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!

Nurses and Doctors really do care

So you would think that when you go to a hospital that the doctors and nurses will know how to handle patients with ALS. This is not the case. Although I had good care from the doctors and nurses. Some had no clue how to handle me. Now keep in mind my family has several nurses and a few doctors so this is not about bashing them or any Doctor or nurse. The point that I am trying to get across is the awareness that needs to be addressed. When I was in the hospital I had great care even though a few nurses admitted that they have never dealt with ALS patients. Now many are probably saying why go to that hospital? Well here is my reply: it's not that they aren't qualified because they are and it's not because they are so busy that they don't care because they do care very much. I feel and that that ALS is a disease that is so misunderstood. Many treat ALS like MS. A nurse asked me if I would ever be able to over come this disease. I looked at her and smiled and said maybe if we could find treatment and most of all a cure. She look at me and said they don't teach about how to help people with rare disease. Hearing what she said was not insensitive. Matter of fact she was interested and wanted to know more. She was in my room asking me many questions about the disease and asking how she can get involved. Later she came back to my room telling me many of the staff heard of ALS but didn't know much about it. Hearing how she was able to go to others and ask others about ALS made me feel good to know that people really do want to know about this disease. So the next time you are having thoughts and doubts about your doctors or nurses know that most of them are qualified and they really do care about how you are doing. This disease is a disease that people are uneducated on and also that is under funded on. This disease has been around for decades and yet no cure or even treatment. but yet aids was huge in the 80's and a cure was found almost right away. Don't get me wrong I am for cures for all diseases but very frustrated why no cure for the thousands of people suffering and those who have died from this relentless disease that shows absolutely no mercy. So when you get the chance to raise ALS Awareness do it because you never know who you can touch and who you can affect. All it takes is believing in what you say. Some will listen and some won't all it takes is one to make changes and one to care. So even if you think someone knows about ALS, think again and ask anyways. If you have a voice use it.

Humiliation or your Dignity

Someone once said to die you must have dignity. I find that to be a bunch of hogwash. Lets face it with ALS and many other diseases you tend to have others help you. I do but that does not mean that my dignity is gone. People with ALS have to depend on others for their needs to be met. Such as bathing, feeding and yes lets face it, having their bottoms wiped. But does that mean they are less of a person? No, I should know because I do depend on others and although it's humiliating to have someone wipe your ass. It does not mean that you are less of a person or that you have no dignity. ALS is a disease that makes you become a prisoner in your own body and the only thing that will remain in tacked is your mind. The emotions and the physical changes are very difficult to deal with once you lose your ability to do things. No one said ALS is easy but you as the patient can do things to help others. Sharing your experience with others and giving them a sense of hope. The mind can play evil tricks and you have to be able and strong enough to understand that you are not that weak person. The things that you deal with is going to be very difficult at times but having someone that you trust to help you makes it much easier. Humiliation and the thoughts of you losing your dignity are all part of the mind games that you and only you can control. Giving up on life because you can no longer do the things you could do, isn't acceptable. It just means that you will figure out new ways to do things. I could have given up a long time ago but I decided that as long as I'm living I will fight this disease. Fighting it doesn't make me a hero or inspiring. It's what you do with yourself and the cards that you are dealt that makes you who you are. It's very easy to give up or into someone if things become to difficult, but is that how you want others to remember you, forget the dignity because you will have taken that away yourself. I am sure many of you have your opinions on this awful horrible disease, and I am not saying my opinion is the only way because it isn't but for me it works. I don't allow this disease to get the best of me. I will always have my dignity and the support of those around me to help me get through the difficult times so feeding, dressing, bathing and even having someone to wipe my bottom isn't as humiliating as long as you have trust and faith in that person. I can think of many other things in my past that I have to be embarrassed about and dealing with ALS is not one of them... Lol so get off your soapbox and look at how you can make a difference. Because you will always have your dignity and love from others to help guide you