Assistive Devices and Adaptive Equipment
CurePSP has collected the following suggestions for assistive devices and adaptive equipment from patients and families experiencing neurodegenerative diseases. While we hope you find these suggestions useful in your journey, none of CurePSP, its employees, officers or directors, has made any investigation of the suggestions made or products mentioned below. Accordingly, none of such persons can make any representation as to their effectiveness or safety. As always, you should consult with your health care provider before changing your patient care routine or with any question as to the efficacy of any of the products mentioned below, nor should it be implied CurePSP endorses and recommends these devices and equipment, they are merely a sample of what is available.
To add device suggestions to this list, please email woods@curepsp.org.
Vision issues may occur at any time, especially in PSP. Abnormalities with eye moements is something that neurologists will asses, which is why they often have you follow ther finger and move your eyes in different directions without moving your head. In addition to an impaired ability to move eyes up and down, other symptoms may include double vision, abnormal eyelid movement, difficulty blinking, and dry eyes. If you experience changes to your vision, especially if they interfere with your daily functioning and quality of life, you can be assessed by a neuro-ophthalmologist. Additionally, occupational therapists can provide strategies to continue to do daily activities with visual changes. PSP, CBD and MSA can cause weakness and incoordination of throat muscles, making it more difficult to swallow. This issue increases the risk of food or liquids going into the lungs, which is called aspiration, and can lead to pneumonia. Your doctor may recommend regular examinations of your swallowing function to make sure food and liquid are going down the right way. Additionally, speech-language pathologists can help assess swallowing function as well as provide recommendations for diet and lifestyle modifications and exercises for the throat in order to make swallowing easier and safer. Due to the common issues with swallowing in PSP, CBD and MSA, buildup of phlegm and mucus can occur in PSP, CBD, or MSA. Speaking with a speech-language pathologists to evaluate swallowing can help alleviate this issue as well as these recommendations below. Maintaining good oral hygiene will help prevent future problems with infection and pain. It will also promote the care receiver’s integrity and comfort. There is another important reason for the person to maintain good oral hygiene. As the disease progresses, swallowing problems develop because of throat muscle weakness and coordination. Good oral hygiene may not prevent aspirating during eating and drinking, but it will minimize additional bacterial growth in the mouth that could be aspirated during coughing or choking spells. As these conditions progress, overall hygiene becomes more difficult due to balance and vision problems; stiffness and slowness of movement. All contribute to difficulty for the person diagnosed in maintaining their general hygiene. Seeing an occupational therapist can be helpful for maintaining independence or reducing caregiver burden for basic self care. Incontinence and constipation are fairly common as PSP, CBD and MSA progress. Often the person diagnosed has balance issues and is at risk for falling, especially overnight. Falls in the bathroom can be especially dangerous due to hard sharp surfaces in a bathroom. Occupational therapy can hep with equipment recommendation and training to prevent bathroom falls. As PSP/CBD/MSA progresses, individuals with these diseases and their care partners must cope with the changes in their mobility, especially to prevent dangerous falls. A Physical Therapist plays an important role in the management of one’s mobility changes that occur as the disease progresses. They also make recommendations and provide training for equipment and devices that can make mobility easier and safer. The proper lift or assistive device makes a significant difference in the care partner’s ability to lift and transfer their loved one. For example, transferring their loved one from a wheelchair to a toilet, or lifting them to help get out of bed. These fall into 2 general categories: 1) devices and techniques to strengthen and amplify one’s voice and 2) devices when speech abilities no longer meet communication needs. Speech Therapists are familiar with both categories, and they should be consulted before purchasing a device because there are many ones from which to choose, and new devices are being developed regularly. Be mindful that some devices require good dexterity and often loss of dexterity occurs at the same time as does loss of voice. Category 1: Category 2: People with PSP, CBD or MSA develop a symptom known as impulsivity. To prevent unnecessary falls, care partners have found using one or more of the devices listed below has provided an alert for the care partner and has protected the patient from unnecessary falls. For the purpose of comfort and ease of dressing or undressing, our care partners and patients have found the following list of clothing, shoes, etc. very helpful. As an example, sometimes when it’s necessary for the care partner to assist the patient with toileting, easily removable pants makes the job much easier for both involved. Seeing an occupational therapist can be helpful for maintaining independence or reducing caregiver burden for basic self care. The following list are recommendations from many of our care partners and are used for various purposes. You can google many of these devices. Taking prescribed medications is vital to managing the symptoms related to your neurological diagnosis as well as other diseases you may need to manage. At times, it can be a challenge to remember to take your medications. Or you may want to proactively set up good habits and routines. If managing medications is a challenge for you, try these suggestions and talk to your healthcare team (including neurologist, occupational therapist and pharmacist). Ask a family member, friend or professional caregiver to check the medications you are taking in order to increase the likelihood of taking medications correctly and on time
Lending Closets
Medical Lending Closets are donation sites that give or lend medical products, equipment, and devices. Lending Closets provide a much-needed alternative to purchasing such supplies outright. Many people who use a Lending Closet do not have insurance, or have already maxed out on their insurance coverage for these types of items. In addition, certain medical supplies are not covered by insurance at all. In addition to loaning out products, Medical Lending Closets also readily accept contributions of used equipment.
At Lending Closets, the items are clean and in good working condition. In some cases, they can be returned after use. Supplies are distributed on a first-come, first-servedbasis. Because of the frequent change in availability of goods, we suggest that you call ahead to ask if particular articles are in stock. Please note that Lending Closet sites and their respective auspices vary from locality to locality, city to city, state to state. Therefore, we are providing you a broad list of suggestions, with the understanding that resources will differ from place to place. Among the first places we recommend contacting are: your local Area Agency on Aging and senior center. Also, for those people who have an occupational therapist, you might ask if they have information on local lending closets.
Finally, we suggest that you consult with your medical team – physician, physical therapist, or occupational therapist – before selecting a specific kind of adaptive or mobility equipment. There are a wide variety of products on the market, and you want to find out which one is right for you and your individual symptoms or needs.
The types of organizations that may lend medical supplies and assistive devices:
Adult Day Centers
- Area Agencies on Aging
- Churches, Synagogues, and other faith/worship congregations
- Departments/Councils on Aging
- Disability Services
- Fire Departments
- Human Services Departments
- Lions’ Clubs
- Parishes
- Parkinson’s Disease Chapters
- Parkinson’s disease Exercise Classes
- Parkinson’s disease and PSP/MSA/CBD Support Groups
- Senior Centers
- Senior Services Departments of local townships
- Senior Volunteer Networks
- Township Offices
- Village Halls
Using an online search engine, patients and families may locate a local lending closet to access or borrow equipment listed above. Helpful keywords to include when doing a general computer search for lending closets are:
- Durable Medical Equipment
- Federal agencies, e.g. Disability Services: usa.gov; Social Security: ssa.gov; National Association of Area Agencies on Aging: www.n4a.org; Administration on Aging: acl.gov
- Health Equipment Loan Programs
- Medical Equipment Loan Closets/Town/State
- Medical Lending Organizations
- National, Not-for-Profit, Disease-specific Organizations, such as Muscular Dystrophy Association: mda.org; ALS
Smart Patients Forum
CurePSP is proud to partner with Smart Patients to bring you this forum. We hope to create an online community where patients and families can learn and connect over symptoms and effects, learn practical tips from similar experiences, and share your hard-earned knowledge with those who need it most. Many of the suggestions above were shared on Smart Patients and we encourage you to join the community. Visit our Smart Patient forum here.
Smart Patient Participant Testimonials
- “The Smart Patient forum provides me with practical information on how to deal with my condition that I’d never heard of before my diagnosis and knowledge that I’m not alone. The stories and support from others are very soothing and helpful.” – CBD Patient & Smart Patient Participant
- “I was not aware of the Forum until after my wife died, however it has helped me in two ways – first, I regularly learn something new from the Forum responses, which in turn helps me answer questions that come up in my volunteer role as a Peer Supporter and Support Group facilitator. Second, I find if I can give a suggestion to one who has posted a question on the Forum, it not only gives me satisfaction that I have helped someone, it also has helped me with my grief as I am being of service others, who’s loved one is on this difficult brain disease journey.” – CurePSP volunteer, Former PSP caregiver, & Smart Patient Participant