http://www.carolinasals.org/index2.asp


at my dx/94 i was 174 lbs, im down to 125lbs.


my fvc is 25%

dont be making fun of me now.
my brother jeff sitting in corner makin fun of me.

haha

Velma Lanford
Respiratory Therapist

getting fitted for bipap...lol



What is the role of the Respiratory Therapist?



The role of the respiratory therapist is to monitor the lung function of the patient. Our respiratory therapist is seen as a liaison between home respiratory care and our center. This commonly includes evaluating the patient's Forced Vital Capacity and Tidal Volume to catch any early signs of respiratory weakness. Through collaboration with the Pulmonologist, the respiratory therapist helps to prescribe the best respiratory assistance device for the patient. The goal of the respiratory therapist is to help the patient maintain independent respiration for as long as possible. Their jobs include:

Evaluate lung function
Determine Forced Vital Capacity (FVC) and Tidal Volume (TV) of patients.
Evaluate the effectiveness of equipment being used to test patient FVC and TV.
Consult with the Pulmonologist to decide the best type of respiratory assistance device for the patient's needs.
Fit the patient for the nasal mask needed for BiPap (a nighttime breathing aide)
Monitor and adjust settings on respiratory assistance equipment, and maintain/repair the equipment.
Develops breathing exercises that may help the patient to maintain respiratory muscle strength.

Velma Lanford
Respiratory Therapist
704-355-1817

Additional respiratory therapy resources:

*Respiratory Aides
*Improtance of BiPAP

http://www.carolinasals.org/respiratory.asp






dr. rosenfeld was suprised to see me after 13 years.
he was at emory when i got my 3rd dx.
so he looked me over good and had alot to ask me.
that was after dr. eric gave me a workout.


Jeffrey Rosenfeld, Ph.D., M.D.
Dr. Rosenfeld received his Ph.D. in neuroanatomy from the University of Connecticut in 1983. Following his experience at Johns Hopkins Hospital as a research associate he earned an M.D. degree at the University of Maryland. He completed a Neurology residency at the University of Pennsylvania followed by a faculty position at Emory University where he established the ALS/MDA clinic. Dr. Rosenfeld moved to the Carolinas Medical Center in 1998 to establish the Carolinas Neuromuscular/ALS-MDA Center, initiated by a significant endowment from the Charlotte community. Since the Program was initiated, patients have traveled to the Center in Charlotte from over 25 states and four countries. Most recently, the Carolinas Neuromuscular/ALS Center has received an additional $5 million private gift to further research in Limb Girdle Muscular Dystrophy. Dr Rosenfeld has published numerous articles and chapters and currently maintains an active clinical and basic science research program in motor neuron disease.






Kerry Shaw, MHS, PT, Physical Therapy Coordinator
kerry did not like the way my dropfoot is caus when i got my wheelchair i stoped
wearing my afo's.
she worked on my chair some, new cushion, talked about alot of things for later.
kerry was so nice. but everyone was.




What is the role of the Physical Therapist?


The role of the physical therapist at the ALS Center is to work with the patient and caregivers to help patients maintain independence and safety with functional activities. The issues most commonly addressed include mobility (walking, stairs, and transfers), exercise (range of motion, endurance and strengthening), balance, fall prevention, fatigue, equipment needs (walkers, seat lifts, ankle/knee/neck braces, walkers, wheelchairs, patient lifts, etc.). It is important that our patients, their caregivers, and the physical therapist work together to find the most efficient, safest, and most reasonable solutions possible to the many functional problems our patients may face. Evaluation and treatment may include:

Evaluation of lower extremity range of motion, strength, and spasticity
Evaluation of balance and safety with functional activities
Treatment in the clinic and home exercise programs to increase range of motion, strength, and/or endurance
Gait training with or without an assistive device, including stair training
Training with patients and caregivers to ensure safe transfers
Recommendations for home adaptations, fall prevention strategies, and strategies for pacing to decrease fatigue
Evaluation and fitting for ankle, knee, or neck braces to help maintain alignment and stability while performing functional activities
Fitting and recommendations for wheelchairs
Kerry Shaw, MHS, PT, Physical Therapy Coordinator
(704) 355-9473

Additional physical therapy resources:

*Tips for fall prevention at home
*How to Find and Choose an Outpatient Therapist
*Instructions for the wear and care of compression stockings
*Facts about Housing(PT)

http://www.carolinasals.org/physicalTherapy.asp


Amber L. Ward, OTR/L, ATP, Occupational Therapy Coordinator

amber was not there but kim was she was great and funny.
we had to make a few trips to the van to cary all the things she gave us. lol
i hope amber is not mad. lol
everyone gave us stuff to try out.

What is the role of the Occupational Therapist?

The goal of the occupational therapist is to help patients maintain their ability to perform their everyday living activities, such as eating, working, bathing, getting dressed, writing, etc. The occupational therapist assesses strength, range of motion and coordination as well as environmental factors which can interfere with performance of these tasks, and assists with adaptation. Numerous adaptive techniques and equipment can make these daily tasks as easy as possible, and help maintain independence and safety. The Occupational Therapist also can assist with positioning and providing splints and devices to maintain range of motion to joints and muscles. Neck braces are often used to help patients with weakened neck muscles to hold their heads up comfortably, decreasing strain with respiration and enabling them to better participate in their surroundings. Other roles include:

Evaluate upper extremity mobility and function
Wheelchair evaluation, fitting and ordering
Provide techniques and equipment to assist in everyday activities
Help patients investigate and obtain functional equipment
Have available pieces of equipment that are of common need by our ALS patients, that they may take home with them that day
Provide home exercise program to promote strength and functioning of shoulders, arms and hands
Provide splints and orthotics for positioning, range of motion and comfort for the upper extremity
Clinical trial evaluator

Amber L. Ward, OTR/L, ATP, Occupational Therapy Coordinator
704.355.0787 (direct)

For additional OT resources, see below:

*For Professionals working with ALS patients
*Thinking about purchasing a wheelchair accessible van? Read this first!
*Scooters vs. Wheelchairs
*Power Wheelchair Recommendations
*Wheelchair Accessible Rentals
*Travel resources for persons with disabilities


http://www.carolinasals.org/occupationalTherapy.asp


Amy Young , MS, MSW, LCSW, Clinical Social Worker
http://www.carolinasal...(cropped)



What is the role of the Clinical Social Worker?


The role of the Clinical Social Worker at the Center is to assist patients, caregivers and families in meeting the tremendous challenges they may face as a result of having ALS and related motor neuron diseases. These challenges may include coping with changes in independence, emotional stresses and depression, parenting, marital and relationship issues, and employment and financial issues. The goal of these professionals is to assist all those affected by their diagnosis in maintaining the highest possible quality of life. A wide variety of services are available including the following:

Counseling and information for individuals, families and caregivers for all new patients seen in the ALS Center.
Additional education, counseling, follow-up with newly diagnosed patients.
Support Group for caregivers/patients and on-going adjustment counseling.
Crisis Intervention and Grief counseling.
Facilitation of family discussion and planning for patient care at home/durable medical equipment/adaptive devices
Education on advanced directives
Information for obtaining insurance and income benefits (i.e.: SSI, SSDI, Medicaid, Medicare, COBRA)
Referral to support groups/stress management programs.
Information on long term care facilities and respite care programs.
Mental health/substance abuse evaluations and referrals to appropriate treatment.
Referral to Drug Assistance Programs for assistance with obtaining prescription medicines when needed.
Information and education on sexuality issues.
Facilitation/maintenance of preferred provider list from the patients to assist with team referrals for outpatient/home health services.
Amy Young , MS, MSW, LCSW, Clinical Social Worker
704.355.0784 (phone)

Looking for information on Support Groups?
Support Groups offer patients, families, caregivers a neutral and open place to learn about living with ALS. Patients living with any stage of disease are welcome, as are caregivers without patients. Please join us!

Patients are welcome at the MDA sponsored ALS Support Group, meeting
at our Center. Check out our Calendar for our next group!

Patients are also welcome at the ALSA sponsored ALS Support Group. Check out the ALSA-NC Chapter website (http://www.catfishchapter.org/ourcha...ortgroups.html) for dates and times.

Additional social work resources:
*Social Work Resources for Patients and Families
*Government Resources
*Patient Assistance for Established Center Patients

For Established Center Patients and Families only:
*ALS Care Fund Grant Application

For all ALS patients and families:

Ride For Life (http://www.rideforlife.com/) offers Care For Life caregiving grant applications periodically throughout the year. Visit their website to apply.

The ALS Association - Jim "Catfish" Hunter Chapter offers a wide range of services to all people living in North Carolina with ALS and PLS. Popular services include statewide support groups, respite grants, transportation grants, assistive technology grants and flex grants. They also offer counseling services, educational materials and three equipment loan closets throughout the state. Visit their website for more information and to apply online or call toll free 1-877-568-4347.

http://www.carolinasals.org/counseling.asp


Speech Therapy

K. Amy Wright, MCD, CCC-SLP, Speech Therapy Coordinator
http://www.carolinasal...(cropped)

amy has all the cool toys

What is the role of the Speech Therapist?

The speech therapist (also known as speech-language pathologist) at the Center specializes in helping people who have difficulties with communication and/or swallowing. The goal of treatment if speech is impaired is to facilitate everyday communication. This may include training to use compensatory techniques that improve speech intelligibility. It may also involve training to use augmentative or alternative communication (AAC). AAC includes low tech items like a clear letter board and high tech speech generating devices. Evaluation and education regarding use of environmental control and assistive technology to aid with computer and telephone access is also done in the speech lab. When available, equipment from our loaner closet is assigned. If swallowing is a problem, the speech therapist may train patients to use appropriate swallowing techniques or assist with diet modification to make swallowing easier. The goal is to maintain the safest and most pleasurable diet without compromising nutrition.

Other responsibilities include:


Assisting with mounting solutions for various types of assistive technology
Specific training for use and programming of speech generating devices and other assistive technology
Completing paperwork to obtain funding for medically necessary equipment
Referring patients to state assistive technology programs; identifying other resources for assistance as needed
Vitalstim treatment for patients with swallowing difficulty
Coordinating care with other team members and other professionals outside clinic
K. Amy Wright, MCD, CCC-SLP, Speech Therapy Coordinator
704.355.0867

Additional Resources:
*Communications Frustrations with Dysarthria
*Techniques for Improving Verbal Communication
*Guide to Low Cost and No Cost Online Tools
*Frequently Used Communication Devices
*On Screen Keyboard Information
*AAC software info
*AAC Tech Support Info


http://www.carolinasals.org/speechTherapy.asp


Nutritional Needs in the ALS Patient

Amy Ellis, MPH, RD, LDN, CNSD
704.446.6252

What is the Role of the Nutritionist?


The goal of the nutritionist on the team is to work with persons with ALS (PALS) and other motor neuron diseases and neuromuscular diagnosis individually to maintain healthy diets. The nutritionist can help in the following ways:

Evaluate current dietary intake and compare this to calculated needs for calories, carbohydrate, protein, fats, vitamins, and minerals
Offer recipes and meal plans to optimize a person's diet
Suggest consistency changes and textures to aid with chewing and swallowing
Identify appropriate dietary supplements
Work with patients to customize tube feeding regimens to complement their specific schedules and nutrient needs


Additional resources for ALS patients:

*Nutritional Needs for ALS Patients
*Info on Home Tube Feeding and Care of your PEG
*Dangerous Dietary Supplements
*Why Consider a PEG or feeding tube

http://www.carolinasals.org/nutrition.asp






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the clinic and people there are great.
even better then what rama told me about it.
i go back for feeding tube on the 15 th of may.
the first thing down my tube will be a beer...lol

i brought home a bipap and im going back in 2 wks for feeding tube.

Bobby,
Beautiful pictures;-)
You look good also. Girls are hanging around... Hahahaha
girls girls girls!
;-)

alper i had to promise each one of those girls an autographed picture of you just so they would be in my picture...lol