Amyotrophic Lateral Sclerosis is better known as ALS or Lou Gehrig’s disease. Most people know very little about this disease, although about 5000 new people are diagnosed annually in the U.S. alone. If you are reading this page, then we can assume that you are searching for answers on how to assist a loved one with ALS.
By now, you likely know the statistics and hard facts about the disease. However, it is worthwhile to note that the progression of ALS is different for everyone. While an ALS diagnosis is devastating for the patient and their loved ones, the disease’s progression is far from a straight line. Though transient, there have been cases of arrests, reversals, and improvements with regards to lost functioning.
Remember that this is their story
Regardless of your relationship with the person diagnosed with ALS, keep in mind that this is their life, and it is their prerogative to whom they choose to divulge their diagnosis. Some people would prefer to keep the information to themselves until the symptoms progress or until they feel comfortable talking about it in public. Others may want to tell everyone. Appreciate that you are privy to the information and follow their lead regarding who to speak with.
Remember they are the same person
A diagnosis of ALS and the resulting loss of function rarely affect intellect, personality, or hearing. They are the same person that you have always loved and will enjoy the same movies, books and interests they always have. Try to continue your relationship and routines as before, and avoid seeing them as a patient. They will have plenty of doctors for that.
Remember to listen before you act
The loss of independence can be the most challenging aspect to accept. Additional help will be needed by trained professionals treating ALS; however, it is essential to treat people with dignity and ask if they need help before jumping up and getting involved. Being a good listener can be the best assistance of all.
Remember that carers need help
Caring for someone with ALS can be both mentally and physically exhausting. You may also be under additional financial strain from medical expenses and having a limited household income. Remember that if you do not prioritize your own needs, then inevitably, you won’t have the capacity to assist others. There are several ALS online and in-person support groups that will be available to listen, understand and offer advice if requested.
Remember to reach out
You might not be physically able to be in the same room as your loved one with ALS. However, this doesn’t mean that you can’t be of assistance. Stay in touch virtually with emails, photos, and video calls. If you wish to do more, don’t forget about the power of the collective voice. You might recall the Ice Bucket Challenge that went viral on social media. Thanks to this campaign, researchers had the funds to make significant advancements.It is essential to keep the lines of communication open and provide moral support in small ways like cooking a meal or having a catch-up online. A diagnosis of ALS is challenging to come to terms with; however, remembering that your loved one is the same person they have always been is paramount.