Robin's Journey with ALS

The Voice A Gift from God

2012-02-08T17:06:00.000-08:00

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!!!

What does ALS mean to you?

2012-01-04T10:20:00.000-08:00

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!

The Christmas Spirit and Gift

2011-12-13T09:09:00.000-08:00

As Christmas fast approaches I watch others as they rush around to get the shopping done and the baking completed and I realize that all I have done is my mantel. Decorations are on hold due to carpeting being installed.
This year seems different and as I watch others rush around. I am finding myself enjoying the simple things and realizing that Christmas is more about whose getting what and not focusing on the true meaning of what this season brings.

As each day goes by I focus on the can do's and try to achieve the can'ts of what life brings. People in general ask for things and expect the magic to just happen. What many people don't understand is that you have to work at and appreciate what the magic gives and be willing to not give up when the things we ask for don't happen right away or if they happen at all.

We all are still very much like little kids in many ways, we expect certain things, we pout and yes we even argue and say things that we regret later and really if you are saying no to any of this you just might be more of a kid than you thought.

This season I am feeling the holidays in an old fashion way from our tree being trimmed with homemade decorations and loving family time. Even though I will rush around to shop for the special gifts, what I am most excited for is the simple things that make it Christmas, spending time with family and friends, laughter and most important what God has given us. Sure presents are great but it's the meaning behind the gifts that matter Most.

Now you all are saying right Robin... But as I progress through this disease, I see myself as being totally different in many ways. I no longer walk on my own. Come to think about it there is very little I can do on my own. But that is why I have changed. What use to matter doesn't any more and I still do so much more than many others that say they will do and yet they don't for reasons not for me to ask. But the curious kid in me tends to wonder why. I guess that is another blog that will have to be posted.

You may think ALS is a very cruel disease and you are right but this disease has made me see just what and who I am. This disease has given me a very beautiful life with choices and decisions that I never knew existed before. I see just how much people do take for granted and it's kind of funny because they don't realize what I see.

I am NOT claiming to be perfect, if anything I am perfect at being imperfect... Lol! Ok kidding!!! I still have so much to learn, see, do and most of all to give and help others. This is what makes Christmas to me. The magic is in our hearts, if we can open our hearts and learn to forgive, we all will carry this Christmas spirit not just for the holidays but all year around.

I want to wish you all a very beautiful Blessed Merry Christmas from my family to yours.

Giving Thanks

2011-11-20T09:04:00.000-08:00

With the Thanksgiving Holiday approaching we get all wrapped up in the food and forget about giving thanks. I myself have been guilty of that in the years past. This year I want to share with you some of what I am thankful for and not in any particular order.

I am thankful for my family, without them I wouldn't be who I am today. My husband, kids and grand babies love me unconditionally. I love them with all my heart.

Next I am thankful for my ALS Family - They are there for me and my family with so much support, encouragement and laughter and smiles. If one needs help they will put the word out for others to help support.

I am also very thankful to be able to help find treatment and a cure for ALS and to be able to raise awareness. This disease has and is continually taking things away from me, but it will not take away my spirit and willingness to continue to fight.

I am so very thankful to God, He has blessed me in so many ways not just monetary ways. I know God has helped me through many trials and he continues to be right with me and when I can't go any further he carries me through. He listens to me and loves me and is always forgiving.

Next I am so thankful that I have learned to be able to forgive, over the past years I carried anger around with me and much of it was me not being able to see what my faults were and accepting responsibility to what I needed to do to change and to learn to forgive. I am still working on this as it is never easy for anyone to accept blame.

I am so thankful for the beautiful memories I have of my Mom. She wasn't perfect but she was and always will be perfect at being herself and my mom. Her love was and is never ending.

Now that I have shared just a few things so I ask you... What are you thankful for?
Also I am asking as the Holidays fast approach remember those who are without, do something to put a smile on faces. Visit a nursing home or a hospital. Help out someone in your neighborhood. Remember a smile cost you nothing but means the world to someone who has nothing.

HAPPY THANKSGIVING and God Bless

How to be remembered

2011-08-22T06:16:00.000-07:00

Imagine yourself waking up one morning not being able to walk, or holding your coffee cup or even being able to dress yourself. Well many people go through that for many reasons,. But I go through that everyday because I have a disease that robs you of your life and makes you become a prisoner in your own body.

Over this weekend I took to the sky to raise awareness for ALS. But this year was different. My oldest sister faced her fear of jumping out of a plane. This was not an easy thing to do. Watching her I felt a sense of comfort knowing everyone jumping would be fine. I felt comfort knowing most of my family was watching and knowing my mom was with us cheering us on from heaven. But the most comfort was when I saw my cousin Sharon. I not only felt my mom's presence but I felt my Aunt Eileen's presence. Sharon is my Aunt's daughter. I felt much love from the living and from those who have passed.

This year I wore a T-shirt that my cousin and I made... Well she made and I gave her names of those who have ALS and in a heart those who passed from ALS.
I wanted all of them to be with me in spirit as I jumped.
The jump was amazing and again I felt free from ALS when in the air. After the jump I came down from the excitement and I was exhausted and then took a three hour nap, or close to it.

The reason why I say this is because I have realized that living with ALS has become more difficult. Even though I smile and say things are good deep down I know that I am getting worse and the progression of the disease is not slowing down and that I am not able to do things quickly or for a long period of time. I tend to tire out very quick at times. However I continue to be upbeat because I know that if I let the disease get the best of me, it would take me. I am refusing to give in and I will continue to fight.

I hear people say how sorry they are to hear that I have ALS. My come back is, don't be. I am living... Not dying. When you hear a person has a terminal illness it doesn't mean that they are dying. To me it means they are fighters for life and that is what I am doing along with many others. I am not inspirational nor am I a hero. I am Robin Mower and I have ALS and I along with others are trying to find a cure so no one else will have to suffer from this disease. That is why I do what I am doing and not so others can say I'm a celebrity. I go the distance for ALS because I can. That is how I want to be remembered.

Now I ask you, if you are to die how do you want to be remembered?

What inspires you?

2011-08-10T08:47:00.000-07:00

Today as I sit here typing with my eyes I wonder what inspires people to do the things we do. For me I not only just want to help others with ALS, I feel that I have to. Dealing with this disease has changed me in so many ways. I am not one that just does things just for attention... At least I didn't feel that way. But dealing with becoming a prisoner in my own body, I have noticed that I won't allow this disease bring me down. I want to raise my voice and get all the attention that I can so we can find treatment and a cure for ALS.
I am inspired by many people and things for different reasons. What inspires me most besides my family are the people who are fighting every single day and refusing to give up. Our military, they fight for our freedom and then they come home and they still have to fight for simple things in life. Our government says that they are hero's, my question is why doesn't the government treat them afterwards like HEROS? I have a cousin fighting for his life because he made the decision to fight for our country. He was medically discharged and I have to ask where is our country's support now that he no longer wears the uniform but instead wears oxygen? He inspires me, my nephews inspires me. Every person putting their life on the line for our safety, freedom that inspires me. So I ask what inspires you?

This year alone I have friends that I call my ALS family that have lost their lives to this disease. I look at them and think about myself. Hoping that I too will have the courage that they had. I have a fear of being forgotten and yes that scares me. But I ask myself WHY? Am I being vein? or is it that I'm afraid of being alone?
My faith inspires me, although I was raised catholic I do not attend church regularly I still believe and I know that although I am not perfect I know that God does love and does forgive me and my sins. I know God has a place for me in his home when he's ready for me.
Life inspires me! I have been able to meet many people and to do many things and I am appreciative for every single day that I am able to do things for others.

Many people closest to me feel that life dealt me a very bad hand, I totally disagree with them. I wouldn't be who I am now if I didn't go through the things that I have gone through. Life in general has it's good and bad hands but it's how you play your hand is what counts and you could just have a winning hand. I know I have a hand with jokers and no wild cards but I am inspired by all of the others that have played and the ones who continue. You all are my inspiration to fight with all my might and to never ever allow myself to give up on life.
I am going to be Charlie Sheen for a moment and use his motto "WINNING" yes you read it and that is exactly how I feel,. I'm winning because I have the ability to accept the fact that I am not dying and that I am living my life to my fullest.
So again I ask what inspires you? Be honest with yourself and I think you just might amaze yourself in ways you never thought were possible.

The stage of life, not my final bow!

2011-07-25T17:01:00.000-07:00

I am sitting here listening to music and feeling kind of sad. When I was very little I wanted to be a singer. As I got older I was able to do more and had a few gigs. At the time I never thought I was great, good yes but great I was not. I remember watching my cousin perform and at that moment I wanted to be just like her. When she sang she sang with emotion and strength and her voice absolutely beautiful.
With ALS the disease affects the nerves and the muscles eventually die. This can also affect a person's speech and also affect breathing that can lead to ones death.

I love singing and I was able to sing with emotion and feeling, now that is gone. This disease is taking much away and yes it makes me feel sad. John and I met while singing and even though the disease has affected my voice John still likes it when I sing. I think he needs hearing aids... Lol! On a serious note, I never thought that my voice would be affected.
I am not saying this for sympathy and please I don't want any. I say this because many people still don't know what ALS is or what all is affected. The only thing it doesn't affect is a person's mind. So please know they can hear and understand you.

What would you be terrified of losing? I am becoming a prisoner in my own body and there is absolutely nothing that I can do about it. Or is their? See I like to keep positive and yes I can do something and I'm doing just that. Even though I will never be able to sing or perform again it doesn't mean that I have taken my last final bow. I am doing exactly what I believe God has planned for me. I need and want very much to put smiles on faces for those who can't and just because I am not able to sing, I still can make people smile. I like to think that wherever I go to raise awareness and to make people smile I am on a stage. I call it a stage of life and I am not ready for the final curtain call or that final bow. I may not be able to sing but rest assure this disease will not ever shut me up. I always said I have a loud mouth and I am going to use the gifts God gave me to help raise ALS Awareness to find treatment and a cure for this disease. No one should have to be a prisoner in their own body,. So when you hear a song you like, start singing and sing out loud and sing for every person that no longer has a voice.

Leaving ALS behind!

2011-06-04T08:39:00.000-07:00

Well the summer season has begun and so many things to do. This past week I was able to accept a check for Augie's Quest/MDA and what an honor that was. John, Chase and I were able to meet Ron Hemelgarn. He is the owner of Super Fitness and has sprint race cars. While we were talking he made me realize that I should do whatever I can to achieve my goals and not put them off for a later time and then later that evening while talking to my brother Don about my idea, he liked it and said that I should do it, So I decided to move forward with my goals and to do it to the very best of my ability. When I was being diagnosed with ALS my sister (Maryann)told me to never let the disease over take me and to fight it, she made me promise and I did just that at my brother's ganddaughter's 1st birthday. Before being diagnosed I didn't really know what ALS was and never thought of me ever having a life threatening, fatal disease. But it is what it is and I am refusing to give in. That is why I made the decision to take my motorized chair and ride it from Toledo to DC. Some people may think that I am doing it for attention and guess what I AM!!! I want people to know what ALS is and I want people to remember that CRAZY CHICK that has ALS and will let nothing stop her from raising awareness. This is why I have to do this, I need to do this for every person affected by this disease. It's not that I want to be a celebrity or attention for a stunt. If I can educate others on what ALS is, I have done my job. I say to many people that may not know who Lou Gerhig is, he is a man that had my disease (Robin Mower's disease) they may not know him but they know me and they will be able to understand what this disease does.
Without my family's love and support it would be easy to give up. I come from a huge family and I know I can achieve anything that I set my mind up to do. plus I am not one to give in... (maybe I could be a slight bit bullheaded) I call it determined.
My goal is to have every person affected with ALS, to leave it behind for good. Now I challenge each of you to go up to a person you don't know and ask if they know what ALS is and help me and others raise awareness because you can.

ADVOCATING FOR A CURE

2011-05-24T10:40:00.000-07:00

Advocacy days in Washington, DC 2011

I remember when John and I went last year and being so overwhelmed. Seeing the many others affected by ALS and knowing we are new to this with and thinking to myself I can't get worse. Then on Capital hill watching and listening to others as they shared their stories and then it was my turn. You could tell I was a bundle of nerves , even though I cried John held my hand and I was able to finish. Afterward he hugged me and said great job. Then we went to the next office and continued throughout the day.
Well this year was amazing and not overwhelming, I think knowing what to expect has helped. Meeting many of my ALS family from facebook helped out tons as well. The fact is the disease has moved to all of my limbs and my speach is affected. But what I am most amazed at is the compassion and strength, courage that everyone has. Hearing how every person affected by ALS is affected differently and like me they are fighters. We all come from different walks of life no one cares about how much money you have or what your wearing. We all have one thing in common... ALS and we want a cure and treatment. With many illnesses there are treatments and cures. ALS doesn't have either and it's the most fatal disease around. 70 plus years you would think at the very least a treatment, not ALS.
The whole conference was moving and yes at times some what emotional but it was great being able to help make a difference.
This trip gets me thinking of ways to raise awareness and to get involved even more. As I've said before I would love to be the "poster child " for ALS. But thinking at it don't we all?
Maybe this year we will find a cure. Until then I made a promise to myself and others to attend advocacy days each year and to fight with all I've got to beat this.
They say May is ALS Awareness month... Want to know what I say?... Every day is ALS Awareness day. So please support your local ALS Organization to help me and others find a cure.

Imagine

2011-03-26T09:34:00.000-07:00

Imagine yourself as being carefree and doing whatever you wanted to do and go whenever you wanted to go somewhere, then the unimaginable happens. You are stuck in a chair not able to do or go where and when you want to because you have a disease that takes away everything or so you think. Well that is where I was until I got over my pityparty feeling sorry for myself. Having ALS isn't a death sentence, having ALS has given me the second chance to live life without taking the simple things for granted and to appreciate living. I can't give hugs like you do and I can't feed or take care of myself the way I use too but that doesn't mean it's the end of the world. It just means I do things slower and different. About a year ago I was able to sing I never thought I was good until now. Now I have changed my opinion as I sit back and listen to what I had. Imagine being able to speak and one day you wake up finding you no longer have a voice. Imagine not being able to communicate and others guessing what your needs are. The simple things such as breathing and swallowing are not a simple thing. I ask you to imagine this because many people who have ALS go through this daily Including myself except that I still have a voice and I still breath on my own .and yet they want no sympathy
they just want a cure to be found so no one else has to suffer.

I consider myself to be one of the lucky ones, I have my family and friends to help me through this. Many others who have ALS have no one. I have been blessed in so many ways and I still continue to receive blessed gifts from many.
Recently my daughter's grandpa passed, I went to pay my respects and found myself doing something I have never been able to do except at my mom's funeral and that was me going up to the casket. I can honestly that the thought of dying or being forgotten scares me but what I am most afraid of is not being able to been their for my family needs. I know they are strong but still it's a fear.
Until that day comes I will continue to be strong and to help And give to others as much as I can and then push myself that extra mile just for good measure. Like I said earlier having ALS isn't a death sentence, it's a new way of living and appreciating what god has given me.
So now that I have depressed you I with my thoughts just know I am a very lucky and a very happy person wanting and willing to pay it forward with all my strength and might.

Believing

2010-11-19T04:48:00.000-08:00

A little over a year and a half ago I was diagnosed with ALS. Last year at this time I was still able to do many things. I could walk, got dressed by myself, put on my own makeup on, and feed myself along with many other things that were most of us take for granted on a daily basis. Today I sit here and it's a few days before Thanksgiving and I'm thinking to myself wow another goal I'll be achieving. I will still be able to enjoy a Thanksgiving dinner with my family. Throughout this past year to keep myself going I have created little goals. I say little goals but realistically they are huge goals for me. Along with the goals that I have created I have also completed a few my bucket list dreams. I have been able to do many things this year that only few people are able to do living a normal healthy life. I have had the opportunity to travel not many places but have been able to go places where many people only wish to have gone. I also met Donny Osmond and to sit and talk to him for a few minutes on along with his sister Marie. You oneness talk about being humble and down to earth those two are very humble and they don't let being a celebrity get in the way of that. I also had the honors of being able to skydive with some amazing people this year. Being able to share my bucket list dreams with my family and my ALS family has allowed me to stay strong and positive. Let's face it ALS sucks and if anyone tells you that ALS isn't painful think again. This disease for me has been painful in many ways physically, mentally and emotionally. Before I had ALS I was active and healthy and pretty fit. I could even out run my kids but today I depend on others to do things for me not because I want to but because I have to. This is where the emotional pain comes in, I was never one that wanted to depend on others and now I hate it. But what's more painful is watching my husband and kids deal with this. Seeing the frustration and pain in my husband eyes when he comes home to find me in the middle of what I call a boo-hoo moment or if the dinner he cooks doesn't turn out right. My husband is my angel there is nothing that he wouldn't do for me. They say ALS shows no mercy, I have to agree. ALS does not discriminate it not only affects the patient but it affects all of the love ones. This is why I find it very very important to myself to believe. Believing in your dreams, believing in yourself, believing in your God, believing things happen for a reason but most important no matter how hard things get believe that you do matter and people do love you no matter what. So when you're having a boo-hoo moment think about what you've achieved and believe in yourself because if you don't know one else will.

Live life Strong and Believe in your DREAMS!

2010-09-03T11:17:00.000-07:00

Today I sit here thinking about my disease wishing I could be normal again and knowing that will never happen. A part of me wants to cry but then I look at those who are much further on than I am. How dare I feel sorry for myself. I cannot do many things such as feeding myself and bathing and walking is very limited. I can go on with other things to but I think and feel God has a plan for me. Having ALS has allowed me to see/do and appreciate so much that is taken for granted, for me it opened my eyes to help others in a way others may not be able too. It frustrates me that many people do not know what ALS is. That is why I am making it my mission to raise awareness to this disease. Many people that I say I am inspiring and say I am a strong person. The fact is I am tired of people suffering from this torturous disease as it takes your ability away to live. So NO I am not as strong or inspiring as thought. I look at myself as a person just wanting and needing to help others and to give a person a smile that they can hold onto within them. It doesn't matter who you are, everyone deserves a smile. What puts a smile on my face my grand babies, husband and kids, my family and friends. Of course you know I would say that. But achieving some things on my bucketlist has been nothing less than amazing and the best part is my family sharing in my experience and dreams that came true. Last week my husband and I along with my brother and sister went to see Donny and Marie Osmond. (great concert) but to my surprise my sister and sister in-law pulled strings for my husband and I to meet them after the concert. I balded and cried in happiness, let's face it I have been a HUGE Donny fan for 41yrs. and talking to him about ALS and him supporting the cause was AMAZING. How they pulled it off is beyond me and thank you's don't seem enough considering I have been blessed in so many ways. That is why I am doing what I can to raise awareness. Dream do come true if you BELIEVE in yourself and accept support from those that love you most.

My Promise to Pay it forward because I can

2010-07-18T07:51:00.000-07:00

Ok a lot has happened since my last blog. But one thing comes to my mind and that's PAY IT FORWARD. Over the Christmas holidays after being diagnosed with ALS - John and I received a gift to go to Maui HI. This is something I have always wanted to do and was on my Bucket list. I had a very hard time wanting to accept this gift (lets face it, it's a very generous gift) especially from a person I met just last summer (who is an ANGEL to my family and even more so to me). So with agreeing to accept this gift I made the promise to pay it forward (by the way...This trip was a dream come true). But how could I pay it forward? I'm not rich financially, so what could I do to pay it forward? With ALS not being able to speak is one of the effects this disease causes to many who are suffering. I thought I could use my voice to speak for those who can't. So I have kept my promise to pay it forward. I went to Washington D.C. and was able to meet and speak to many people. Since this promise I have done speaking engagements and have been trying to keep positive. Having ALS is not fun and at times this disease is very painful physically and emotionally. But what gets me through the day... is the many others who are much worse than me and they are keeping strong. I have an amazing family that supports me so why cry. This disease has taken much from me but it also makes me appreciate what I have even more and it makes me want to pay it forward. That is why I continue to do what I promised. So while you read this think of what you can do to pay it forward. It can be as simple as smiling, you never know what others are going through. You could just be that person that makes a person smile,laugh or even better want to live. I have had many great things come my way and in return I promise to continue to do what I am doing without expecting anything in return and I hope that others will follow.

Being Diagnosed with ALS

2010-05-26T11:21:00.000-07:00

Before I was diagnosed with ALS things were coming together for me. I was enjoying life, I was running five miles everyday and working out regular. I also was coaching special Olympics power lifting. With that I too was also benching 190lbs. for a competition coaches vs. team. Until I noticed some twitching that wouldn't stop so long story... but after several testings of MRI's, blood work, EMG's ( that were very painful ) and spinal tap along with many other testings and doctor visits I was told that I have ALS. All I thought about was my husband and kids without me. I don't want to die. For some reason it was easy for me to tell my family I have ALS, I am not sure why that was. My husband and kids have all supported me and they continue support and help me. I can no longer run and walk with assistance. My husband helps bathe me and getting me dressed. I still at times get so frustrated but then I think of others who are much worse and cannot do anything. I hate not being normal and having others do things for me. But something great came out of all of this, I realized even though I have a fatal disease I can either choose to sit back and let this disease destroy me or I can do something about it and fight it to the bitter end. I chose to be strong and do something about it. Just because I have ALS it doesn't mean I have to live like I have ALS. My life has changed in many ways both good and bad. But the good over takes the bad. We all take many things for granted especially the simple things in life. ALS is taking all of that away from me slowly except my love and my feelings. Just appreciate what you have and who loves you each day as it can be taken away in a split second.