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DiscussionHave amyotrophic lateral sclerosis (ALS): Want to connect with others
Brain & Nervous System | Last Active: 1 day ago | Replies (30)Comment receiving replies
Replies to "@ellu you are special! To be so active! I was diagnosed two months ago and spent..."
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@barbarapolo Dear @barbalopolo, No, I was not depressed when I was first diagnosed, as I have faced death and thought through death before. I also suffer from Bipolar Disorder (for over 20 years), and have experienced deep, deep depressions several times. I have been hospitalized because I was suicidal several times. The thing is, through these exeriences I was confronted by the prospect of death head-on, and over the years I have been forced to sort out my feelings about death and work out a way of dealing with the prospect of disability and death. This is easier said than done. The first time you confront the possibiity of death it is shocking, overwhelming, and leads to panic and severe anxiety. What you have expeienced is completely normal. The first step you need to take is talk about ALS and death with family, good friends, or even a psychologist, to set your thinking straight and come to terms with your diagnosis. This is not quick or easy. It may take se veral months to work your thoughts through and learn a way of coping with your diagnosis. It is normal to panic at first, but by talking things through things will become clearer. You might still hate your diagnosis, but you can learn to live with it. You can learn to think about not what you can/can't do now or in the future, but about what you CAN do and what you WANT to do in the rest of your life. I am retired, so I have cut all the things I didn't enjoy or gain pleasure from out of my life, and focussed on things which I like and want to do. This might be spending time with family, making a special trip somewhere, having lunch with friends, seeing the latest movie, taking up a new hobby , lying aound reading an intresting book, watching something on Netflix.... focus on those things you enjoy, either by yourself or with other people. Evey day is a new day, and as you and I face a limited lifespan we don't want to waste a single day! Look for support groups near you, and make the effort to met people in the same situation. Not only can you find comfort, but you may be able to give comfort to someone who needs it! I can't tell you, no-one knows, how and how quickly your symptoms will develop, but don't think about that!
Look for the good things in life, enjoy the things you like, and accept the support and help your family and friends offeryou. They are worried, and want to help, so talk about your fears and worries and let them into your life. I was diagnosed one year ago, and although I use a roller for mobility (my balance is bad) and I have a bit of weakness in my left arm, I don't let that stop me from going out of the house and living in my community. This sounds sentimental, but make the most of each day, and marvel at the wonders of the world. Keep posting on this site, so you can meet and relate to others on the same path. With best wishes,
@ellu