The following is a set of useful information which may be helpful to ALS patients and their families and caregivers. In many cases the information is provided through links to other websites
ALS is not only a terrible disease for which there is no known cure, but is also a debilitating disease that makes each day a challenge to living a normal life. We also know that those persons having the disease rise to a new appreciation of life. Through their spirit they are continuously teaching us that same appreciation.
We all want medical science to find a cure for ALS. Progress is being made but a cure is still some time in the future.
Hearts for ALS is an all volunteer organization that is dedicated to making the lives of the ALS patients as comfortable and useful as possible.
Looking back on April 2002, my husband and I returned home from a doctor’s appointment with tears in our eyes. My husband rarely cries. We were faced with telling our two children that their Dad had ALS. The doctor had told him he had twenty months to live and prepare for the worst. The rest of that night was filled with crying and hugging, and my husband saying that he “wanted to hug, kiss, and speak to us while he still could.” We knew our lives would change forever, but we were seeking HOPE for the future. But what is ALS? We began searching for answers. We turned to the internet to get information.
The internet gave many different opinions, but no answers. We found many different remedies people had tried but none had any proven affects. Then we journeyed to many different doctors. We HOPED for a different diagnosis. After many assessments, MRIs, EMGs, nerve conduction tests and lab work, the conclusion was always the same. My husband had amyotrophic lateral sclerosis.
I remember thinking now what? Where do we go from here? Our minds were filled with questions. We began attending a monthly support group at Loma Linda University. At first, my husband did not want to attend. He did not want to see what he would look like as the disease progressed. He soon realized that everyone with this disease has the same questions, concerns and a need for HOPE. Even though the original time frame was twenty months, my husband is still with us today. Our life has changed in many ways. My husband is in a power wheelchair and can no longer feed himself. However, our life has remained the same in many ways. We still go to our son’s baseball games, go shopping in the mall, go on vacation, and visit with family and friends.
Hearts For ALS has put together the “Hope Bags.” We know that you have many of the same questions, concerns and need for HOPE. This “Hope Bag” will provide a starting point for your journey with ALS. Please visit our website (heartsforals.org) and know you are not alone.
Here is a list of items that may get you the information and support you need.
- Sign up with the ALS Association (www.alsala.org). Provides information, local case managers, medical equipment (loan closet) support groups, research trials and advocacy.
- Sign up for the Muscular Dystrophy Association (www.mdausa.org). Provides information, ALS awareness, research trials and patient services.
- Visit (www.heartsforals.org). Provides tips from people with ALS such as traveling, eating and community services.
- Apply early for social security disability (www.ssa.gov). There is no waiting period with the ALS diagnosis, although it may take several months to process the paperwork.
- Apply for Medical Baseline for gas and electricity. This will help offset the increased need for gas and electricity. Your doctor’s office should have the forms.
- Obtain handicap placard or license plate. This will help reserve your energy even if you can still walk. Your Doctor’s office should have the form.
- Obtain a handicap telephone (877) 546-7414. Contact your local telephone company for this free service.
- Request a case manager through your insurance company. The case manager can be your greatest advocate to get your medical needs covered.
- Obtain an advance health care directive and power of attorney. Provides peace of mind as you journey forward. Consult your attorney.
When making plane reservations…
- Ask for special needs phone number, to make sure your needs are met.
- Ask for a bulk head seat on the aisle-this seat has extra room to transfer
- Make sure the airlines know you need pre boarding
- Request aisle wheelchair to be available
At the airport…
- Make sure you give yourself plenty of time
- Medications should remain in labeled bottles or note from MD
- Remind them you need aisle wheelchair and pre-boarding
- Some airports have family restrooms / single room restroom so caregiver can help.
- Bring food that you can eat. Airlines no longer give you food on the plane.
- Make sure your caregiver can handle the transfer as airline attendants are not trained.
If you have family meeting you at the airport you can get special permission in advance to have them meet you at the gate.
On the plane…
- Tailbone will get sore from sitting still-bring pillow or move frequently.
- Make sure caregiver understands safety guidelines and can assist you in case of an emergency.
- Bring your own headphones for movie. Provided headphones are difficult to keep in ears.
- Difficult to get up to go to bathroom. Males can bring a urinal or request aisle wheelchair to get up.
Handicap hotel rooms…
- Call around when making reservations to get room that services your needs
- Some rooms have roll in showers and some have tubs.
- Does the shower have a bench or do you need to bring a shower chair?
- Is there enough room to get around with a wheelchair?
- Continental breakfast usually has plastic utensils which may be hard to use.