Sometimes known as Motor Neuron Disease (MND) or Lou Gehrig’s Disease, ALS (amyotrophic lateral sclerosis) is a degenerative disease causing gradual paralysis of muscles in the body. The progression of the disease is such that the sufferer will slowly require increasing levels of attention and care, putting a strain on the resources and emotions of everyone involved.
If you need help living with ALS, this is a good place to start. The following tips can help ease the burden on patients, their families, and their caregivers.
From the initial diagnosis, you’re going to be presented with an overwhelming amount of information and choices to make. Working out what’s best for you or your loved one is always stressful, but it can help if you:
- Take the time – Since ALS in its primary stages is a very slow-moving disease, you do have more time than you think to make the right decision. Don’t rush into anything, as a few days’ consideration won’t make a difference.
- Educate yourself – Read up on every reputable source you can find about ALS, and make sure to ask your doctors every question you can think of (it helps to have a list prepared). Don’t always believe what you read on the internet, either.
- Fully consider clinical trials – As there is currently no cure for ALS, you may be offered participation in an ongoing clinical trial. Make sure you consider both the positives and the negatives before you sign up. These trials do not guarantee results, and you may end up in a worse emotional, financial, and physical position than before.
Your Support Network
Like at any critical moment in your life, having the right support network is crucial. Make sure you:
- Ask for help – This is especially important for family members and caregivers, who can easily burn out on 24/7 care. Don’t take the emotional and physical burden on all by yourself. Don’t be afraid to ask those around you to share your difficulties and workload.
- Be ready for difficulties – It can be worryingly easy for anyone involved in the ALS struggle to slide into depression, and incredibly difficult to get out of it. Know and recognize the warning signs and see a mental healthcare professional if you think you’re going in that direction.
- Reach out to a community – The internet has made it much, much easier to connect with people in similar situations. Robust and welcoming communities exist for ALS patients and their support networks, and they are happy to share further ALS patient tips. Search for them, join them, and participate.
Technology and ALS
Newer technology has given ALS sufferers more hope than ever before. It may not prevent the disease, but it does enrich their quality of life and let them be defined by who they really are, not their illness.
Communicative technology is especially important in this regard and well worth investigating. There are devices which synthesize speech, direct brain and computer interfaces, eye gaze control systems, and even software that records and stores your voice before vocal cord degradation sets in.
Assistive devices also extend to mobility, which will become increasingly difficult for the patient and will require home adjustments. One such device is our atHand® Overbed Table System, which allows for comfort and convenience during bed rest, with minimal reaching and muscle usage. The generous storage space and tray area mean you can have everything within reach, and inbuilt USB and power outlets provide an easy and safe way to charge any device without leaving the bed.
Discover the difference an overbed hospital table can make to both those living with ALS and the people who care for them. Visit our online store or call (440) 628-9550 today.