ALS awareness

Last week, we discussed Parkinson’s disease and the ways to relieve an elderly loved one’s symptoms. This week on the Griswold Blog, we’re going to be following a similar format, but with amyotrophic lateral sclerosis (ALS).

Organizations working to fight ALS, including the ALS Association and the Muscular Dystrophy Association, have dedicated the month of May to raising ALS awareness by hosting activities and seminars across the country. So we’re going to follow suit — on a smaller scale, of course — and help raise your ALS awareness with our next three blog posts.

First, the bullet point basics:

  • ALS is precipitated by the gradual death of nerve cells that control muscle movement, which in turn causes muscles to progressively weaken and waste away.
  • The cause of ALS is unknown, but researchers are studying several possibilities, including gene mutation, chemical imbalance, autoimmune responses and the mishandling of proteins within nerve cells. 
  • One in 10 cases of ALS is inherited, with the rest appearing to occur randomly.
  • ALS usually occurs between the ages of 40 and 60.
  • Early signs and symptoms include difficulty lifting the front part of the foot and toes (“footdrop”); weakness in the hands, legs, feet and ankles; clumsiness; slurring of speech; trouble swallowing; muscle cramps and twitching in the arms, shoulders and tongue.
  • Usually beginning in the hands or feet, the disease then spreads to the rest of the body and weakens muscles until they’re completely paralyzed. Eventually, people with ALS are rendered unable to chew, swallow, speak and breathe on their own.
  • ALS is also referred to as Lou Gehrig’s disease, honoring the famous baseball player who was diagnosed with it in 1939.

ALS is a severely incapacitating and fatal disease. If you have a friend or family member with ALS, you understand and vicariously experience the pain and frustration that comes with it. So instead of dwelling on the debilitating details, we’re going to provide some hope and relief with ways to support your loved one. 

Check back later this week or subscribe to the Griswold blog for advice on how to provide relief for your loved one with ALS

Do you have a loved one with ALS? Tell us about your experiences in the comments below.

  • Dana

    Although the impact of ALS on the individual who is diagnosed, as well as their family and friends is universally horrific, the various ways to provide quality of life for all involved is unique to each one.

    My otherwise healthy, vibrant, and active mother was diagnosed with ALS at the age of 68. There was no amount of information that could possibly prepare our family for the next 18 months. The doctor who relayed the diagnosis provided the most clear and accurate description of what our experience would be, which was simply…this is a heinous and cruel disease…take advantage of the time you have together as a family and do what makes you happy.

    Although specific to our particular situation, the lessons I learned related to providing relief and maximizing the quality of my mothers life could fill an entire notebook. Below are just a few. . .

    1. Remember and remind others, although the body does not function, the mind is as sharp as ever. The patients eye site, hearing, taste and sense of smell is not compromised. No one needs to talk to the ALS patient like a child, loudly, slowly, etc. All decisions and discussions related the environment and patient should be discussed with them directly vs. speaking in front of them like they don’t exist.

    2. Do not encourage or entice the ALS patient to try and eat, try and walk, try and anything that may only lead to further medical issues and emotionally draining situations. Friends and family may be aware of the disease, however, denial is a powerful thing and people typically find comfort in assisting or encouraging the patient to do something they shouldn’t.

    3. Start talking about and planning for the electric wheelchair well before it’s needed. The patient may be resistant to it and feel they are a long way from needing it, however, the time it takes to custom fit and receive the final product can take months. Sadly the freedom of mobility she could have been enjoying came too late. We donated the wheelchair to the ALS closet a few weeks later.

    4. Whatever the wishes of the patient may be, please strongly consider outside help. The amount of care that an ALS patient needs and deserves cannot be left to one or two family members. Everyone needs the time and space to grieve and being the fulltime caregiver does not allow this to happen. In addition, as the disease progresses, consistent exercising of the limbs, repositioning, suctioning, and personal care is needed.

    5. If possible, involve hospice asap. Hospice is no longer about providing comfort in the final days. They offer a variety of support and services that are vital to the entire family, both emotionally and physically. The hospice that cared for my mother had a team of people who were experts in caring for ALS patients. They were simply the most compassionate and wonderful people I have ever had the pleasure of meeting and I we wouldn’t have been able to do it without them.

    6. Do your very best to remember that everyone handles things differently. This is not the time to compare or judge the actions or words of others. Simply ensure that those who engage with the patient understand that ALS is terminal. If you want people to “get it” you need to be honest and forgo sugarcoating the situation. People typically have the best intentions, however, if something requires attention, address it off to the side, and in a manner that is respectful to that person…they too are experiencing the pain of losing someone they care for. In addition, the patient does not need their remaining time to be filled with conflict and drama among family and friends.

    Last but not least, take advantage of the time you have with your loved one. It’s a gift, a wonderful beautiful gift.