My Life & ALS
My Life & ALS
RASCALS Founder Robert Stehlin was encouraged by friends and family to create a journal page to give some insight on the life of ALS. The journal is designed to give a better understanding with one`s daily life challenges in living with this disease. While there are many organizations in research, patient care and awareness that can give you hard facts and information, this journal hopefully will allow you to open your eyes and learn and give you a sense of Robert`s life.
February 7, 2012
Not sure even where to start since I was diagnosed back on September 11, 2009. I can tell you that I have experienced many ups and downs over this time since my diagnosis. At that time in learning I have this disease is a feeling I cannot describe. I have a wife and 4 children and naturally I want to protect them of this news. My daughters are of adult age, my sons are much younger, one pre-teen, my youngest in pre-school. I can tell you the day I revealed the news to my daughters was the hardest thing I ever done. Many tears were shed. I approached all of my family by staying positive. My 12 year old son is at a difficult age so my wife and I approached the news with honesty but by being positive. There are no cases of ALS alike and there are cases of survivors living beyond the expected life statistics of this disease. My advice for anyone learning of an ALS diagnosis is to learn as much as you can of the disease. Stay positive, I have been told a great attitude can greatly affect your immune system. Personally, I don`t believe in wasting energy in the negative sense. I am not saying I don`t have bad days, I just try and not to stay there too long.
My onset symptoms were a limp in my left leg. I believe my onset of symptoms began as early in spring of 2008 with muscle cramping. To this point in my life, I am walking with assistance of canes at a cautious pace. I use a wheel chair outside my home for my own safety. My sense of balance is gone. I have weakness in my hands and arms. I am left handed and my weaker side is on my left region. This alone makes a huge challenge for me. My writing abilities are very slow. I am very grateful not to have any issues with my breathing or swallowing.
I have learned ALS can start in all regions of the body. I have also learned people have only lived a year or less. As I reflect back to the beginning to where I am now and considering what is going on with my body, I feel lucky to still be on my feet.
February 15, 2012
I experienced mixed emotions this past week, lost a very dear friend to cancer on Friday. I do not believe I have experienced emotions of grief since my grandmother passed in January, 2000. Yesterday marked one year for a friend who lost her daughter at the age of 17 to ALS. How fair is it for someone so young to go through something so horrible? She was diagnosed at age 11 and fought for 6 years. So both my friend and my friend`s daughter were in my thoughts. I believe many people take it for granted they will live a ripe old age and going through these kinds of things this past week will put life into a reality check which is not fair sometimes.
Stress from work, fixing a faucet, ect. I would only give to have everyday problems again. Shortly after my diagnosis, I would catch myself still planning years down the road of everyday life. I now miss that the most. I often tell young people like my daughters to chase your dreams. I am a dreamer and full of hope, dreams keep your spirit alive. I do not feel like I am dying, people have told me this is what a positive attitude can do for you.
February 24, 2012
This week brought a big change into my life. I received my power chair which for some people can be viewed as a positive or negative situation. When I was first diagnosed, many thoughts went through my mind which included someday having a power chair to aid in my mobility. Of course I viewed this option while still walking as a negative aspect. As I continue my journey and I would think many ALS survivors losing their abilities, you take on a different viewpoint. You develop a proactive approach when you lose your abilities to think how I can keep my independence intact.
Both my wife and I had negative thoughts but on 2 different items. When the handicap van was purchased back in November, it was very difficult for me due to this van represented my next phase in life. Another change I went through was surrendering my driver`s license. This was a huge event! Now I must rely on someone for transportation for the rest of my life. My wife had the same thought process for the power chair representing the next phase. Frustration set in for the both of us trying to convince each other on the van and power chair. My safety was my wife`s concern in not driving anymore. Timing is everything when you are trying to find a pre-owned vehicle with minimal mileage and wear and tear. If you discover such a vehicle before you need it, you may not get another chance for another one and this was the case for us.
My viewpoints were 95% of independence with a power chair. No more needing people to push me around. I rarely went with my wife to stores due to her efforts of getting me to the store and then pushing me around. I realize most people would say I am sure your wife did not mind. I viewed it as another thing my wife had to do on top of all she does now. All this should change due to I can now do a lot of this for me. Technology can be wonderful and especially if it can help you remain independent.
March 3, 2012
I have had mixed feelings the last couple of weeks. Maybe the winter blues, spring around the corner. The season of spring represents new life in the world. One of the things I miss the most is planning things to accomplish each year, each season. Simple things like vacations, house renovations, gardening, and lawn work. I like to stay busy. My coworkers felt bad if they could not stay up to speed with me, they called it “Bob Speed”. I would often tell them this is the pace I work and I expect no one to work at my pace. I miss my coworkers, I miss interacting with people. Although I stay busy with the foundation work, seeing people is far and in between. Conversations on the phone can be lengthy due to that may be the only time during the daytime I get to have a conversation with adults. I love my sons but obviously a very different content of conversation. My wife is worries of me getting bored throughout the day when she is at work. She forgets how good I am in keeping myself busy.
I love music, it is my passion to listen and play. I played the piano and composed my own music. I have played the last 45 yrs. until recently realizing my playing days are all but over. My abilities are limited which results into no enjoyment of playing. My physical therapist claims it is good hand exercise but that takes away the passion of the whole thing. Every piece of music I listen to I have attached a moment or memory too. It is my own memory lane and it always brings back warm feelings.
I also go back and re-visit my childhood memories. I cherish that time in my life. No video games, no iPods, just using the imagination. Did not matter if it was a rainy day, snowy day, blistering hot, my siblings and friends always had something we had fun doing.
March 14, 2012
I have noticed as of late the quality of sleep I need dictates my quality of day coming ahead. Sleeping 6 hours was enough for me during my working days. To try and pull that off now spells a rough day to follow. My body is tired all over in which when I walk, my legs and feet feel weighted. Today I feel pretty good, very mobile. I only hope to have more good rested days than tired.
April 3, 2012
Spring is here officially here which means new life or coming back to life. Both spring and fall are my favorite seasons, both for different seasons. I am looking forward to the warm weather for it allows me to get out of the house. The cold weather keeps me indoor especially since my left foot gets cold rather easily. Although I miss the yard work, it is nice to have the sun shine down on my face. Having the power chair has made it easier for me to get in and out of my home as well of making mefeel more at ease. A new sense of freedom has been added back to my life. Still taking a day at a time, my foundation work keeps my mind busy and gives me a sense of worth since I am no longer working. At least once a week I am reminded by someone I am appreciated for the foundation work.
April 30, 2012
Some changes have occurred in my daily routine which brings new challenges and changes. I use my power chair more relying on getting to one spot to another quicker and safer. I have started to go down the stairs in a sitting position. My wife would prefer I not do it at all. I gauge my strength of my legs throughout the day which dictates my trips on the stairs.
I think about next year when my youngest son starts school and will be gone the entire day. Empty nesting early you could call it. My son is my buddy throughout the day as well as my helper. I am convinced he will grow up to be a very compassionate person. The beauty to this is he wants to help and such a young age.
My wife and I talk and sometimes the word “normal” comes up. I often want to define the word and how it applies or not to my life. We often come to the conclusion of my journey is the new normal. I have a sense of guilt through all this for it has turned my family upside down. My wife has taken on the duties I once performed and I will add I am very proud of her. While it is a load of duties,overwhelming at times, she seems to accomplish it all or I could say, conquers it all! She is my strength and my inspiration to life. She does not know it but I look up to her. I often say there is a reason for everything that happens in your life, good or bad. Some people say God does not give you anymore in your life than you can handle. I am not sure about that one for this is a lot for anyone to handle whether you are a caretaker or survivor of this disease.
May 25, 2012
I would assume someone may read this journal to get a grasp of one`s life with ALS and the direct physical changes that occurs. If you have any general knowledge of ALS, you know then that all muscle function goes away. I sometimes rather write about my thoughts, emotions I as well as many may go through during this journey. When I was first diagnosed, I caught myself planning and setting goals for the long term as if I was not diagnosed. This was one of the hardest adjustments to make. Recently, I had someone call me that was recently diagnosed and express her feeling of surreal or numb of her news. This brought back feelings once felt of my diagnosis. Feeling surreal or numb in the negative sense is the worst feeling one could experience. Almost sickening!
Recently I have gone through some changes in my physical ability. No longer am I using stairs and not because I can`t but for my safety. Because of my inability of using stairs, I can no longer get to visit my mother at her house. My family wrestles with different options of how I can visit my mother but due to the access to her home, I would have to be carried into her house. No way to attach a ramp and due to stairs is why I cannot enter her house. This is my childhood home from 3 months old so it is sad to wonder if I have seen my mother`s home for the last time.
I can handle changes that come to me periodically but several at a time can be over whelming to process. I get angry with myself when I allow myself to get down. Being human and not super human, I need to allow myself to have even sad moments. Part of my inner drive is finding other options when I come to a roadblock in life. I do not view these but as challenges to find another option. My wife sometimes thinks I am in denial but I look at it as not giving up. This will not happen until all my options are exhausted.
Life does not have to end when you have ALS. You just have to make adjustments, sometimes challenging but not allowing this disease to dictate your life. Reading this journal and trying to imagine a life with ALS, I ask you to do one thing. Lay in bed, perfectly still for 5 minutes. You may need to itch, a fly lands on your nose or you may experience discomfort, but you cannot move. You cannot speak; you may not even be able to move anything but your eyes. This may be the closest way to experience ALS without having the disease. It still does not give you any idea of our emotional status.
July 19, 2012
Over the last several weeks I have had several conversations with various people. My neighbor, who suffered a health setback, resulted in some vision impairments. Knowing him for several years, we have had many conversations, some lengthy. When his health scare occurred, he told me I was in his thoughts. He shared with me his frustrations, feeling embarrassed when around others for his lack of ability. Losing some abilities, he could sense what I might be going through. We both agreed many people take things for granted until they lose it. I often tell people to slow down in life and appreciate each day.
I had another conversation with a party who assists ALS survivors. This one person never had truly worked with people affected by this disease. Their idea of getting a sense of what one goes through the daily battle of ALS is sitting in a wheel chair for one week. I was offended on their ignorance. I refrained from expressing my thoughts but now wonder if people need to listen. I knew my neighbor listened to me due to while his disability is different, he now appreciates and somewhat relates what I experience.
I started a foundation to raise awareness, assist families and raise funds for research. Through my work with the foundation I have crossed paths with other people affected by ALS. I have noticed some are either really positive or just the opposite. I have been told they are fed up with awareness and want more done. Amazingly, without educating people of this disease, nothing else will fall in place. Research is the key obviously for a cure. Without awareness, people will not contribute to something they know nothing about. I understand frustrations of people who feel nothing or very little is being done.
I understand people will have a wide range of opinions on this subject. Most people do not get it unless they know someone or have some kind of link to ALS to somewhat understand. I was a part of this mass even when I was diagnosed. Having a relative that lost her life to ALS, it took my wife to explain the weight of the diagnosis.
My life took a turn almost 3 years ago. My future changed, I now approach my life on a daily basis and can no longer look longer than 6 months. Not because I won`t be here, but my physical condition. Now my goal is to make a difference in my work. When I am gone, I want my vision to continue.
August 20, 2012
It has been an emotional couple of weeks being notified the study I was participating in was ending prematurely. I had mixed feelings when told this of this news. Even when my wife and I told my youngest son, it broke my heart. When we told him I was no longer going to take medicine, he asked if I was going to be okay and even asked if I was going to walk again. It was very hard to tell him the word no. I have a hard time knowing and also trying to think what he is thinking at 5 years old. To see his Dad in pictures and family videos of me walking and his shocked reaction. My son is a very compassionate little boy and I only hope and pray I live to see who this little boy grows into.
With the news of the study coming to an end, came disappointment. We were preparing in December for the removal of the catheter so to receive a call was very surprising. Now you wonder if your body adjusting to this drug, without it, does the progression of the disease increase? The reason behind the decision was explained the data from the study showed the drug not very effective to be beneficial. The procedure to remove the catheter was fairly simple and only soreness afterwards. At least no more having restraints due to being in the study. Another study was mentioned to us for consideration. It is in a pill form and the drug is currently showing signs of strengthening the muscles. It is not yet available for me to enroll but it will be something to consider once I learn more details.
October 18, 2012
While most people try to imagine their future and set goals, I am living mine. My quality days are now and even though I don’t see it, my physical abilities lesson each day. I try not to look at it as a disability but more of a challenge. I try not to say I have ALS but that I am living with ALS. You may call it a mind game but I try to remain positive and look for something positive within this journey. It is not to say that I don’t have my bad days whether it’s because things are taking longer to accomplish or my emotions are not in check. I have always had a drive or a determination on not giving up until all options are exhausted. When dealing with this kind of the disease some would say I may be in denial of what is truly going on. I am fully is going on and believe my inner strength keeps me going on a daily basis. Part of my strength comes from the people I am surrounded by in my life whether my family or friends. I have said many times I have become a richer man by meeting new people through my organization. This journey has helped reconnect me with old friends, making new friends and creating a tighter family bond. My family is my world, my wife is my strength. She worries more than I would wish but it is something I cannot fix.
My wife asked me recently what makes me sad. I don’t think it’s so much what’s makes me sad as to wanting the happy days back again. I miss doing things with my sons. If anything makes me sad, it’s this disease taking away any opportunities with my youngest son going through life experiences. Playing catch with them, kicking a soccer ball or wrestling around with them. Of all my family members, my youngest son will be affected most. To look at old pictures and then look at him and see a surprised look in his eyes realizing his dad could walk at one time. When I was diagnosed he was 2 1/2 years old. In a sense, this is what is normal to him. He is very observant and very compassionate for a little boy his age. Some have told me this experience with his dad will shape him into a caring compassionate young man. What dad would not be so proud? Most parents wonder what their children will become. I only hope to live to see that happen for both my boys.
November 16, 2012
I have a habit of reflecting back on time, not so much because I have ALS but because it helps keep me in check with my life. I especially reflect towards years end to see what I have accomplished and where I need to go. What I have noticed about this year particularly with my journey is all the changes within the last six months. I somewhat look forward to having a power chair to regain some independence only to discover the limitations that came with this. While I’ve been able to get out of my home freely, it did not allow me to get into other homes. I have not been in my mother’s home since Mother’s Day and more than likely will not go to my father’s home anymore. My mother’s home was my childhood home so my roots are there along with sentimental attachment. Although my father is no longer with us, still being able to go to his house gave me a sense of peace. Other changes like bathing, using this headpiece software to write down my thoughts are things I’ve had to adapt too. For some this may be no big deal, for others may say to be grateful you are still alive. Life changes are something many people have a hard time adjusting too and this is no different. I will move on staying headstrong. This is not the end of my world but only as challenges that I have to make adjustments to in order to remain independent. I am also getting a home healthcare person coming into my home on a very part-time schedule. Again, another change to allow someone to assist me with my personal-care. Trusting a stranger is no easy task especially when it comes to your care. It is a matter of trust and comfort. The holidays are ahead and again they will bring change. I am a very traditional person when it comes to the holidays. Having no choice, it will be something I have to get over. Again it is about being together with family.
January 2, 2013
As I begin a new year, I look back and reflect. The year 2012`s theme was change, something most people do not like in their life. With having ALS I have to force myself to keep from looking too far down the road. When I was healthy, this was something I always did at the beginning of a new year when setting goals for myself. When you have a disease like this, you have to adopt a new mind set. Whether you don’t like change, you will be faced with it. If you don’t like challenges, you will have no choice. Luckily, challenges I do enjoy and in this case, it motivates me. What will this year’s theme be? I cannot answer that and more than likely it will be the same as last year’s, change! The old saying is time flies the older you get. I sure the wish there was a way to slow the clock down.