tag:blogger.com,1999:blog-89569832746642706632024-03-04T23:38:45.445-08:00Robin's Journey with ALSRobin Mowerhttp://www.blogger.com/profile/16584401548716824514noreply@blogger.comBlogger32125tag:blogger.com,1999:blog-8956983274664270663.post-19960699643254713752013-11-01T10:21:00.000-07:002013-11-01T14:02:39.513-07:00Life challenge with or without ALS
Well today is already November and we just began our journey across America for ALS for the second year. If you would have told me 5years ago I would be doing this I probably thought you were crazy. This disease has allowed me to share and be able to help so many people out. And yet as much as each one of us dealing with this disease fights and continue to raise ALS Awareness you would think that we would have a cure.
Unfortunately we don't and further more we don't even have effective treatment. We could sit back and accept that and just wait to die. But for many of us that isn't and will never be an option.
Since being diagnosed with this disease, I have learned to accept that I will never walk again, I will never be able to sing like I use too and I will never be able to just pick up my grand children to play with them or even give them squeeze tight hugs. But what I will never accept is that this disease continues to destroy many other lives from both the very young to the old. Remember this disease doesn't discriminate. This disease shows absolutely no mercy. And I can't and won't allow myself to let this disease get its hands on anyone else without a fight.
Would you allow yourself to let someone hurt anyone in your family? Well this disease is very much like that. I need to protect my family from this. That is why I do what I do and why I go to great lengths for attention. It isn't because I want attention. Its because this disease needs attention. We need not just a cure. We need something so this disease can never take another person's life. We become a prisoner in our very own body.
Besides my family, this has become my passion and my purpose in life. I breathe this finding effective treatment and a cure 24/7. Many of you who knows me understand why. But who really understands is my husband. He not only has to deal with me but he has suffered greatly even more so than me. Dealing with ALS is not easy and then you add in children regardless of their ages and the day to day stress and lets not forget the care giving he deals with solely on his own.
Many of you are probably saying well you must be doing well because you travel so much. Here is the deal, one I feel better traveling than I do just sitting at home. Two - Soon I won't be able to travel and could be bed ridden..Three - This is how We are dealing with this disease. Many say its expensive and many couldn't do this. Well bottom line is if you were dying would you just sit and do nothing or would you want to get out and live life?
I don't apologize for being blunt or matter of fact but anyone who wants to complain about me can really just kiss MY ASS. I have no time for negativity or for the woes me attitude. John and I have dealt with this disease almost 5 years and we haven't yet hit the hardest part. But when we do I can guarantee one thing, we will get through it. Because we have faith, hope and tons of love.
Remember no one said life is easy. It is what you make it and I'm living life strong and refuse to give up.
Do me a favor... Some time when you're alone think about your life and see what you want to do to make life happier for you. What would you change and what you can do to help others. I guarantee you will feel better. Don't take the easy way out. Life is a challenge so live each and every day strong and never give up.
Robin Mowerhttp://www.blogger.com/profile/16584401548716824514noreply@blogger.com14tag:blogger.com,1999:blog-8956983274664270663.post-75934351189924879732013-09-08T08:59:00.000-07:002013-09-08T08:59:54.002-07:00<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-wrdcunwCDEXE7VUCtAR_PvTaWBF7IKlaPoUQhYnE-tVW8A1FVifoKmGowtsZOubDmhOye23Y-gIuiXu2rvT-8DCFKC_T-hmTk1fRizs_2pViBeBYj7Xjjy3cSWzXvaMg9gFzIP2k4Emv/s1600/cros.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-wrdcunwCDEXE7VUCtAR_PvTaWBF7IKlaPoUQhYnE-tVW8A1FVifoKmGowtsZOubDmhOye23Y-gIuiXu2rvT-8DCFKC_T-hmTk1fRizs_2pViBeBYj7Xjjy3cSWzXvaMg9gFzIP2k4Emv/s320/cros.JPG" /></a></div>
Imagine how much you strive for normal. I know I do and that was very much apparent on our vacation. I wanted that feeling of being normal again without ALS. Imagine every picture you take, you have this ALS disease reminders. But then I realize just how blessed and fortunate I am.
If it wasn't for this disease I would still be working and have not been able to travel and let me be honest I love traveling. I feel a sense of freedom and calmness I even feel better when I travel in the RV.
As I look at the past four years I've seen myself not as a better person who is dealing with a death sentence but a stronger person who will not accept defeat. Like anyone you get hit with the news that you only have a short time to live and most people wollow in fear, give up and for what? Because they are told that they are dying. Well guess what??? We all are dying. Just some of us choose not to allow the dying to get in the way of living.
This trip to Hawaii was very important to me for many reasons. This time we took time to explore and to see what God's beautiful gifts. I must say that I never saw such beauty as we did and for it to affect me emotionally the way it did.
In the evenings and mornings the four of us would go sit by the water watching the waves crash in and the light floral salt water air that destresses you. You can only imagine how peaceful I felt. And if that isn't enough to see God's presence, look at the picture. What do you see? My sister Laura took this picture of a sunset. But really look, its God's cross showing us that he is and always will be with us.
This trip meant so very much to me to be able to spend time with my sister. I come from a very large family and to be able to share this trip you can't imagine just how amazing it was. We each had nicknames and we did so much together and had many, many laughs. Some we continue to still laugh about.
But what was very awesome about this is that even though we are a very close family. We get closer. My brothers and sisters were texting us and living our vacation through us even when the Gecko attached Gecko Girl.
Life is full of surprises, never under estimate its worth. Even in the most difficult times you can find comfort knowing that you are worth living for and that you are stronger than you think. So show others what living is about. Live life strong and Never give up.
I'm not DYING... I'm LIVING
Robin Mowerhttp://www.blogger.com/profile/16584401548716824514noreply@blogger.com5tag:blogger.com,1999:blog-8956983274664270663.post-59074730273230351612013-06-29T11:56:00.001-07:002013-06-29T11:56:01.271-07:00positive attitude
Today of all days I decide to blog. I am feeling irritated about things I wish I had more control of. Example my neighbors have a bush that is over grown into our driveway. He is trimming it but it doesn't help that even when he trims it the bush still scratches the heck out of our cars and we have a hard time getting in and out of the cars. Yes we asked to cut down but hey whatcha gonna do? Just very irritating. And the other neighbor leaves a dog out all night and its barking all night. Grrr!
Some things are beyond my control much like this disease. Being a prisoner in my own body.
This past week I had a scare that embarrassed me but I'm sharing this because people need to understand what ALS is like. This past week John and I were eating dinner and I had chicken salad with grapes, apples, celery and pecans. It tasted great except when eating part of a very tiny piece of nut was in my throat causing me not to be able to breathe. Matter of fact I was gasping and not to mention panicing. John was trying to calm me down and stood me up. After I was ok I told John with tears that I had peed my pants. He cleaned me up and wiped my tears hugging me and said its ok and said he was expecting more than just pee.
Bottom line is, is that we haven't begun the hard part of this disease yet. John has quit his job to stay home with me. Many people would say why would you do something like that. The answer is because we can't afford home health care and the biggest reason is not to many people know how to handle me. I trust very few people. Many think I will break or they might hurt me. If I'm hurting I will let you know, trust me. Plus its very difficult to find someone honest and reliable that you and your family can trust. Having someone outside of family can be difficult and stressful if you're not comfortable with them.
But seriously even though I'm a very positive person, like everyone else I am human and I have good and bad days. But I try hard not to allow the bad over power the good.
Now I can say without a doubt I know that John will always be there for me. Even when I snap at him like I just did, regardless he is always by my side.
Many times I know that he gets tired and wants time away and he of all people deserves that. But sometimes that does bother me because even though I understand I too would love to take a break from this disease. I deal with this disease 365 days a year 24/7. And to top it off to listen to other people complain about the aches and pains... Please.
Not every day will be great but for me I have the ability to be able to change the way my day goes so that the bush isn't a problem I can have the cars parked differently and the barking dog is saying hey I'm here for you to come pet me and as for the nuts, i'll just stay away from.
Now I can focus on whats important and that for me is being able to help others. Like I said before we haven't dealt with the difficult part of this disease yet. So in the mean time I can and will help whatever way possible for others to enjoy living life strong.
Leave it to John to say you should blog. Because now the irritation is gone. I can focus on the upcoming week and not be bitchy to anyone. Hmmm.. He knows me so very well! Between John, the kids and grand babies and family I have a great life. John does almost anything for me and he loves me. To have been married almost 13 years, you would think we just got married. And you know what I'd marry him all over again and again. This disease has brought us so very much closer in many ways. We've always loved each other but now its a greater love, greater passion and yes even a greater trust for each other.
So my bad days never really last to long because I have more reason to be positive than negative. So find your reason to be positive and live life strong and Never give up. Robin Mowerhttp://www.blogger.com/profile/16584401548716824514noreply@blogger.com5tag:blogger.com,1999:blog-8956983274664270663.post-211567391959433092013-04-11T10:54:00.001-07:002013-04-11T10:54:35.252-07:00Live life not in fear.
Four years ago about this time I was just starting a series of tests on me to determine what was going on with me. Let me back track a little bit for you to understand what I was doing.
Each day I'd get up and go to work at the Hylant group then after work I would go to my other job at the YMCA. I was a fitness coach and also coached the special Olympics power lifting team. I can't really call that work because I always had way to much fun with those guys. The special Olympics team were training for a competition, the coaches against the team. We had four events bikes, running and then benching and the dead lift. As my boys would say I'm pretty tough for being a girl. I would work out and hackle right along with them. Even though you can see that they have special needs, they were treated normal. They didn't want to be treated as if they were different. The only thing between them and us the coaches were that we told them how to do things but they are the HEROS. They taught us to BELIEVE. Imagine going through life knowing your different and people picking on you and calling you names. These boys deal with that but yet they believe in themselves and they don't allow others to bring them down. after each practice we would huddle together in a group and put our hand in the center and on the count of three we would say /YELL BELIEVE.
One day I noticed some twitching in my left hand that wouldn't stop. I thought it was from training with the boys or the training for the marathon I was doing either way I figure it was too much and went to see my doctor. She immediately sent me to get some testing done thinking I may have had a stroke. Then after that she sent me to another doctor. She was concerned and felt the neurologist would be the route to go. Long story short after all tests were complete mind you some were very painful that I have ALS. This was in September of 09. in May of that year I asked the doctor if I had ALS. Although he wouldn't say yes and he didn't say no I knew in my heart and gut I did. After finding out John and I both cried. I feared that I wouldn't watch my baby girl graduate from High school. I feared not being able to see my kids get married and have children. I feared that I would be forgotten and that John would fall in love with someone else and forget what we have/had. I worried for Chase, even though he is not mine biologically I still look at him as my son. How would you feel knowing that you are going to die more sooner than later? I have to be honest it scares me to no end. But then a light clicked on and I realized that I can take that attitude and die or I can start living my new life. I choose to live life strong and with a positive attitude. Not everything goes the way I want things to but I choose not to stress out.
Just recently John and I made the decision for him to quit his job to stay home with me. We are not wealthy and we have bills like everyone else. This decision that John had is very difficult because he couldn't go to work to get away for he would worry about how I am doing that much more and we couldn't afford to have someone here every day. So this was the best decision for us. Financially we will see but do we have regrets about this? The answer is NO.
We have come a long way from the uncertainties of this disease to accepting and living each day as its our last.
Having ALS has allowed me to not only let go of the little things but its allowed me to see who I really am and to keep living life in a positive way with a positive attitude. The day you can really look at yourself in the mirror and say I love what I am doing without getting any financial gain then you will understand what I feel everyday.
My gain is to live each day to my fullest, live not in fear of being forgotten but to live knowing that I can love and knowing that I am loved. Also believing in myself the way my team has taught me to do and finally to live life strong knowing that you can't change everyone but knowing that if you can help just one person you have done so much more that others only wish they would do.
Don't look back at what you could of or should of done. Look forward to your will do and can do's. I guarantee that you will see a happier you.
Live life strong and Never give up! Robin Mowerhttp://www.blogger.com/profile/16584401548716824514noreply@blogger.com4tag:blogger.com,1999:blog-8956983274664270663.post-85439841042210524892013-04-07T10:06:00.001-07:002013-04-07T10:06:55.859-07:00The little things in life
Sitting in my chair enjoying the peaceful quiet morning with the window open and the breeze coming in. I muted the music from the television just to enjoy this quiet time. How often do you have a quiet time? I am certain that most people don't take advantage of it.
If you had down time what would you do with yourself and would you force yourself to sit still or relax?
I ask this because we all get wrapped up doing so much that we tend to forget about sitting back and looking at what we have accomplished and enjoying the little things.
With ALS you are forced to slow down. You don't have a choice but you do have a choice of how you react.
With having ALS I have realized that most of what I do is all ALS related. I didn't think so at first but my daughter pointed out to me that everything I do revolves around ALS. After a few other things that I found out, I realized that she is right. No matter what your situation is, remember that you really need to take that break and really appreciate everything that you have. However it doesn't mean that you forget about what you're doing and give up.
I realize that I am thinking constantly of how to raise Awareness and to a degree I can be obsessed and my excuse each and every time is that I need and have to do this because I am trying to find that cure so that you and your children will never have to go through what I and many others are dealing with now. I applaud my daughter, she is right. Not everything revolves around this disease. She just wants normal conversation. Please don't think that she is being selfish. She wants and needs her Mom to be there for her. ALS is and always will be a cruel disease but I for one will not allow this disease take away from me what is most important.
The cruel part about ALS isn't the dying... Its how we deal with the suffering and pain and being that prisoner in our own body. The pain is knowing how you could do something and realizing that you are no longer able to. But does that give you a reason to give up? I say absolutely not. I say that you look back at who you were, and look at yourself now. I am certain that there are many things you could do then that maybe you haven't done in quite some time. So when you try to do it you just may have to do it differently. That is exactly what I do. Impossible, can't, i don't think so are things that things that I try my very best not to say. I have always taught my kids never to give up and to always face your problems head on. Well with ALS I am doing just that. The struggles in life maybe more difficult than others but remember after they pass, you can look back and be proud of how you handled it and also share and listen to how your kids are handling situations. You just might realize that the apples doesn't really fall far from the tree and maybe you just might learn a thing or two from your children.
Life is so very beautiful and so very precious. Take time to really appreciate what you have and how you share yourself with others. Not everything deals around a situation. So find ways to enjoy life and live your life strong and never give up.
Robin Mowerhttp://www.blogger.com/profile/16584401548716824514noreply@blogger.com3tag:blogger.com,1999:blog-8956983274664270663.post-59117137588053384042013-03-21T15:57:00.000-07:002013-03-21T15:58:15.956-07:00CHANGE
As we go through life we see changes all around us. Sometimes we don't notice them and others we do. Just like the weather we expect the changes. If you think about it life would be very boring if their were no change. Everyone would be doing the same thing and we wouldn't be here.
With ALS I/we my family and I have had to deal with changes that ALS has caused. I was one that was always on the go and always busy. Well this disease has caused me to slow down. That is a change that was well needed. Look around you and really look and ask yourself and please be honest, are you happy? I bet most of you will say yes. But now pretend that you have no use of your body and you now have to depend on others for your every day needs. As you watch the changes around you what would your answer be?
Lets face it change is and always will be around us whether you like it or not. Life is all about change and it is up to us to make sure to use that to our fullest.
I have ALS and I hate it but I love what it has done for me mentally and spiritually. It has allowed me to open my eyes and take it all in like a sponge of what my life is really about. I love the fact that I can appreciate the simple things that we do daily. Laughing, hugging and even the simple saying I love you is more greater than you can ever imagine.
Just think I would never have found out what I am going through if it wasn't for change. Now I'm not saying all change is good. But what I am saying is this... Allow yourself to be open minded and allow yourself to accept the simple things that life has to offer. If not only you will be stuck in a bottle with it sealed and never knowing what you are missing out on.
Life is so very precious and such a beautiful gift to be wasted away because you fear change. So go out and really look at your life and see what you can offer to those who need and want to live life to their fullest. I bet that you will like the changes that you had bottled up that you never knew what to do with or that you never knew you had.
So I'll end here with... Live your life strong and Never Give UP!
Robin Mowerhttp://www.blogger.com/profile/16584401548716824514noreply@blogger.com4tag:blogger.com,1999:blog-8956983274664270663.post-25253349437036682932013-03-13T15:46:00.000-07:002013-03-13T15:50:57.770-07:00Don't let the weather get in your way
As you look out your window you can see the changes in the weather. But you can not tell how warm or cold it is unless you go outside. Well ALS is kind of like that. If someone was to look at me, I seem to be normal like everyone else. But when I speak or need something done you can clearly see that I have something wrong.
ALS has many different stages of this disease much like the changes of the weather. It can be sunny and warm one day and freezing cold with snow the next. With ALS you can be doing great one day and the next day you are having issues with breathing, or your speech is so very difficult for others to understand.
Over the past few weeks I have noticed that my speech is difficult for others to understand and at times, many times John or Brittany will have to translate what I am saying. I also have noticed that my legs are so very much weaker. I use to be able to walk with John behind me holding me up while I walk but now even that is getting more and more difficult.
Does that bother me? Yes but I am not able to do anything about it. I look at it as part of the ALS journey that I am on.
I often wonder what will be next to go. But I don't dwell on this or allow it to bring me down. ALS has so many complex components about it to where it is almost impossible to determine where the disease will hit next. Or even who it will hit.
I know that I am a strong person with a great attitude. But that doesn't mean that I'm invisible. It just means that I have accepted that I have an incurable disease. However even though this disease is terminal, I am still living and doing my best to help others dealing with ALS.
So when I look out the window I don't look at the weather, I look and think of what I can do to help others.
There is this saying "Never judge a book by its cover." So why should you? We can do anything if you really set your mind to it. Don't allow this disease take your ability of living life away.
Don't allow the weather get in the way of you going out to explore your endless dreams and goals.
ALS might be this horrific disease that is so cruel but you can fight back and live, love and and do the things that you enjoy. This disease can't take away your memories so quit looking out the window and take action for not only you but for your loved ones.
Live your life strong and Never give up!
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Robin Mowerhttp://www.blogger.com/profile/16584401548716824514noreply@blogger.com14tag:blogger.com,1999:blog-8956983274664270663.post-72719710292427191682013-02-21T16:14:00.003-08:002013-02-21T17:05:07.446-08:00What 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 Robin Mowerhttp://www.blogger.com/profile/16584401548716824514noreply@blogger.com2tag:blogger.com,1999:blog-8956983274664270663.post-1044524260451694352013-02-07T11:08:00.000-08:002013-02-07T11:08:43.577-08:00Live 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! Robin Mowerhttp://www.blogger.com/profile/16584401548716824514noreply@blogger.com1tag:blogger.com,1999:blog-8956983274664270663.post-671261503621006262013-01-11T10:46:00.002-08:002013-01-11T10:53:20.133-08:00Making 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!
Robin Mowerhttp://www.blogger.com/profile/16584401548716824514noreply@blogger.com1tag:blogger.com,1999:blog-8956983274664270663.post-57774430834166876302012-11-02T11:57:00.003-07:002012-11-02T11:57:38.871-07:00Avery'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! Robin Mowerhttp://www.blogger.com/profile/16584401548716824514noreply@blogger.com0tag:blogger.com,1999:blog-8956983274664270663.post-69385173520239994542012-10-08T18:51:00.000-07:002012-10-08T18:53:05.779-07:00My 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. <div class="separator" style="clear: both; text-align: center;">
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So until we see each other again remember Never give UP! Robin Mowerhttp://www.blogger.com/profile/16584401548716824514noreply@blogger.com2tag:blogger.com,1999:blog-8956983274664270663.post-78087150865151069792012-08-21T09:54:00.004-07:002012-08-21T09:54:51.436-07:00I 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
Robin Mowerhttp://www.blogger.com/profile/16584401548716824514noreply@blogger.com2tag:blogger.com,1999:blog-8956983274664270663.post-43053484230839868772012-05-11T11:32:00.000-07:002012-05-11T11:32:39.896-07:00Happy Mommy's day to my MomFor Mother's day I want my mom to be a focal point in this post. My<div class="separator" style="clear: both; text-align: center;">
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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!Robin Mowerhttp://www.blogger.com/profile/16584401548716824514noreply@blogger.com1tag:blogger.com,1999:blog-8956983274664270663.post-68076051397029276102012-05-07T10:20:00.000-07:002012-05-07T10:26:57.545-07:00Nurses and Doctors really do careSo 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.Robin Mowerhttp://www.blogger.com/profile/16584401548716824514noreply@blogger.com1tag:blogger.com,1999:blog-8956983274664270663.post-40398826725455377572012-03-07T11:41:00.000-08:002012-03-07T11:41:04.205-08:00Humiliation or your DignitySomeone 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 youRobin Mowerhttp://www.blogger.com/profile/16584401548716824514noreply@blogger.com2tag:blogger.com,1999:blog-8956983274664270663.post-30477911451865543182012-02-26T11:05:00.001-08:002012-02-26T11:06:13.323-08:00The mind games ALS can playLast 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.Robin Mowerhttp://www.blogger.com/profile/16584401548716824514noreply@blogger.com2tag:blogger.com,1999:blog-8956983274664270663.post-38508700812945309052012-02-19T11:28:00.000-08:002012-02-19T11:28:57.135-08:00Appreciating the caregiverSo 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.Robin Mowerhttp://www.blogger.com/profile/16584401548716824514noreply@blogger.com8tag:blogger.com,1999:blog-8956983274664270663.post-73835560572884923532012-02-08T17:06:00.000-08:002012-02-08T17:07:12.167-08:00The Voice A Gift from GodYour 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!!!
Robin Mowerhttp://www.blogger.com/profile/16584401548716824514noreply@blogger.com0tag:blogger.com,1999:blog-8956983274664270663.post-26192496517126245522012-01-04T10:20:00.000-08:002012-01-04T12:48:52.672-08:00What does ALS mean to you?<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsc7q5-iiZmVEvBZTtTCM9spF4LGkO4qWqRp1OKMShtYZmPSh1qyDpKYY0b86L5NVjmKZZW2I-XDXdmUE1TuQoZKUSkWu_7Q2N6SdEci4l3ezSie2hcxSVOPcUSy9jfNC5NhWZVzLKhZi7/s1600/noh1.JPG"><img style="float:right; margin:0 0 10px 10px;cursor:pointer; cursor:hand;width: 252px; height: 182px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsc7q5-iiZmVEvBZTtTCM9spF4LGkO4qWqRp1OKMShtYZmPSh1qyDpKYY0b86L5NVjmKZZW2I-XDXdmUE1TuQoZKUSkWu_7Q2N6SdEci4l3ezSie2hcxSVOPcUSy9jfNC5NhWZVzLKhZi7/s320/noh1.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5693881298607392978" /></a><br />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 ). <br />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. <br /><br />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. <br /><br />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. <br />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! <br />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. <br /> <br />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 <br />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. <br /><br />Until we meet again I wish you a very happy New Year!Robin Mowerhttp://www.blogger.com/profile/16584401548716824514noreply@blogger.com0tag:blogger.com,1999:blog-8956983274664270663.post-9225714149451306832011-12-13T09:09:00.000-08:002011-12-13T11:59:24.608-08:00The Christmas Spirit and Gift<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCCozlp0kXTuZMKlhPMUXuhZ7eAv3C9xTa2QzD1xzQjP9nSdGNue6x1rrYIUIpOEck8d6e1eoVFnRYB6MlWH6bpy5JgRip4e1jLpn0SSNWIqcdwNux5gNb72TMGeEsBXAdSAEveCbCtcPA/s1600/family.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 244px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCCozlp0kXTuZMKlhPMUXuhZ7eAv3C9xTa2QzD1xzQjP9nSdGNue6x1rrYIUIpOEck8d6e1eoVFnRYB6MlWH6bpy5JgRip4e1jLpn0SSNWIqcdwNux5gNb72TMGeEsBXAdSAEveCbCtcPA/s320/family.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5685692243597876226" /></a><br />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. <br />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. <br /><br />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. <br /><br />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. <br /><br />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. <br /><br />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. <br /><br />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. <br /><br />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. <br /><br />I want to wish you all a very beautiful Blessed Merry Christmas from my family to yours.Robin Mowerhttp://www.blogger.com/profile/16584401548716824514noreply@blogger.com1tag:blogger.com,1999:blog-8956983274664270663.post-50540055414149732232011-11-20T09:04:00.000-08:002011-11-20T11:19:13.025-08:00Giving ThanksWith 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. <br /><br />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. <br /><br />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. <br /><br />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. <br /><br />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. <br /><br />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. <br /><br />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. <br /><br />Now that I have shared just a few things so I ask you... What are you thankful for? <br />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. <br /><br />HAPPY THANKSGIVING and God BlessRobin Mowerhttp://www.blogger.com/profile/16584401548716824514noreply@blogger.com2tag:blogger.com,1999:blog-8956983274664270663.post-52071986742977042622011-08-22T06:16:00.000-07:002011-08-22T07:59:54.663-07:00How to be remembered<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCzGHfSDk-cTbXgBEanJhuQpc9Jr3KhV_OslbEvuHhUjmE5wYoWamLAwesVIOvm1IDkWhvBbwQP3VtrMhpy4jfyISi4ArzYdQ07lunhjwIovTCr3RPcusnr5C50Qs5TovnQV2hbjxogga0/s1600/laura.JPG"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 320px; height: 213px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCzGHfSDk-cTbXgBEanJhuQpc9Jr3KhV_OslbEvuHhUjmE5wYoWamLAwesVIOvm1IDkWhvBbwQP3VtrMhpy4jfyISi4ArzYdQ07lunhjwIovTCr3RPcusnr5C50Qs5TovnQV2hbjxogga0/s320/laura.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5643676693828931730" /></a>
<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYOyC1yNanKVkBzHvciQNa46ntIj-HDLaDylh9w1xZzq9R8rA4MdxX8txuRWNalMNISFsUxxwwKZ4yGdYwwDdUOvUEZzV2Z3pd1MuTcwaLem5jmxOvfp4cGGrPtYj-UhTMzJ3UERySfOnd/s1600/Image.JPG"><img style="float:right; margin:0 0 10px 10px;cursor:pointer; cursor:hand;width: 320px; height: 213px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYOyC1yNanKVkBzHvciQNa46ntIj-HDLaDylh9w1xZzq9R8rA4MdxX8txuRWNalMNISFsUxxwwKZ4yGdYwwDdUOvUEZzV2Z3pd1MuTcwaLem5jmxOvfp4cGGrPtYj-UhTMzJ3UERySfOnd/s320/Image.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5643675618567474914" /></a>
<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYVTbWEaypZzomdk6GLq3DE64cHRl6wQ7bQ49nEMsEqqKJpsu9mva9Oz4AMj7cz3ayDfZWC0F8PSISk9g_UJoV0qiiBgz7p9MwayhQvkX7qlnVL2gofX1YAAQ7nVNqyPWEVS8-FM6-DF21/s1600/parachute.JPG"><img style="float:right; margin:0 0 10px 10px;cursor:pointer; cursor:hand;width: 290px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYVTbWEaypZzomdk6GLq3DE64cHRl6wQ7bQ49nEMsEqqKJpsu9mva9Oz4AMj7cz3ayDfZWC0F8PSISk9g_UJoV0qiiBgz7p9MwayhQvkX7qlnVL2gofX1YAAQ7nVNqyPWEVS8-FM6-DF21/s320/parachute.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5643668945184069730" /></a>
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<br />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.
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<br />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.
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<br />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.
<br />I wanted all of them to be with me in spirit as I jumped.
<br />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.
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<br />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.
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<br />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.
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<br />Now I ask you, if you are to die how do you want to be remembered? Robin Mowerhttp://www.blogger.com/profile/16584401548716824514noreply@blogger.com1tag:blogger.com,1999:blog-8956983274664270663.post-67676408627660734672011-08-10T08:47:00.000-07:002011-08-10T10:58:42.246-07:00What inspires you?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.
<br />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?
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<br />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?
<br />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.
<br />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.
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<br />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.
<br />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.
<br />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.
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<br />Robin Mowerhttp://www.blogger.com/profile/16584401548716824514noreply@blogger.com2tag:blogger.com,1999:blog-8956983274664270663.post-40350930040578901512011-07-25T17:01:00.000-07:002011-07-25T18:25:33.242-07:00The stage of life, not my final bow!<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6P8fc0L7-6DDW-iRMsEXH7u62MDYJQOYmxiLIBSrwWgOqSL4nvdoUSIRCmEPqcvABDw-A3SqaGcOwrKv9_QObof_4juf2x38W9oTfL1wlhIh_mCy_uPLANhZw0Suw4n9ZaE8nH_HZ4_jL/s1600/dmr.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6P8fc0L7-6DDW-iRMsEXH7u62MDYJQOYmxiLIBSrwWgOqSL4nvdoUSIRCmEPqcvABDw-A3SqaGcOwrKv9_QObof_4juf2x38W9oTfL1wlhIh_mCy_uPLANhZw0Suw4n9ZaE8nH_HZ4_jL/s320/dmr.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5633445073638443042" /></a><br /><br />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. <br />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. <br /><br />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. <br />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. <br /><br />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.Robin Mowerhttp://www.blogger.com/profile/16584401548716824514noreply@blogger.com2