Friday, November 2, 2012
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!
Monday, October 8, 2012
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.
Tuesday, August 21, 2012
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
Friday, May 11, 2012
For Mother's day I want my mom to be a focal point in this post. My
Monday, May 7, 2012
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.
Wednesday, March 7, 2012
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
Sunday, February 26, 2012
Last night was a very emotional night for me as well as my husband. I am usually a very positive person but every now and then I to have my moments to where this disease gets the best of me for no reason. John and I were talking about the good ole times with our friends and then it hit me that many of them know I have ALS but haven't seen me to see how this disease progressed. This disease does not able me to do things that I could do before. Before we had this disease I could do my hair and put on my makeup. Now if we go out makeup and hair isn't an option. Oh I guess John could put it on but lets face it, he is a guy that doesn't know much about the girl things although he tries and does well. What I am getting at is with this disease I don't feel very pretty or attractive. This disease plays tricks on your brain and makes you feel less of a person than you already are. As a person you want to feel good about yourself physically, mentally and yes spiritually. Sometimes this disease makes you feel like you are worthless physically, mentally. You have to sit back and take time out and look at what you do have and really appreciate what life brings. You also should take time and really look at yourself and think of the positives. No one said having ALS would be fun or that you would be beautiful every day. Life in general never said that either. So why do I feel this way at times? It's the brain playing mind games with your emotions. Here is how I/we handle this. Share your feelings and be honest. Think of the positive things in your life and focus on what you can do and not on what you are no longer able to do. Focusing on the positives will allow you and your partner/spouse to work and get through the tougher times. Also communication and trust is very important in all relationships but when you add in the mix a disease it is more important to keep communication and trust going. Last night my husband reminded me that he is in this marriage and even though my face was covered with tears and many shades of red. He loves me no matter what and will be with me through the great times and the tougher times ahead. So when you're down remember you are in control of you. You may have ALS but as long as you keep positive you will never allow ALS to take control of you. So look at yourself and know that you are beautiful.
Sunday, February 19, 2012
So I am normally blogging about what I as an ALS patient goes through. I feel it is equally if not more important what the caregiver goes through. My caregivers are my husband, daughter. I want you to be able to understand the importance of respite care. As many of you know I have to depend on others 100% of my daily needs but What happens when they are sick or unable to care for me. what happens is they still do it and without complaining. But as a caregiver they need breaks and time for them. It's not that they love me less. They need it to take care of them. I am not very difficult but imagine you taking care of a child getting them ready as well. But a child is smaller and the needs aren't as demanding. You tend with feeding and the medication. Not to mention the worries they have when they notice things changing and the disease progressing. I don't complain at least I try not too. The caregiver not only deals with the person affected by the disease. They deal with the household needs and the children and the financial needs for everything and everyone. Not to mention the up keep of the house. The caregiver never feels that they can just go do what they want without the worries they have about everything else. I did help care for my mom when she was sick however I don't know what my family goes through. I do know that they need and deserves much needed respite care. In order for the person who is affected to get good quality care the caregiver and children need and deserves frequent breaks and acknowledge that what they do is very appreciated. Respite care isn't just for the patient, respite care is for the family who deals with the daily needs and stress that is cause by handling the daily struggles and the stress of the changes of the unknown and the worries that that need to be there. Please note this is my perspective on what I see with my care giving. Each person is different and what I see and share is just a tiny glance into my caregiver experience. Lets face it the caregiver's job never ends, even at night when I'm sleeping John will sleep but he still wakes up to make sure I am breathing or to cover me up. A caregiver doesn't have a job that ends at a certain time because it doesn't end. As for kids well lets just say that it's not easy for them. My daughter comes and gets me out of bed every day and gets me my am medication and breakfast and lunch. She also takes me to my appointments. I also have my son that lives out of state. Just because he is out of state makes it easy for him think again. He worries that he can't be here and wants to help out every way possible. Then I have two that are still in school and to think this doesn't affect them. It does! They all worry and they equally share the stress of a parent with a fatal disease. Caregivers and children need and deserve much needed time away and not think about the disease. Even though I don't get that break, I don't deal with what they deal with daily. Just remember the caregivers need to take breaks and time for them in order to care for you. They also need to know that they are appreciated and what they are doing means something to you. They to are dealing with the sickness and they to have feelings and need support.
Wednesday, February 8, 2012
Your voice what does it sound like to you? Or how your voice affects others? I want to share with you my experience with dealing with this disease. Imagine yourself doing something that you absolutely love doing and one day you find that what you love doing you can no longer do. Well I grew up in a house with a large family and loving to sing. I started when I was young then as I became older in my preteens I was able to listen to my cousin sing and from that point I wanted to be just like her. She sang like an angel. Well a few years later she got me a job where she worked at a dinner theater. I would sneak out and watched her perform and really thought to myself how I wish I could be like her. So after tossing it around I set up an audition and almost canceled it. Joane would hear me practicing and somehow not sure how she knew I was chickening out but she pulled me aside and talked to me and encouraged me to do what I absolutely loved doing. Her words of encouragement follows me to this day. I could have easily have given up but she told me to follow my dreams because I am the one in control. Now I use her words she gave me because with having ALS it has affected my voice and yes it hurts that when I sing I sound not very pleasing to the ears. However I will continue to sing because I can and one day I might not be able to speak so I will use it as long as I can. With ALS you learn to appreciate what life gives you. I now use my voice in a different way. When I speak I speak for those who are unable to speak for themselves. I recorded for my kids and grand babies before my voice became affected. You can go to Youtube and type in my name If you listen to it, All I am going to ask is that you appreciate everything in life and if you love doing something follow your dreams because you are the only one that can make it happen. Thank you so much Joane for believing in me. I am following my dreams and I now soaring!!!
Wednesday, January 4, 2012
Just what does ALS mean to you? Too many people... it's a disease with a long name that people can't pronounce so to make it easy they named the disease after a baseball player that many people never heard of many years ago who had the disease (Lou Gerhigs ).
For others... it's a fatal disease and for the people who deal day in /out it's a disease that forces us to go to extreme lengths jumping out of planes or plunging into very frigged cold waters just to raise awareness to find a cure for a incurable disease.
Yesterday I found myself along with my husband raising ALS Awareness in a doctors office. I went in for flu symptoms talking with others in the waiting room. These people who we were talking to that knew little to nothing about ALS. After that John looked at me and said way to go we raise awareness again.
As the progression of this disease continues it toll on me I find myself fighting harder and stronger than ever before. Being diagnosed September of 09 I still find myself keeping active even though I depend on others for just about everything I do. But I say this not for sympathy but for People to understand more about ALS and to help others.
Many people ask what were my symptoms and really all it was was a slight continuous twitch that started in my left arm/hand. That was April of 09 today I no longer walk on my own. Matter of fact I do not do much on my own. Imagine being outside and a bug lands on you. Your natural instinct is to swat at it. With ALS I can not. Imagine laying in bed not being able to move or even pulling up the covers if you're cold. I go through this every day and others just like me go through this because of three letters with no cure... ALS!
So what does ALS mean to you? To me yes I do have ALS but having ALS doesn't mean that I am dying, it means that I am living and fighting ALS and each day I am able to share my experience and give hope to others to live, laugh and appreciate what they have to give to help others.
This year just like last year no resolutions made to be broken but this year will be the year for a cure. Now just so you know ALS to me stands for AMAZING/LOVING/SPECIAL people
One last note ; if you have gift cards from Christmas that you don't know what to do with, send them to your local ALS Organization and donate in someone's memory or honor.
Until we meet again I wish you a very happy New Year!