ALS in the Heartland is privileged to be able to provide over 400 equipment items for free to ALS patient families in Nebraska and western Iowa.  Many are pictured here on the agency’s website.  We are also often able to help purchase needed items that are not currently available for loan, so please do not hesitate to contact the agency with any equipment needs.

Jeanette Obal, Occupational Therapist:
To feed oneself with greater ease, consider these options: (more…)

Hi Rhonda,
That is a great question and we went to a national ALS organzation (ALS TDI) for the answer. Here is their response: Sabrina Parker was diagnosed at 15 and passed away sadly at 16: http://www.thaindian.com/newsportal/world/sabrina-parker-the-youngest-als-patient-leaves-her-last-breathe_100476803.html. There is also an ALS patient up in Minnesota who was diagnosed at 17. Thankfully, his progression is slow and four years later he’s still doing well. There was also a 14 year old patient from Kansas who was diagnosed and passed away before she was 16. I don’t know that there is an official documentation of the youngest patient…but, these are a couple of people who have faced this horrific diagnosis at a very young age.

No matter what the age, this is a disease we will continue to fight with all we have. Sabrina Schalley

Jeanette Obal, Occupational Therapist:

• Family Practice or Internal Medicine Physician – This could be your family doctor. This physician can be the one that coordinates all of your care and takes the information of specialists and puts it all together;
• Neurologist – Physicians that specialize in the care of people with disorders of the nervous system (which includes ALS);
• Pulmonologist – Physicians that specialize in the function of the lungs. If assistance is needed with breathing, this doctor will address that;
• Physical Therapist – This professional can recommend aids for walking and teach the patient and the caregiver the safest and best way to transfer. The weakness of ALS does not improve with exercise, however the therapist can show you the best ways to use the muscle function and strength that one has;
• Occupational Therapist – This professional looks at how ALS affects ones ability to care for oneself as it relates to day to day activities. They can recommend equipment for your home or workplace that can allow you to perform activities that are meaningful to you;
• Speech Therapist/Speech Language Pathologist – This professional is skilled in communication as well as swallowing disorders;
• Respiratory Therapist – This professional works with the physician when it comes to the use of breathing aides such as oxygen, C-PAP or BI-PAP and the use of a trache or a ventilator if that type of assistance is needed and desired;
• Social Worker – The social worker can connect the patient and family to community resources for financial and emotional support. There are support groups available in many communities.

Jeanette Obal, Occupational Therapist:

• Keep in mind that it is harder to stand up from a low surface than from a high one. Add height when you are able to make standing up easier;
• Scooting forward is easier on a smooth, slippery surface so put a slicker piece of material on top of a more textured surface;
• There are a number of mechanical lifts available for safety for both the ALS patient and the caregiver. Some of them are named ‘sit to stand lift’ or hoyer lifts. There is a sling that fits around the person being moved and that attaches to a machine that does the lifting. A durable medical equipment store carries these devices and a physical or occupational therapist can show you how to safely use these.

Jeanette Obal, Occupational Therapist:

• Ask your Doctor for a referral to a speech pathologist for the best strategies to address difficulty speaking;
• There are lots of low-tech ways to communicate including dry-erase boards, paper and pen, picture boards with words and phrases. To summon help, bells, horns, baby monitors and emergency call systems are available as well as keeping cordless phones and cell phones at hand;
• There are more high-tech ways of communicating including computers that are operated by whatever movement is available including eye movement. The speech pathologist may prescribe augmentative communication-devices that supplement whatever you are able to do to allow you to communicate.

Jeanette Obal, Occupational Therapist:

• It’s important to see the doctor when your loved one begins to have difficulty swallowing. The doctor may prescribe a swallow study or a barium swallow to better see where the trouble is. You may also want to see a speech pathologist who can help you figure out ways to safely eat, drink, and swallow;
• Thicker liquids are often easier to swallow than thin liquids. Try tomato juice, apricot nectars and other liquids with more consistency. Cream soups are usually easier than a broth based soup. There are thickening agents one can buy to add to thinner liquids;
• Difficulty swallowing is an especially important thing to address as soon as a problem is noted because having liquid ‘go down the wrong pipe’ can lead to pneumonia and aspiration (taking in liquid where air should go).

Jeanette Obal, Occupational Therapist:

• Add a bed rail for help getting in or out or rolling in bed. There are rails available that slide between the mattress and box spring;
• A hospital bed allows adjustment of the head and foot of the bed by remote control. A semi-electric bed adjusts the head and foot and a fully electric bed also adjusts the bed height with a control. A hand crank adjusts the semi-electric bed;
• Adjust for more height of the bed by putting boards under the frame or lessen the height by taking off the wheels of the frame or putting the mattress and box spring on the floor;
• Wedges are available to elevate the head or place folded blankets between the mattress and box spring to raise the head or foot of the bed.

Jeanette Obal, Occupational Therapist:

• Sit in a firm seat that has arm rests. A soft cushion-y seat is difficult to stand up from;
• Put a platform under the chair legs to raise the height. Put folded blankets in the seat of the chair for extra height. Pillows tend to squash down; a blanket is firmer;
• Consider a lift recliner. It’s an overstuffed chair that has a motor to assist from sitting to standing;
• Replace your toilet with a handicapped height toilet, add a toilet riser to increase the stool height, and/or add armrests or grab bars;
• Sit on a higher stool to rest during cooking or when you’re doing anything at the sink;
• When you have trouble walking, there are a variety of canes that can be helpful. They may have a single point at the end or 3 or 4 points for more stability. Hold the cane with the hand on your weaker side;
• For more support, there are walkers. They come with wheels that sometimes are easier to move. Some also have a seat, carrying basket, and brakes;
• If you need a wheelchair, there are a wide variety from lightweight transport chairs (it has 4 small wheels) to a standard wheelchair to a power scooter to a power wheelchair. The cushion is as important as the chair. A doctor’s prescription is needed for a wheelchair . Work with an Occupational or Physical Therapist to get the chair and cushion that best fits your situation. Check for a company that will provide your chair as well as any maintenance that might be needed.