Thursday, February 21, 2013
What is ALS???
I can give you the exact name and its description of ALS. But you would have absolutely no clue what an ALS patient goes through. Even with this said you won't completely understand unless you go through it yourself. So today I am going to share what I am dealing with for just today. This morning I woke up at 9:30 but since I have been having severe muscle spasms and restless legs at night I needed to sleep a bit longer. I assume its because my legs are getting much weaker. I can barely walk even with John's help. But I try to every single day. John will ask do I need the chair? And I will say no I have to and need to move my legs. But with not sleeping at night for a few nights and now unable to even nap it makes for a rough day. With ALS we tend to get muscle spasms. Your muscles cramping up into knots. You know how a muscle spasm feels... Now magnify 10x's the pain. But remember that pain is not localized. With ALS you have muscle spasms and twitching all over your body. People will have all kinds of remedies that do work temporarily and it doesn't stop the twitching. Doctors have medication and that doesn't seem to help unless I take more medication. So today I had John call to see what we can do and I will try a new med. tonight and see how that works. Now I've touched on that, so many other things to touch on... With ALS you have to depend on others for everything. Showering, feeding, dressing and even scratching that itch on your nose. The feeding I am ok with at home, I am very uncomfortable to have others watch me eat. I have difficulties chewing without being rude. No graceful way of eating. I need to be very careful of what I eat for fear of choking. Even though I have a feeding tube, I just use that for water. Having ALS there is no doing anything fast We have adjusted our lives around this disease. Now don't get me wrong, I am a positive person with a great attitude. But even the best has down days and that is ok. We need those days with or without ALS. It allows us to keep grounded and to appreciate the things that we have in life. ALS is a terminal disease but that doesn't give me the right to give up or give into this killer. I have great quality care and a great life. I must admit, I have a great husband and family that supports and stands by me every single day. But as great as that is I still tend at times to feel as though this disease has a tight hold on me. But what this disease doesn't have,is my ability, willpower and determination to fight this disease head on. Regardless of the the pain and tears I deal with, it will never ever have a complete hold of me and my ability to stay and live my life strong. So regardless of your situation, being positive and a great attitude, you can get through anything life throws at you. Always remember that it is ok to shed some tears. by doing that it allows you to see a clear picture of what you need to do and those tears that run down your face. They will make you stronger. Just don't let it take control of your ability to live your life. Live life strong and Never give up