Ok Angels,
I don't think I've talked about this yet.
Last Friday when I was parking my car in a parking garage, I hit the accelerator instead of the brake and slammed into the back wall.
The car is ok, but will need body work, of course.
The question is: Is this from my Peripheral Neuropathy? Is it because I didn't KNOW where my foot was because I can't feel it?
Or is this the result of inattention, a 'mistake', like running a stop sign?
What difference does it make? a LOT to me.
An attention mistake is truly an accident. And they happen.
But not knowing where my foot is when I'm driving is a recipe for plowing down crowds of people in an intersection.
Since the accident, on Friday, I'm not driving. I'm calling for a referral to a neurologist to have another Nerve Conduction Study, and other tests to determine if I can drive a regular car.
If my neuropathy is severe enough to prevent my driving with foot brake and accelerator, we will have the controls put on the steering wheel for my car. I don't have a problem with my hands and arms.
I'm also going to ask for another EEG. The neurologist who found my neuropathy in Texas also found unusual brain waves on an EEG.
The EEG has never been repeated, and I would like to have it done again, and evaluated by a Duke neurologist.
I said 'Well, I just won't drive until we figure this out!". HA!!!
Not driving is a big deal if you live in the suburbs, have a husband who works part time, and a busy volunteer/book club/appointments type life.
So I want this dealt with ASAP.
I'll keep you posted.
Any thoughts, those of you with PN?
Hugs
Elaine
Elaine I don't have experience with PN, but I will tell you that I work for 911, and hitting the gas instead of the brake, or the brake instead of the gas, is a common occurrence here. Even with those without medical issues.
I agree with Velcro that this can be a common occurrence. BUT I also understand your concern. Have you had a skin biopsy for small fiber neuropathy? The NCS cannot determine small fiber neuropathy because it can only test large fibers. Was you last NCS positive? What did it show?
Also, have you been checked for proprioception problems (knowing where your feet are)? It is an easy exam done by a neurologist...right in the exam room.
This test was done in 2010, January:
EMG AND NERVE CONDUCTION LOWER EXTREMITIES
Exam Date: 1/20/2010
NERVE CONDUCTION STUDIES:
Motor nerve conduction velocity was done in the right and left peroneal nerves and right and left tibial nerves. Supramaximal stimulation was used. Amplitude, conduction velocity, F-wave latencies and sensory potentials of the right and left sural nerve and right and left H-reflexes. Studies were done to rule out tarsal tunnel syndrome
Findings: i. Markedly decreased amplitude of the right and left peroneal and tibial nerves. 2. Decreased conduction velocity of the right and left peroneal and tibial nerves. 3. Increased motor latency of the right and left peroneal and tibial nerves.
4. Increased sensory potentials of the right and left sural nerves.
5. Absent latency of the left peroneal and left tibial F-waves. 6. Delayed latency of the right tibial F-waves.
7. Delayed latency of the right and left H-reflex.
INTERPRETATION: 1. PROFOUND AXONAL NEUROPATHY: RIGHT AND LEFT PERONEAL AND TIBIAL NERVES.
2. PERIPHERAL NEUROPATHY: RIGHT AND LEFT PERONEAL AND TIBIAL NERVES.
3. RIGHT AND LEFT SURAL NERVE NEUROPATHY.
It was pretty clear. I am also partially deaf, so if I close my eyes, I fall over, since we use the nerves in our legs, the inner ear and our eyes for balance.
I have had many bad falls, I cannot walk easily because I must 'think' about it.
Messages to my feet from my brain do not get there correctly (this is probably the problem for driving).
Messages from my feet from my brain are often scrambled and if I step on a rock I react with fear because my brain thinks I'm falling off a cliff.
Needless to say I am very disabled with the neuropathy. I've been taking large doses of Methyl B-12 with the hope of helping the neuropathy.
I have a clear diagnosis.
But I don't know where I am over 3.5 years down the road.
I wish the infusions would help, but doubt if they will.
Hugs
Elaine
Lower extremity deficits in sensation and proprioception may be exceedingly dangerous for driving, as the driver may be unable to control the foot pedals or may confuse the accelerator with the brake pedal.
If deficits in sensation and proprioception are identified, referral to a driver rehabilitation specialist is recommended. The specialist may prescribe vehicle adaptive devices (eg, hand controls in place of the foot pedals) and train the patient in their use.
http://www.nhtsa.gov/people/injury/olddrive/olderdriversbook/pages/Ch9-Section4.html
Driving With Neuropathy
neuropathy.org/site/News2?page=NewsArticle&id=7205&news_iv_ctrl=1221
Driving with PN
http://www.healthboards.com/boards/neuropathy/183699-driving-pn.html
Neurolgy Diseases. Part II| Peripheral neuropathy and its limitations for driving.
http://www.medicosporlaseguridadvial.com/en/peripheral-neuropathy-and-its-limitations-driving
Neuropathy and Driving
http://kellywpa.com/2011/11/02/neuropathy-and-driving/
Oh Lighthouse,
I read the articles. And I agree totally.
But I really thought my neuropathy was better! AND the neurologist said NOTHING about my driving, nor did any of the physical therapists I saw.
And for 3.5 years, no problems.
Soooo.........
I really want that re-evaluation. I need a neurologist who would make that conclusion based on his test, or at least give me enough of a sense to know.
But I'd better start researching those hand controls right NOW.
Thanks again. I hadn't had the energy (guts?) to Google the situation, but I KNEW it was addressed and I would NOT like the answers.
sigh.
Denial...........dang.
Hugs
Elaine
Elaine,
I have absolutely no helpful input but just wanted to say im praying for you and sending (((hugs)))))
hope you get this figured out soon!!!!
it is always something isn't it? :o
lori
Elaine,
Please do not wait for a doctor to bring up the driving. They don't always cover this topic. Many patients don't ask because they don't want to know the answer. I am one of them. I have proprioception issues and peripheral neuropathy also. I must look down when i walk so I can see where my feet are. I can still drive okay from the neuropathy...BUT my autonomic dysfunction is another story. These issues (combined) have made me concerned enough that I rarely drive now. It's a VERY difficult and sensitive matter and one that only someone who has actually faced it could really understand. Losing your independence is a HUGE issue...and driving is the essence of this independence.
I'm glad you are having some repeat testing done., but have a frank conversation with the doctor. They can help get the ball rolling for hand controls IF they think it's necessary. You never know, they may say you're still fine driving as is.
I do have another suggestion. There is a neuro forum called Neurotalk with an excellent sub-forum on PN. There many have had improvement with supplements in addition to B-12. I can PM you the link if your'e interested.
Elaine,
the neurologist might give his opinion on if you can drive or not, but if you go through a driver rehab program (look at a large rehab hospital that works with spinal injuries, most have them or know where to refer as part of a patients total rehab after serious trauma.
The rehab program has equipment and simulators that can really determine if your neuropathy is interfering, what reaction times are etc and what the best adaptations are. I would highly recommend this in your situation. I am a PT and used to work at a large rehab center that had this kind of program.
Nancy
Excellent thought Nancy.
Nancy, what a great idea.
It's what I was thinking of....some actual tests that would determine my reaction time, and accuracy.
We have two medical Centers here (UNC and Duke) so surely something of that nature should be within 'driving distance'.
Ahh, a new meaning to driving distance!
I've looked at the adaptions for cars already. They seem rather primitive, but I suppose if they work that's what counts.
There may be requirements for adaptive devices by state, but since North Carolina seems a bit backwards politically, I imagine they don't put many restrictions or requirements on the adaptive devices either.
But a good rehab center would know about that, too.
The accident was on Friday, but already by Wednesday I can see that being driven around to things is a big inconvenience.
Well, since when is my 'convenience' the key to life?
It's always something, and then it is surely something else!
Hugs
Elaine
North Carolina Assistive Technology Program:
Each of the AT Centers offers:
Device Demonstration ? Get hands on experience with equipment.
Device Loan ? Borrow a device short term to try it out.
Device Reutilization ? Find used equipment on the Technology Exchange Post
Training and Technical Assistance ? Receive assistive technology expertise.
Public Awareness ? Get a general overview of AT and NCATP services.
Coordination & Collaboration ? NCATP networks with agencies and organizations regionally and statewide so that AT issues are included in planning and policy development.
The North Carolina Assistive Technology Program (NCATP) is a state and federally funded program that provides assistive technology services statewide to people of all ages and abilities.
ncatp.org/
ncatp.org/Overview.html
NCATP serves people of all ages and abilities:
Children, adults, and older adults with disabilities and their families
Older adults experiencing difficulty with daily activities
Professionals in disability related fields such as health care, social services, education, rehabilitation, or other human services
Employers and employees in private and public settings
NCATP provides services at AT Centers and satellite sites. Listed below are both the free services and the fee-based services:
Free Services:
Device demonstration - Various devices are demonstrated and basic information on the features is provided. Consumer can try out equipment through this hands-on approach. Consumers identify their needs and NCATP staff demonstrate the various devices with features and functions that can help meet those needs. Information is provided about State and local vendors, providers and repair services.
Device loan - The device loan program helps individuals try out equipment in the location they will use it: at home, work, school or recreational activities. It?s a ?try before you buy? approach which helps individuals and funding agencies make wiser choices. A wide range of assistive technology devices are available including augmentative communication ( for people with limited speech), computer access, low-vision aids, assistive listening, aids for daily living, switches, environmental controls, adaptive toys and recreational devices. Devices can be borrowed for a two week period. Toys and other AT for young children (birth to 5 years old) may be loaned for longer periods of time.
Device reutilization - The Technology Exchange Post is intended to facilitate assistive technology device exchanges. North Carolinians may either list devices for sale on the Exchange Post or may post devices they need. Anyone may browse the Exchange Post but registration is required to access contact information for persons with listings. Once registered, individuals who are interested in an item can contact the current owner about acquiring the device. The Exchange Post is web-based and available via the Internet at www.pat.org. The Exchange Post offers many features making AT equipment exchange efficient for both buyers and sellers. The Exchange Post is updated as new advertisements are received or items are sold. It is always current. Individuals can post ?Wanted? items and the system will automatically notify the individual if an item is listed ?For Sale? matching the description of the item they have listed .The Exchange Post has search capability: by category, type of listing, zip code proximity, length of time it has been posted and/or keywords.
Training /Technical Assistance - AT consultants and specialists conduct training, develop and disseminate training materials, and provide technical assistance related to assistive technology. NCATP staff respond to individual requests about the benefits of AT, device options, information on funding resources, and the use of specific devices. Staff research the inquiry and provide the information in person either on-site in the AT Center or in the home, school, work or community setting or via phone, email or U.S. mail. Consumers or family members are not charged for this information. However, if training on a device or forma, evaluation is needed, there are fees for these services. Often other public agencies can cover the fee-based services if the individual meets their eligibility requirements. Also, specific skill-building training to groups is fee based.
Public awareness - The NC Assistive Technology Program conducts public-awareness activities on the availability, benefit, appropriateness and cost of assistive technology for the general public and targeted groups. NCATP participates in activities such as fairs and exhibit booths. General overview presentations about the services offered by NCATP are often provided free. More specific skill building training to groups is fee based.
Fee-based services to agencies and schools and other organizations:
Assistive Technology Assessment - NCATP provides an in-depth analysis of devices to assist a person with a disability in achieving an identified task or goal. This assessment is conducted on-site in an Assistive Technology Center in collaboration with the consumer, family and related service professionals. A hands-on approach allows consumers to try out a variety of devices both low tech and high tech. The individual may borrow devices on short term loan to try out at school, work, home or another setting at no additional charge. A comprehensive written report is provided. Recommendations are given for assistive technology devices and related services with equipment specifications and information to help funding sources in their purchase process. Cost $475
Community Based Assessment ? NCATP provides assessments in settings other than an Assistive Technology Center. Settings may include: work, home, school, group home or other community site. This assessment can be part of a multi-disciplinary approach in which devices are tailored to meet the needs of a specific setting, task, or situation. A comprehensive written report is provided to the party requesting the assessment. Cost $475
Feature Matching & Device Trial ? This service helps match the best AT device to a person?s ability. NC Assistive Technology Program staff will work with the referral professionals to determine which devices to try based on a brief in-house assessment with the input of other referral information. A one-page summary of feature matching and summary of devices that meet the individual?s requirements is provided to the referral source. Cost $200
Training on Specific Devices/Software - Training includes the use of assistive technology devices, equipment or software packages. This training can be provided to individuals or groups. Potential participants: consumers, family members, professionals, organizations, businesses, school systems, government agencies, etc. Examples of frequently requested training: Speaking Dynamically Pro, Intellitools, Dragon Naturally Speaking. Cost $75/hr
Consultation Services ? NCATP staff provide assistive technology expertise to individuals or organizations for a specific need identified by the requesting party. Written reports are not provided for consultations unless the requesting party pays for the report writing time. Cost $75/hr
Workshops/Seminars ? NCATP conducts specialized presentations, seminars or workshops regarding assistive technology to meet an organization?s needs. Cost negotiated per training.
Training ? NCATP provides training ranging from an overview of AT to specific AT skills development training at local, regional and statewide levels based upon demand. Regionally, NCATP will work with schools, community colleges and universities, Job Link sites and state agencies to provide training. Topics may include: computer access, environmental controls, augmentative communication, AT related to hearing loss, low vision aids, and low-tech AT for activities of daily living, funding resource information, or other special area identified. Cost negotiated per training.
Travel Time ? NCATP charges for travel time to conduct community assessments, consultations, device training services, workshops and seminars. (Billable in 30 minute increments.) Cost $37.50 per hour
Categories of Assistive Technology
? Vision - Products designed to assist with vision; Examples: Magnifiers including CCTV systems; talking scales, blood pressure gauge, glucometer etc.; screen readers, screen magnifiers and Braille displays;
? Hearing - Products designed to assist with hearing; Examples: Personal amplification systems (PocketTalker Pro);Personal amplification systems ? wireless (FM);Group Assistive Listening Systems; smoke alarm with strobe flashers; door bell with flashing signal; vibrating baby monitor
? Speech communication - Products designed to assist with speaking and face-to-face communication for individuals with speech disabilities. Examples: Speech generating devices; Communication boards/books; Software with speech output; Artificial larynx; Devices that produce text but not voice output for face-to-face communication (e.g. Crespeaker);Voice clarifiers;Voice amplifiers; Stuttering aids
? Learning, cognition, and developmental - Products to provide people with disabilities with access to educational materials and instruction in school or other environments; products that assist with learning, and cognition. Examples: Calculators; Clocks/Timers/Wake-up Systems; General Personal Organization; Memory Aids; Money Management; Notetaking/Recording Devices; Electronic Organizers/Personal Digital Assistants; Educational Software (spelling, math, reading, writing, science, history, etc)
? Mobility, seating, and positioning ? Products whose main focus is on augmenting or replacing the functional limitations of an individual?s mobility. Examples: Ambulatory aids: low tech aids such as canes, walkers or crutches; also includes orthotics & prosthetics; Wheelchairs;Scooters and power chairs; Seating and positioning ? considerations for postural control & deformity management, pressure & postural management, and/or comfort & postural accommodation.
? Daily living - Devices that enhance the capacity of people with disabilities to live independently, especially AT that assists with Instrumental and other Activities of Daily Living, (ADLs, IADLs) such as dressing, personal hygiene, bathing, home maintenance, cooking, eating, shopping and managing money. Examples: Writing guides, modified or large-handled tools and utensils, eating/feeding equipment, button hooks, zipper pulls, spiked cutting board, adapted writing implements, personal pager.
? Environmental adaptations- Environmental and structural adaptations to the built environment that remove or reduce barriers and promote access to and within the built home, employment and community facilities for individuals with disabilities. Environmental adaptations usually involve building construction, engineering, and architecture, but also include environmental controls and switches that can control a portion of or an entire living environment. Examples: Adapted playground equipment and structures; Alarm and Security Systems; Door/Gate Openers;Environmental controls and switches (i.e., electronic systems that enable people to control various appliances, lights, telephone and security systems in their room, home, or other surroundings) also known as electronic aids to daily living (EADLS)
? Vehicle modification and transportation - Products that give people with disabilities independence and enhance safety in transportation through adaptation of vehicles. Examples: Adaptive shoulder and seat safety belts; Tie downs and lock downs that secure the wheelchair to the vehicle floor; Hand controls; Extended directional mirrors; Vehicles and vans modified with lifts, ramps, raised roofs, etc.
? Computers and related - Hardware and software products that enable people with disabilities to access, interact with, and use computers at home, work, or school. Includes modified or alternate keyboards, switches activated by pressure, touch screens, special software, voice to text software. Examples: Standard software; Standard hardware; Computer accessories.
? Recreation, sports, and leisure - Products not already classified in other categories that help persons with disabilities to participate in sport, health, physical education, recreation, leisure, and dance events. Examples: Switch-adapted toys and games; tennis wheelchairs; skiing equipment; playing card shuffler; beach wheelchair; adapted camera and other photography equipment; adaptive exercise equipment (not used in a rehabilitation setting); adapted equipment for fishing, hunting, and camping
North Carolina Assistive Technology Program
ncatp.org/Centers/Waters_Edge_Center.html
North Carolina Assistive Technology Program
ncatp.org/Centers.html
________________________________________
NCATP Overview
NCATP Centers
AT Funding
Links to Resources
Raleigh Center
4900 Waters Edge Dr.,Suite 250, Raleigh, NC 27606
919-233-7075(Voice/TTY) 919-233-7080 (Fax)
Staff
AT Consultant Lynne Deese
Speech Language Pathologist Jamila Minga
Directions to Raleigh Center
Approach Raleigh on any of the major thoroughfares (1-40, US 1, US 64, US 70) and follow 1-440W/US1S (The Beltline) to the western part of the city.
Exit onto Jones Franklin Rd. Turn right on Jones Franklin and pass through the stoplight.
The signs for the Waters Edge 0ffice complex will be on the right. Turn right. You will find 4900 on your left. Park in the uppermost lot to enter the building on the second floor. Our offices are located at the end of the hall, Suite 250.
Searchable Assistive Technology Web Sites
ncatp.org/Resources/Search_AT_Web.html
State Agencies Related to Assistive Technology
ncatp.org/Resources/State_Agencies.html
ncatp.org/Resources/Advocacy_Agencies.html
vimeo.com/58913966
Linden NC is 61 miles from Cary, NC.
Adaptive Devices for Disabled Drivers in Linden, North Carolina
weadaptyou.com/index.html
Automobile Hand Controls in Linden, North Carolina
weadaptyou.com/Hand_Controls_Linden_NC.html
auto-handcontrols.com/
Elaine, I'm so sorry! I don't know what is going on with me exactly, but my Neuro stuff goes nuts as I wean off of my prednisone.
I am fine right now with driving, but last year, I didn't drive for almost the entire year. I couldn't keep my foot on either of the peddles without them "jumping" off. I stopped when I almost wrecked because I missed the break a few times.
I also felt cognitively inept. I was not oriented enough to drive. I hope this isn't what's going on with you and it's just a simple mix up, but you have enough going on that warrants looking into what lighthouse has suggested. Please keep us posted. Praying for you.
Lighthouse, thank you for this info! I am so afraid of losing the freedom of driving again! I never knew something like this existed! Bless your heart!
~Andrea
Goodness, Lighthouse ANGEL!
What wonderful information. I book marked the site.
And there is a branch near me right in Raleigh, too.
So if that referral nurse would just call and get me started on an evaluation.
I just want to know if my PN warrants adaptations for the car, or if I just had a stupid mistake moment.
(don't you hate those????)
Anyway, it is very hard to have the driving process at risk, for sure.
but even with hand controls, if I'm making mistakes, that isn't good.
Oh well, time will tell.
Hugs to you all.
Elaine