• Resources
  • Assistive technology
  • Tips for Caregivers
  • How Can Occupational Therapy Help?
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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
Would you like to speak to someone about home modifications? Call the numbers below for more information.

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


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. 
    • 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.

​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.
Caregiver Respite Program
  • 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. 
Care Connection Program 
  • ​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. 

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.


​​​​
Apps:
​
  • 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
All meetings are at 6:30 PM at the Dent Neurologic Institute (3980 Sheridan Drive, Amherst)
  • In Rochester on the last Tuesday each month
All meetings are at 7:00 PM at the Pieters Family Life Center (1025 Commons Way, Rochester)
  • In Syracuse on the 3rd Thursday each month
All meetings are at 6:30 PM at the Hospice of CNY(990 7th North Street, Liverpool)

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:
  • 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

What is ALS?

Amyotrophic Lateral Sclerosis is a progressive, degenerative neuromuscular disease. ALS is also commonly known as "Lou Gehrig's disease". The incidence of ALS is 2.0 per 100,000 people, and is diagnosed in approximately 5,000 people in the United States each year (Pedretti, 2013). 

​Forms of ALS:

Sporadic- makes up 90-95% of the ALS population 

Familial- makes up 5-10% of the ALS population 

What are the subtypes of ALS?

Progressive bulbar palsy (bulbar form)- This a type of motor neuron disease which affect the nerves in the bulbar muscles. Bulbar muscles are the muscles that control speech, swallowing, and chewing. This type of ALS results in weaknesness of the facial muscles and tongue. Additional symptoms are pronounced weakness of the arms and legs, or emotional outbursts. 

Progressive spinal muscular atrophy (motor neuron form) - Marked muscle wasting of the limbs, trunk, and sometimes the bulbar muscles.

Primary lateral sclerosis- Progressive spastic paraparesis