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

Thursday, February 7, 2013

Live your life strong

As I sit here blinking at my computer going through pictures of my ALS family it amazes me at the strength that you have when dealt with a terminal illness /disease. I was very active before ALS took the strength out of my legs and upper body. Running for me was something I loved doing, the farther I would run the greater I felt. You can say that I most definitely had a runners high. For me sitting still was never an option by choice. I absolutely loved working out and almost every day you would find me at the gym, helping others or working on Me. You would think that is awesome and yes it was. I could and would bench press with the big guys lifting 190lbs. Although that all sounds great,and then it was all taken away in a flash. Because I was diagnosed with a disease that many will die from within 2 to 5 years after being diagnosed. At one time ALS was known as a tall old man's disease. Well I am not tall, I'm 5'2 and eyes of blue. I am certainly not old unless you ask my grand babies and the last time I looked I still have female body parts so I am clearly not a male. Point being anyone at any age can get this disease. Many times when John and I go somewhere people will ask a question about me to him, and many times he will say ask her. People who have ALS are aware of what is going on. We are of sound mind. But what really amazes me is that this disease as long as its been around we are still searching for effective treatment and a cure. So my mission is to help raise ALS Awareness to everyone possible. Now those of you that know me know what I am capable of doing. But in this case I need /want your help. Many of you know how positive I am so this may have you think twice but be assured that even though I am being realistic I will always be positive. This disease will take my life, this disease has and continues to make me become a prisoner in my own body. This disease takes every bit of energy from me regardless of what I am doing. This disease that I and many others have is a killer. But even though this disease that is so horrific also has a plus to it. The people I meet and talk to who deal with this disease are nothing less than amazing. The courage and willpower is extrodinary beyond words. When I see my family they tell me how they couldn't do what I do. If they had to deal with any life threatening disease, they would because of our family strength and support. The bottom line is yes you could and yes you would if you were forced too. Life isn't always fair, life isn't always going to be easy. But life is about choice and how you are going to decide to live it. We all will die but how will you want others to remember you and what mark will you have left so others can Learn? The choices and faith that you carry within you makes who you are. So why allow ALS or any disease stop you from living. As I have always said "I am living with ALS... Not Dying!" So live your life strong and never give up!