Raising ALS Awareness - My Life With ALS

My Personal Story With ALS

              Sitting in the computer lab at school waiting impatiently for my mom to come online and let me know what the diagnosis was for her recent unusual symptoms.  The neurologist told my parents that it was A L S.  Three letters that had absolutely no meaning to me at that point, but somehow managed to change my life forever on January 19th 2006.

 CHAPTER I: A L S

 A couple of months before the diagnosis my mom started exhibiting symptoms, that included losing her balance, not being able to walk properly anymore, and muscle weakness.  Given that our family doctor was not doing much about this issue, we took her into emergency after the New Year where they admitted her for 5 days, doing a variety of tests, but finding nothing to be the cause. Finally they did an MRI and told us that she had an appointment on January 19th with a neurologist.

Sitting in the computer lab watching the clock slowly tick away, my mom finally messaged me and told me they know what’s wrong.  She has A L S. The first thoughts that came to my mind were thank God, finally they know what’s wrong and now they can fix her.  Not knowing what ALS was I decided to Google it right there and then.  That probably was the worst thing I could have done.  I went on the ALS society website and found out that ALS is a terminal disease with most patients living to a maximum of 3 years.  The tears started to well up in my eyes, I was absolutely devastated.  I felt numb like my whole world had stopped and I was living this nightmare.

My roommates, friends from back home, and  family members were all extremely supportive. At this point it didn’t hit me too hard that my mom was actually dying.  I was in denial I refused to accept it.  One night my mom was home alone sleeping and her shirt got caught on her neck and started suffocating.  It was a good thing our neighbour’s had keys to our house and came over to help her. After this experience I decided that I needed to move back home and spend as much time with my mom as I possibly could. 

Once I moved home, we started to see a specialist in London who told us that the type of ALS my mom has is sporadic and for some reason was progressing a lot quicker then it normally would.  This was still all so surreal, every morning I thought I would wake up and everything would be back to normal. After conducting another series of tests the specialists in London gave my mom 6-18 months to live.  My dad and I thought it best not to tell her and instead cherish every moment we have left with her.  And this is when the roller coaster I call my life with A L S began…  

CHAPTER II: SLEEP

 ~Slowly turning over during the night is now an event that someone else has to provide…~

 Turning over during sleep without thought and not having to worry about what’s going to happen when we get into bed is something we all take for granted.  For my family this has been a hard fought transition. 

It started off with my dad working nights.  At first it was okay to leave my mom alone at night because she could still cope with sleeping and turning over on her own even if it took her longer then usual.

Then as ALS slowly started taking over her body she would be able to roll from one end of the bed to the other but wasn’t able to turn over.  This is when my so called social life came to a halt.  I would sleep in my bed and in the middle of the night my mom would yell for me to help turn her over.  This happened maybe once or twice during the night.

But ALS didn’t stop there.  It made my mom weaker and weaker.  I went from being able to sleep in my own bed to sleeping on the floor beside her.  This way if something was wrong or if I needed to turn her I was right there and it was just easier to get more sleep in. 

 Slowly my mom progressed to the point where she was not  able to move in the bed, and was not able to turn over.  She had lost the ability to do something that in society today we all take for granted. 

 

It is said that a disease only affects the person who has it.  In this case that was not true.   My social life disappeared because I had to be with my mom at night, since my dad was working the night shift so that he could take care of her during the day.

I went from being able to sleep eight hours at night in the comfort of my own bed to sleeping maybe four to six hours in my parents’ bed beside my mom.  Turning over during sleep is something we can all do on our own, but for my mom I am that subconscious thought that turns her over every two to three hours.   She yells for me and I automatically know that’s my signal to turn her over and switch sides.

My dad has been working nights for almost two years.  Every normal person sleeps through the night.  He does not, he works.  The only time he gets two to three hours of sleep is during day when he doesn’t have to do household duties or does not have to attend to my mom.  ALS did not only affect my mom’s sleeping patterns, but our whole family’s. 

CHAPTER III: SPEECH

 ~Lips that spoke so many words day after day are slowly fading away…~

Talking is another function that we all take for granted.  Have you ever wondered what would happen if one day you slowly started losing your ability to speak? For someone who always talked, smiled, and laughed losing speech was extremely hard.  We went from not being able to understand certain words that had the letter “Z” when she spoke to now resorting to various other ways of communicating. 

Losing the ability to speak disappeared really fast for my mom.  Within about six months we went from being able to have a conversation, laughing, talking about anything our hearts desired to not being able to hear her say one word.  Her voice was gone, she could still make sounds and cry, but we would never hear her say ‘I Love You’, or anything else for that matter, ever again.

With my mom losing her ability to speak so quickly, it made us have to resort to other ways of communicating.  It’s a good thing that the mind stays in tack with ALS because now my mom speaks through her eyes.  It took a while, but I have come to master reading my mom’s eyes.  She just has to look at me and I know what she wants  or I just hear a noise that she makes and I know that she wants a channel changed on the television or she needs me to scratch something.  For my dad this is not as easy. For the most part it is because he is sleep deprived and does not have the patience most of the time.

When people come to visit, which is really rarely, they don’t know how to communicate with her.  I sit beside her and I am her mouth.  They talk to me instead of looking at her and talking to her.  It’s like she’s not even around, it’s like she’s already dead. That’s one of the things that really bothers me.  People take talking for granted, she still understands, if you ask a question and tell her to look at something for a “yes” or a “no”. 

She lost her speech, but she has not lost her ability to communicate. She is  still a human being, she is still my mom who can tell me she loves me when she looks at the signs I put up around the room. If people would just take the time to learn how to communicate they would realize that it’s possible even for someone who is dying and has lost the ability of speech.

CHAPTER IV: EATING

~Aromas, eating, tasting, cooking in the kitchen all the things that were once enjoyed are now a distant memory….~

            As the days went by it started getting harder and harder for her to swallow.  Family friends would bring by home made food and all she can do is smell the aromas coming from the kitchen. My heart broke at the sight. She cannot eat much now and we all had to adjust to that.      

At first it was just a change in cutlery, thicker spoon, fork, knife handles so that she could grasp it.  I will never forget the night when we were at a family friend’s place and she couldn’t grasp the regular spoon, which was soon, followed by her she breaking down and crying. My dad brought her home, as she was embarrassed and didn’t want people watching and staring at her.  We went there in separate cars and I ended up going to a friend’s house, breaking down crying for an hour because it hurt me so much to see the progression of the disease. It hurt so much to admit to myself that this was not going to get any better. Following this episode, it only went downhill. We then had to resort to pureeing her food like we would with a baby so that she can still taste it is what we have to resort to. 

Now my dad and I do not cook anymore.  We make things that are quick and do not give off too much smell because we do not want her to feel left out.  Eating together as a family as we used does not happen anymore..  Most times my dad and I eat alone because we eat when we have a spare moment away from my mom.

The day finally came when she asked us to arrange for the feeding tube surgery.  Something she has been so against since we first mentioned it, is something she desperately needed in her fight this horrible disease.  Can you imagine having a tube shoved down your throat and a hole poked in your stomach? I was in the operating room with her for the beginning of the surgery and I was there as soon as it was over.  Not able to move, not able to speak, and lying helplessly in the hospital bed with a tube sticking out her stomach was probably the hardest experience by far throughout the whole progression of this disease.

She still eats breakfast most days, by now it’s all-liquid so that she doesn’t choke on anything.  One thing she can look forward to every day is the Icy Square chocolate that melts as soon as it is put in her mouth.  After that she is hooked up to a feeding tube and machine that pumps mashed up organic food, such as carrots, beans, and some other proteins, into her stomach. Eating and tasting food is something we all enjoy so much, but for my family it hasn’t been the same for over two years.  We eat because we need the energy, not because we enjoy it…               

CHAPTER V: DAILY ROUTINE

 People say that an illness only affects the person, but that’s not true.  Everyday my mom depends on us for every little thing. It has not only affected her, but us also.  What would you do if you lost your independence and had to rely on someone scratching your nose, turning you over at night, feeding you breakfast.  All the things that we take for granted ALS has taken away from my mom. 

A typical day consists of my dad getting home from work after an eight hour night shift, waking my mom up taking her out of bed and taking her to the bathroom in our rolling chair.  After going to the bathroom and washing her face comes breakfast.  She can still eat on her good days so my dad spends an hour or so feeding her.  During all this she watches TV.  She has her set shows every single day.  During all this, my dad or my mom wakes me up at whatever time I have to get up to either get to school or go to work. 

At 11 a.m. comes another bathroom trip and this is when my dad dresses her and gets the feeding tube ready.  He has to wipe her each time they go the bathroom.  I cannot even imagine how hard that must be for her.  When she has her period, I get the pad ready, but when I am not around and it needs changing my dad does it.

Around 11:30 a.m. someone from our home health care team comes and sits with my mom for about three hours.  They watch TV together. All of the shows that I tape the night before.  My mom loves this because the person sitting with her fast forwards the commercials.  Then at 1 p.m. her soap operas start the she watches them religiously.  While all this is going on my dad gets to sleep for a little bit and I am at school.

Around 2 p.m my dad wakes up and massages my mom’s whole body.  Then I come home and I sit with her and we watch TV while I do some reading or work on school stuff.  During this my dad gets a break and goes downstairs to eat or goes out for a walk to the grocery store just to get a break from all of this.

Our nights consist of some more TV watching.  Every week it is the same shows at the same time that we watch or tape.  At 6 p.m. my dad takes her into the bathroom and gives her a shower.  We tried doing sponge baths in the chair in our living room, but it really did nothing so my dad decided to keep showering her until he cannot physically do it.  While they are in the bathroom this is when he puts on her pajamas.   

At nighttime it is my turn to be with my mom.  This gives my dad a break to sleep or eat or just watch TV.  My mom and I watch TV, talk, laugh and I massage her at night.  The time’s where we have good laughs and get to spend time together is when I feel like everything is going to be all right.  It is times like that when I think there’s still hope left.  A simple smile, a small laugh makes putting my life on hold for the time being worthwhile. 

At 10 p.m. we give her the sleeping pills and it is time for the last bathroom visit.  After this we roll her to the bedroom and put her to bed.  My dad leaves for work and I read to her in Hungarian from one of her favourite books every night.  Once I am done reading my six pages I turn on the CD player and she falls asleep to her favourite Hungarian songs.  I come back outside and do some homework or just watch TV until she yells at me to turn her over.  After I turn her over, I curl up beside her and fall asleep. Every couple of hours she lets me know she needs to turn so I  do it and we switch sides. Then morning comes, my dad is home from work and our day starts all over again…        

Some people have said they are amazed at what we are doing.  Most people walk in the door and their first question is, “Why haven’t you put her in the hospital yet?”  My dad said it best, “Because here she is my wife, there she is just a patient.”  This whole experience has made me a stronger person, and has made me realize what amazing people my parents are. My dad is a hero for sticking by my mom through better or worse and my mom for not giving up hope and fighting with all her might to beat the disease.  In reality, we all know it is not going to happen, but it has been two years and two months since her diagnosis and even though she is dependent on us for everything, she is still here with us.

I have been told I am an inspiration.  That if other people were in my place they are not sure they would be able to do what I do. I go to school, I work, and I am a primary caregiver for my mom.  As you can see ALS has not only affected my mom, it affected my whole family…

~In the end it all comes down to what would you do while you still could? ~

On January 29th 2010 my mom lost her 4 year battle with ALS.