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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 June 13, 2019

How to Quit Your Boring Life and Start Living an Interesting One

How to Quit Your Boring Life and Start Living an Interesting One

Think you have a boring life?

The definition of boring is dull or not interesting. Maybe you’ve been doing the same thing and living the same life for too long, or maybe your daily routine is limiting your growth and happiness. Whatever your reason is, the following list of 20 things can definitely make any day more interesting. Some of them are silly, while some are more meaningful, so hopefully just reading the list makes your life less boring and sparks your creativity.

Let’s dive in the list to quit your boring life and start living an interesting (and meaning) one!

1. Channel Your 7-Year-Old Self

What would he or she want to do right now? Color? Paint? Run around outside? Play dress up? Eat with your hands? Play that instrument hiding in the back of your closet that you haven’t touched in years?

Just because you’re a grown up doesn’t mean any of this stuff will be less enjoyable than you remember it. Give yourself permission to play.

2. Go Play with Kids

Speaking of little kids, if you have your own or access to any (in a non-creepy way, like they’re your niece or your best friend’s kid, you get the idea) go play with them!

They didn’t create an entire show called Kids Say The Darndest Things because kids aren’t hilarious. They also keep things so simple, and we can really stand to be reminded of this and stop allowing ourselves to get bogged down in boring details.

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3. Order a Hot Dog

While you’re eating it, Google: “What’s in a hot dog?” You decide whether or not you want to finish it.

4. For the Ladies: Wear Your Sexiest Lingerie Under Your Work Clothes

Your “little secret” will leave you feeling anything but boring all day!

5. Play Cell Phone Roulette

You’ll need at least one buddy for this. Scroll through the contacts in your phone, stop on a random one and call the person.

You could spark an incredible catch up session or be incredibly awkward. Neither are boring.

6. Fill out a Pack of Thank-You Cards

Give them to random people who probably don’t get thanked too often for doing what they do ever day.

Ideas: police officers, librarians, servers, baristas, cab drivers, sanitation workers, teachers, people behind any check out counter, receptionists, your friends, the guy at the falafel stand, etc.

7. Sign up for a Class in Something You’ve “Always Wanted to Do”, or Something That Makes You Really Uncomfortable

Ideas: pole dancing, salsa lessons, improv, pottery, cooking, knitting (yup, there are classes for this, too!), karate, boxing, something techy like the workshops they run in Apple stores, get Rosetta Stone and learn that language you’ve always wanted to speak, etc.

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What’s good about joining an interest class is that you will also meet new people!

8. Interview Your Grandparents About Their Lives

You can bet they’ve had some crazy experiences you probably never knew about.

9. Get up on Stage at an Open Mic Night

Whether you’re funny or not, get up on stage and just talk funny. And if you’re not, memorize a few of your favorite jokes and tell those!

10. Do Something for Someone Else That You Wish Someone Would Do for You

We all have a few ideas on this list. I promise you will feel amazing after and anything but bored.

11. Start a DIY Project in Your Home

It doesn’t have to be super complicated. If you need ideas, there’re plenty on Pinterest. Or you can also check out these 30 Awesome DIY Projects that You’ve Never Heard of.

12. Plan a Weekend Trip or an All-Out Vacation

This will give you something to look forward to.

Even if you don’t have the time or money to go on a vacation, plan for a staycation, which is same fun and relaxing!

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13. People Watch

Find a bench in a crowded area (centers of transportation like airports, bus stops and train stations are great for this!) and just observe.

People are infinitely interesting.

14. Eat Something You’ve Never Eaten Before

Bonus points if it’s a random fruit or veggie.

15. Dance

You can get your friends together for a night on the town or just pull up a video on YouTube and bust a move from your own living room.

If you’re feeling extra brave, you can even dance in public and get other people involved.

16. Go to YOUTUBE and Search “Funny Pets” or “Funny Babies”

This is also a great quickie ab workout as you will be laughing hysterically.

17. Pick up a Book and Start Reading

Check out the NY Times Best Sellers lists and grab a new book you can get lost in.

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18. Step Away from the Computer and Go Get Some Time with People You Care About in Real Life

Facebook stalking doesn’t count as real social interaction. You can even share this post with your friends and vote on which one you’d like to do together!

19. Check out a Museum You’ve Never Been to Before

OK, depending on your interests, this one might actually be boring. If you love learning, art or different cultures though, this one is for you!

20. Write a List of Things You Desire and Truly Want

This is a great way to help you figure out the real reason why you’re feeling bored about your life. Maybe you haven’t really done things that you truly enjoy? Maybe what you’ve wanted to do all the time has been left behind?

Think about the list of things you really want to do, and ask yourself why you aren’t doing these things (yet). Then start taking your first step to make what you want happen.

Now go make your life interesting and live your dream life!

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Featured photo credit: Kev Costello via unsplash.com

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