Like any severe disease, Amyotrophic Lateral Sclerosis (ALS) has a significant effect on the life of the patient and relatives and the people caring for them. It is not unusual for people who have Amyotrophic Lateral Sclerosis to suffer from anxiety and depression as well as other emotional difficulties stemming from having Amyotrophic Lateral Sclerosis.
The bulbar muscles are one of the primary targets of ALS, which involves the mouth and throat. As such, the gradual weakening of the throat and mouth muscles may be experienced, which may result in difficulty swallowing or speech problems. Patients who are suffering from these symptoms (and their caretakers) may consult this guide on how to best deal with the challenges as mentioned above.
ALS can alter people’s mental and emotional health, and if not checked, it will render the person struggling from it a hollow shell of their former self. This condition can make a once soulful person into an incoherent mess if it is left untreated. Half the time, people with ALS may notice changes in cognitive behavior or ability, ranging from a simple forgetting of keys to full-time dementia.
Have you recently found out that a person close to you has ALS? Do you find it challenging to deal with the said individual? Is it hard to get going after you heard of the sad news? What you are feeling at the moment is only normal, especially if you did not see it coming. We understand that it may also hurt to see that your loved one is suffering from an illness. Do not fret nor worry because there are tons of what on how you can help him or her. According to a therapist, love and support can help a lot in making an ill-person feel better about himself and those surrounding him. The moment this happened, the said person has a better chance of recovery compared to someone who is always depressed or sad.
In today’s article, we are going to share some of the top sentences to say to a person with ALS. Before anything else, we want to highlight or emphasize that saying the right words at the right time can be a significant factor in helping your loved one improve his medical condition. As such, it is crucial on your part to be sensitive with what you have to say. You need to be extra careful with your words and actions because these things can make or break a person. Make sure to check the list below so that you can be of service to your loved one:
“You Can Count On Me.”
“Most of us have friends, or at least one friend—someone we spend time with, someone who knows us better than others do, someone we can count on when the need arises,” writes Abigail Brenner M.D.
Make it a top priority to give assurance to the other person that you will stay by his side no matter what happens. Let him know or feel that he can always count on you, particularly on bad days when the latter may lose hope or feel down. Your loved one will surely feel secure knowing that he can always come to you in times of need. Take note that the moment you say these words, you must live up to this promise. Never utter them to the one you love if you cannot fulfill it. Otherwise, you will only end up hurting him.
“Let’s Do The Things You Love.”
A person with ALS may experience deteriorating physical wellness until it affects his mobility. Before it is too late, we recommend that you spend quality time with the said individual. All you need to do is to let your loved one know that you are interested in doing the activities or hobbies that he enjoys. Make him feel that you are also in love with his interests so that he will feel comfortable doing certain things with you. In so doing, you can allow him to invest his time and efforts in things that make him happy. As a result, he will start to feel better about himself. If this continues to happen for a long period, then there is a good chance that it can also help in battling his sickness. For example, you can travel together to a nearby town or go on a simple date at home.
“The larger theme is that of stepping back — looking at the larger picture of your life, uncovering what and how keeps you from getting what you want. Try to find the larger process, the emotions and skills that keep you from moving forward,” writes Robert Taibbi L.C.S.W.
“You Are Loved.”
Sometimes, it is not enough to let the other person feel that he means a lot in your life. You also need to make sure that he hears words of affection every now and then. Make it a habit to say “I love you” or “I care for you” to the other person so that he will never forget it. It is best to combine your continuous efforts of showing and telling him how much you love him. Do not let him figure things out. Keep in mind that whatever you say to him can have a positive impact on his mental wellness. Choose the right words, and everything is going to be okay. Saying these sweet words will not only improve his mood. At the same time, it will also make him realize that you passionately care for him despite his medical condition.
“Many of us are guilty of taking people for granted, so it’s good to acknowledge those who’ve impacted our lives and those we could not live without,” writes Diana Raab Ph.D.
There is no easy or fast way to handle a situation wherein your loved one is sick. Most of the time, you will wish to take away the pain he feels and transfer it to yourself. Sad to say, this option is not possible, which is why you must direct your focus instead on things that matter. For example, make it your number one task to care for your loved one who has an ALS. Do not let a day pass without reminding him of how his presence illuminates everything in your life.
Amyotrophic lateral sclerosis, most known as ALS, is a condition that interrupts the communication between the muscles of the body and the brain. The disease hinders the brain from sending instructions to the muscles which break it down slowly over time. With that, the muscles lose their function where it eventually leads to paralysis. While there are no cures for the disease, therapist, psychologists, and other healthcare professionals are doing their best in assisting patients with ALS. There are dedicated extensive researches that aim to understand and attempts to treat the disease.
What Causes ALS?
“This is a disease that has had not such a great track record in finding therapies,”says Dr. Jeffrey D. Rothstein, M.D. Ph.D., who is the founder and director of the Answer ALS program. “ALS takes someone in the prime of life, and they slowly — or rapidly — lose all their ability to move.”
Before starting the enumeration as to what causes ALS, it is essential to note that there are two types of the condition. There is the familial type, which is known to be a hereditary case and appears to be in at least 5% to 10% of individuals with ALS. Sporadic, on the other hand, is the most common condition where it affects individuals for approximately 90% to 95% of those patients who get diagnosed with ALS. But while the alarming percentage of sporadic ALS’s cause is still unknown, the familial type seems to have known facts that help direct current studies and research to possible treatment.
Increased Radicals and Damaged Protein Processing
Numerous risk factors, such as gender, age, and genetics, affect the majority of ALS. The probably of the development of the disease seems to increase as individuals increases in age. That is usually between 40 to 60 years old. The condition is also common in men than in women. However, the difference does not manifest over the age of 70.
In some cases, genetics execute a role in the attempt to identifying the cause of the condition. It is considered one of the risk factors due to genetic variations that include gene codlings for specific protein loss that are common in patients with ALS. In terms of the protein loss, it increases the free radicals that slowly damage the functioning cells in the body, such as those responsible for protein and energy production. That is due to the incorrect protein processing of the nerve cells that form clumps. It means that the abnormal protein accumulates in the body spread from cell to cell. The clogging up eventually contributes to cell degeneration and cell death.
Autoimmunity and Gene Mutation
Another avenue that attempts to understand the causes of ALS includes the method of looking through the malfunctioning immune system. Since the disease has something to do with muscle function, one explanation contributes to cell regeneration and gene mutation. These include the effect on the changes in the brain’s neural activity, which results in a senseless immune system. With this, the immune system begins to attack its own body where it kills all the functioning and nonfunctioning nerve cells at the same time. And speaking of mutation, another possible explanation involves it because it can become a factor for ALS that leads to glutamate toxicity. Glutamate is a neurotransmitter that gets released from the brain. Usually, it can be found in high concentration near neurons of patients with the condition. That is because excessive exposure to the neurotransmitter damages the nerve cells structure.
Environmental Factors and Lifestyle Changes
While there are multiple genetic causes of ALS that gets backed up by scientific studies and research, its ecological roots are not that well understood. That is the reason why people with the condition do not often receive a piece of professional advice to change their lifestyle instantly. Perhaps that is because there is no specific healthy lifestyle that proves to decrease the risk of developing ALS. However, in some cases, links have been found between ALS and other factors. These include the exposure to electrical and mechanical trauma, exercise exposure to heavy metals and chemicals, military services, high levels of exercise, as well as cigarette smoking. There is also the possibility that the environmental factors work simultaneously with genetics to increase individuals’ chance of developing ALS. “There’s a lot we can do to manage the symptoms and improve the quality of life,” says Rabia Malik, MD, a neurologist at Rush.
Why It’s Hard To Cure ALS?
Up until today, ALS is still one of the most devastating and complex diseases to affect humankind. No one knows precisely how and why these cells die, and that is what makes ALS so hard to treat. “The medication does slow down the course of ALS, but it is not a cure,” says Dr. Greg Schaublin, M.D. In its 90% cases, the condition arises so sudden with no apparent cause that makes curing it takes the most critical medical and scientific challenges. Despite its many unknowns, the continued awareness for ALS is essential to help open up a new avenue for its treatment.
ALS or Amyotrophic Lateral Sclerosis is a kind of illness that falls under the category of progressive neurodegenerative disorder. In layman’s term, the said disorder takes place when the death of the cells in the human brain as well as in the spinal cord will slowly take place. The immediate result is the muscle weakening from the brain down to the whole body. The extent of this disorder will vary on a case to case basis, but the worse effect of the said disorder can be very extreme or even devastating not just to the physical body, but also for one’s mental health.
If you’re one of the millions who are on social media every day, then you most probably have heard about or joined in the Ice Bucket Challenge – a worldwide effort in the hopes of raising money for research cost on Amyotrophic Lateral Sclerosis. This was done by either pouring cold water with ice on yourself, donating $100, or both. Families, friends, coworkers, and all kinds of individuals joined in on the challenge.
However, the viral marketing campaign’s success would not be completely attained if people did not acquire more comprehensive knowledge and understanding of ALS, a condition that affects more than 30,000 Americans and has killed nearly 6,000 people yearly.
Instead of presenting facts and other studies here, which you might have already read, we have listed below five misconceptions that we often have about ALS. If we are suffering from the disease, or our loved one is, we are often so caught up with finding out how to relieve ourselves of the condition that we believe everything we hear. So here are things that ALS is NOT.
ALS does not only involve motor activity alone. Sadly, physicians and patients themselves often suggest this misconception. They assume that the affectation for ALS is solely motor, that as an individual deteriorates, his mental function remains the same. This is untrue, as proven by a new study that showed approximately 30% of patients developed mild to moderate cognitive impairment, while about 10% developed severe dementia. Initially, ALS starts with weakness in the hand or foot and is sometimes mistaken as carpal tunnel syndrome, only that the former is not painful and the latter is.
Over time, months or years, the weakness advances from one side of the hand to the other, until all extremities become weak. The muscles of the mouth and throat are also weakened, thus the patient will eventually have difficulty breathing, chewing, and swallowing. This hallmark is what makes ALS deadly, as the patient will soon need a respirator to live, but the weakness will not stop.
ALS is not a result of Lyme and other infectious diseases. Initially, the presentation of ALS can look like a curable illness, such as Lyme disease, which is caused by a tick bite. However, this disease can be alleviated by antibiotics, while ALS cannot. Also, neurologists can clearly isolate the two conditions through clinical tests and a diagnostic workup.
Moreover, no single study has suggested that ALS is caused primarily by an infection. In fact, according to neurologists’ records, 90% of ALS occurs sporadically, or just out of the blue, with an unknown cause. The remaining 10% is attributed to genetics.
ALS is not a result of too much sports or sports gone bad. This information spread when some data suggesting that there was a higher likelihood for football players to develop ALS, although there is much research to be done for this to be accepted as a fact. Studies should be done on other contact sports to further support this claim. Incidentally, Lou Gehrig, a former athlete, suffered from ALS (hence the disease is also called Lou Gehrig’s disease).
After that, another athlete gave more fame to ALS being caused by sports when Steve Gleason got the same illness. He has become an inspiration to other athletes as he has shown how people like him can fight ALS by customizing his home and using different tools to help him cope and communicate. He also did the ice bucket challenge naked.
ALS is not an illness of seniors only. In fact, the onset of the disease is 54 – and that’s not old. Lou Gehrig was diagnosed in his mid-30s and died at a young age of 38. Perhaps the idea that it is usually seen among the old people is because they are the ones who are inflicted with degenerative conditions like Alzheimer’s, Parkinson’s, and yes, ALS. But the condition is not exclusive to seniors.
ALS has a large age of onset range, which is from one’s teenage years to as old as he can get. Only one out of 800 males and one out of 1000 females in the United States will die from ALS.
ALS is not an untreatable disease. Just because there have been very few drugs available in the market for ALS, it doesn’t necessarily mean that no one cares. There is only one drug that is approved by the FDA to be administered to ALS patients. The name is riluzole and it was formulated in 1995. Unfortunately, it has only provided moderate outcomes. Since then, a lot of clinical trials on new medications have been attempted in the hopes of achieving decreased progression of the disease but to no avail.
Despite the impediments, pharmaceutical companies are increasingly eager to conduct studies and clinical trials to find a better solution for curing ALS. It resulted in many interesting discoveries about the disease and exploring new tools to observe and study it. And one of the most vital discoveries is that of stem cell therapy.
The Ice Bucket Challenge made waves in social media, and this certainly helped increase awareness about ALS, including donations from different organizations. On the contrary, there were also some who criticized the challenge, saying that it was only a waste of money and water and that the disease does not need that much attention. Nevertheless, that challenge was only the first step, and a big step at that, to a better and clearer understanding of ALS.
Up to this day, there is no definitive treatment found yetfor ALS (amyotrophic lateral sclerosis). What causes the disease is not known also, but the symptoms of progressive muscle wasting are very evident. The person suffers from speech and swallowing difficulties, problems with mobility and trouble breathing. With the worsening of symptoms and discomfort in eating, doctors orient caregivers on the importance of the kinds of food they should give the patient.