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Bucks County Community College
275 Swamp Road, Newtown, PA
18940
To Whom It May Concern,
I have privileged to write in support of my dear sister in Christ, Gerlande Paul.
Growing up in the same church, I’ve watched her grow up into the friendly,
confident young woman she is today. Throughout her school years, I witnessed how
she developed cognitively and socially.
Gerlande Paul is married and is now raising a family of three. She is caring,
dependable, studious, and portrays a great sense of maturity and responsibility.
Throughout the years, she has been endeavoring to faithfully take care of her
family while she was pursuing a degree in RN. As an LPN being a nurse supervisor
for 3-11 shift in an assistance living facility showed her enthusiastic leader and
always maintained her professionalism. With patience and an ability to explain and
demonstrate strategy clearly with her staff, resident, Doctors, and family member,
demonstrate a good sense of team leader. Now that she wants to further her
education, she is getting ready to add another layer to her credentials, which will be
the RN degree. Gerlande Paul knows how to manage her time and work to the best
of her ability toward her education goals.
Gerlande will be a great asset to any organization. I can confidently recommend her
for any position or undertaking that she chooses to pursue. I am sure she will
continue to do her best to be an asset to any employer.
Should you need more information, do not hesitate to contact me at 1(407)529-
7576
sincerely,
Marie Samuelle Castor
https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=3&cad=rja
&uact=8&ved=0CCoQtwIwAmoVChMI4M2X2IjoxwIVzBY-
Ch2ngAv0&url=http%3A%2F%2Fwww.youtube.com%2Fwatch%3Fv%3DxFmgQLG9
X_o&usg=AFQjCNG-Htk-
LBm_6so1TAlXas5qMoVRBQ&sig2=wlAheCsiJ6P8_dRUfNDTiQ
https://www.youtube.com/watch?v=xFmgQLG9X_o
The 1st
minute of this video is good, at 6 minutes there is a section with breathing
equipment in a facility for ALS patients.
https://youtu.be/JklVEksqbPU
this is a care connection video about at home support and gives volunteer help to families with
ALS.
The ALS Association Care Connection
You don’t have to be alone on this journey.
It’s easy for people with ALS and their families to become overwhelmed by the wide range of
needs they have, from everyday errands to making meals, maintaining their home, getting
children to and from school, and so much more. It’s hard to know when and how to ask friends
and neighbors for help, and how to organize their availability. And for those who want to offer a
helping hand, it’s difficult to know just what is needed and how you can make a difference.
The Care Connection program is simple: it’s a network of volunteers from the community –
friends, neighbors, members of community organizations like your church, or other service
groups – that provide help for the person with ALS and his or her family, and often give the
caregiver a break from their day-to-day responsibilities.
Within these pages are tools and information that will help you to organize a Care Connection
for your person with ALS and their family. You may also call your local ALS Association
Chapter for support. While the Chapter does not organize and run the Care Connection, your
Chapter Care services staff is available to answer ongoing questions and to help with problem-
solving. Helping the family to utilize the Chapter’s resources as well ascommunity resources will
be an important task for the Care Connection.
Greater Philadelphia Chapter
321 Norristown Rd., Suite 260
Ambler, PA 19002
Phone: 215-643-5434
Fax: 215-643-9307
alsassoc@alsphiladelphia.org
Visit our website for more information
Western Pennsylvania Chapter
416 Lincoln Avenue
Pittsburgh, PA 15209
Phone 1: 800-967-9296
Phone 2: 412-821-3254
info@cure4als.org
http://www.goodshepherdrehab.org/als
ALS
If you or a loved one has been diagnosed with amyotrophic lateral sclerosis (ALS or Lou Gehrig
’s disease), Good Shepherd can help you cope with the physical and psychological aspects of the
disease.
There are devices and therapies that can manage the symptoms of Amyotrophic Lateral Sclerosis
(ALS) and help you maintain as much independence as possible. At Good Shepherd, we know
that each individual with ALS has unique abilities and medical needs. Here, we work with you
to develop goals and the appropriate treatment plan to help you reach them.
Good Shepherd’s ALS Program specializes in evaluating and treating:
• Cognitive or linguistic impairments
• Continence issues
• Disturbance in gait or mobility
• Involuntary movement
• Muscle weakness and difficulty walking, working or performing tasks of daily living
• Muscle tightness or spasticity
• Speech and language impairments or swallowing disorders
Levels of care:
• Clinic - Good Shepherd’s outpatient ALS Clinic is available the first Monday of each
month at Good Shepherd Rehabilitation Hospital – Allentown.
• Outpatient Rehabilitation - Good Shepherd offers numerous outpatient rehabilitation
facilities to help you with activities of daily living and more.
• Wellness Program - Many of Good Shepherd’s wellness programs, including fitness
opportunities, home modification and more, are appropriate for individuals with ALS and
their families.
Assistive and rehabilitation technology for ALS patients:
Good Shepherd is a Center of Excellence in the use of technology to enhance lives and augment
rehabilitation for children and adults. At Good Shepherd, our team uses leading-edge
rehabilitation and assistive technology, coupled with expert hands-on therapy, to help maximize
function and increase independence in our patients. Learn more about the technologies available
at Good Shepherd.
For more information on Good Shepherd’s services for individuals with ALS, contact us or
call 1-888-44-REHAB (73422).
- See more at: http://www.goodshepherdrehab.org/als#sthash.sYwaDnDR.dpuf
ALS: ALS Clinic
If you or a loved one has been diagnosed with amyotrophic lateral sclerosis (ALS or Lou Gehrig
’s disease), Good Shepherd’s ALS Clinic can help you cope with the physical and psychological
aspects of the disease. Good Shepherd's ALS Clinic is one of only 40 in the country.
Led by Terry Heiman-Patterson, M.D., the ALS Clinic provides patients and their families an
opportunity to learn about ALS, cope with its effects and receive access to vital rehabilitation
services.
In addition to Dr. Patterson, patients, who spend between one and three hours at the clinic, are
seen by a team of clinical specialists, including physical, occupational and respiratory therapists,
nurses, care managers and nutritionists, along with a representative from the Muscular Dystrophy
Association. Patients receive vital information regarding their disease, learn techniques to cope
with it and are referred for other therapy services as needed.
The ALS Clinic is available on the first Monday of each month on an outpatient basis. The ALS
Clinic is located in the Good Shepherd Rehabilitation Hospital-Allentown.
Good Shepherd’s ALS Clinic is supported, in part, by a generous grant from the Muscular
Dystrophy Association.
For more information on the Good Shepherd ALS Clinic, contact us or call 1-888-44-
REHAB (73422).
- See more at: http://www.goodshepherdrehab.org/als-als-clinic#sthash.P9KYO4Z3.dpuf
http://www.alsphiladelphia.org/page.aspx?pid=795
Members of the Healthcare Team
While dealing with the diagnosis of ALS, patients and their families will interact with many
health professionals, including doctors, nurses, social workers, therapists, and dietitians. The
interdisciplinary ALS health care team offers a coordinated approach to patient care. The
interdisciplinary team includes health professionals with a variety of specialties who meet
regularly to discuss the care of their patients. It is important for patients to be familiar with and
understand the roles of each member of the healthcare team.
Neurologist
A neurologist is a medical doctor who specializes in function and disorders of the nervous
system, including brain, spinal column, and peripheral nervous system. Some neurologists, such
as those in ALS Care teams, specialize in the care of patients with ALS and other similar
diseases.
Medical Pulmonologist
A medical pulmonologist is an internal medicine doctor who specializes in treatment of
pulmonary, or lung diseases, with medical interventions such as medication, respiratory therapies
and support. As an ALS patient, you may see a pulmonologist if you have pre-existing asthma,
emphysema, or another lung disease. Patients who elect advanced respiratory life support may
see the pulmonologist to evaluate and plan for this intervention.
Nurse or Nurse Practitioner
A nurse has a wide range of skills to carry out the treatment plan prescribed by the doctor. Some
nurses specialize in neurology. Nurses are excellent resources to ask questions about treatment,
get tips or assistance with care, and obtain support services or educational materials.
Nurse practitioners have advanced training and education that allows them to perform physical
exams, diagnose problems, order tests and treatments, and prescribe medications.
Assistive Technologist
The Assistive Technologist is a specialist in the use of technology to increase or improve
functional capabilities, helping people with ALS to identify and use assistive devices. Devices
may include computer access, communication technology, telecommunications, electronic aids
to assist with daily living, and assistance with seating and mobility issues.
Registered Dietitian
A dietitian is a healthcare professional trained in food, nutrition, biochemistry, and
physiology. A dietitian can provide guidance regarding an appropriate diet for the patient. A
dietitian can help choose foods that provide the appropriate amount of calories, vitamins, fats,
and protein necessary during treatment. They can be essential resources in managing symptoms
and side effects associated with a disease. Most hospitals have dietitians on staff to help patients
with their dietary needs.
Social Worker
Social workers are professionally trained to assist and counsel patients and families about
financial and community support issues. The role of the social worker is to provide resources
regarding treatment, financial resources, transportation assistance, or home care.
Physical and Occupational Therapists
The role of the Physical and Occupational Therapists at the ALS clinic are to maximize mobility,
daily task performance and comfort. This is achieved through patient and family education,
activity adaptation, equipment prescription, exercise modification and stretching.
Speech Pathologist
Speech Pathologists evaluate swallowing mechanisms and determine the most appropriate
compensatory swallowing strategies and diet consistency to maximize swallowing function in
people with swallowing difficulties. They also evaluate speech and voice production and
determine the appropriateness of different compensatory speech strategies and communication
devices to aid in communication, teaching patients and families in the most effective ways to
communicate.
Mental Health Nurses and Nurse Counselors
A mental health nurse has received specialized education in psychology, psychiatry, and
counseling. Some specialize in chronic illnesses, such as cancer. Mental health nurses treat
patients through therapy and counseling sessions.
Questions to ask your healthcare team
http://alsn.mda.org/article/not-gloom-and-doom-demystifying-hospice
For some, “hospice” is a vague idea whose connection to death leads to outright rejection before
the true facts are known.
In fact, hospice neither prolongs life nor hastens death. Instead, it offers practical care and
support at a difficult and sometimes traumatic time.
“People should think about hospice as a comfort measure, not gloom and doom,” says Janet
Neigh, executive director of the Hospice Association of America (HAA). “There’s a
misconception that hospice is a place. It’s actually a concept, an approach to care for people who
have a terminal illness.”
Hospice care helps those with a limited life expectancy — and their caregivers — live each
remaining day to the fullest possible, says Neigh.
Supportive care
Hospice care is palliative — focused on making the patient as comfortable as possible — not an
effort at major medical intervention.
Hospice provides a combination of physicians, registered nurses, home health aides, counselors,
social workers and trained volunteers who meet the physical, emotional and spiritual needs of
patients, their loved ones and caregivers.
Care can include providing pain relief, bathing and dressing, preparing meals, running errands,
doing household chores and providing informed answers to questions. Specialized equipment,
such as alternating pressure mattresses, can be made available at the person’s home.
Hospice also provides services for family members, such as bereavement counseling and support
groups, for up to a full year after a loved one passes on.
Eligibility and payment
Generally, a person must be certified by a medical doctor as having a terminal illness and
probably having six months or less to live, in order to receive two consecutive 90-day periods of
hospice benefits. However, coverage can be extended — for years in some cases — so long as
the doctor’s prognosis of six months or less to live is regularly renewed.
People with ALS also may become eligible for hospice care if a doctor certifies they have “rapid
functional decline,” whether or not they demonstrate specific declining health characteristics.
Hospice policies vary from facility to facility. Most hospices accept people with pre-existing
feeding tubes and some programs also accept patients who already are vented. In a few cases,
hospices have rejected people with ALS who are taking Rilutek, a drug that prolongs survival.
The local MDA clinic doctor is a good resource when considering hospice.
The great majority of hospice patients have their expenses covered by Medicare Part A. Most
private insurances also cover hospice expenses. Less than 1 percent of hospice patients pay out
of their own pockets. Other sources of coverage include Medicaid and charitable assistance.
(Note: Get expensive equipment such as power wheelchairs and communication devices before
entering hospice, as insurance won’t pay for these items afterward.)
Where is care provided?
Hospice Association of America
(202) 546-4759
www.nahc.org/haa/
National Association for Home Care & Hospice
(202) 547-7424
www.nahc.org
National Hospice and Palliative Care Organization
(800) 658-8898
www.nhpco.org
Medicare Hospice Benefits
(publication CMS 02154)
U.S. Department of Health and
Human Services
(800) 633-4227
www.medicare.gov
Far and away the most common setting for hospice care is the
person’s own home or that of a family member. Hospice
facilities, acute care facilities, nursing facilities and hospitals
are utilized to a much smaller extent.
Hospice patients may receive different levels of care in
different settings and may move from one setting to another
depending on the level of care required. The goal is to ensure
that neither patients nor families have to confront a crisis
situation on their own.
Routine home care
More than 95 percent of hospice patients — those whose
symptoms are under control — receive this type of in-home
care, which can include the following:
• Registered nurse visits
• Physician and specialist services
• Home health aide visits
• Medications
• Medical equipment and supplies
• Lab and diagnostic studies
• Counseling (dietary, spiritual, bereavement)
• Therapy (speech, physical)
• A hospice nurse on call 24 hours a day
Inpatient care
Patients whose symptoms aren’t being controlled at home may temporarily go to an acute care
facility where their condition can be monitored continuously and medications prescribed. When
symptoms are brought under control or an acceptable comfort level has been achieved, they can
return to routine home care.
Continuous home care
Similar to inpatient care, this level of care differs in that the patient whose symptoms are proving
troublesome chooses to stay at home under the continuous care of a hospice nurse. Continuous
care is usually considered a short-term situation, and its need is evaluated every 24 hours.
Respite care
Family caregivers, especially in end-of-life circumstances, are under tremendous physical and
emotional strain. When they need a break, respite care allows their loved one to stay in an
around-the-clock care facility for up to five days at a time before returning home.
No matter the level of care, if a person’s health improves significantly, hospice services can be
discontinued. Hospice patients also can, for any reason, sign a revocation statement that cancels
their hospice services.
Sooner is better than later
“One of our biggest challenges is getting families to recognize that hospice should be utilized
earlier than the last two weeks of life,” says Neigh, of the Hospice Association of America. A
minimum of 30 days is needed to really reap the benefits of the program, she says.
“The first week is spent just figuring out patient and family needs,” she says. “It’s a time to get
things stabilized. Family and patient have time to adjust to the fact that this is nearing the end.
It’s time to do a life review, perhaps to have family and friends come from other parts of the
country. It’s an adaptive process. It’s a special time of life.”
People with ALS, family members or caregivers should talk to the ALS health care team about
hospice well before they think it’s “the end.”
“Doctors at MDA clinics are very familiar with this issue, and often broach the subject on their
own,” notes Scott Wiebe, MDA director of outreach initiatives and the MDA/ALS Division.
Jane Irvine’s mother died from complications of ALS 40 years ago, before hospice existed, and
Irvine says that was a primary reason she went into hospice work. She is now the director of
home health and extended care at Hospice of the Valley in Phoenix, Ariz., the country’s largest
hospice facility.
“I still run through my mind how my mother’s decline and death could have been handled
differently. I would have given anything for more support,” she says. “If only hospice had
been available at that time, it would have been a lifeline for my mother and me. Though I
regret what did not happen for us, I take solace in knowing that the support system offered
by hospice is available now for others who walk the same journey."
https://www.youtube.com/watch?feature=player_embedded&v=0HmGVq0s4k8
at 26:20 there is a short segment on equipment used in the bathroom
Amyotrophic Lateral Sclerosis (ALS)
Welcome to the Penn State Hershey ALS
Clinic and Research Center
An ALS Association-Certified Center of Excellence
Click to view a larger image of our ALS Team
Comprehensive, multi-disciplinary treatment for ALS patients and their families.
• About Us
• Our Team
• News and Events
• Research
• Contact Us
• Support
Inspired to Cure: Finding New Treatments for ALS
Penn State Hershey ALS Clinic and Research
Center- News and Events
Walk to D'Feet ALS - Saturday, June 6, 2015
Join patients, families, caregivers and supporters on the campus of Penn State Milton S. Hershey
Medical Center, as we raise money and hope in the battle against ALS.
Registration begins at 9:00 a.m., the walk starts at 10:00 a.m., for a distance of two miles.
Register for Hershey Walk to Defeat ALS®
event.
For more information, please email Ali Nielsen at ali@alsphiladelphia.org or contact her at 215-
643-5434, ext. 46.
View the 2013 Walk to D'Feet ALS video.
BC Community College Letter of Recommendation for Gerlande Paul RN Degree

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BC Community College Letter of Recommendation for Gerlande Paul RN Degree

  • 1. Bucks County Community College 275 Swamp Road, Newtown, PA 18940 To Whom It May Concern, I have privileged to write in support of my dear sister in Christ, Gerlande Paul. Growing up in the same church, I’ve watched her grow up into the friendly, confident young woman she is today. Throughout her school years, I witnessed how she developed cognitively and socially. Gerlande Paul is married and is now raising a family of three. She is caring, dependable, studious, and portrays a great sense of maturity and responsibility. Throughout the years, she has been endeavoring to faithfully take care of her family while she was pursuing a degree in RN. As an LPN being a nurse supervisor for 3-11 shift in an assistance living facility showed her enthusiastic leader and always maintained her professionalism. With patience and an ability to explain and demonstrate strategy clearly with her staff, resident, Doctors, and family member, demonstrate a good sense of team leader. Now that she wants to further her education, she is getting ready to add another layer to her credentials, which will be the RN degree. Gerlande Paul knows how to manage her time and work to the best of her ability toward her education goals. Gerlande will be a great asset to any organization. I can confidently recommend her for any position or undertaking that she chooses to pursue. I am sure she will continue to do her best to be an asset to any employer. Should you need more information, do not hesitate to contact me at 1(407)529- 7576 sincerely, Marie Samuelle Castor
  • 2.
  • 3.
  • 4.
  • 5.
  • 6.
  • 7.
  • 8.
  • 9. https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=3&cad=rja &uact=8&ved=0CCoQtwIwAmoVChMI4M2X2IjoxwIVzBY- Ch2ngAv0&url=http%3A%2F%2Fwww.youtube.com%2Fwatch%3Fv%3DxFmgQLG9 X_o&usg=AFQjCNG-Htk- LBm_6so1TAlXas5qMoVRBQ&sig2=wlAheCsiJ6P8_dRUfNDTiQ https://www.youtube.com/watch?v=xFmgQLG9X_o The 1st minute of this video is good, at 6 minutes there is a section with breathing equipment in a facility for ALS patients. https://youtu.be/JklVEksqbPU this is a care connection video about at home support and gives volunteer help to families with ALS. The ALS Association Care Connection You don’t have to be alone on this journey.
  • 10. It’s easy for people with ALS and their families to become overwhelmed by the wide range of needs they have, from everyday errands to making meals, maintaining their home, getting children to and from school, and so much more. It’s hard to know when and how to ask friends and neighbors for help, and how to organize their availability. And for those who want to offer a helping hand, it’s difficult to know just what is needed and how you can make a difference. The Care Connection program is simple: it’s a network of volunteers from the community – friends, neighbors, members of community organizations like your church, or other service groups – that provide help for the person with ALS and his or her family, and often give the caregiver a break from their day-to-day responsibilities. Within these pages are tools and information that will help you to organize a Care Connection for your person with ALS and their family. You may also call your local ALS Association Chapter for support. While the Chapter does not organize and run the Care Connection, your Chapter Care services staff is available to answer ongoing questions and to help with problem- solving. Helping the family to utilize the Chapter’s resources as well ascommunity resources will be an important task for the Care Connection. Greater Philadelphia Chapter 321 Norristown Rd., Suite 260 Ambler, PA 19002 Phone: 215-643-5434
  • 11. Fax: 215-643-9307 alsassoc@alsphiladelphia.org Visit our website for more information Western Pennsylvania Chapter 416 Lincoln Avenue Pittsburgh, PA 15209 Phone 1: 800-967-9296 Phone 2: 412-821-3254 info@cure4als.org http://www.goodshepherdrehab.org/als ALS If you or a loved one has been diagnosed with amyotrophic lateral sclerosis (ALS or Lou Gehrig ’s disease), Good Shepherd can help you cope with the physical and psychological aspects of the disease. There are devices and therapies that can manage the symptoms of Amyotrophic Lateral Sclerosis (ALS) and help you maintain as much independence as possible. At Good Shepherd, we know that each individual with ALS has unique abilities and medical needs. Here, we work with you to develop goals and the appropriate treatment plan to help you reach them. Good Shepherd’s ALS Program specializes in evaluating and treating: • Cognitive or linguistic impairments • Continence issues • Disturbance in gait or mobility • Involuntary movement • Muscle weakness and difficulty walking, working or performing tasks of daily living • Muscle tightness or spasticity • Speech and language impairments or swallowing disorders
  • 12. Levels of care: • Clinic - Good Shepherd’s outpatient ALS Clinic is available the first Monday of each month at Good Shepherd Rehabilitation Hospital – Allentown. • Outpatient Rehabilitation - Good Shepherd offers numerous outpatient rehabilitation facilities to help you with activities of daily living and more. • Wellness Program - Many of Good Shepherd’s wellness programs, including fitness opportunities, home modification and more, are appropriate for individuals with ALS and their families. Assistive and rehabilitation technology for ALS patients: Good Shepherd is a Center of Excellence in the use of technology to enhance lives and augment rehabilitation for children and adults. At Good Shepherd, our team uses leading-edge rehabilitation and assistive technology, coupled with expert hands-on therapy, to help maximize function and increase independence in our patients. Learn more about the technologies available at Good Shepherd. For more information on Good Shepherd’s services for individuals with ALS, contact us or call 1-888-44-REHAB (73422). - See more at: http://www.goodshepherdrehab.org/als#sthash.sYwaDnDR.dpuf ALS: ALS Clinic
  • 13. If you or a loved one has been diagnosed with amyotrophic lateral sclerosis (ALS or Lou Gehrig ’s disease), Good Shepherd’s ALS Clinic can help you cope with the physical and psychological aspects of the disease. Good Shepherd's ALS Clinic is one of only 40 in the country. Led by Terry Heiman-Patterson, M.D., the ALS Clinic provides patients and their families an opportunity to learn about ALS, cope with its effects and receive access to vital rehabilitation services. In addition to Dr. Patterson, patients, who spend between one and three hours at the clinic, are seen by a team of clinical specialists, including physical, occupational and respiratory therapists, nurses, care managers and nutritionists, along with a representative from the Muscular Dystrophy Association. Patients receive vital information regarding their disease, learn techniques to cope with it and are referred for other therapy services as needed. The ALS Clinic is available on the first Monday of each month on an outpatient basis. The ALS Clinic is located in the Good Shepherd Rehabilitation Hospital-Allentown. Good Shepherd’s ALS Clinic is supported, in part, by a generous grant from the Muscular Dystrophy Association. For more information on the Good Shepherd ALS Clinic, contact us or call 1-888-44- REHAB (73422). - See more at: http://www.goodshepherdrehab.org/als-als-clinic#sthash.P9KYO4Z3.dpuf http://www.alsphiladelphia.org/page.aspx?pid=795
  • 14. Members of the Healthcare Team While dealing with the diagnosis of ALS, patients and their families will interact with many health professionals, including doctors, nurses, social workers, therapists, and dietitians. The interdisciplinary ALS health care team offers a coordinated approach to patient care. The interdisciplinary team includes health professionals with a variety of specialties who meet regularly to discuss the care of their patients. It is important for patients to be familiar with and understand the roles of each member of the healthcare team. Neurologist A neurologist is a medical doctor who specializes in function and disorders of the nervous system, including brain, spinal column, and peripheral nervous system. Some neurologists, such as those in ALS Care teams, specialize in the care of patients with ALS and other similar diseases. Medical Pulmonologist A medical pulmonologist is an internal medicine doctor who specializes in treatment of pulmonary, or lung diseases, with medical interventions such as medication, respiratory therapies and support. As an ALS patient, you may see a pulmonologist if you have pre-existing asthma, emphysema, or another lung disease. Patients who elect advanced respiratory life support may see the pulmonologist to evaluate and plan for this intervention. Nurse or Nurse Practitioner A nurse has a wide range of skills to carry out the treatment plan prescribed by the doctor. Some nurses specialize in neurology. Nurses are excellent resources to ask questions about treatment, get tips or assistance with care, and obtain support services or educational materials. Nurse practitioners have advanced training and education that allows them to perform physical exams, diagnose problems, order tests and treatments, and prescribe medications. Assistive Technologist The Assistive Technologist is a specialist in the use of technology to increase or improve functional capabilities, helping people with ALS to identify and use assistive devices. Devices may include computer access, communication technology, telecommunications, electronic aids to assist with daily living, and assistance with seating and mobility issues. Registered Dietitian A dietitian is a healthcare professional trained in food, nutrition, biochemistry, and physiology. A dietitian can provide guidance regarding an appropriate diet for the patient. A dietitian can help choose foods that provide the appropriate amount of calories, vitamins, fats, and protein necessary during treatment. They can be essential resources in managing symptoms and side effects associated with a disease. Most hospitals have dietitians on staff to help patients with their dietary needs. Social Worker Social workers are professionally trained to assist and counsel patients and families about
  • 15. financial and community support issues. The role of the social worker is to provide resources regarding treatment, financial resources, transportation assistance, or home care. Physical and Occupational Therapists The role of the Physical and Occupational Therapists at the ALS clinic are to maximize mobility, daily task performance and comfort. This is achieved through patient and family education, activity adaptation, equipment prescription, exercise modification and stretching. Speech Pathologist Speech Pathologists evaluate swallowing mechanisms and determine the most appropriate compensatory swallowing strategies and diet consistency to maximize swallowing function in people with swallowing difficulties. They also evaluate speech and voice production and determine the appropriateness of different compensatory speech strategies and communication devices to aid in communication, teaching patients and families in the most effective ways to communicate. Mental Health Nurses and Nurse Counselors A mental health nurse has received specialized education in psychology, psychiatry, and counseling. Some specialize in chronic illnesses, such as cancer. Mental health nurses treat patients through therapy and counseling sessions. Questions to ask your healthcare team http://alsn.mda.org/article/not-gloom-and-doom-demystifying-hospice
  • 16. For some, “hospice” is a vague idea whose connection to death leads to outright rejection before the true facts are known. In fact, hospice neither prolongs life nor hastens death. Instead, it offers practical care and support at a difficult and sometimes traumatic time. “People should think about hospice as a comfort measure, not gloom and doom,” says Janet Neigh, executive director of the Hospice Association of America (HAA). “There’s a misconception that hospice is a place. It’s actually a concept, an approach to care for people who have a terminal illness.” Hospice care helps those with a limited life expectancy — and their caregivers — live each remaining day to the fullest possible, says Neigh. Supportive care Hospice care is palliative — focused on making the patient as comfortable as possible — not an effort at major medical intervention. Hospice provides a combination of physicians, registered nurses, home health aides, counselors, social workers and trained volunteers who meet the physical, emotional and spiritual needs of patients, their loved ones and caregivers.
  • 17. Care can include providing pain relief, bathing and dressing, preparing meals, running errands, doing household chores and providing informed answers to questions. Specialized equipment, such as alternating pressure mattresses, can be made available at the person’s home. Hospice also provides services for family members, such as bereavement counseling and support groups, for up to a full year after a loved one passes on. Eligibility and payment Generally, a person must be certified by a medical doctor as having a terminal illness and probably having six months or less to live, in order to receive two consecutive 90-day periods of hospice benefits. However, coverage can be extended — for years in some cases — so long as the doctor’s prognosis of six months or less to live is regularly renewed. People with ALS also may become eligible for hospice care if a doctor certifies they have “rapid functional decline,” whether or not they demonstrate specific declining health characteristics. Hospice policies vary from facility to facility. Most hospices accept people with pre-existing feeding tubes and some programs also accept patients who already are vented. In a few cases, hospices have rejected people with ALS who are taking Rilutek, a drug that prolongs survival. The local MDA clinic doctor is a good resource when considering hospice. The great majority of hospice patients have their expenses covered by Medicare Part A. Most private insurances also cover hospice expenses. Less than 1 percent of hospice patients pay out of their own pockets. Other sources of coverage include Medicaid and charitable assistance. (Note: Get expensive equipment such as power wheelchairs and communication devices before entering hospice, as insurance won’t pay for these items afterward.) Where is care provided? Hospice Association of America (202) 546-4759 www.nahc.org/haa/ National Association for Home Care & Hospice (202) 547-7424 www.nahc.org National Hospice and Palliative Care Organization (800) 658-8898 www.nhpco.org Medicare Hospice Benefits (publication CMS 02154) U.S. Department of Health and Human Services
  • 18. (800) 633-4227 www.medicare.gov Far and away the most common setting for hospice care is the person’s own home or that of a family member. Hospice facilities, acute care facilities, nursing facilities and hospitals are utilized to a much smaller extent. Hospice patients may receive different levels of care in different settings and may move from one setting to another depending on the level of care required. The goal is to ensure that neither patients nor families have to confront a crisis situation on their own. Routine home care More than 95 percent of hospice patients — those whose symptoms are under control — receive this type of in-home care, which can include the following: • Registered nurse visits • Physician and specialist services • Home health aide visits • Medications • Medical equipment and supplies • Lab and diagnostic studies • Counseling (dietary, spiritual, bereavement) • Therapy (speech, physical) • A hospice nurse on call 24 hours a day Inpatient care Patients whose symptoms aren’t being controlled at home may temporarily go to an acute care facility where their condition can be monitored continuously and medications prescribed. When symptoms are brought under control or an acceptable comfort level has been achieved, they can return to routine home care. Continuous home care Similar to inpatient care, this level of care differs in that the patient whose symptoms are proving troublesome chooses to stay at home under the continuous care of a hospice nurse. Continuous care is usually considered a short-term situation, and its need is evaluated every 24 hours. Respite care
  • 19. Family caregivers, especially in end-of-life circumstances, are under tremendous physical and emotional strain. When they need a break, respite care allows their loved one to stay in an around-the-clock care facility for up to five days at a time before returning home. No matter the level of care, if a person’s health improves significantly, hospice services can be discontinued. Hospice patients also can, for any reason, sign a revocation statement that cancels their hospice services. Sooner is better than later “One of our biggest challenges is getting families to recognize that hospice should be utilized earlier than the last two weeks of life,” says Neigh, of the Hospice Association of America. A minimum of 30 days is needed to really reap the benefits of the program, she says. “The first week is spent just figuring out patient and family needs,” she says. “It’s a time to get things stabilized. Family and patient have time to adjust to the fact that this is nearing the end. It’s time to do a life review, perhaps to have family and friends come from other parts of the country. It’s an adaptive process. It’s a special time of life.” People with ALS, family members or caregivers should talk to the ALS health care team about hospice well before they think it’s “the end.” “Doctors at MDA clinics are very familiar with this issue, and often broach the subject on their own,” notes Scott Wiebe, MDA director of outreach initiatives and the MDA/ALS Division. Jane Irvine’s mother died from complications of ALS 40 years ago, before hospice existed, and Irvine says that was a primary reason she went into hospice work. She is now the director of home health and extended care at Hospice of the Valley in Phoenix, Ariz., the country’s largest hospice facility. “I still run through my mind how my mother’s decline and death could have been handled differently. I would have given anything for more support,” she says. “If only hospice had been available at that time, it would have been a lifeline for my mother and me. Though I regret what did not happen for us, I take solace in knowing that the support system offered by hospice is available now for others who walk the same journey."
  • 20. https://www.youtube.com/watch?feature=player_embedded&v=0HmGVq0s4k8 at 26:20 there is a short segment on equipment used in the bathroom
  • 21. Amyotrophic Lateral Sclerosis (ALS) Welcome to the Penn State Hershey ALS Clinic and Research Center An ALS Association-Certified Center of Excellence Click to view a larger image of our ALS Team Comprehensive, multi-disciplinary treatment for ALS patients and their families. • About Us • Our Team • News and Events • Research • Contact Us • Support Inspired to Cure: Finding New Treatments for ALS Penn State Hershey ALS Clinic and Research Center- News and Events Walk to D'Feet ALS - Saturday, June 6, 2015
  • 22. Join patients, families, caregivers and supporters on the campus of Penn State Milton S. Hershey Medical Center, as we raise money and hope in the battle against ALS. Registration begins at 9:00 a.m., the walk starts at 10:00 a.m., for a distance of two miles. Register for Hershey Walk to Defeat ALS® event. For more information, please email Ali Nielsen at ali@alsphiladelphia.org or contact her at 215- 643-5434, ext. 46. View the 2013 Walk to D'Feet ALS video.