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

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!

Making your mark. a reality check

Well its the beginning of a new year and many people have broken goals and resolutions. As I sit here in my chair I wonder what would I be like if I was normal without having ALS. What would my concerns be and how would I be with others. I find myself doing more of what I feel I have to do and want to do in life. Not everyone is lucky enough to know what they are set out to do. Not everyone is lucky enough to do what they want. For me I had absolutely no clue of what I wanted in life before I was diagnosed with ALS. Even after it still took sometime to figure me out. Being diagnosed with a life threatening disease has a way of waking you up and smacking you in the face with reality. You know that you now have something that will not go away. So you have two choices deal with it and move on or pity and feel sorry for yourself and die before your time because you won't allow yourself to be happy. Seriously this happens but it will not happen for me. I know what I want and to do in this life. Yes it sucks having ALS is the way to find out my calling in life but at least I found out. Many people say I'm always smiling and maybe not facing this disease and that I'm in denial. Really if that was the case I wouldn't be doing what I do to help others. This disease isn't something that you can just ignore. This disease takes your ability to a whole new level of being a prisoner within your own body. Imagine yourself sitting for hours not moving, imagine not being able to talk or others not understanding you because your voice is affected by this disease. Imagine yourself sitting and watching others eat knowing you would love to join them. But you can't because you have a tube that you get fed from and knowing you will never taste the turkey from Thanksgiving or that hot dog with everything or even the pizza on a Friday night. But you can guarantee that you will get some sort of liquid for dinner. Yum!!!! Well have I made you think yet? Well if not here is another fact and yes it is personal so imagine yourself a lady having monthly periods, who takes care of that because you can't use your hands. Now that same issue, do you realize how embarrassing it is that you can no longer take care of your own self and others you depend on. Well lets be real many deal with this daily including myself but I'm lucky enough to have someone that cares and takes great care of me. Imagine if I had no one. Yes there are many people dealing with ALS that has not one person to help them. So when you see or here of someone who has a debilitating disease say to yourself how can I help them. I often think to myself if it was John and not me, would it be the same? I would love to think yes but one never will know until you are put into that situation. So now I ask am I in denial... Hell no! I am realistic and have come to terms with ALS. But I don't have to pity myself and think I'm dying every day. We all are going to at some point. I am lucky enough to do what I am able to do before that happens. So I encourage everyone of you to do a reality check on yourself and really put thought into it, ask yourself if what you are doing makes you and others happy, are you making a difference? What am I able to change or do to make my mark? Think about this and do something, because life goes on with or without you. Its up to you to make your mark. So live life strong and Never give up!

Avery's footprints

What a beautiful day, We are here in NOLA and I have to say I love it here. This whole journey across America for ALS has been such an uplifting experience in so many ways. To pinpoint a favorite place that would be very difficult but for a favorite moment I too have many but one keeps putting tears in my eyes and that would be at my niece's in Minnesota. As we spent time together we had laughter and tears and tiny feet running all around. We also had great conversations. However the moment that tears me up was when Shan was painting the RV and Avery Shan's daughter wanting to help and we painted her feet and put her footprints on the RV. Having those footprints mean very much to me even though they are a bit smudged. The meaning for me may not be what others have but to me its fighting for a cure for all of my grand babies, nieces and nephews. Avery's footprints are my symbol that I must continue my mission so that our babies and their babies can have effective treatment and a cure for ALS. I am not sure the type of ALS that I have but I will fight with every fibor of my being that no one else is affected in my family with ALS. Many of people may think this disease isn't that bad, and for me I am doing good as a matter of fact I am doing great. But others aren't as lucky. Many have machines helping them breathe. Many can't eat or drink and many lay in bed unable to move or even communicate. Lets face the facts that ALS is a horrible disease but what to me is even harder to accept is that this disease has been around since the 1800's... Yes that long and it is and always have been a disease that will kill you. This disease still does not have treatment or a cure. Further more its a underfunded disease. ALS SUCKS but what will suck more is if our government stops the funding that we already have. What our government doesn't and refuses to see the length that we the ALS patient will go to to help raise Awareness and money and yet all that matters to them who is better the democrats or the republicans. Lets face it they don't care or understand what we deal with daily. I consider myself lucky. I have great care and support, many do not. So when we took on this journey I am hoping to get someone to listen and understand that we the patient don't have time to figure out who is better. We need someone who will stand up and say we have a cure and effective treatment. So when and it you see our RV look at Avery's footprints and know that this is my reason for raising ALS Awareness. ALS can mess with me but don't mess or even think about touching my family. So until next time live strong and never give up!

My journey Across America for ALS

Well I'm here in the camper and thinking about all that John and I have done. To think that Across America for ALS was just a thought that we put into action. Having ALS has made me aware of how much we put things off. Many first thought that this journey was a vacation /pleasure trip in our rv. This mission that we are on is very far from a vacation. Although we are having a great time, this is work. It amazes me at how many people that have never heard about ALS. But the rewarding part is after educating people and giving them my Advocate card and seeing them on facebook. That is such an amazing feeling knowing that we touched someone in such a way. And to think that this was put together from talking on the way from Cleveland doctor appointment. But when it was put into action was the day after hearing the news about a very dear friend Rob Tison who is now an ALS Angel. His death made me so very angry about ALS that I couldn't just sit back and allow this disease destroy and take great people away. On this journey we have met some amazing people and we all have one thing in common. Many of you are saying or thinking ALS. Guess what? You're wrong... We have in common that one : we need to find effective treatment and a cure so no one else has to deal with ALS. The second and very important is that we all are living and not dying. Even though ALS is a disease that takes everything away, we the ALS patients find the strength to hang on and fight with all we have. This journey has not only inspired me. I see how much John has come out of his shell. Before this disease he would never go up to someone to make conversation. Now you can't stop him and to be honest anyone who tries to stop him would be a complete fool because he won't let anyone stop him. He has dealt with me at my worst and deals with this disease daily. I have my soulmate forever. With this disease it can make or break a relationship. John and I have heard how people who deal with this disease and others that their partner/spouse will just up and leave. This disease does add stress and lets face it some people can't or just don't want to deal with this or any terminal illness. John is not only my husband, he is my everything. I know he is right there for me no matter what and he wouldn't have it any other way. This journey has allowed us to see things that we can hold in our hearts and look back on. We realized that even though we are faced with a terminal illness, we won't allow it to control us. This journey has given me so much and to share it with the world but most important the ones I love so very much and them supporting us means so much to me. Even though I want to get national attention, not for me but for this disease. Its amazing that even if I don't I know that my family is and will always be proud of how we are helping others and to me that is the greatest reward ever. So when you are out in public go up and ask the question... Do you know what ALS is? Then educate them or talk about this disease. I do know for a fact that you will make people think.

So until we see each other again remember Never give UP!

I am still ME!

Over the past few months I have many things going on that many would think no big deal. But to me it was something that had consumed me to the point that at times I would cry for no real reason. Over the past few months I am seeing the progression of this disease affect voice and how I talk. Many times I will have to repeat myself and still will have someone say what I am saying for me. Talk about frustration... You would think I had a few to many. Lol In the early part of July I had a diaphragm pacer and feeding tube put in. Although everything went well I felt different and less attractive to my husband. Having wires and a tube coming out of me. I at times feel like an alien. Mentally it took a lot out of me. But that is where my family support came into play. With ALS family support is so very important. After my surgery my head was playing mind games and I really thought I was worthless. That is until my daughter talked to me and made me realize that I was feeling sorry for myself and at that point I turned myself around and realized that I still have a ton to offer and even though I have a tube and wires coming out of me it doesn't change who I am and how important it is to help others out dealing with this disease. Lets face it and be honest to ourselves... Life isn't always gonna be easy or fair. But it doesn't allow us to pity ourselves. In life we learn as children to get back up after falling and start back over. As adults sometimes we forget what we learned as kids. To me it is what I have learned as a child and from others that it is clearly ok to fall. But I also feel you better get back up and if you need help its ok to ask. I was very head strong before this disease. Now having to depend on others for my wants and needs, I have to put that pride aside and accept the help. At times its humiliating and embarrassing and at times it can be funny. Laughing at yourself depending on the situation can be a good thing. I now look at me living with ALS the new normal life. Life has its challenges and its up to us to learn how to accept and overcome those road blocks in life. As I have said to many people that for me in a weird way that having ALS is a blessing. What I mean by that is that having this disease made me slow down and appreciate what I have and what life is about. Before this disease I was all about what I can do. Now I live thinking what Can I do to help others and think less about myself. Its amazes me at how you can achieve so much when you set your selfishness aside and do for others. Even though I never considered myself selfish before I still had an presence about me that when I look back and think wow I was like that and I am so glad that I have changed the way I think and do things. This disease can be and is hell but seeing what I see and doing what I do has made it much easier to deal with. Having this disease has made me live life and it has brought me very special and beautiful people into my life. So when you look at me I won't feel like an alien. Regardless of the wires and tube... I am still ME! Remember never give up and remember you always have someone to lift you up when you're down

Happy Mommy's day to my Mom

For Mother's day I want my mom to be a focal point in this post. My

I have many memories of my Mom from when I was young up to her death. Some great and some not so great. My Mom had six kids and to say we were perfect angels I know for a fact that she is laughing at that statement. We were far from perfect but I know one thing she always loved us kids regardless of what we did. No I won't go into details of how we were. My Mom and Dad divorced when I was young so she did her best to raise us kids. Many years later my parents worked on things and worked at being parents together and I have to say that they reminded me of Edith and Archie Bunker. The bickering they did back and forth. But in the end of her life they really shown that they really had a true love for each other even though those words were rarely used. My Mom had a great sense of humor and yes at times she could be so very bullheaded and make you feel guilty into doing something for her. She knew exactly how to play that mom card and she did it well. Although even though us kids saw through her. We would do what she asked because she needed the help or support. My Mom was very much into doing things with the family. Actually both my Mom and Dad love family time. To this day my family creates things just to get together and that is because she always wanted her family close. My Mom when we were growing up she would play games at the kitchen table or we would talk about anything. As she would say we were just shootin the shit. She had these silly sayings and oh how she loved to sing and dance. She had a beautiful voice, even though she would say my voice is gone from smoking. When my Mom became sick she would be in and out of hospitals constantly and my Dad would be the one taking care of her with us kids to help. Finally her final time in the hospital was the absolute hardest. My mom went from feeling good to the next day very weak, fever and that night going back into ICU. Where we found all of us kids and my Dad by her side saying our good byes and crying. When she left us I know for a fact that the Hanna family will always be close. She died January 29, 2008. even though she physically isn't here she is with us always as a family and with each of us watching over us and probably laughing away. My Mom wasn't perfect but she was perfect and still is to me. Her beauty is all around us and her memories will never be forgotten. So if your mom is alive, don't wait for mother's day to come to tell her how much you love her. Call or go see her and tell her how special she really is. Mom you are so very special to me, you taught us kids many things but the most important is how important family is and to appreciate and love each other through the great times and bring each other closer through the bad so we can help others out. I love and will always miss you. Love your baby girl!