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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 February 18, 2019

Why It’s Never Too Late To Redefine Yourself

Why It’s Never Too Late To Redefine Yourself

The ability to reinvent and redefine yourself is a bold, daring and purposeful choice. It doesn’t just happen. You have to make a conscious, intentional choice and then follow through.

If the thought of forging a new path, changing habits, thought patterns and your inner circle of friends scares you – you’re not alone. Change can be a very scary thing. It takes courage, fortitude and a bit of faith to decide to shed your old self and don a new persona. However, it is one of the most critical processes one must repeatedly endure in the pursuit of destiny. Change unlocks new levels of potential.

The Need for Change

Everyday when we wake up, we make a decision. We decide to follow our routine or we decide to go off script and shake things up a bit. For those who are creatures of habit, routine is comfortable, easy and produces very little stress. The problem with this is, after a while you stop growing.

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We all reinvent ourselves at some point in our lives. It is absolutely necessary to achieve certain levels of success.

Reflect back on who you were as a teenager and then who you were at 25. Those are two very different people. Most of us are completely different. Your thought patterns changed, your appearance, job, level of education and even your friends– changed. We like to refer to this as “growing up” or maturing and consider it to be one of life’s natural progressions. However the changes you made were purposeful and deliberate.

This process must be a lifelong and continuous cycle. You are never too old to refresh yourself.

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    Signs It’s Time to Redefine

    “Just as established products and brands need updating to stay alive and vibrant, you periodically need to refresh or reinvent yourself.”– Mireille Guiliano

    So how do you know when it’s time for a system upgrade? There are signs along the way that alert you that it is time for an overhaul. The first sign is the feeling of being stuck. If you feel like you are in a rut, you’re bored with life or you need some newness and excitement, a self reinvention may be in order. Re-evaluate your life vision and your goals. Is that vision still valid and are your goals consistent with your vision and–are they achievable? If you are off course, it’s time for a change. If you are not moving forward and making progress, it’s time for a change.

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    In life, there’s no such thing as neutrality–you’re either moving forward or you are moving backward. Time constantly moves forward and if you are standing still, you are actually losing ground. No matter your age or stage in life– there is always room for improvement.

    “You’re never too old to set another goal or dream a new dream.” ~C. S. Lewis

    The second sign that you are due for a change is the occurrence of major life events in which change is forced upon you. Getting married, starting a new job, being promoted, ending a relationship, becoming a parenting or relocating are all prime opportunities to completely overhaul your life.

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    When these major shifts occur in your life–you have to shift with them. You can’t have a single mentality and have a successful marriage. You can’t remain selfish and irresponsible, and raise a healthy, well-adjusted child. You can’t be promoted to a supervisory position and keep the same subordinate attitude. Each level of success requires something different from you.

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      Consider, for a moment, Arnold Schwarzenegger. People may have different opinions about his character and some of his life choices, but he is a master at reinventing himself. He achieved the ultimate success as a professional body builder by earning the title “Mr. Universe” three times. He then earned a tremendous amount of fame and fortune in the entertainment industry making action/adventure films. And in his latest role, he served two terms as the Governor of California. He succeeded as a professional body builder, a film star and a politician. Each role required massive amounts of change, commitment, strength and hard work.

      And if Arnold can do it…so can you!

      Featured photo credit: BK via flickr.com

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