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11 Things To Remember If Your Love Someone With ALS

11 Things To Remember If Your Love Someone With ALS

It is not easy to love someone who is sick; it is especially difficult when it comes to loving someone who has ALS.

ALS is a motor-neuron disease, commonly known in the USA as Lou Gehrig’s disease. It strikes certain cells in the spinal cord and brain, making it difficult or even impossible to move. It starts by making a patient generally weak, unable to lift things and walk and then talk and even swallow. The disease is mostly diagnosed among people of 50 years and older. But there are cases when young people or even children are diagnosed with a light form of ALS. True love is unconditional, but ALS tests everyone. Understanding how a person with ALS feels will help you deal with the hard mental and physical work it requires.

1. ALS is not a death sentence.

Although statistics are rather sad, there are people diagnosed with ALS who have managed to live to see their grandchildren. Take Stephen Hawking as the best example. The world’s smartest man was diagnosed with ALS when he was 21. Soon, he will be celebrating his 70th birthday. Being wheelchair-bounded, he helped to formulate ideas on quantum gravity and black holes. His books are bestsellers, and his life is a legend. Although he lost the ability to move or speak, he has been working as a professor at Cambridge for over 30 years and became director of research at the center of Theoretical Cosmology.

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THE HAWKING PARADOX

    2. It is not their fault.

    ALS can happen to anybody with no clearly associated risk factors. Only 10 percent of ALS cases are genetic or based on gene mutation. Most people die from respiratory failure caused by ALS approximately 3-5 years from the onset of symptoms. Nevertheless, there are those who manage to live 15 years or more.

    3. They need your help.

    No one can deny that people with ALS need help. It is going to take a lot of time and adjustment to learn how to help your friend with ALS. Be patient and listen very attentively to what they say or show you.

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    4. They can sometimes cry or laugh uncontrollably.

    People who have ALS can sometimes experience uncontrollable laughter or crying without feeling particularly happy or sad. This effect is mostly seen in people suffering from upper motor neuron disease. Although this has nothing to do with actual depression, it has been successfully cured with antidepressants.

    5. ALS doesn’t affect them mentally.

    They are the same people they used to be. Yes, they cannot walk, lift things, or in some cases even talk. But just because they have changed physically doesn’t mean that they have changed mentally. They are still your best friend, cousin, wife, or mother. Treat them the same way you used to.

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    11-things-to-remember-if-you-love-someone-with-ALS

      6. They can hear you well.

      The biggest stereotype for people with ALS is that they cannot hear you well. Motor-neuron disease does not affect hearing. Talking loud or screaming will not make them answer faster.

      7. They are smart.

      Those suffering from ALS are able to use their brain’s potential to the fullest. They can even concentrate on everything amazingly. They are big book warms and excellent scientists, businessmen, directors, and journalists.

      8. They can be sexually active.

      ALS does not affect sexuality. Sufferers can be sexually active and even have children. Stephen Hawking, for example, has three beautiful kids who don’t have their father’s disease. The only thing that can make sexual relationship difficult is difficulties with the respiratory system. Nevertheless, there are special positive pressure ventilation systems that can help.

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      Stephen-in-1983-with-his-children-Robert-Lucy-and-Timothy-and-his-wife-Jane-215093

        9. They have a good sense of humor.

        In order to survive through hard times, you have to have an excellent sense of humor. ALS patients can be extremely funny when you get to know them. If you want to help them and show your love, you need to make jokes and tell funny stories, and you will see that it works both ways. Our ALS hero Mr. Hawking is known throughout the world for his exquisite sense of humor.

        10. They can tell you more about life than you think.

        Spending time with people who have ALS is a great experience. These people are alone with their thoughts a great deal of the time, so when they finally talk, they surprise you with accuracy and wisdom. You cannot help but be inspired by people who have lost everything at one point and gained even more than we can imagine.

        11.   They can continue leading a normal life.  

        Although normal is an abstract word when it comes to ALS, it has been proven that people suffering from this disease can continue leading a normal life. They can work (if it doesn’t involve physical labor), they can communicate with friends, watch movies, enjoy entertainment, and even travel.

        Featured photo credit: Girl with Heart, by Dannie via picjumbo.com

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        Last Updated on May 21, 2019

        How to Communicate Effectively in Any Relationship

        How to Communicate Effectively in Any Relationship

        For all our social media bravado, we live in a society where communication is seen less as an art, and more as a perfunctory exercise. We spend so much time with people, yet we struggle with how to meaningfully communicate.

        If you believe you have mastered effective communication, scan the list below and see whether you can see yourself in any of the examples:

        Example 1

        You are uncomfortable with a person’s actions or comments, and rather than telling the individual immediately, you sidestep the issue and attempt to move on as though the offending behavior or comment never happened.

        You move on with the relationship and develop a pattern of not addressing challenging situations. Before long, the person with whom you are in relationship will say or do something that pushes you over the top and predictably, you explode or withdraw completely from the relationship.

        In this example, hard-to-speak truths become never- expressed truths that turn into resentment and anger.

        Example 2

        You communicate from the head and without emotion. While what you communicate makes perfect sense to you, it comes across as cold because it lacks emotion.

        People do not understand what motivates you to say what you say, and without sharing your feelings and emotions, others experience you as rude, cold or aggressive.

        You will know this is a problem if people shy away from you, ignore your contributions in meetings or tell you your words hurt. You can also know you struggle in this area if you find yourself constantly apologizing for things you have said.

        Example 3

        You have an issue with one person, but you communicate your problem to an entirely different person.

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        The person in whom you confide lacks the authority to resolve the matter troubling you, and while you have vented and expressed frustration, the underlying challenge is unresolved.

        Example 4

        You grew up in a family with destructive communication habits and those habits play out in your current relationships.

        Because you have never stopped to ask why you communicate the way you do and whether your communication style still works, you may lack understanding of how your words impact others and how to implement positive change.

        If you find yourself in any of the situations described above, this article is for you.

        Communication can build or decimate worlds and it is important we get it right. Regardless of your professional aspirations or personal goals, you can improve your communication skills if you:

        • Understand your own communication style
        • Tailor your style depending on the needs of the audience
        • Communicate with precision and care
        • Be mindful of your delivery, timing and messenger

        1. Understand Your Communication Style

        To communicate effectively, you must understand the communication legacy passed down from our parents, grandparents or caregivers. Each of us grew up with spoken and unspoken rules about communication.

        In some families, direct communication is practiced and honored. In other families, family members are encouraged to shy away from difficult conversations. Some families appreciate open and frank dialogue and others do not. Other families practice silence about substantive matters, that is, they seldom or rarely broach difficult conversations at all.

        Before you can appreciate the nuance required in communication, it helps to know the familial patterns you grew up with.

        2. Learn Others Communication Styles

        Communicating effectively requires you to take a step back, assess the intended recipient of your communication and think through how the individual prefers to be communicated with. Once you know this, you can tailor your message in a way that increases the likelihood of being heard. This also prevents you from assuming the way you communicate with one group is appropriate or right for all groups or people.

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        If you are unsure how to determine the styles of the groups or persons with whom you are interacting, you can always ask them:

        “How do you prefer to receive information?”

        This approach requires listening, both to what the individuals say as well as what is unspoken. Virgin Group CEO Richard Branson noted that the best communicators are also great listeners.

        To communicate effectively from relationship to relationship and situation to situation, you must understand the communication needs of others.

        3. Exercise Precision and Care

        A recent engagement underscored for me the importance of exercising care when communicating.

        On a recent trip to Ohio, I decided to meet up with an old friend to go for a walk. As we strolled through the soccer park, my friend gently announced that he had something to talk about, he was upset with me. His introduction to the problem allowed me to mentally shift gears and prepare for the conversation.

        Shortly after introducing the shift in conversation, my friend asked me why I didn’t invite him to the launch party for my business. He lives in Ohio and I live in the D.C. area.

        I explained that the event snuck up on me, and I only started planning the invite list three weeks before the event. Due to the last-minute nature of the gathering, I opted to invite people in the DMV area versus my friends from outside the area – I didn’t want to be disrespectful by asking them to travel on such short notice.

        I also noted that I didn’t want to be disappointed if he and others declined to come to the event. So I played it safe in terms of inviting people who were local.

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        In the moment, I felt the conversation went very well. I also checked in with my friend a few days after our walk, affirmed my appreciation for his willingness to communicate his upset and our ability to work through it.

        The way this conversation unfolded exemplified effective communication. My friend approached me with grace and vulnerability. He approached me with a level of curiosity that didn’t put me on my heels — I was able to really listen to what he was saying, apologize for how my decision impacted him and vow that going forward, I would always ask rather than making decisions for him and others.

        Our relationship is intact, and I now have information that will help me become a better friend to him and others.

        4. Be Mindful of Delivery, Timing and Messenger

        Communicating effectively also requires thinking through the delivery of the message one intends to communicate as well as the appropriate time for the discussion.

        In an Entrepreneur.com column, VIP Contributor Deep Patel, noted that persons interested in communicating well need to master the art of timing. Patel noted,[1]

        “Great comedians, like all great communicators, are able to feel out their audience to determine when to move on to a new topic or when to reiterate an idea.”

        Communicating effectively also requires thoughtfulness about the messenger. A person prone to dramatic, angry outbursts should never be called upon to deliver constructive feedback, especially to people whom they do not know. The immediate aftermath of a mass shooting is not the ideal time to talk about the importance of the Second Amendment rights.

        Like everyone else, I must work to ensure my communication is layered with precision and care.

        It requires precision because words must be carefully tailored to the person with whom you are speaking.

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        It requires intentionality because before one communicates, one should think about the audience and what the audience needs in order to hear your message the way you intended it to be communicated.

        It requires active listening which is about hearing verbal and nonverbal messages.

        Even though we may be right in what we say, how we say it could derail the impact of the message and the other parties’ ability to hear the message.

        Communicating with care is also about saying things that the people in our life need to hear and doing so with love.

        The Bottom Line

        When I left the meeting with my dear friend, I wondered if I was replicating or modeling this level of openness and transparency in the rest of my relationships.

        I was intrigued and appreciative. He’d clearly thought about what he wanted to say to me, picked the appropriate time to share his feedback and then delivered it with care. He hit the ball out of the park and I’m hopeful we all do the same.

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        Featured photo credit: Kenan Buhic via unsplash.com

        Reference

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