The impact of ALS on some patients can be succinctly defined in one word: frustration. Frustration when you actually lose or have lost the life you expected to live; frustration when you lose your physical ability to do the things you want to do and have to rely on others; frustration when you realize what the real weight of life is and learn that you will never achieve fulfillment; frustration when you regret things that were once a waste of time but now feel like mere chicken scratch Frustration when you regret things that you once wasted time on but now feel are just trivial! Frustration when you feel that family and friends seem to abandon you when you need them most; frustration when you feel that you have lost your family, your loved ones; frustration when you see people around you and even society at large wasting time, energy and life for ridiculous reasons – especially in destroying what you unknowingly passed on now to learn how important it is to be healthy, there is frustration! And even sometimes you get frustrated because of God, religion and faith – why do so many good people get this damn disease and those nasty bad people go through life without even a rash? Also, people with ALS can fall into utter frustration and disappointment because of the endless systemic disorders. From the loss of the lack of attention from society (and even the medical community), to the hopelessness of the lack of governmental and guaranteed assistance (which often results in unnecessary obstacles and serious consequences), to the fundamental frustration of the lack of breakthroughs in real treatments or possible cures for ALS therapies. These can rob us of a vital element in the fight against ALS: hope! All of this frustration and disappointment can consume us ALS patients, and if we allow the anger, heartache and jealousy (of people we think are living better than us – especially people we know) to run rampant, then we will soon be destroyed. I’m afraid it would be the biggest lie of my life if I said that I have eradicated the above frustrations, or resolved most of them, in my almost 20-year ALS career. I guess at best, I can only say that I have been able to cope and handle my frustrations and disappointments relatively well over the years of living with ALS. In some of the examples I mentioned, I would deal with certain situations (such as dealing with government and financial institutions) by lowering my expectations to the point of numbing myself to the point of expecting negative outcomes. In other cases, I would choose to face the challenges of these setbacks head on and try to break through the limitations, especially those that I had brought upon myself internally. There are thousands of little things that most people never think about – like scratching an itch, repelling mosquitoes or talking to a friend – that can leave people with ALS despondent, torn and heartbroken. But if you have angels in your life, as I do, they can take away a great deal of the sting and angst. Certain setbacks are the kind that you never know when or where they will hit you, and they can come out of nowhere, making you feel suffocated and hurting your heart, mind and soul. Such problems have happened to me when my daughter accidentally hurt herself and I couldn’t be there to comfort her and help her; when I couldn’t do things like install screws in the house and fix lights like a man and had to let my wife do it; when I couldn’t do what I was supposed to do as a son, brother, nephew, uncle, friend, and especially as a husband and father; the kind of frustration that is tormenting! In my experience and from talking with other ALS patients, our inability to do something for our loved ones can give us the deepest, most painful frustration and disappointment as opposed to our inability to do something for ourselves. So what can we do to cope with the frustration? Here are my suggestions: 1. Technology is our friend. When I started my ALS “journey,” the Internet was in its infancy and personal computers were still a luxury in many ways. Since my diagnosis, the role of technology in giving people with ALS more freedom and trying to keep their daily lives as normal as possible has grown. While technological advances have not turned me into a “cyborg” (the dream of children in the 70’s, which I was), the near future does hold an amazing promise of getting closer to what we once dreamed of with interactions with robots, brain interfaces and the evolution of further computer processing (unfortunately these are all US military engineers). (which were fast-tracked for development because of WWII, lol). We should take full advantage of technology to offset the degradation of physical conditions. 2. Communication is key. Probably the biggest technological advance in ALS is the breakthrough in communication. I’m not talking about physical communication, although there have been amazing advances in this area that allow us to vocalize. I’m talking about the ability to communicate with the outside world, even in the case of ALS patients who are completely “imprisoned”. Because of the Internet, we can now continue to communicate with the outside world and stay connected to the outside environment. We can email, we can chat, we can surf the web, we can connect with others who are living with or touched by ALS and share our experiences, support and knowledge, we can call attention to our plight and launch campaigns to improve the lot of people living with ALS. We should keep communicating and communicating through various channels to avoid the isolation and isolation that ALS brings. 3. Count your happiness and always be grateful. I think some people may find this question problematic. What happiness and luck can ALS bring? Actually, it depends on the “lens” you choose to look at ALS. If you choose to see the “lens” of loss, always focusing on what you have lost and what you will lose, ALS will be like a dark, cold cloud that drains your mind. If you choose to look back at the “lens” of a “normal” life, you will feel that you were in fact lucky to have had the experience of a normal life after all, whereas many people do not even have that opportunity. For example, children who are born with disabilities, and people in third world countries who are living in extreme poverty and have to fight for survival day in and day out from birth. Of course, this is a rather extreme example, which may not give you any comfort. What about looking at ALS through the “lens” of freedom? Yes, ALS can and will set you free. It forces you to slow down and appreciate the essence of life and the feelings that really matter. The greatest blessing that ALS has brought me is that it has shown me the beauty of humanity and that people are willing to help me and show their love for me. 4. discovering new aspects of yourself. als gives you the greatest freedom to discover new aspects of yourself. These may be things you have enjoyed before but haven’t had time to do – let’s say, for me, writing – or they may be things you now have time to explore – let’s say how to build a website. -let’s say how to build a website. In this regard, ALS gives us the opportunity to actively acquire new knowledge, develop new interests, and expand into new areas. Even though ALS shortens our lives, it doesn’t mean we have to stop pursuing the good things in life every day and stop looking for fun and happiness. 5. Give and care for others. Finally, ALS gives us a new perspective by putting a time limit on us – although the time stamp on me seems to have faded a bit (well beyond the average survival period). Using this new perspective can give others the best gift of all: attention and love. Give these gifts to as many people you meet as you can in the limited time you have! Take care and make yourself happy!