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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 November 4, 2020

15 Simple Ways To Make Self Improvement That Will Change Your Life

15 Simple Ways To Make Self Improvement That Will Change Your Life

Self-improvement doesn’t have to be big mind-blowing changes; it can actually be simple steps to improve upon what you already have to get you where you want to be.  However, what you will need is consistency, determination and wiliness to try some things that will stretch and challenge you.

Rather than setting your sights way off into the future, which leaves you feeling like you’ll never make it, you can start following these simple and effective self-improvement steps today.  So if you want to make an immediate impact on your life and are willing to take action, then keep reading— you’ll going to love these!

1. Be willing to work hard.

As with anything in life, if you want something, you’ve got to work hard to get it.  This doesn’t mean you burn the candle at both ends, leaving you exhausted and leaving your personal life in ruins.  It merely means that when you want something badly enough, you’ll put in the time to get there.  Action is what’s important here and the more ‘inspired’ the action is, the better the results in the end.

2. Make sure you have friends who you can talk to.

Sharing the load is important as with any self-improvement. If you can communicate with others and get feedback on how you are doing then that’s great.  We all need ‘cheerleaders’ in our corner to keep us going when times get hard, but you also need to have people who will tell you how it is even when you don’t want to hear it.  So make sure you have a good support network around you, especially those people whose opinions you respect.

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3. Adapt to your circumstances rather than over-thinking them.

Sometimes, we can hit a hard period. Perhaps you’ve lost your job or your partner has left you.  Instead of over analyzing the situation, learn to adapt to your circumstances and accept them as they are.  It’s not about making your circumstances into some kind of a drama; remember, what you focus on expands which means you’ll get more of it.  You then don’t become your problems and you’ll feel a lot less burdened by them.

4. Ensure that you use your time wisely.

Time is of the essence, some might say; whilst others will say that time is an illusion.  One thing we do know is that you have one life on this planet, so how you use that time is of the utmost importance.  So how can you use your time wisely? Only you know how to do that, but look at how you currently spend your days: do you sit working all day, get home, eat and then sit slumped in front of the TV for the rest of the evening?  Your time on this earth is precious, so isn’t it time to make use of the time you have left? Try something new, go for a walk, learn a new language or meditate but make sure it’s something you absolutely love.

5. Always be consistent.

A wonderful way to self-improvement is to make changes to how you do things.  For example, with your friends, are you always the unreliable one who bows out of an arrangement just before it happens? Or are you someone who starts a new exercise routine and then stops doing it 3 weeks into it?  Whatever it is and whatever you do, always be consistent. When you make a commitment, stick to it. It will improve your life immeasurably you’ll feel more confident and happier with yourself, especially because you’ll know that whatever you tackle, you’ll be able to consistently do it!

6. Go and find your happy place.

No, I’m not saying “place” as in popping to your local bar or restaurant and gorging yourself on your favorite drinks or food. What I’m saying is to find out what you love to do, what makes you happy and go there.  Your happy place is a place where you find peace, where you lose yourself and feel contented.  Meditation is a great way to find your happy place; it brings you back to you and ensures that you are always living in the present moment.

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7. Make sure you embrace all your emotions.

In life you are going to find that it throws you some difficult challenges, sometimes it will bring out your fears and lead you into uncertainty, and other times it will be joyful.  It’s important to embrace all emotions that come up in your life, embrace them wholeheartedly and understand why they are there and then let them go.  Try not to dismiss or resist them because remember “what you resist, persists,” so embrace them each and every time.

8. Always be prepared to step out of your comfort zone.

The idea of stepping out of your comfort zone for some people can leave you paralyzed with fear; however for any changing in your life, your comfort zone will always have to be stepped out of.  It doesn’t have to be something big, like doing a sky-dive or something just as crazy. However, it’s worthwhile to change something that you’d once have feared, like going to the cinema on your own or eating at a sushi restaurant when the thought of trying raw fish which would normally mean you running for the hills.

So try something new—it doesn’t have to be wacky, but it has to challenge you!

9. Be on hand to help others.

Whether it’s helping a stranger on the street or a family member or a friend helping someone else either in their time of need, lending a helping hand is a wonderful and simple self-improvement to make.  Giving to others is not only beneficial to those you are helping but also to yourself; it can give you a sense of purpose, of contribution and also takes your mind of your own troubles and worries.

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10. Live in the present moment.

A wonderful self-improvement tool is to live in the present moment, to live in the now.  It is within this moment that you’ll appreciate all that you have and see the beauty in the simplest of things.  Being mindful of your current circumstances and bringing your mind back to where it belongs will bring about a happier way of life instead of constant worry or stressing about the past or future—both of which do not exist. Only the present moment exists. When you get used to living that way, you’ll never want to go back!

11. Learn something new.

There is nothing so liberating as learning something new; it can lift both your confidence and self-esteem and give you a great reason to meet new people.  If you continually top up your brain activity by learning something new all the time, you’ll feel on top of your game and want to share the knowledge you have learned. There is nothing quite so empowering as learning a new tool in life that can either improve your circle of friends or raise confidence levels—or both!

Reading is also a great way to help you learn something new:

12. Exercise daily.

This seems an obvious one, but exercise is so important not only to your health but also to your spirit.  We all know that after exercise, the world can feel a brighter and more positive place, so why don’t we do it more often?  Exercise isn’t about getting the perfect body or losing weight; it’s more about feeling good inside and out!  With a healthy body comes a healthy mind—so start something today. Even if it’s just a daily walk, it’s better than staying on that couch, again.

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13. Go to new places, travel a bit.

I’m not saying go fly off to some far away distant forgotten land—although you can if you so wish. It’s more about going to new places and experiencing life outside of your own back yard.  Too many of us stay in one place too often. We only see the same people, the same streets and do the same things each and every day.  If you want to improve your life, get out there and see the world and what it can offer.  You can start by going to a town or city you’ve never been to in your own country and checking out the architecture, the landscapes and the people.  Anything new is good, so get out there!

14. Listen to uplifting music and dance.

If there’s one thing that can really improve your life and get you excited about it, it’s listening to great uplifting music and dancing.  When was the last time you really let go?  Let it all hang loose and got into a piece of music and let yourself go?  Dancing, like exercise, makes you feel great. It releases all kinds of emotions and can make you feel unbelievably good.  Self-improvement isn’t all about the serious stuff; it can be something as simple as finding new music, music that inspires you and makes you dance and have fun!

15. Get up earlier than normal.

This is the last one, and it’s last because it’s one of those self-improvement tips that we all know is a good thing, yet we seem to avoid it at all costs!  If you think about it, the earliest part of the day is when your brain is most active because it’s been turned off for the last 7 hours or so.  So don’t you think it’s best to get all those things above done in the morning?  Things like exercise, meditation and dancing, which can all be done in the first part of the day.  Take it from me: this early morning stuff can really get your day started with a bang!

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Featured photo credit: Laura Chouette via unsplash.com

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