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Commonly Asked Questions
General
Feeding Tubes
Question: How do I access walking disability privileges, a handicap placard for my car or a handicap license plate in Northern New England?
Answer: www.dmv.org is a national website that provides a response to this question. Please see direct reference for each state:
For state specific resources, please see below:
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Question: What are AAC Devices?
Answer: AAC means augmentative alternative communication. AAC refers to a system used either to augment existing speech issues or to serve as an alternative speaking device when there is little to no speech. AAC devices make communication easier for a person who has speech difficulties or who has lost their natural voice. An aided AAC system is one that utilizes an external device. Examples are voice output communication devices and computers. It is important to note that while technology is an asset, low-tech options are also handy and can be used while one is waiting to acquire a communication device or in conjunction with an AAC device. Communication boards are visual supports and can be letter boards, boards with words and letters or picture boards. PALS can point to or look at letters, words or pictures to communicate. These are handy to have in places such as the bathroom where it may not be as easy to have an AAC device. Additionally, they are a wonderful back up system should there be a power outage or problem with an AAC device. Patients and their families can also download pictures from the Internet and make their own communication boards. For more information on communication boards and/or software, check out Mayer-Johnson at http://www.mayer-johnson.com/
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Question: What is voice banking?
Answer: Voice banking involves recording the person with ALS' voice before their speech is affected so that their own voice is used (in the future) as a means to communicate. In essence, it involves recording files of one’s voice on a PC. A digital file can be made and stored on most personal computers. The file can then be uploaded and played back on specific AAC (communication) devices. Many folks can actually access a sound recorder in the Accessories file if they have a recent edition of Windows.
A popular program for voice banking is called Model Talker. This program synthesized an electronic voice based on samples of the patient’s voice. INVtool is the voice banking software for model talker. Patients are given a word inventory which takes about 15 to 20 hours to complete. The inventory consists of common phrases that are utilized in day to day living.
Ask your speech and language pathologist for more information or log onto: http://www.modeltalker.com/
Or, try these recommendations from DynaVox Technologies:
http://www.augcomsol.com/documents/ALS-SavnVoicFlsOnYorPC.pdf
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Question: I am having difficulty with my hands and arms and could use a toilet aid for hygiene purposes. What could I use?
Answer: A self wipe toilet aid. It is a hygiene aid for people experiencing difficulty with their hands and/or arms and supports you to function independently when using the toilet. The aid has a clamp in which to use the toilet tissue that can be released when ready to discard. It does not touch the water and is made of sturdy plastic. There are several companies that sell them. One of the more inexpensive versions can be found at www.activeforever.com
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Question: What is a bidet and where can I purchase one?
Answer: A bidet looks like a toilet. It has warm-water jets for personal hygiene after you go to the bathroom. Toilets can also be converted into bidets. Many pALS have found bidets to be useful in their day to day living.
Check out these resources for options:
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Question: How do I learn more about Medicare?
Answer:There are two key resources to support you to learn more about Medicare coverage. ‘Dear Marci’ is a service of the Medicare Rights Center (MRC) and is the largest independent source of Medicare information and assistance in the United States . It is a service that supports people with disabilities and older adults to receive current information on commonly asked questions and provides information on how to acquire affordable health care. Check it out at: http://www.medicarerights.org/
Another resource is http://www.medicare.gov/. This link provides overviews of Medicare and its different parts. It also contains a place where you can type in the name of your state and the coverage information you are seeking and it will let you know if your state provides that coverage i.e. durable medical equipment.
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Question: I am a caregiver for my loved one with ALS and I am coming down with a cold. What can I do to try to avoid passing it on and compromising my loved one’s health?
Answer: A cold is a virus and can compromise the respiratory function of an ALS patient. As the primary caregiver, if you develop a cold, it is helpful to wash your hands frequently, to wear a mask when engaged in direct contact with your loved one and to sleep in a different room until you have recovered. Please note that a cold generally affects people for 7 days. Drink lots of fluids and take Vitamin C to expedite the process of getting over the cold. If possible, arrange respite to get adequate rest and to limit contact with the patient. If the patient develops the cold, it is important to seek medical attention to insure their well-being. It is also important to note that in conjunction with colds perpetuating difficulty with respiratory function, many ALS patients have difficulty blowing their noses and therefore are more susceptible to acquiring sinus infections. Please direct further medical questions to your doctor who can more readily speak to your particular health issues.
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Question: What is a transport wheelchair?
Answer: A transport wheelchair is a light weight wheelchair that is easier for a caregiver to maneuver in and out of their vehicle and around town. They generally weigh between 14 19lbs. Many transport wheelchairs have smaller wheels and are not self-propelling. Some companies carry transport wheelchairs that can transform into a standard wheelchair so the individual can push themselves.
When contemplating whether to acquire a transport wheelchair, it is important to consider which category is most suitable for one’s needs. They generally come in standard transport, lightweight transport and heavy duty transport. Weight capacity is also a key consideration. Be sure to ask about features. Features to consider include elevating leg rests, frame color options, seat widths, fold-down back and brakes.
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Question: What is a feeding tube?
Answer: A feeding tube is a small, flexible tube, about the diameter of a pencil, used to allow liquid nourishment to enter the stomach directly, bypassing the mouth, throat and esophagus. It is often called a PEG (percutaneous—through the skin; endoscopic into the GI tract; gastronomy—hole in the stomach) tube.
Many people living with ALS develop dysphagia (difficulty swallowing) at some point. This can lead to malnutrition and weight loss. This accelerates the progression of muscle wasting and weakness. Inadequate fluid intake may also become a problem as swallowing difficulties increase.
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Question: What are the benefits of having a feeding tube?
Answer: There are a number of benefits.
- It allows for adequate nutrition even if taking in enough food by mouth has become difficult or impossible due to the amount of time and effort involved in moving food to the mouth, chewing and swallowing it.
- It allows for bypassing the mouth and throat so that choking does not become a problem and food does not inadvertently pass into the airway, causing choking and increasing the risk of pneumonia.
- It makes it much easier to maintain good hydration once drinking liquids becomes difficult or even unsafe.
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Question: Once I have a feeding tube, will I still be able to eat and drink?
Answer: It depends on when a tube is placed and how difficult eating and drinking have become. Many pALS have them inserted early so that they will be there when eating and/or drinking become problematic. It is also often recommended to have them placed early before respiratory problems arise as there is less risk from anesthesia at that time.
When inserted early, it is common for a person to continue to eat in the usual way. As that becomes difficult, it is easy to eat or drink the amount that can be consumed with safety and enjoyment and then make up for the additional calories and/or required hydration by using the tube to supplement the amount taken by mouth.
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Question: How can I modify my diet to make eating and swallowing easier and safer?
Answer: If chewing and swallowing become difficult, it will be important to change the consistency of the foods to make them easier and safer to swallow. Meats and casseroles will need to be chopped into small pieces. Vegetables should be well cooked, and fruits should be soft or cooked, with skins removed. All foods should be well moistened with gravies, butter or margarine, or sauces to make them easier to swallow. Dry, crumbly foods should be avoided. These include such things as crackers, chips, popcorn, muffins, donuts, cakes, etc.
It will be best for foods to have a blenderized consistency.Suggestions include:
- Moist ground or pureed meat and poultry
- Tender fish without bones
- Eggs
- Creamy cottage cheese
- Yogurt
- Ice cream without nuts, raisins, or candy
- Milk, buttermilk (if thin liquids are tolerated), and milkshakes
- Bread or toast buttered or dunked in liquid
- Cold cereal soaked in milk or cream
- Cooked cereal
- Pancakes soaked with syrup or fruit
- Pasta
- Casseroles
- Rice with gravy or sauce
- Moist cookies or quick breads without coconut, raisins or nuts
- Baked, mashed or boiled potatoes with gravy, cream, or margarine
- Soft, fresh or canned fruits with seeds, pits, and skin removed
- Chilled applesauce or pureed fruit
- Poached fruit in gelatin
- Ripe bananas
- Soft canned or well cooked fresh or frozen vegetables
- Scalloped tomatoes
- Thick soups such as cream soups or thickened broth-based soups (any vegetables should be well-cooked)
- Fruit whips, gelatins, cobblers, apple or peach crisps
- Moist cookies without nuts or raisins
- Custards, puddings
- Hard frozen sherbet or ice cream
To thicken foods and liquids, try:
- Adding mashed potatoes, potato flakes, sauces, or gravies to pureed vegetables, casseroles or soups
- Adding plain gelatin, cooked cereal, or flaked rice cereal to pureed fruits
- Cooking canned fruit with tapioca or corn starch to create a thick pie-filling texture
To thin foods or make dry foods moist, try:
- Adding broth, gravies, sauces, milk, cream, butter, or margarine to hot foods
- Adding fruit juices, pureed fruit, cold milk, cream, yogurt, or liquid plain gelatin to cold foods
To make your foods softer, try:
- Using your favorite foods in casserole recipes when suitable
- Grinding meats with vegetables in a blender or food processor
- Mashing fruit or vegetables
- Cooking meat in broth or soup to keep it moist
- Poaching fish in milk to keep it soft
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The ALS Association Northern New England Chapter
