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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 January 16, 2020

12 Simple Ways to Boost Your Confidence Right Now

12 Simple Ways to Boost Your Confidence Right Now

The way you feel about yourself greatly influences how you live and interact with others. If you are confident about yourself, you tend to see yourself positively and actually enjoy spending time with and around people. You don’t feel self-conscious or awkward around others, and that allows you to live your fullest and happiest life.

However, if you’re drowning in a sea of self-doubt, hesitancy and shyness, you often withdraw and isolate yourself from others and avoid interacting and connecting with people. That anxiety you feel in the pit of your stomach when you are around people is holding you back greatly and it is not good for your emotional health and overall well-being. You need to do something about it if you are low in self-confidence or have friends or family members who are not confident.

“Confidence isn’t walking into a room thinking you’re better than everyone, it’s walking in not having to compare yourself to anyone” – Anonymous

Here are simple, practical tips to boost your confidence right now and make you feel and act your best.

1. Stop labeling yourself as awkward, timid or shy.

When you label yourself as awkward, timid or shy, you sub-consciously tell your mind to act accordingly and psychologically feel inclined to live up to those expectations. Instead of labeling and entertaining negative self-talk, visualize and affirm yourself as confident and strong. Close your eyes for a minute and visualize yourself in different situation as you would like to be.

Be your own cheerleader. Experts believe that positive affirmation and good mental practices like picturing yourself winning or achieving a goal can lead to greater feelings of self-assurance and prepare your brain for success.[1] As the saying goes, “seeing is believing.” Picture yourself as confident and soon enough you will begin to manifest behavior that gives evidence to this new ‘fact.’

2. Recognize that the world is not focused on you (unless, of course, you are Kanye West).

That means you don’t have to be excessively sensitive about who you are or what you are doing (or not doing). You are not on the center stage; there is no need for preoccupation with self and perfectionism. As rap music star Rocko sings, “You just do you and I will do me, aight?”

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Forget about trying to please everyone or being perfect. Trying to be perfect and being a people-pleaser puts too much pressure on you and creates unnecessary anxiety. Besides, people are too preoccupied with their own issues to pay much attention to your every move unless, of course, you are a mega famous, super celebrity like Beyonce or Kanye West.

3. Focus on other people as opposed to yourself.

If you are low on confidence, self-conscious, nervous and shy in social situations, focus your attention on other people and what they are saying or doing instead of focusing on your own awkwardness.

For example, think about what it is that is interesting about the person who’s the centre of the party or the guy or girl you are talking with. Prompt them to talk more about themselves and be genuinely curious and interested in what they say. You will instantly come across as confident and warmhearted.

People generally want to talk about themselves, be heard and understood. They will love it when you’re eager and willing to listen to them and really hear what they have to say.

This habit of focusing more on what you love in others as opposed to what you dislike in yourself will not only help you become more assertive and comfortable in virtually all social situations, but also instantly make you feel great about yourself.

4. Know (and accept) yourself for who you are.

Chinese military general, strategist and philosopher Sun Tzu, author of the internationally acclaimed book The Art of War, said, “Know yourself and you will win all battles.” Even in the battle with lack of confidence, you will need to know yourself to win.

Knowing yourself starts with understanding that people are not all the same, neither are all social situation suitable for everyone. You might not be confident in large gatherings, but you could be bold and confident in one-on-one and small group interactions. We all have our own unique gifts and unique ways of expressing ourselves. Embrace yours!

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Introverts, for example, have a quiet confidence that is, unfortunately, often confused for shyness. They are naturally low key and prefer to spend time alone. However, this natural disposition affords them certain unique gifts, such as an ability to listen better than most people and notice things that others don’t.

Your uniqueness is where your strength and advantage lies. You won’t be comfortable and confident in all situations all the time. Albert Einstein said,

“Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid.”

5. Crack a smile.

If there is one sure way to instantly boost your confidence, it’s cracking a smile. Christine Clapp, a public speaking expert at The George Washington University, says that flashing those pretty, pearly white teeth will immediately make you appear both confident and composed. But, the effect of smiling is not just external. Studies show that smiling can also help nix feelings of stress and pave the way for a happier and more relaxed you.[2]

Not a bad return for something seemingly so trite, wouldn’t you agree?

6. Break a sweat—with exercise.

Working out is another great way to make yourself feel amazing and confident. Science has shown that exercising increases your endorphins, helps reduce stress, tones your muscles and makes you feel happy and confident.[3]

And hey, all you have to do is take a walk a few times a week and you’ll see the benefits. What seems to matter—as far as your confidence goes—is whether you break a sweat, not how strenuous your session is, which is pretty cool. Start working out now.

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7. Groom yourself.

This might seem mundane, but it’s amazing how much of a difference a shower and shave can have on your confidence and self-image. And when you spritz on a scent, the boost on confidence and self-esteem is incredible. As it turns out, your favorite fragrance does more than make you smell oh-so-nice.

A study found that a fragrance can inspire confidence in men. Interestingly, the study also found that the more a man likes the fragrance, the more confident he might feel. Another study found that 90% of women feel more confident while wearing a scent than those who go fragrance-free.

8. Dress nicely.

Another one that might seem trite, but it works. If you dress nicely, you’ll instantly feel good about yourself and give your confidence a real boost. That is largely because you’ll feel attractive, presentable and sometimes even successful in nice clothes.

While dressing nicely means something different for everyone, it does not necessarily mean wearing $500 designer outfits. It means wearing clothes that are clean, that you are comfortable in and that are nice-looking and presentable, including casual clothes.

9. Do activities you enjoy.

Whether it is reading a book, playing a musical instrument, riding your bicycle or going fishing, do what you really enjoy and what makes you truly happy often. It will boost your self-esteem, soothe your ego and allow you to identify with your gifts and talents. That will in turn bolster your self-belief and grow your confidence exponentially.

You might not become popular for doing what you love, but you might not even want to be popular at all. Being popular doesn’t make you happy; doing what you love does.

10. Prepare for the possibility of rejection / setback.

Late World No. 1 professional tennis player Arthur Ashe said, “One important key to success is self-confidence. A key to self-confidence is preparation.” You need to prepare for the possibility of rejection and setback.

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Why?

Everybody suffers rejection and setback at one point or another. You are not exempted. The question on your mind, therefore, should not be if you will be rejected, but how you will handle rejection when it comes.

Prepare yourself adequately in every situation to minimize the risk and effect of rejection and so that your confidence is not broken. For example, learn public speaking and rehearse what you are going to say beforehand if you have landed a public speaking engagement. That way, you are sure of yourself and confident you have what it takes to hack it. If you are rejected, don’t take it personally.

Rejection and setbacks happen to the best of us. Take it as a learning experience. Learn from your mistakes and move on.

11. Face uncomfortable situations square in the face.

Don’t run away from uncomfortable situations. Running away from people or situations because you feel scared, shy or timid only confirms and reinforces your shyness. Instead, face the situation that makes you uneasy square in the face. For example, go ahead and talk to that person you are afraid to approach, or go straight to the front of your yoga class! What’s the worst that can happen?

Prepare and be ready for any eventuality. The more you face your fears, the more you realize you are stronger than you thought and the more confident you get. This simple, yet admittedly courageous, act makes you unstoppable. You get comfortable being uncomfortable and begin to feel like you can take on the world. And that is the hallmark of someone destined for great things.

12. Sit up straight and walk tall—you are awesome!

Yes, sit up straight and believe you are awesome. Don’t slump in your chair or slouch your shoulders. Experts say the right stance can not only keep your self-esteem and mood lifted, but also lead to more confidence in your own thoughts.[4]

The way to sit is to open up your chest and keep your head level so that you look and feel poised and assured. And when you get up, stand tall and walk like you’re on a mission. People who sit up straight and walk tall are more attractive and instantly feel more confident. Try it now: you’ll feel fierce and confident just by sitting up straight and walking tall.

Featured photo credit: Freshh Connection via unsplash.com

Reference

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