999 to 2010, I had to start over with new doctors each time we moved from Fairchild AFB, Lackland AFB, Kadena AB, Malmstrom AFB, and McGuire AFB. Dealing with military doctors was like getting the same treatment in the Netflix movie “Take Care of Maya” . I was constantly blown off by people accusing me of faking it. It was a long battle, but I was finally able to see civilian doctors after years of being denied referrals to specialists by military doctors. In 2015, a Neurologist ordered genetic testing and discovered that I had Hereditary Spastic Paraplegia (HSP) and Spinocerebellar Degeneration. This has been a long journey for me. Just having a rare disease is difficult, but being misunderstood is demoralizing and makes it harder. No one notices my invisible illness until I fall or lose my balance, trip on air, or walk weirdly.

To stay independent and keep supporting myself, I needed specialized adaptive driving lessons and equipment. I was referred to Brant’s Driving School in Johnstown, PA, and I’ve already started pursuing lessons there May 2023. The associated costs are not covered by insurance – even though dependable transportation allows me to access medical care and specialist visits: My driving evaluation cost $575 Lessons are $170 per hour out-of-pocket Lodging near the driving school is $99+ per night Once I can drive legally again, I will not be able to drive a regular car. Instead, I’ll use a vehicle with specialized modifications that will cost $31,969 out-of-pocket to install.

My community is raising money for the nonprofit Help Hope Live to fund uninsured medical expenses associated with my diagnoses and my dream to drive again.We fundraise for Help Hope Live in part because Help Hope Live assures fiscal accountability of funds raised and tax deductible for contributors. Contributors can be sure donations will be used to pay or reimburse medical and related expenses. Click on the Give button to make a tax-deductible donation to this fundraising campaign.For more information, please get in touch with Help Hope Live at 800.642.8399.I appreciate your support!

A little more of my rare disease history: I’ve been diagnosed off/on with:

Monoparesis – 2020 to present by PCM

Dystonia 1992 – 1998 and 2020 – present

Neuropathy 1992-1998 – 2011-present

CMT – 1992-1997, 2010-2012, 2014-present

Autoimmune disorder 1996-1998

Connective Tissue Disease 2010 to current.

Parkinson’s 2004, 2011, 2014 – 2021

Congenital Muscular Skeletal Syndrome 2013

Hereditary Spastic Paraplegia 2015 to present

Spinocerebellar Degeneration 2015-present

T2/Flair Hypersensitivity 2015

Polyneuropathy 1994, 2011-2014 2017-present

CRPS type 2 – 2015 to present

August 16, 2024

My next Neurology appointment is Aug. 28, 2024. I have 2 appointments in Patchogue, NY. It's going to be a very long stressful day. For starters it's 180 one way for me, I do leave 5 hours early due to traffic and if I get lost. lol It will be the 2nd time driving by myself there and 1st time with hand controls. First appointment is at 1030am for my Gait Analysis that's not covered by insurance which I think it's $100 or $150 for their self pay discount rate. I know I will fail it again. My gait score is 15, basically I'm a high fall risk which I've always known. My 2nd appointment at 1:30pm, copay is $37 which is my 6mo check up to finally get a refill of my medication the narcissist keeps hiding, and telling me I misplaced it which that one is Maxor mail order comes to the house and HE has to check the mail. It's going to be an allday adventure there and stuck in rush hour traffic on the way home. So happy I have hand controls now, cuz that previous time I got lost at night and I couldn't feel the pedals due to the stop/go traffic.

I'm not supposed to have stairs and I keep falling up the stairs. I haven't been eating much, because I have to eat in my bedroom and it's hard carrying dishes downstairs and holding onto both sides of the wall. Also, haven't been eating much since he's in strict control of spending. After I pay his bills I have less than $100 for food for myself and my Special Needs 20 year old and for gas for the week which he questions me constantly on what I buy and why. It's getting impossible to live here, but I can't leave my daughter behind he put so much fear in her and she doesn't comprehend due to TBI when she was 3 years old he will NOT let her get the help she needs and keeps making her quit mental health appointments. She is self harm because of him and wants to kill herself because he makes her feel stupid, since she is very forgetful. Last Oct. 2023, whatever he was telling she ended up attacking me when I tried calling 911, she had a knife to her throat, he kept calling her and texting her. She was diagnosed with PTSD in 2022. He won't let me take her to the doctors anymore, he says he'll take her when he has time, but he won't cuz we can't use HIS hard earned money. He has canceled her dentist appointments - everything keeps getting worse here. My young adult kids have to tell him everything and he tells them not to tell me anything. It's super stressful here which makes my Dystonia a million times worse.

April 26, 2024

Since getting my Subaru Outback back with adaptive equipment. The first thing I noticed was:

The seating wasn’t set up to accommodate tall people. I can no longer adjust the steering wheel it is set. Which is a hazard I can’t see the dashboard as the steering wheel blocks everything. I never know if the blinker is on/off. I can no longer see how many miles of gas I have left.

The feather light gas/break love it, but I can’t reach the blinkers. If you don’t have a good distance to let go of hand controls to use blinkers it’s a hazard.

The wipers is my other issue, in 2024 Subaru came out with automatic wipers when it rains. I’d love that setting vs trying to let go of Tri-pin or wait until a complete red light stop to turn on wipers then having to leave them on until it’s safe to turn them off again.

I had to buy an awkward armrest to rest my arm so I can put my hand in Tri-pin, but now my hand/arm is in awkward position. It really doesn’t accommodate me, but it somewhat help my arm tremors not be severe. I had to think outside of the box for my arm tremor. I had my training on a Dodge van where everything was so easy and I didn’t have the issues I’m having with my Subaru.

I’m currently trying to find some kind of light so I can see the light switch at night - I never know what my lights are set as I can’t see the dashboard due to steering wheel in the way.

So to have secondary switch that will allow me to control the following easier:

Left turn signal

Right turn signal

Horn

Dimmer

Wipers

Wash

Will cost me an additional $2,479.00 plus the cost of travel to Allentown, PA which is approximately a 2 hour drive each way. I’ve been trying to figure out how to come up with the money to drive safer even tho at times I’d really like to cut the steering wheel top part so I can see the dashboard.

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

September 12, 2023, I dropped my car off at Mobility Works and as of before Thanksgiving, they shipped my car to Independent Driving Systems in Texas since they ran into issue with the reduced steering. As of December 29, I was told the reduced steering was fixed, but they ran into issue with the shifter and they’ll update me after the New Year.

August 13, 2023

This is the adaptive equipment I need:

Reduced effort steering (RES) which they have to remove my steering column and send to Texas. I need electronic controls. I already had my driving lessons in Johnstown, PA and I had to pay for lodging $600 and lessons which cost me $3,125 ($575 Driver evaluation and $170 per hour for 15 hours/$2,550.00). Plus I had to pay gas and food the whole time there. I passed my driving lessons driving a Dodge van.

My quote thru Mobility Works:

https://www.independentdrivingsystems.com/vres $21,515.00

https://www.independentdrivingsystems.com/auxbat $1600.00

Back up battery $275.00

Labor for battery backup system $600.00

Removal of OEM steering rack and pinion $1200.00 - ships to Texas

Gear Selector Park Brake ECU https://www.independentdrivingsystems.com/gspb $2450.00 - I don't have the strength to shift to gears.

Installation stand alone gear selector $945.00

Gear shift cable assembly $210.00

Shipping to and from Texas $500.00

https://www.suregrip-handcontrols.com/pushpull $1705.00

https://www.suregrip-handcontrols.com/accessories Product Code: SH103 $160.00

https://www.suregrip-handcontrols.com/citymode $175.00

https://www.suregrip-handcontrols.com/steeringwheelattach - Tri-pin $345.00

https://www.suregrip-handcontrols.com/steeringwheelattach - Tri-pin counter weight $160.00

Total price $31,840.00

+ NMEDA Equipment Certification $129.00

Total Due Upon Delivery $31,969.00

On top of that once the controls are in, I need to have my instructor Jordan Brant to come meet in Allentown, PA to go over all my equipment and make sure I don't need any other adjustments. I will need 15 or more hours of driving with hand controls in my vehicle before I take driving test. Jordan does have to pass me driving my vehicle with hand controls before I can take the NJ driving test. For Jordan to come meet me at Mobility Works its $300 round trip for him plus $170 per hour per lesson = $2,850.00. Hoping I don't need extra lessons or other equipment since there is a big difference driving a Dodge van vs Subaru Outback.

If you haven't heard of Brant's Driving School - https://brantsdrivingschool.com/ and https://www.facebook.com/BrantsDrivingSchool/ they do have 5 satellite locations. Tim Brant has been the owner for over 30 years. His son Jordan is my driving instructor.

Going on 3 years now, trying to raise funds.

Unfortunately many people don't understand the need for hand controls or adaptive equipment when many people who have rare hidden or invisible disabilities.

Yes, I know I drag my feet when I walk, I may walk like a drunk/Ataxia, I trip on air, I can fall backwards out of the blue and not remember or know how I fell. Due to high arches my ankles roll. My feet swell up when wearing shoes or standing/walking to long. I do have Raynaud's and CRPS. I can fall down the stairs and get interrogated for hours at the ER and in the end they claim it was a mechanical fall or I tripped over something vs believing me or my diagnosis! I have ripped the home railing out of the wall on the stairs too many times. I trip and my legs almost give out going up/down my porch stairs. I do have grade 4 Osteoarthritis in my right hip and knee which causes me to drop since 2013. I do need a knee replacement, but since I have Dystonia and other rare diseases that overlap I'm NOT a candidate. My legs have given out on me when walking and so has my knees. I sway when I stand plus my back hurts to the point it feels like it's going to snap in half. I sleep on ice packs cuz my back and hips are so whacked/curved! My right legs has been the worst since 1998 - my right hip goes off track a lot. My writing has been long gone since 2013/2014. Dystonia I've had it since elementary school and got worse over time - I'm now 50 years young and the dystonia in my hands get stuck and I get the dystonia spasms and twitches in my arms when very stressed out or after being very active. The Dystonia in my feet/legs are extreme torture that can last up to 1-2 hours. I've had hand tremors since 1998'ish and arm tremors since 2010 that bother me enough when driving. My neck and shoulder hurts since I have to watch the ground when I walk. I walk close to walls. Random people have caught me falling backwards while I was walking, plus once my feet slide I do ask random people to walk me to my car if I am out. Falling is not worth walking anywhere - I'm not going to risk it. Many doctors have recommended a lightweight fold able wheelchair to attend my kids sports/events - it's been denied by insurance for 13 years! All my appeals gets denied I can only get one that's a hospital transport and weighs 45lbs! I have enough issues trying to lift the cooking pan with 2 hands! Most days I just say screw it - I'm not cooking and just air fry veggies. It sucks being Rare especially since no one understands what I go thru. I avoid so many things and places so I won't fall or have a dystonia episode. I don't want anyone seeing me die in severe pain. I wear jeans the most so people don't see my legs twitching to getting Dystonia spasms or my legs wanting to drop. I have to lay/sit down ASAP, so I won't fall.

I have limited my driving so much. Too many days I can't even bear weight on my feet to stand, morning's are the hardest or going from laying to sitting to standing. My goal was to raise funds vs keep getting in debt with medical bills/needs. Ja'Jandra may need her 3rd elbow surgery which is non network and they don't accept insurance, the office visits are $600+ cost of x-rays, scans, surgery since her 2 doctors are in NYC thru HSS - her right arm has severe arm tremors worse than her left arm. I currently pay for my medical reflexology/acupressure massages whenever I can afford it or when the pain is too much which is $63 for 60 minutes - I can be pain free for 2 weeks, medical pedicure every 6 weeks $55, getting my brows waxed every 6 weeks $22, my gait analysis every 6 month is $65 in Patchogue, NY. NeuroRehab will forever be denied thru insurance. PT makes ALL my issues worse plus I only get 2-4 visits of PT per year! It's safer NOT to go there less stressful! My back has gone out during evaluation at PT, plus they don't believe the things I can't and never have been able to do like pick up marbles or anything with my toes. I can't even curl my toes or walk on my tiptoes - never have. I'll be starting Acupuncture on Monday, insurance will only approve 6 visits! According to my consult I'll need to pay for the additional 44 visits @ $85 per visit. Acupuncture, Cupping, and Reflexology massages helped my CRPS and other issues back in the 1990's. I refuse pain meds and all specialists only send me to PT now vs treating or letting me get MRI's for my tears in my feet, knees, arms, and shoulders.

I seriously can't put this off any longer.

August 12, 2023

Apparently the NDI (https://www.nationaldisabilityinstitute.org/assistive-technology-loans/) - this place is basically 3rd party. You have to go thru Laurie 1st and she decides if she wants to pass your application to the bank or not! Even tho you're NOT pre-qualified after you submit the application. OK she's a financial counselor who basically turns people away. I did have fun arguing with her tho, I used to be a financial advisor and budget counselor thru the military as a volunteer. If you have a balance on any card that shows up on your credit report even tho it's paid off monthly she'll still give you a long lecture no matter what and accuses you of living past your means and all. Like I'm applying for a loan not needing to credit counseling. Since my kids were 16 years old they have been authorized users on my credit cards and they have a credit score above 830 so what's the issue? Right a balance showed up on the credit report for $33 gas charge! I definitely sinned there I didn't pay it fast enough so it wouldn't show up my credit report! The next day when you talk to her she expects your auto insurance to have a 2nd lien holder of Spring Bank on your insurance card, plus you need the exact amount of everything on the policy to prove to the Spring Bank of being fully be covered for $79,919 - cost of car plus my equipment. I'd needed a new auto quote for my vehicle with the equipment which it's medical equipment I need. Trying to explain that to her during a 3 way call with USAA. I confirmed several times medical equipment needed for a disabled person is covered in full. USAA insurance had to fax in writing information to prove that. Then she told me I need to send my car title to Spring Bank so they can put 2nd lien on my vehicle. Which NO bank will do that! While she claimed banks do this all the time. Here I'm not even pre-approved for this loan yet and on top of that she told me I needed to send her a voided check! Claimed she has to send my package to the bank once she pre-approves me and then the bank will decide. Getting a loan shouldn't be this hard! Normal banks don't need to see every single statement you pay monthly/yearly or question you why your electric bills change during winter months!

My application for a loan never made it to the bank. Instead, I was told to trade in my vehicle since its depreciated so much since 2022! Plus, according to her the resale value would be zero, cuz no one will ever be able to use it since it's modified to what I need. For starters my vehicle will go back to OEM so anyone can drive it. If I get a new car I can move the same equipment to my new car and still sell or trade in my car with no issue. I can sell my car with the equipment if someone has the same script as I have or if they need other modifications added they'll be able to save money and add the other modifications they need. I've already done my homework on this last year. While this person was on my nerves telling me to trade my current vehicle to Mobility Works and buy one of their conversion vehicles which I don't need and go thru them for a loan. I don't need a wheelchair conversion van/SUV either way I'd still have to add my equipment and pay higher interest rate. Seriously a loan shouldn't be this complicated! I did a fundraiser to avoid taking out a person loan. Since my legs keep getting worse and I really don't want to risk driving unless I have to go to doctor appointments I'm running low on options.

They claim NDI helps individuals with disabilities receive loans to afford assistive technology. These loans can be used to modify homes or cars, or to purchase hearing aids, communication devices, wheelchairs. These types of assistive technology can be expensive to purchase. Our Assistive Technology (AT) Loan Program provides affordable loans of $500 to $30,000 to residents of New Jersey and New York. Loans are available with as low as 4-6% Fixed Interest. MORE ABOUT THE PROGRAM -

NDI received funding for the program, which is one of 48 nationally, from the U.S. Department of Education. The loans range from $500 to $30,000 and are available to residents of New Jersey and New York. NDI buys down the interest rate, making it possible for approved loan applicants to obtain loans at four percent interest, a significant cost savings for borrowers. NDI also guarantees the loans, allowing for more favorable lending terms.

National Disability Institute takes calls regarding requests for the assistive technology loans. Referrals for the blending and braiding of funds are also provided which, in many cases, further reduces costs for those who need AT.

Individuals who apply for a loan are required to submit documentation, including recent bills and sources of income, to National Disability Institute. We prequalify applicants and send the information to New Community Federal Credit Union (NCFCU), Bryn Mawr Trust (BMT) or Spring Bank for final approval and loan service.

Their disability community are NOT up to date with hand controls and after 3 months of dealing with them, I'd never recommend them to anyone! My Dystonia has been off the wall being stressed out all day. I need medium high tech driving equipment for my car which this lady claimed all hand controls cost less than $7k! I submitted 100 pages of all the documents they requested from June to Aug 11, 2023. I've met people who have over $80k to $185K of adaptive equipment in their vehicles.

All day Friday, I spent the day calling for personal loans and rates. I'm NOT doing any hard/soft credit checks just needed an idea for credit score of 850!

Discover $40k 8.99% $643 84 months

Discover $30K 8.99% $483 84 months

USAA $35k 12.89% $671 84 months

Amex $35k 6.98% $866 48 months!

NDI/Spring Bank $34,819 $353 4% 120 months

Mobility Works loan - I'll find out this week on my options with them.

July 6, 2023

I received my quote from Mobility Works - $31,969.00. Once the equipment is installed, my instructor has to meet me at Mobility Works to make sure everything is correct. His travel fee to come meet me at Mobility Works roundtrip is $300 plus it's recommended I do 15 hours of driving in my car with the hand controls and that's $170 per hour. Total cost is $34,819.

I've been busy trying to find alternative funding since I can't work and this state is whacked in trying to get SSDI. They have this imaginary law that I can't find that states when you move here you have to work in the state of NJ for 2 years before you can apply for SSDI. Moved here in 2010, my civilian doctor submitted paperwork to Nelnet (TPD) and SSDI in 2011. All my previous work prior to moving here means nothing! I had a failed a Brostrom Gould ankle surgery (to reconstruct the torn lateral ligamentous complex in order to obtain a stable ankle joint) - thanks to the Orthopedic doctor not believing I have Dystonia, it was a failed surgery. I died in pain for 8 months to see Penn Medicine. Due to Dystonia, my feet are too damaged for surgery and the previous doctor should have never done the surgery and no one will do ever surgery on me. Both feet have no motor sensory and I have 0/5 dorsiflexion. I can walk barefoot on my rocky driveway and not feel anything. My right knee has grade 4 Osteoarthritis, and I'm jealous of everyone who can get knee replacement, as I can't due to being high fall risk and my Dystonia spasms. I've seen over 110 Orthopedic/Podiatrist who keep telling me the same thing.

I've contacted the Congressman who took over 3 years to respond to my request for help/assistance, but his intern told me I need to contact SJ Legal Services for a disability lawyer. I did that, but was told it's only for low income families. In order to qualify, I'd have to get divorced. Where do I sign up? According to 47 divorce lawyers, I have to working or getting SSDI.

I've contacted https://www.nationaldisabilityinstitute.org/financial-wellness/assistive-technology-loan-program/ which I was told they had to be my last option as I have to reach out to everyone on this list for assistance first: https://www.nationaldisabilityinstitute.org/wp-content/uploads/2019/01/at-loan-guide-nj.pdf - I'm NOT under 18 or over 65, I'm NOT military just a military spouse of course there are no benefits. I fall through NJ cracks of getting any kind of assistance. So my only option is to take loans out and that's why I tried this fundraiser, it seemed better than a GoFundMe, plus I see HelpHopeLive yearly at Abilities Expo.

I really need to see my doctor in NY, I've been out of my controlled medication for my Dystonia since May, I'm beyond desperate to get to NY to calm my Dystonia down. Every 6 months, I am supposed to see my Neurologist and get a new gait analysis - I was supposed to be there in April. Once I get hand controls I'll be able to see doctors at HSS at discounted rate in NY for my back, hips, knees, and ankles - hope I can finally get surgery vs being blown off and discharged. I'm tired of constantly being in pain. I want to have a life again. My 19-year-old will finally be able to see her doctors as well that see her for her TBI and deformed elbow. I miss driving and going on random road trips, doing studies for rare diseases., and future rancher house looking. These hand controls have been put off way too long, and I'm out of options.

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

I've been needing a medical pedicure and my toenails were driving me to the point they need to be done. Of course, it's really hard to find a place that does medical pedicures. I was going to a place for almost 2 years, but then haven't heard back. The past few days I tried getting a pedicure, I only wanted my toenails cut. 2 places wouldn't see me cuz of the bruises on my ankles, except 1 place today. I'm really NOT one to paint my toenails plus she wanted me to wear flip-flops. I rather walk barefoot than wear shoes.

I kept getting mild Dystonia spasms and leg twitches, I really didn't feel anything the lady was doing. I wanted hot water which if it's over my feet I can feel it, but it was cold water. For the foot/leg massage, I asked if she could go deep, and hard pressure. It was so soft, I barely felt anything. The hot stones and hot towel I didn't feel anything. For $85 just to get toenails clipped - I've never spent that much for a medical pedicure. That was definitely once in a lifetime thing.

I could have gotten a 2.5-hour body and foot reflexology with hot stone massage for $85 and that includes tip which I usually do when my legs are very spastic, my back pain is bad, and I go there to fight pain with pain. After massage I can see how bad my legs are - weak wise, I’m usually all over the place with Ataxia.

After pedicure today, my shoes felt too big. I had to really concentrate on walking straight. The bottom of my feet still look the same as when I went in. That was my 1st pedicure and my last definitely NOT worth $85. Medical pedicures are usually $50 or less and includes massage. The lady kept scraping my bruised ankle thinking it was dry skin, it’s actually a messed up ankle from Dystonia spasms. No doctor will touch my feet at least the bruise is shiny now.

May 9, 2023

After 13 years of dealing with USFHP (military insurance) and fighting to see NeuroRehab or PM&R which WAS NOT a covered benefit.

As of April 1, 2023, PM&R is now a covered benefit.

I waited over a month to see this provider and she ordered me a lightweight foldable wheelchair which will be denied just like all the other 70+ times doctors gave me script and tried to order me a lightweight foldable wheelchair. I was issued 1 in 2013, but it weighs 51lbs and isn’t lightweight or foldable it’s a hospital transport. I ended up giving that one away to someone who needed it.

This new doctor wanted to order me a power wheelchair since my last fall I have 3 tears in my shoulder and my bicep/elbow I’m still fighting for MRI. So many things I can no longer do with my left arm. She’s also sending me to PT for gait assistance needing bilateral AFO’s. My issue with that the only DME provider I can use, never heard of my rare diseases and the only provider I can use made me plastic ones where I damaged during Dystonia spasm plus they make me fall more often. I know my gait score is 15. I’m a high fall risk.

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

As of March 1, 2023, I've been in contact with Brant's Driving School, I spoke with Amanda and went over everything it's still $170 per hour and if I go over there to them it's cheaper in the long run vs paying $40 per hour for them to travel here plus my hourly $170 rate. Staying over there I'm looking at lodging and food, plus the $170 per hour for driving lessons.

Since I'm self pay is why I have to raise funds.

February 17, 2023

Feb 14, 2023, I had a driving lesson that morning minutes which I’ve been driving 1.5 hours each way. I arrived early and my instructor had several cancellations so he wanted me to watch him drive using the hand controls. As soon as we got down the hill and stopped which is a serious blind spot. He always told me NOT to turn left until it’s completely clear, no cars. It wasn’t clear and he went to turn left and my side (passenger) got hit. I’m glad I wasn’t driving, but I would have never turned until it was totally clear - no cars. To me that’s what I call instant suicide turn. Their van is most likely totaled. And I have to get lessons elsewhere he recommended Brant’s Driving School which is in Johnson, PA. I basically have to start over $575 for evaluation, $170 for each lesson, and lodging for up to 3 weeks. It looks like I’ll be losing my $1,000 rebate from Subaru since it’s been 1 year to get hand controls installed.

February 9, 2023

Oct. 13, 2022, I received quotes from Mobility Works which were $30k and after talking to ColleBuilt and IDS the manufacturing company's told me to see if a horizontal wheel would be better for me in the long run vs paying $30k now and then having to change it to horizontal wheel in the next few years.

Oct. 30, 2022, I fell down the stairs and injured my left arm and left hip/leg and had to stop my lessons.

Dec. 21, 2022, I started with horizontal wheel it was less strain on my arm and worked out better since before I was practicing with tri-pin on steering wheel at 2 o'clock and my arm tremors would start after 30 minutes and my arm got tired.

Feb 7, 2023, I have been learning with the horizontal steering wheel with a knob and currently been working on my left hand with the gas/brake. The push/rock causes my intentional hand tremors, but pulling back for gas causes arm tremors. Each lesson my instructor thinks outside the box in ways to accommodate. Current setup with EMC I'm looking at close to $70k according to one estimated quote I received.

September 19, 2022

Moss Rehab called and I'm next woo hoo, unfortunately I had to reschedule several times due to kids school, their work schedules and not having a ride to Jenkintown, PA. Looks like I have to reschedule again for my driving evaluation with the van with high tech controls which I've been waiting for since March 2022. Uber is $85 one way which might be my only choice so I won't have to keep depending on a driver.

July 20, 2022

- I received my car early which I wasn't prepared for, but I've learned my arms are weaker than in 2015. I was able to get medical windshield and passenger tint on my new vehicle for my UCTD.

- I had back surgery June 23, 2022, removed my dead spinal cord stimulator which made my dystonia a million times worse. I did let it die in 2018, after I learned the pain management doctor used me as a patient project he was looking for a cure for spasticity. It helped at first, but after 3 months it had a mind of its own and would cause my dystonia to last over 1 hour and he told me NOT to go to the ER! After I changed doctors I learned from the Medtronic rep and then I let it die.

- I found a doctor recently who removed it.

- This new pain doctor wants me back in AFO's/KAFO's, but I fall more often in them and of course everyone I get referred to is NOT on network or the type they want me in I've had in the past and dystonia spasms broke the hinges.

- This pain doctor also wants me in a back brace. I have a history of falling on my back as is. It’s not going to save me from falling.

- I'm supposed to see my Neurology doctor in Patchogue, NY in Aug, I hope I have a ride and the doctor has a plan to help me.

- The past 2 years my swaying is worse, standing or sitting too long my back feels like it's going to snap. I have been falling after I stand up from sitting or laying down.

- I fell 3 times the other morning, I had balance when I stood up took a step then fell forward. I was supposed to wake my daughter up for volleyball practice, but it took me over 40 minutes to get out of my bedroom and crawl to her room.

- I'm getting scared. I have no one to help me, no support or anything. I need to get to NY.