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Resources
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Assistive technology
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Tips for Caregivers
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How Can Occupational Therapy Help?
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References
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Below are some local resources in the North Country
Would you like to speak to someone about your ALS ? Call the numbers below, for more information.
- Upstate New York Chapter of the ALS Association: (866)-499-7257
- National ALS Association: (1-800)-782-4747
Home Modifications:
- New York Access to Home Program:
- A financial assistance to property owners that help create home modifications to make accessible for low and moderate income persons with disabilities.
- Link to the application below
- http://www.nyshcr.org/Apps/CDOnline/appreg.pdf
- Once completed the form, send the filled out application to this address:
- New York State Division of Housing & Community Renewal
Office of Community Development - MSR Unit
Hampton Plaza - Room 603S
38-40 State St.
Albany, NY 12207
- New York State Division of Housing & Community Renewal
- Link to the application below
- A financial assistance to property owners that help create home modifications to make accessible for low and moderate income persons with disabilities.
Would you like to borrow some equipment? Call the numbers below for more information.
- Loan Closets
- The Jon Stone Durable Medical Equipment Program:
- Questions about the program? Contact Ben Lieman, who is an Assistive Technology Specialist
- Blieman@als-ny.org or call the office at (212)-720-3057
- You might be able to receive wheelchair accessible vans, power wheel chairs, patient lifts, ramps and more.
- Questions about the program? Contact Ben Lieman, who is an Assistive Technology Specialist
- RCAL- Resource Center For Accessible Living,INC.
- Open Monday-Friday, 9am to 4pm
- Located at 717 Ulster Avenue, Kingston, NY, 12401
- Main number: (845)-331-0541
- Robert Wright Memorial Equipment Loan Program
- This is through the Upstate NY Chapter of the ALS association
- They carry small items like gait belts or built up utensils, to big items like power wheel chairs and speech generating devices
- Contact your regional care services staff member to see if the item you're looking for is available for loan prior to making any out-of-pocket purchases.
- The Jon Stone Durable Medical Equipment Program:
Would you like to contact an ALS clinic? Call the numbers below for more information.
ALS Doctor Information and Location:
- University of Vermont Medical Center- ALS Clinic
- Neurology-Fanny Allen Campus , 790 College Parkway, Colchester, Vermony 05446
- Phone number- (802)-847-4589
- Fax number- (802)-847-4589
- Amyotrophic Lateral Sclerosis (ALS) Research and Treatment Center
- Upstate Health Care Center, 4th Floor, 90 Presidential Plaza, Syracuse, NY 13202
- Phone number- (315)-464-4243
- Fax number- (315)- 464- 7328
- Healthcare providers: Jenny A. Meyer, MD ; Eufrosina I. Young, MD
- ALS Regional Center - St. Peter's Hospital
- 19 Warehouse Row, Albany,NY 12205
- Phone number- (518)-525-1629
- Healthcare provider: -
Financial Resources:
Qualifying for Medicare: Medicare is a federally funded insurance plan that provides health insurance to those who are 65 and older, as well as younger people with disabilities and conditions that include ALS.
Although, Medicare is not the right path if looking for funding for LONG TERM CARE. If you are able to apply to Medicaid based on your income, take advantage of this.
Talk to your care service provider (social worker, etc.) to see what financial resources are available to you.
If you are a veteran, the U.S. Department of Veterans Affairs administers the health care benefits program for benefits. With an ALS diagnosis and a veteran who served at least 90 continuous days, the VA health program will cover health care services. Talk to the VA and see what services can be provided for you.
ALS Assistance Program
- A quarterly grant program, which can help pay for medical transportation or home modification costs through expense reimbursement. Register to the ALS Upstate New York Chapter and then submit an application and you can contact the ALS Upstate New York Chapter for any other questions you may have.
- This a grant program, which can offset costs for respite services through expense payment. The program can reimburse services that are not covered through traditional funding streams. Register to the ALS Upstate New York Chapter and submit the application below. Contact the ALS Upstate New York Chapter if you have nay questions about this grant.
- The ALS Association Care Connection provides tools and information needed to organize a network of volunteers from your own community to provide help for the person with ALS. To learn more about this opportunity the phone number and email are placed below.
- 315-413-0121 or 866-499-7257
- email: info@alsaupstateny.org
Non-Profit Organizations in the North Country
Sandy's Steps
- Contact information: edgeoutals@gmail.com
- Person of contact: Christina Miller
Below are tools that make daily living activities easier (ADLs)
PSA: This assistive technology list is based off research studies conducted to see which devices were most helpful to those with ALS. This assistive technology may be beneficial to one client but not for another, which is something to be aware of. Some of this assistive technology may be available to try and rent out in the AT lab here at Clarkson University.
Click the colored names of each assistive tech item and it will take you to a website, which holds that item.
**Consult your care team before buying item to see what device is best for you.
- Dressing
- Velcro closures: for handles for clothing and shoes. This could be helpful if you are having problems with your hands
- Dress with loose fitting close like elastics and pull over materials (not AT, but a helpful tip)
- Adaptive clothing
- Long-handled reacher: Helps you pick up objects without bending or with much strain.
- Sock aids: This is a device, which helps individuals put on socks or stockings easily and independently.
- Bathing Communication
- Shower chair: allows person to use less energy by standing in the shower
- Hand- held shower head: It allows you to easily sit in the shower chair and hold the valve so you do not have to move your body.
- Long-handled sponge: Helps you reach parts of your body with little effort
- Tub seat: is a small seat within the tub (can be uses with glass sliding doors)
- Grab bars- Can be securely put onto the wall in the bathtub or near the toilet.
- Elevated toilet seat- re-designed to reduce the distance that a person has to move when they need to sit down on the toilet. By elevating the toilet seat by a few inches, it can make a considerable difference for those who find it difficult to sit and stand from the toilet
- Voice-activated environmental controls like the Amazon brand Alexa or the Google Home device
- Dynavox- communication device
- Attainment Talker- Lightweight, handheld or tabletop, AAC devices with 10 seconds of recording time per message
- MyGaze Assistive 2 EyeGaze System - gaze control of computer programs made easy, which has eye-mouse plat and eye-mouse power
- Tobii PC Eye Mini EyeGaze System - Enables full computer access through windows with eye gaze or eye gaze with switch input.
- Eating
- Built-up handles: on eat utensils, this could be done at home with a simple foam pool noodle cut down, or bought online. Helps with grip on utensils.
- Large handled cup: suitable for both hot and cold items
- Offset spoon or fork (angled right or left): For individuals the lack of dexterity in their hands or arms, by brining the utensil closer to your face
- Long straws: Longer straws enables a person with ALS to drink beverages without choking. Using a straw helps keep the chin down, which helps closes off the airway.
- Food blender: Allows caregiver to blend food when it becomes hard for your loved one with ALS to swallow solid food.
- Plate guard: helps keep food on the plate by reducing spills
- Universal cuff : This can be considered or someone who has difficulty clasping with his fingers but who can raise their forearms
- Mobility
- Powered wheelchair: As a client loses mobility, a powered wheel chair will be the most independent way for someone with ALS can get around their community and home
- Powered wheelchair: As a client loses mobility, a powered wheel chair will be the most independent way for someone with ALS can get around their community and home
- Other
- A gait belt: is an essential tool to transfers, and helps assist a person to sit or stand. Some have buckles while others have Velcro's or handles. Talk to your local occupational or physical therapist to teach how to use this device. Below is a link to Walmart's website of different choices of gait belts.
- Lift chair recliner: if you have upper extremity weakness and trouble getting up and down from a couch or chair, a lift chair can help you conserve energy
- Ramp: A threshold ramp is a small ramp that butts up to a threshold of a standard or sliding door or raised landing to accommodate those that use a wheelchair, transport or power chair, wheelchair, or rollator.
- Contact ALS Upstate NY chapter to see if there is someone to install this at your household
- Switches: Switches are considered "buttons" that can be used to connect to remotes, electronic devices, lights, etc for someone who might be able to use there fingers, but a light touch (***look at our AT Lending Library list, and find several different types of switches)
Apps:
Tips for Caregivers:
Support Groups:
NORTH COUNTRY SUPPORT GROUP
Call- In Groups:
(For these groups you simply dial the number and enter the code on the scheduled day and at the scheduled time to be added to the call.)
- AARP Caregiving
- This app allows you to monitor symptoms, coordinate care with other family members or caregivers, and keep track of appointments and medications.
- CareZone
- This app is considered a health information organizer. It keeps tracks of medical information, organizing medication, allergies, insurance cars , and ID cards all in one place. Caregivers can also create to-do lists to keep track of appointments and medication times
- Symple
- This app is an easy way to keep track of a loved one's symptoms like anxiety, fatigue, and pain over long periods of time. The app allows you to track 10 individual symptoms, and documenting their mood or health shifts throughout.
- Pacifica
- This app is specifically for a caregiver's self care. Caregivers take on a lot of responsibility, which can increase depression, stress, and other health impacts. This app can track a users mood, health, and what may trigger mood shifts. Within the app it holds exercises, meditations, and other ways to help reduce stress and anxiety.
Tips for Caregivers:
- Alert and Safety Systems: Installing a safety system that can notify a caregiver with ALS when they need attention, could really help the caregiver. Emergency alert devices can be connected to landline, cellphones, bracelets, and or other switches in the house. Systems can typically require a monthly subscription. Also devices like "nanny cams" , are cameras that can be installed so you are constantly able to see your loved one when you are not in the room. Occupational therapists can modify switches for your loved one as ALS progresses and they might not be able to stimulate the switches with their fingers.
- Home Automation Systems: These systems can allow people with ALS to open doors, adjust thermostats, and turn on the TV, or many other devices. These devices can be used with limited or no hand function whatsoever. Many cable companies now have full home automation packages that are accessed using a smart phone or tablet device. Contact the AT Resource Center at Clarkson University to see if there is a device that meets your needs.
- Home modifications: Portable ramps are available to buy at existing locations in Watertown, NY, Albany, NY. Portable ramps for thresholds or stairs can provide access for a person with ALS without permanently modifying the home. Also, simple modifications to the bathroom like grab bars that can help assist in the shower or outside the toilet can allow better mobility in the bathroom.
Support Groups:
- In Buffalo on the 1st Tuesday each month
- In Rochester on the last Tuesday each month
- In Syracuse on the 3rd Thursday each month
NORTH COUNTRY SUPPORT GROUP
- In Massena on the fourth Tuesday each month @ 6pm
- Massena Baptist Church, 5 Dover Street, Massena, NY, 13662
Call- In Groups:
(For these groups you simply dial the number and enter the code on the scheduled day and at the scheduled time to be added to the call.)
- General Discussion (open to everyone)
- The 2nd Tuesday of each month at 12pm
- DIAL: 800-768-2983
- CODE: 2088291#
- Caregiver Discussion Group (open to caregivers only)
- The 2nd Thursday of each month at 12pm
- DIAL: 800-768-2983
- CODE: 2088291#
Occupational Therapy and ALS
Occupational therapy is a field that helps clients of all ages across a lifespan. Occupational therapy evaluates how a person with ALS performs daily functional tasks that include personal care, mobility, and work activities. Assessment is made through interview and a functional evaluation for someone with ALS. Occupational therapists are able to give recommendations for assistive technology device, durable medical equipment (wheelchairs, hospital beds ,etc.). An occupational therapist can also provide instruction on body mechanics for both the caregiver and client with ALS. The therapist will be able to give instruction on energy conservation techniques. The OT will be able to speak to you about what barriers you might face in your own home during this huge transition with this disease. They will be able to tell you what level you are at functionally and determine changes you might need to make so you can be as independent as possible through the disease progression.
Talk to your care team, to see what your occupational therapist can do for you.
Energy Conservation Techniques:
(University of Virginia Health System)
Body Mechanics:
You should only transfer someone if you feel confident you can do so. Otherwise, contact your care team or an occupational/physical therapist to help you.
(If you need any more tips on transferring the client with ALS, contact your care team or an occupational/physical therapist to help you)
TIPS
Occupational therapy is a field that helps clients of all ages across a lifespan. Occupational therapy evaluates how a person with ALS performs daily functional tasks that include personal care, mobility, and work activities. Assessment is made through interview and a functional evaluation for someone with ALS. Occupational therapists are able to give recommendations for assistive technology device, durable medical equipment (wheelchairs, hospital beds ,etc.). An occupational therapist can also provide instruction on body mechanics for both the caregiver and client with ALS. The therapist will be able to give instruction on energy conservation techniques. The OT will be able to speak to you about what barriers you might face in your own home during this huge transition with this disease. They will be able to tell you what level you are at functionally and determine changes you might need to make so you can be as independent as possible through the disease progression.
Talk to your care team, to see what your occupational therapist can do for you.
Energy Conservation Techniques:
- Bathing/Toileting
- Try not to take baths or showers that are extremely hot or extremely cold
- When you want to bathe or shower, do it at a part of the day where you feel you have the most energy
- When you are showering, try to avoid standing and use a shower bench or chair so you do not become fatigued
- Dressing
- Plan ahead when picking out your clothes, you do not want to have to travel back and forth between your closet and dresser
- While you are dressing, dress the hardest part of your body first (the one that is makes you the most tired), and then dress the easiest part of your body last
- As you are dressing the lower part of your body, put on your underwear and pants at the same time, so you can pull up both those items at the same time
- While trying to put on shoes or pants, place your ankle over your opposite leg while sitting. It will use less energy doing this and you can do it while pulling on your socks as well. This prevents you from bending over, which causes you to use a lot of energy.
- General Tips
- Avoid using a large amount of energy when it is extremely hot, humid, or cold weather
- Plan your trips ahead of time and try to grab what you need in one or two trips. (Example is getting ingredients for a recipe in the kitchen , try to put it all on the table in one trip)
- Take your time while you are doing an activity, and try to to take rests when you need them
- Avoid pushing yourself to finish a task when you are tired, you will not only be tired that day, but will feel tired the next day as well
- When completing a task try to sit down, whether its getting dressed or cutting vegetables in the kitchen, or using a shower chair to bathe, it will conserve your energy
- Avoid fatigue, and try to either take a rest periods 20-30 minutes at least twice a day. This can be napping or just sitting down.
(University of Virginia Health System)
Body Mechanics:
You should only transfer someone if you feel confident you can do so. Otherwise, contact your care team or an occupational/physical therapist to help you.
- Plan the move
- Stand with your feet apart, knees slightly flexed, one foot forward, and your head and trunk upright and centered
- Get close to the person you plan to lift
- Tighten your stomach and buttock muscles
- Tuck your chin and keep your spine in a neutral position with your lower back slightly arched
- Lift with your legs NOT your back
- Move your feet in the direction of movement. Shift your feet and take small steps rather than twisting at the waist
- Carry weight as close to your own center of gravity as possible
- Coordinate your movements with the person you are lifting. Count "1-2-3- ready and lifting."
(If you need any more tips on transferring the client with ALS, contact your care team or an occupational/physical therapist to help you)
TIPS
- Avoid improper techniques that could cause back injury
- Communicate with whomever you are helping
- Talk to your care team, they know what is best for you and your situation
- Ball LJ, Beukelman DR, & Pattee GL. (2004). Acceptance of augmentative and alternative communication technology by persons with amyotrophic lateral sclerosis. AAC: Augmentative & Alternative Communication, 20(2), 113–122. Retrieved from http://search.ebscohost.com/login.aspx?direct=true&db=c8h&AN=106678421&site=ehost-live
- Beukelman, D., Fager, S., & Nordness, A. (2011). Communication Support for People with ALS. Neurology Research International,2011, 1-6. doi:10.1155/2011/714693
- Connors, K. A., Mahony, L. M., & Morgan, P. (2017). Adaptive equipment use by people with motor neuron disease in Australia: A prospective, observational consecutive cohort study. Disability and Rehabilitation: Assistive Technology,1-6. doi:10.1080/17483107.2017.1396623
- Fried-Oken, M., Fox, L., Rau, M. T., Tullman, J., Baker, G., Hindal, M., . . . Lou, J. (2006). Purposes of AAC device use for persons with ALS as reported by caregivers. Augmentative and Alternative Communication,22(3), 209-221. doi:10.1080/07434610600650276
- Henschke, C. (2012). Provision and financing of assistive technology devices in Germany: A bureaucratic odyssey? The case of amyotrophic lateral sclerosis and Duchenne muscular dystrophy. Health Policy,105(2-3), 176-184. doi:10.1016/j.healthpol.2012.01.013
- Hwang, C., Weng, H., Wang, L., Tsai, C., & Chang, H. (2014). An Eye-Tracking Assistive Device Improves the Quality of Life for ALS Patients and Reduces the Caregivers’ Burden. Journal of Motor Behavior,46(4), 233-238. doi:10.1080/00222895.2014.891970
- Marchetti, M., & Priftis, K. (2014). Effectiveness of the P3-speller in brain-computer interfaces for amyotrophic lateral sclerosis patients: A systematic review and meta-analysis. Frontiers in Neuroengineering,7. doi:10.3389/fneng.2014.00012
- Nordness, A. S., Ball, L. J., Fager, S., Beukelman, D. R., & Pattee, G. L. (2010). Late AAC assessment for individuals with amyotrophic lateral sclerosis. Journal of Medical Speech - Language Pathology, 18(1), 48+. Retrieved from http://link.galegroup.com/apps/doc/A221413517/PPNU?u=nysl_nc_clarku&sid=PPNU&xid=5a0f3f13
- Schettini, F., Riccio, A., Simione, L., Liberati, G., Caruso, M., Frasca, V., . . . Cincotti, F. (2015). Assistive Device With Conventional, Alternative, and Brain-Computer Interface Inputs to Enhance Interaction With the Environment for People With Amyotrophic Lateral Sclerosis: A Feasibility and Usability Study. Archives of Physical Medicine and Rehabilitation,96(3). doi:10.1016/j.apmr.2014.05.027
- Energy Conservation - University of Virginiahttps://med.virginia.edu/.../wp.../Energy-conservation-and-ALS-on-letterhead.docx
