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10 Things To Remember If Your Loved One Has ALS

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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 November 18, 2021

10 Proven Ways to Judge a Person’s Character

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10 Proven Ways to Judge a Person’s Character

We all fall into the trap of judging a person’s character by their appearance. How wrong we are! All too often, the real character of the person only appears when some negative event hits them or you. Then you may see a toxic person emerging from the ruins and it is often a shock.

A truly frightening example is revealed in the book by O’Toole in Bowman called Dangerous Instincts: How Gut Instincts Betray Us. A perfectly respectable, charming, well dressed neighbor was found to have installed a torture chamber in his garage where he was systematically abusing kidnapped women. This is an extreme example, but it does show how we can be totally deceived by a person’s physical appearance, manners and behavior.

So, what can you do? You want to be able to assess personal qualities when you come into contact with colleagues, fresh acquaintances and new friends who might even become lifelong partners. You want to know if they are:

  • honest
  • reliable
  • competent
  • kind and compassionate
  • capable of taking the blame
  • able to persevere
  • modest and humble
  • pacific and can control anger.

The secret is to reserve judgment and take your time. Observe them in certain situations; look at how they react. Listen to them talking, joking, laughing, explaining, complaining, blaming, praising, ranting, and preaching. Only then will you be able to judge their character. This is not foolproof, but if you follow the 10 ways below, you have a pretty good chance of not ending up in an abusive relationship.

1. Is anger a frequent occurrence?

All too often, angry reactions which may seem to be excessive are a sign that there are underlying issues. Do not think that every person who just snaps and throws his/her weight around mentally and physically is just reacting normally. Everyone has an occasional angry outburst when driving or when things go pear-shaped.

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But if this is almost a daily occurrence, then you need to discover why and maybe avoid that person. Too often, anger will escalate to violent and aggressive behavior. You do not want to be near someone who thinks violence can solve personal or global problems.

2. Can you witness acts of kindness?

How often do you see this person being kind and considerate? Do they give money to beggars, donate to charity, do voluntary work or in some simple way show that they are willing to share the planet with about 7 billion other people?

I was shocked when a guest of mine never showed any kindness to the weak and disadvantaged people in our town. She was ostensibly a religious person, but I began to doubt the sincerity of her beliefs.

“The best index to a person’s character is how he treats people who can’t do him any good, and how he treats people who can’t fight back.”

Abigail Van Buren

3. How does this person take the blame?

Maybe you know that s/he is responsible for a screw-up in the office or even in not turning up on time for a date. Look at their reaction. If they start blaming other colleagues or the traffic, well, this is an indication that they are not willing to take responsibility for their mistakes.

4. Don’t use Facebook as an indicator.

You will be relieved to know that graphology (the study of that forgotten skill of handwriting) is no longer considered a reliable test of a person’s character. Neither is Facebook stalking, fortunately. A study showed that Facebook use of foul language, sexual innuendo and gossip were not reliable indicators of a candidate’s character or future performance in the workplace.

5. Read their emails.

Now a much better idea is to read the person’s emails. Studies show that the use of the following can indicate certain personality traits:

  • Too many exclamation points may reveal a sunny disposition
  • Frequent errors may indicate apathy
  • Use of smileys is the only way a person can smile at you
  • Use of the third person may reveal a certain formality
  • Too many question marks can show anger
  • Overuse of capital letters is regarded as shouting. They are a definite no-no in netiquette, yet a surprising number of  people still use them.

6. Watch out for the show offs.

Listen to people as they talk. How often do they mention their achievements, promotions, awards and successes? If this happens a lot, it is a sure indication that this person has an over-inflated view of his/her achievements. They are unlikely to be modest or show humility. What a pity!  Another person to avoid.

7. Look for evidence of perseverance.

A powerful indicator of grit and tenacity is when a person persists and never gives up when they really want to achieve a life goal. Look for evidence of them keeping going in spite of enormous difficulties.

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Great achievements by scientists and inventors all bear the hallmark of perseverance. We only have to think of Einstein, Edison (who failed thousands of times) and Nelson Mandela to get inspiration. The US Department of Education is in no doubt about how grit, tenacity and perseverance will be key success factors for youth in the 21st century.

8. Their empathy score is high.

Listen to how they talk about the less fortunate members of our society such as the poor, immigrants and the disabled. Do you notice that they talk in a compassionate way about these people? The fact that they even mention them is a strong indicator of empathy.

People with zero empathy will never talk about the disadvantaged. They will rarely ask you a question about a difficult time or relationship. They will usually steer the conversation back to themselves. These people have zero empathy and in extreme cases, they are psychopaths who never show any feelings towards their victims.

9. Learn how to be socially interactive.

We are social animals and this is what makes us so uniquely human. If a person is isolated or a loner, this may be a negative indicator of their character. You want to meet a person who knows about trust, honesty and loyalty. The only way to practice these great qualities is to actually interact socially. The great advantage is that you can share problems and celebrate success and joy together.

“One can acquire everything in solitude, except character.”

Stendhal

 10. Avoid toxic people.

These people are trying to control others and often are failing to come to terms with their own failures. Typical behavior and conversations may concern:

  • Envy or jealousy
  • Criticism of partners, colleagues and friends
  • Complaining about their own lack of success
  • Blaming others for their own bad luck or failure
  • Obsession with themselves and their problems

Listen to these people talk and you will quickly discover that you need to avoid them at all costs because their negativity will drag you down. In addition, as much as you would like to help them, you are not qualified to do so.

Now, having looked at some of the best ways to judge a person, what about yourself? How do others see you? Why not take Dr. Phil’s quiz and find out. Can you bear it?

Featured photo credit: Jacek Dylag via unsplash.com

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