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10 Things To Remember If Your Loved One Has ALS

10 Things To Remember If Your Loved One Has ALS

The ALS ice bucket challenge has done a lot to raise awareness and funds for this disease.

If a family member or a loved one has ALS (Amyotrophic lateral sclerosis), you are probably well aware of the symptoms and treatment available. For those readers who are not so sure, the disease is a neurodegenerative one in which the motor neurons controlling the muscles no longer work or are severely impaired. The result is that the muscles start to waste away and this leads to progressive paralysis. The ALS Association is committing $99 million to research which you can check out on their site.

The only FDA approved drug which can help to slow the progression of symptoms is Rilutek (riluzole). Research is ongoing but there is a long way to go.

But this post is really about how you can support a loved one who has ALS. It will try and help you to understand what a person who has ALS is going through and the best possible ways you can help and love them even more.

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1. Get help and support

The first thing is to make sure that you are connected with an ALS charity or foundation in your country or area. They will give you lots of information and provide you with the support you will need. You can find your local chapter if you are living in the USA here .

2. Decide what type of care you can be committed to

Much depends on the stage of the disease. In the early days you may be able to take care of your loved one at home. Many ALS sufferers are able to go on working for a time. There will be things to consider such as getting the home help you need and also the financial implications. It will become a 24/7 job with the need for a respirator and other equipment. This is why you may have to consider a critical care center because you may be unable to cope.

Most caregivers will go through various stages of anger, fear and isolation, not to mention the financial worries. Exhaustion sets in and it is important to have shifts so that you can rest and relax at times. But life goes on and it can be a great opportunity to strengthen ties with loved ones and still find joy in spite of the monstrous difficulties. The main aim will be to search for a quality of life for the patient which is acceptable.

3. Acceptance and reaction to ALS

Both the patient and the caregivers have to come to terms with an enormous burden and one which will have life-changing consequences. Everybody reacts differently and social, cultural and religious upbringing will all come into play. There may be anger and denial or acceptance and determination to make the best of it and several other mixed reactions in between. Time may also help or hinder the process of acceptance. Each stage of the disease involves decisions about care and mobility. Patients may hate having to use a wheelchair. They may agree to use it on certain occasions or for some outings until they fully accept it as the only means of mobility they may have.

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4. Learn and empathize

Learning about the disease is a great way to understand what is going on in the sufferer’s mind. If you are not empathetic enough to realize what they are going through, try the following:

  • Imagine your mouth is full of marshmallows – try speaking
  • The fork you need to lift the food to your mouth weighs ten pounds
  • Try sitting in a chair and do absolutely nothing for ten minutes. You cannot move any limb in your body but you are able to move your eyes and see. Look around you for all this time and see how you get on.
  • Try lying in bed without moving for twenty minutes. No, you cannot turn over or move your legs or arms or even scratch your nose.
  • Walk up the stairs with heavy weights attached to your ankles.

5. Understand their needs and behavior

The ALS sufferer has to come to terms with a very uncertain future. Nobody knows how fast the disease will develop. They will worry about being a burden on their families while seeking to be independent and maintain a decent quality of life.

6. Watch out for abuse

If you are not the main caregiver, you may have to look out for signs of abuse. It sometimes happens that caregivers react to the stress by being sarcastic, complaining and swearing. It can also happen that they resort to physical abuse such as attacking the sufferer and deliberately roughing them up. There have been cases where the caregivers refuse to give medicines and also give them tranquilizers so that they are not overly disturbed by their requests.

The ALS sufferers sometimes become abusive towards their own loved ones and caregivers. This is one way they have of directing their anger, grief and isolation to whoever happens to be around. There may be cases of refusing to collaborate, complaining all the time and never thanking the loved one for their support. This can be very painful for those trying to give love, help, and tender care.

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7. Keep the relationship the same as before

Don’t let ALS change your relationship status with your loved one. Both parties should be aware that they are not going to use the disease to gain advantage or power over the other partner. Depending on a loved one should never be an excuse for bad behavior or wallowing in self pity. The care questions and decisions should never be mixed with ones concerning your relationship.

8. Don’t make decisions on your own

If you have to make decisions about any changes for mobility, diet and hygiene, make sure that the patient is fully consulted (as far as the disease will allow). Joint decisions should be taken on the following:

  • Wheelchairs
  • Walking aids
  • Diet
  • PEG tube
  • Adapted car/van

9. Help the patient be active

Even if it is just making sure that bills are paid online or making a shopping list, these can help the patient feel more useful and that she or he is helping in little ways. It also means that they feel less dependent and can still have a role to play.

Exercising together when and where possible is a great way to bond. Usually walking, swimming are recommended as they are low impact. The patient will also be given physical therapy as the disease progresses which will help with cramps and numbness. Speech therapy often helps when speaking becomes more difficult.

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10. Encourage patients to live for the moment

Depending on how serious the illness may be, there will be many opportunities for the person with ALS and their caregivers to savor life and nature. There may be more chances to use:

  • Prayer
  • Meditation
  • Mindfulness
  • Music
  • Reading (page turners, online books and audio books are all available)

As we have seen, there are many ways of supporting and caring for ALS patients. Empathy, bonding and support for caregivers and family members will be key factors in helping to maintain quality of life.

More by this author

Robert Locke

Author of Ziger the Tiger Stories, a health enthusiast specializing in relationships, life improvement and mental health.

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Last Updated on December 2, 2018

7 Public Speaking Techniques To Help Connect With Your Audience

7 Public Speaking Techniques To Help Connect With Your Audience

When giving a presentation or speech, you have to engage your audience effectively in order to truly get your point across. Unlike a written editorial or newsletter, your speech is fleeting; once you’ve said everything you set out to say, you don’t get a second chance to have your voice heard in that specific arena.

You need to make sure your audience hangs on to every word you say, from your introduction to your wrap-up. You can do so by:

1. Connecting them with each other

Picture your typical rock concert. What’s the first thing the singer says to the crowd after jumping out on stage? “Hello (insert city name here)!” Just acknowledging that he’s coherent enough to know where he is is enough for the audience to go wild and get into the show.

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It makes each individual feel as if they’re a part of something bigger. The same goes for any public speaking event. When an audience hears, “You’re all here because you care deeply about wildlife preservation,” it gives them a sense that they’re not just there to listen, but they’re there to connect with the like-minded people all around them.

2. Connect with their emotions

Speakers always try to get their audience emotionally involved in whatever topic they’re discussing. There are a variety of ways in which to do this, such as using statistics, stories, pictures or videos that really show the importance of the topic at hand.

For example, showing pictures of the aftermath of an accident related to drunk driving will certainly send a specific message to an audience of teenagers and young adults. While doing so might be emotionally nerve-racking to the crowd, it may be necessary to get your point across and engage them fully.

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3. Keep going back to the beginning

Revisit your theme throughout your presentation. Although you should give your audience the credit they deserve and know that they can follow along, linking back to your initial thesis can act as a subconscious reminder of why what you’re currently telling them is important.

On the other hand, if you simply mention your theme or the point of your speech at the beginning and never mention it again, it gives your audience the impression that it’s not really that important.

4. Link to your audience’s motivation

After you’ve acknowledged your audience’s common interests in being present, discuss their motivation for being there. Be specific. Using the previous example, if your audience clearly cares about wildlife preservation, discuss what can be done to help save endangered species’ from extinction.

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Don’t just give them cold, hard facts; use the facts to make a point that they can use to better themselves or the world in some way.

5. Entertain them

While not all speeches or presentations are meant to be entertaining in a comedic way, audiences will become thoroughly engaged in anecdotes that relate to the overall theme of the speech. We discussed appealing to emotions, and that’s exactly what a speaker sets out to do when he tells a story from his past or that of a well-known historical figure.

Speakers usually tell more than one story in order to show that the first one they told isn’t simply an anomaly, and that whatever outcome they’re attempting to prove will consistently reoccur, given certain circumstances.

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6. Appeal to loyalty

Just like the musician mentioning the town he’s playing in will get the audience ready to rock, speakers need to appeal to their audience’s loyalty to their country, company, product or cause. Show them how important it is that they’re present and listening to your speech by making your words hit home to each individual.

In doing so, the members of your audience will feel as if you’re speaking directly to them while you’re addressing the entire crowd.

7. Tell them the benefits of the presentation

Early on in your presentation, you should tell your audience exactly what they’ll learn, and exactly how they’ll learn it. Don’t expect them to listen if they don’t have clear-cut information to listen for. On the other hand, if they know what to listen for, they’ll be more apt to stay engaged throughout your entire presentation so they don’t miss anything.

Featured photo credit: Flickr via farm4.staticflickr.com

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