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Old 12-07-2009, 08:02 PM   #1 (permalink)
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Unhappy Worst Times of My Life (My Life Story In A Nutshell)

Hi
My name is Andy MacKinnon, I am 19 years old and I am a sophomore at Miami University. My father, Keith, was diagnosed with Bulbar Onset ALS June 6, 2009. He is my best friend in the entire world and I cannot imagine one without him in it. He started off with slurred speech, sounding like he was drunk even when he woke up in the morning. At first he had good speaking days and then bad speaking days, with the bad getting more prevalent as the days went by. After many visits to several different doctors, he was finally diagnosed with ALS on my first day home for Summer Break after my Freshman year. As the days wore on while we were trying to deal with the news, my dad starting losing the power is his right arm. My dad played football in his high school years and was an absolute horse strength wise. Soon his left arm joined in the degradation and then his wrists followed. To date, he has lost over 40 pounds, mostly muscle. One day as we were at my future fiance's house, her little brother (5th grade) and my dad and I went out back to shoot a basketball and at this time it had become apparent that he had lost power in his wrists. He was able to drain shots like it was nothing just last year, and now the same man, under a year later, could not even make it above the rim. I almost broke into tears right then and there seeing his face. ALS is not cracked up to be a walk in the park, but I never expected it to be this bad. My whole life has been turned upside down. My father is having fits of unexplainable anger, binge drinking, body pain (which we were told he wouldn't have?), unbelieveable sadness, and this stupid disease has taken away everything he valued in his life (he was the most sociable man I knew and one hell of strong man, physically and emotionally, and ALL that has changed). As for my mother, her father 80 years old, was just diagnosed with pancreatic cancer, that has begun to spread throughout his body and the end of his days are emminent and her mother has a horrible case of Alzheimers and then on top of that her husband of 25 years has only 2-5 years to live (if that). As for me, I am a much more angry person than I was this time last year. I wake up some mornings wandering why god would put such good innocent people through this? I still am not comforted by all the literature that I read. I cannot fathom why my god would want my good father to suffer like this? I have never seen or even known about my father crying before this happened. It is a sight I will never, EVER forget for the rest of my life. I am scared, alone and angry at everything. Please is there anything ANYONE can do to ease my trouble? Please don't hesitate to ask questions or give advice. I am VERY in need.
God Bless
Andy MacKinnon

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Old 12-07-2009, 08:45 PM   #2 (permalink)
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Default Re: Worst Times of My Life (My Life Story In A Nutshell)

Andy, I'm so sorry for your dad's illness, and all the other tragedies your family is facing right now.

Unfortunately, I don't think there's anything anyone can say to ease the pain and grief you are feeling. It is something we all have to walk through at some point in our lives.

The best thing you can do is exactly what you are doing ... reaching out for support. I'm sure your university has a counseling office. I'd check in with them ASAP and see what kind of guidance they can give you. It sounds like you have religious faith, so turning to your spiritual advisor or pastor is also a good idea.

I'd also advise talking to your dad's doctor about your father's emotional state. ALS ... especially bulbar onset ... often affects emotional outbursts, which are not a sign of depression or actual anger or weakness, they are the result of actual chemical processes in the brain messing up. There are medications that can help him control this and get his normal personality back. You will both feel better able to cope when he feels and acts like his real self again.

Hang in there.
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Old 12-07-2009, 09:15 PM   #3 (permalink)
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Default Re: Worst Times of My Life (My Life Story In A Nutshell)

Thanks So much for the quick reply

My dad has always had the mind frame that he would rather be "himself" than be controlled by meds. He was prescribed an anti-depression medicine that he tried once and then decided to throw it away because he wanted to be normal. Unfortunatley this is something I dont feel my mom and I will be able to make him budge on.

I am in fact seeing a therapist here at my University and it has been helping me tremendously. I was amazed at what insights a non-biased 3rd party can give to me! I will certainly recommend that to any person in the situation close to mine.
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Old 12-07-2009, 10:28 PM   #4 (permalink)
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Default Re: Worst Times of My Life (My Life Story In A Nutshell)

Andy,

It sounds to me that your dad's case of ALS was one of bulbar onset. With the bulbar area of the brain being effected, it means just what Beth said; there are things going on chemically that your dad has no control over. In other words, without medication, he will not be able to "be himself". He will be at the beck and call of bouts of emotional outbreaks beyond his control. If he would like to have more control, he will have to get on the proper medication for it. Its just one of those things you have to face and take action action against. The inability to control emotions in ALS is called emotional lability. Your dad's doctor should know which meds to order to combat it. If he decides to take this medication, it will make life easier not only for him but for those around him.

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Old 12-08-2009, 12:28 AM   #5 (permalink)
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Default Re: Worst Times of My Life (My Life Story In A Nutshell)

Hi Andy,
Perhaps some of your pain and anger was eased just by telling us what is happening in your life. I think most of us question how God could allow these horrible things to happen to good people. I haven't any answer for that other than somehow we are being tested and we will be called upon down the road to use the strength that we gathered by living through the horrible times. The horrible times somehow enable us to become stronger and better human beings. The images that are so vivid for you now will never disappear, but the gut wrenching pain will fade a little in years to come. I know that isn't comfort for you now but we do understand and we do feel your pain, and all of would help you if we had the ability to do so. You sound like you have a very good soul, and that is what matters in life.
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Old 12-08-2009, 07:21 AM   #6 (permalink)
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Default Re: Worst Times of My Life (My Life Story In A Nutshell)

hi andy, you won't find a better group of people who truly understand your pain. all of us wish we could take it away. i know it to be true as christians we will suffer, and i can tell you i never understood Jesus' cry to "take this cup" as much as i do now. my son asked today if God caused my ALS, and i told him no, but he did let it happen. He then asked if it was because God was mean. i told him, one thing i know is God is still good. I can't even explain just how much i know this or why, it's just a surety, somewhere deep.

that surety doesn't take away my pain though, but it does give me hope. i guess you have just a couple more weeks untill christmas break, enjoy the break and the time with your dad.
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Old 12-08-2009, 09:03 AM   #7 (permalink)
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Default Re: Worst Times of My Life (My Life Story In A Nutshell)

Andy, I have been where you are and I know how much it hurts. All I can tell you is that however overwhelming the pain is now, I can assure you, you will acquire new-found strength to handle it. Believe me if you would have asked me 16 months ago, if I could handle my dad having ALS, I would have said, "Hell no!" The diagnosis is a devastating blow. I literally felt like I was completely thrown off kilter and walked around in a state of shock and grief at the beginning. Eventually, and I can't explain why or how, I got stronger and stronger as I went along. My dad's courage infused me and my mom's dedication and optimism motivated me. Also this forum has been a true Godsend. I really don't know how I would have handled myself without the AMAZING people here.

You said, "I have never seen or even known about my father crying before this happened. It is a sight I will never, EVER forget for the rest of my life. I am scared, alone and angry at everything." Boy do I relate to that! I wanted to kick mailboxes and punch walls at the beginning. I too had never seen my dad cry before ALS, except when his parents died and that was for a minute or so. He had been the typical stoic Italian man you see in the movies and this disease took that stoicism away but you will see, as time goes on that your dad's crying will mean something completely different from what it used to mean. My dad cries when he is touched and happy too and sometimes it is actually heart warming. I know that sounds crazy.

Like your dad, my father wanted nothing to do with antidepressants at first. As time went on and we continued to lovingly explain to him that the antidepressants are not given to him because he needs help "handling" his situation. They are necessary for the physical neurological changes happening in his brain. ALS affects the brain and antidepressants are drugs that treat chemical imbalances in the brain. There is nothing to be "against" here. If he had a heart condition and needed to take medicine I bet he would. This is no different. My dad came around and I hope yours does too.

I am very glad to hear that you have a therapist. I should have gotten one months ago but am seeking one now. The ALS Society is a tremendous help and I am sure you can easily find the branch closest to you.

Andy, it sounds like you are going about this in all the right ways. Please feel free to vent your feelings here. You are surrounded by people who understand.

My heart goes out to you.
Rosella
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Old 12-08-2009, 04:16 PM   #8 (permalink)
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Default Re: Worst Times of My Life (My Life Story In A Nutshell)

Oh Andy, I'm so so sorry. I don't have any words that will make you feel better I wish I did. I can tell you though that I know exactly how you feel and remember all too well what its like to be in that place you are at now. You are so young to be dealing with all of this. If you want someone to talk to feel free to Private Message me.
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Old 12-08-2009, 10:09 PM   #9 (permalink)
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Default Re: Worst Times of My Life (My Life Story In A Nutshell)

Andy- my heart goes out to you.. My grandmother had ALS and though I never met her, hearing stories from my dad about her demise and from being so incredibly vibrant to being able to do so little is heart breaking. Recently I became involved with a funny and touching film called "Leave them Laughing" about comedienne/singer Carla Zilbersmith who has ALS. Watching the film might serve to ease some pain. Carla, though mostly paralyzed, is determined, along with her teenage son, to find humor in the face of something she has no control over. Please feel free to go to: leavethemlaughingfilm.com. We hope Carla's story will help ease the pain of so many connected to this terrible disease and raise awareness so that one day there will be a cure.
Best wishes, Kelley
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Old 12-09-2009, 04:49 PM   #10 (permalink)
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Default Re: Worst Times of My Life (My Life Story In A Nutshell)

Andy I can give you a Dad's perspective on this. I am in my early 50s and my kids are in their 20s. I was diagnosed a few months ago and am having trouble with speech, walking and carrying things. It is a hard adjustment when you used to be the strong one in the family and now need help. ALS affects everyone in the family and I know it is hard on my kids to see me changing. What helps me is knowing that I will still have something to offer even when I am disabled. We old fogies like to think we have learned something in life, we call it wisdom and while the younger generation is not always eager to hear our hard earned knowledge, we are eager to pass it on. So I would suggest trying to engage your father, talk to him, interact with him however you are able to. Try to make him understand that you will continue to value and love him even when he cannot do everything he used to. Do not let him withdraw, try to keep him involved with the family and the world.

It is not an easy road for any of us, the family is affected just as much as the person with ALS, but I think that keeping everyone together and seeing the situation as something to be faced as a team will help everyone to feel stronger and supported.
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Old 12-10-2009, 01:28 PM   #11 (permalink)
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Default Re: Worst Times of My Life (My Life Story In A Nutshell)

Andy, pancreatic cancer and ALS are both very cruel and ugly diseases, and I'm sorry that you're seeing both of them so close up at such a young age.

My father died of pancreatic cancer last year, and my mother has bulbar onset ALS now.

Good to hear you're seeing a therapist. I wish your Dad would see someone, or that one of his ALS professionals would have some honest and open discussion with him about making the most of these days.

Take the time to enjoy your family as much as you can this Christmas as by next year the picture might be somewhat different.

sesl.
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Old 12-10-2009, 03:28 PM   #12 (permalink)
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Default Re: Worst Times of My Life (My Life Story In A Nutshell)

Andy, I was thinking more about your Dad not wanting to take drugs that will "affect his mind" because he wants to be "normal."

Let's not forget that his brain is already affected. About 70% of the neurons in the bulbar region of his brain have now been compromised, and it sounds like other areas of his brain are now affected too. There are two drugs that might interest him.

One is called Rilutek. It slows down ALS. Some people might wonder why you would want to prolong life with ALS, and that is certainly a consideration. But for many people, especially those in the early stages, a life with some limitations is a good thing to prolong. He can always stop taking the drug later when he feels the limitations are more than he can bear.

Another drug category deals with a specific symptom of ALS. That symptom is emotional lability. It causes your emotions to go up and down like crazy. You are not behaving "normally" when this happens, and there are different drugs that can help normalise this effect. The symptoms can include bursting into tears when you see a good friend, laughing hysterically at a sad movie (believe me, that can be soooo embarrassing), sobbing uncontrollably when it is time to say goodbye to a visitor you like, or laughing with glee when it is time to say goodbye to someone you DON'T like! People who experience emotional lability often want to get these outbursts under control and will take the drugs, even if they are not drugs that they would take under different circumstances.

If you are talking to your Dad about the disease and treatment you might put it to him in terms similar to these.

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Old 12-10-2009, 05:56 PM   #13 (permalink)
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Default Re: Worst Times of My Life (My Life Story In A Nutshell)

ive been dealing with emotional liabilities for 5 yrs and my neuro told me there was nothing for that. why did he lie to me.
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Old 12-10-2009, 06:09 PM   #14 (permalink)
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Default Re: Worst Times of My Life (My Life Story In A Nutshell)

Cukita ... Unless he has been doing his homework and reading current medical publications, he simply may not have known about them. That's another reason to seek out big clinics, even if it is a hassle getting there. The people know the latest developments.
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Old 12-12-2009, 01:57 PM   #15 (permalink)
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Default Re: Worst Times of My Life (My Life Story In A Nutshell)

Cukita,

There is a long thread about Emotional Lability on the ALS/MND forum. Do a search and you'll see it. Lots of the PALS are talking about which drugs they take.

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