Mental Health Ramblings – Taking Care Of A Loved One With ALS Results To Emotional Exhaustion

This year has been a lot for my family and me. Between the pandemic, riots, political issues, hurricanes, wildfire, and earthquakes, perhaps there is nothing that surprises me anymore. I believe I am more than capable of handling unexpected things because 2020 already pushed my physical and mental health to the limits. I must say, I am happy I made it this far despite all the negative things that surround me and all the uncertainties I had to deal with. As always, I keep my promise to myself to always focus on the good things in life. I always try and support myself because I know it is me who can only care for my mental health the way I should.

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Unfortunately, these past few days, my emotional well-being is a bit uncooperative. I feel so emotionally exhausted and often overwhelmed with a lot of things. I easily get irritated and upset, even if for no significant reason. My head feels so heavy, and it is as if something is trying to rip off my brain from the insides of my skull. And for a while, I wondered if I was depressed because I can’t seem to find the correct explanation to convince myself that I am okay. All of these instant changes happened right after I took the responsibility of taking care of my brother after my parents passed away.

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It Is Not An Ordinary Task

I know I should not complain about things, and I know I should not say this, but taking care of my brother is the most exhausting task I have ever considered. It even became a worse feeling compared to my parents’ death. Do not get me wrong. I am saying this not because my brother and I are not good terms because we are, honestly. I say the whole experience of being with him ends up exhausting is due to his mental condition. My brother has ALS, and unfortunately, there are quite many things he can no longer do anymore. That said, it leaves me no choice but to take care of everything for him. Honestly, it is not that big of a deal. I am more than willing to be his companion. But with all the responsibilities I have to take in, things eventually pan out. I began to have racing thoughts about how I should live my life freely now that I have to stick with him all the time. Sometimes, I thought of leaving him all by himself and just forget about he even existed. But that’s not me. I may not be the nicest person out there, but I am not a vile individual who can do that to my brother.

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Emotionally Drained

A few days back then, I was so sure that I am experiencing depression because of some particular symptoms I have read online. But then, when I checked myself once more, I found out that I am not mentally ill but rather emotionally exhausted. The difference between the two things is quite uncanny. Perhaps that makes me conclude to having a psychological problem when, in fact, I don’t. Nevertheless, that is what I am feeling right now – emotional exhaustion.

I am emotionally exhausted, not because of the task that keeps on piling up. It is also not about the instant responsibility I have to deal with now that I am the sole caregiver of my mentally ill brother. Instead, it is about the lack of emotional support, especially when I needed it most. It has been hard for me to deal with these emotional dilemmas because, all the time, I had to lie about how I feel. I need to convince myself that I can manage and that I can always do better. I have to control my emotions and not let it get into me. That way, I won’t break down. At least, as I thought, I can find my way back to why I even bother living in this miserable life.

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Final Thought

Stuff around my life lately is uncomfortable. But the thing that agitates me is the way I respond to stressors. It is completely out of my character to give up and become unmotivated because I always knew what to do to save myself from emotional and mental struggles. But this time, I want to express how devastating this battle is for me. I know this is not who I am. Unfortunately, I can’t help myself from feeling down. Truly, it is a shitty time, and I don’t want to stop crying. I am a strong person, and I know that. But if in case things are still not clear here, please do understand the advice I would like to share. Not because a person seems so strong doesn’t mean he or she doesn’t need help.

What You Need To Understand When Someone In Your Family Has ALS

It is entirely difficult to assist family members with ALS. Not only the symptoms can sometimes be subtle, but the whole struggle is unbearable to handle. It becomes devastating to know that your loved ones are having difficulty grasping objects. There is a constant concern that they may severely damage their physical health due to continuous unexplained trips or falls. It pains you to see them struggle in controlling their arms and legs because you know it gets weaker and weaker.  And as the condition progresses, it hurts you the most to see them struggle with the difficulty of speaking, eating, moving, and even breathing. Understandably, there are things you want to do to help them. But be mindful that even though you may have a good intention, sometimes what you are trying to do can become too overwhelming for them.

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Do Not Think Of ALS As An Immediate Death

The thing that a lot of individuals fail to realize is the way how they look at ALS. A lot assume that since there is no cure to the condition, people who have it automatically dies. With that mindset, some are not putting an effort anymore in providing their loved ones with ALS the kind of life they deserve. That instead of cherishing memories with their families and friends, other people prefer to isolate or move them away from the world. Again, the intention might be good, and perhaps these people only want their loved ones with ALS to be safe all the time. However, taking away their chance to live life like normal individuals is much more devastating. Instead of picturing your loved ones leaving the world sooner or later, why not do your best to spend unforgettable memories with them?

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It Is Not Their Fault They Have ALS

Ideally, you understand that your loved ones will need twice as much as your attention as the disease progresses. The amount of assistance you will have to provide them can become too much to handle. It can cause you a lot of pressure, stress, and anxiety. With that, you can expect that everyone in the family will start to avoid obligations, and each member will soon skip on their responsibilities. Sooner or later, the whole commotion will create conflict. And in no time, everybody will point fingers and blame ALS as the root of all the family’s challenges and burdens. Sadly, that particular scenario is common to happen. To avoid that, you need to understand that your loved ones with ALS didn’t deserve the blame. It’s not their fault they are experiencing the condition. Thus, be mindful enough to handle stress maturely and avoid making your loved ones feel useless just because you thought of them as incapable individuals.

Their Brain Functions Differently

Maybe you thought that your loved ones’ mental state is no longer functioning and that they are now considered intellectually incapable because of ALS. But ALS rarely affects the intellectual aspect of a person. Therefore, your loved ones’ cognitive functions remained intact despite their inability to speak. Also, witnessing family members with ALS laugh and cry for no reason do not entirely mean they are crazy. The whole instantaneous change of disposition is known as the pseudobulbar effect. It is a sudden interruption of signals in the brain’s upper neurons connected to their mood. So next time you see your loved ones with ALS laugh or cry, it does not instantly mean they are happy or sad.

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They Are Still The Same Person

ALS is something that can change others and your perspective in life. It is a condition that can make you realize that there are so many uncertainties that you might encounter unexpectedly. And as it changed people’s body and slowly damaged its functions, one thing remains – their personality. Therefore, never assume that ALS is taking away the character of your loved ones. Their condition can never do that. They are still the same individuals who enjoy doing the same thing. They can even spend time doing recreational activities with family and friends. They are still people who laugh at something funny and cry at something painful. They are still individuals who know how to love and feel loved. They are still the exact persons you knew even before they suffer from the disease.

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Takeaway

Unfortunately, there is no cure for ALS. However, there are interventions to help family members with ALS to live longer. You can utilize supporting devices that can assist their mobility issues. You can encourage them to stay positive with life through healthy habits such as reading, writing, and listening to music. You can also take advantage of the care that others can offer. There’s the caregiver, physical therapists, psychologist, dietitian, and so on. As you can see, there are so many things you can do to help.

Activity Suggestions For ALS Patients During Quarantine

For people living with ALS, the quarantine measures are no different. While for most, staying at home is new to them, it was the “normal” that ALS patients knew. ALS is a progressive disease that targets the nerve cells that control voluntary muscle movements. Patients do stay home most of the time because it’s difficult for them to go out or move.

Since ALS is a terminal illness that only gets worse over time, then the coronavirus’s presence makes dealing with the disease twice as hard. It is hard enough that you cannot control your voluntary muscles, now you need extra precaution not to contract the virus.

Although staying at home has been typical for ALS patients, dealing with the pandemic is still as difficult for them as for everyone else. Some ALS patients used to get out occasionally for support group meetings, lunch or dinner out, and sometimes even trip to the grocery store. But because of the pandemic, even these limited activities are on hold. 

If you have friends or family members who are ALS patients, keep them entertained, and nurture their mental health by suggesting these activities for them to do.

Read

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Reading is not only a source of entertainment, but it also exercises the brain. Reading a book is always a new experience as it immerses the reader into an imaginary world.  There are lots of digital libraries that are accessible with gadgets—laptop, tablet, or phone. Ask them whether they are into fiction or non-fiction, into sci-fi or biographies, these digital libraries will surely have their specific preference. 

Yes, nothing beats the experience of reading on a physical book, but we are in an unusual time wherein almost everything is going virtual. Plus, borrowing an actual book is not ideal since we are trying to minimize physical contact.

Music Or Podcasts

There are a lot of online platforms for music libraries and podcasts like Spotify and Apple Music. Create a playlist for them for different moods and occasions. Make a playlist for them to listen to in the morning while they do their routine, or a playlist that will help uplift their spirit on not so good days. You can also make a playlist that will help them calm down. You can also find out their favorite songs make a playlist of them!

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Podcasts are stimulating for the brain. There are many different podcast topics like news, politics, lifestyle, motivational, and even comedy. Find out which theme fits their taste best and recommend it to them. Depending on the topic, podcasts can be both educational and entertaining.

Watch Movies

Watching a movie helps in getting the head off from worries. For an hour or two, the mind can relax from endless worrying and jump into a different world. If they are into feel-good movies, try suggesting  The Intern, Julia & Julie, or laugh with My Big Fat Greek Wedding. The internet offers endless choices of movies that are available for streaming.

Also, Netflix may be one of the most known streaming sites, but don’t be limited to what Netflix offers. Lots of other streaming services are available apart from Netlfix, like HBO Max, Amazon Prime, Disney Plus, and Hulu. 

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Breathe Fresh Air

If they have access to a backyard inside their home, help them go out for a dose of fresh air. Breathing fresh air helps the lungs to be at its full capacity. If they are living in a building, try opening the windows for a period to allow fresh air to circulate inside the living space. 

When the brain has an optimum amount of oxygen, the mind feels and functions better. Aside from this, fresh air helps destress and improve overall well-being.

According to Melissa Burkley, Ph.D., “nature acts like a reboot for the overloaded brain. Modern life is constantly bombarding our mind with information and distractions. This makes it nearly impossible to hear the creative whispers of our inner mule over such mental noise. By removing these distractions, our mind is freed to wander, leading us on exciting new journeys across undiscovered paths.”

The pandemic is not an easy time, especially to those who have already been dealing with ALS. But with enough support and by doing the activities mentioned above, they will be able to power through this difficult time.

Ways To Potentially Prevent Getting Multiple Sclerosis

I went to the 2019 Multiple Sclerosis Event with my mother, expecting to learn more about her disease. You see, she had an MS diagnosis not too long ago, and no one in our family knew anything about the condition. All we knew was that it made breathing, seeing, walking, and even remembering for Mom, which was scary.

From what I understood in one day, multiple sclerosis is impossible to predict. It is not curable, either; the doctors can only offer short-term relief with their treatments. The only silver lining is that the specialists have mentioned some potential ways to prevent multiple sclerosis.

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Try Fasting

Fasting is an ancient practice that religious people do to exchange worldly habits with prayers. Even non-religious folks have adopted it to speed up their weight loss. Now, experts are looking at the probability of cell regeneration while fasting, which may help reduce the symptoms of autoimmune disorder.

Take Vitamin D 

People say that the easiest way to get your daily dose of vitamin D is by lounging under the sun. If there is not much sunlight in your area, or you don’t have time to do so, you can take supplements. Either way, studies suggest that the vitamin can shield you from multiple sclerosis by boosting your immunity.

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Drink Coffee 

Based on research, coffee is not only for the individuals who need to wake up in the morning or stay awake at night. It is supposed to be ideal for preventing MS development, too. But contrary to popular belief, caffeine is not the one to thank for it. The credit goes to coffee’s other compounds, so don’t think that exchanging the beverage with soda will do the same trick.

Final Thoughts

We can only help our loved ones with multiple sclerosis to stay healthy to keep their immune system from attacking their cells. If we also want to avoid acquiring this condition, there is no harm in trying the tips above.

Best Mental Health Apps To Help ALS Patients Cope During The Pandemic

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Patients with amyotrophic lateral sclerosis, which is also known as ALS, sometimes go hand in hand with anxiety and depression. This condition takes a toll on their mental health due to the challenges they face in their everyday lives. But it is especially tough now that there is a pandemic.

“The strong emotions evoked by receiving a serious diagnosis such as ALS may also lead to increased risk of mental illnesses, including depression. Multiple studies have shown that patients with ALS are more likely to develop depression than ALS-free individuals, although the reported prevalence of depression varies greatly,” Per M. Roos, M.D, Ph.D., and co-authors, discovered from their study entitled “Depression in Amyotrophic Lateral Sclerosis.”

According to research, some individuals are still not that comfortable seeking the help of mental health professionals. If you are one of these, these experts recommend trying mental health apps at this time of the pandemic. These will guide you through your emotions while battling ALS.

Headspace

Headspace is perfect for beginners who are just entering the art of meditation. If you are struggling in managing your fear during this pandemic, you can give this app a try. This program offers a series of meditation lectures that tackle various topics such as stress, anxiety, sleep, and physical exercise.

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One useful feature of this is the sleep casts feature dedicated to providing you a soothing audio experience that will help you drift into a slumber in just minutes. It also has 2 to 3 minutes of meditation to take care of your mental shift should your brain is still at its hyper mode.

Moodfit

The primary goal of Moodfit is to “shape up” your mood. During quarantine, it is equally challenging to keep the state of both mental and physical state at par without outside help. Compare it with apps that help you get into physical shape.   The same goes for this program, where it seeks to guide you to achieve the best mental shape possible.

What’s good about this app is that it tailor its approach depending on your current situation. It asks you to answer a questionnaire that will help you determine where your condition stands and its severity.

Moodfit serves as a platform for tracking your mood. With the data that you are recording in this app, you will gradually realize what things affect your emotion. You can use these insights to come up with strategies to feel better. Don’t worry. The app also gives its suggestions on how you can recover.

Smiling Mind

Smiling Mind aims to target both mindfulness and meditation. It provides you with several 10-minute activities that you should undergo daily to improve your mental health. Although Smiling Mind has guided meditations for adults, its program is mostly for children who are having a hard time coping with their conditions. Since going to medical facilities is strongly discouraged during this time, except for emergencies, this app is useful for parents.

MoodMission

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Mood Mission assists individuals who are dealing with depression, anxiety, and stress. This app gives out missions based on the user’s emotions, and these missions aim to improve both your skills and your mood. Some examples of these activities include the following:

  • Thought-based missions where they’ll teach you how to reframe negative emotions and thoughts;
  • Behavior-based missions where you’ll learn how to sew, crochet, or knit; 
  • Emotion-based missions where they’ll give you breathing exercises; and
  • Physical-based missions where you’ll have to undergo a series of physical exercises. 

Take note that MoodMission does not only let you do this for the sake of distracting you. Instead, it will explain to you how each activity can help you in your situation, what its objectives are, and how you can do it to make it useful.

Happier

The developers of Happier established this app to serve as a personal mindfulness coach. It is there to observe and regulate your feelings daily. It also teaches you how to maximize the positives in life, such as peace, joy, and happiness.

The app achieves this by offering meditation exercises, inspirational quotes, and courses on health well-being and happiness. It can also serve as your diary. There’s a feature where you can record the things that you are most grateful for and why you are feeling that way. You also have the opportunity to communicate with your fellow users so you can ask help just in case you are feeling down.

Early ALS Signs That People Often Miss

I can remember the day when I attended the 2017 Amyotrophic Lateral Sclerosis Conference. The sky was cloudless; I was in the company of amazing friends. They were as curious as I was about Lou Gehrig’s disease and wanted to know more about it.

The primary thing that I learned during the event was that not all symptoms would fit all. Some patients might deal with muscle weakness, while others might have a speech impediment. Not everyone experiences such indications early, either.

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When it comes to ALS, you should not merely dump a bucket of ice on your body to show empathy. Beyond that, you need to ensure that you are free from its symptoms. Otherwise, the illness may creep up on you unexpectedly and prevent you from living your life.

Here are a few ALS signs that people often miss.

Sudden Vocal Pitch Change

One of the first indications of the disease is a sudden vocal pitch change. The patient has technically gone through puberty already, so there is no regular reason to deal with it again. 

Inability To Lift A Small Object

Lifting an object that is as lightweight as a pencil is never an issue with healthy folks. The muscles in your fingers can quickly work together to take the pen off the table.

However, having Lou Gehrig’s disease increases the task’s difficulty level. It is as if you are a toddler with not-so-refined motor skills. You keep on dropping the pencil or unable to lift it altogether.

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Leg Immovability

ALS patients experience leg immovability in the early stages, too. No matter how you think of walking from one room to another, your lower-body muscles won’t cooperate.

If you notice these changes in yourself or a loved one, you should inform the family doctor ASAP. They are the best people to advise you on how to move forward, figuratively speaking.