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Thread: ALS Ice Bucket Challenge

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    Cavy Star, Photo Contest Winner Princess_Piggie's Avatar
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    ALS Ice Bucket Challenge

    So I'm sure the majority of you have seen the (quite funny) videos of everyone from Vin Diesel to your run of the mill teen doing the ice bucket challenge lately, but a lot of people are unaware of how it started.

    It started as fundraiser for ALS disease, or as it's more commonly known (in the UK), motor neurone disease.

    I'm going to take a little time to tell you about my experience with ALS/MND.

    At first, the doctors thought my nan's nerves were the problem, because she was struggling to button up her cardigan. They thought it was an isolated problem in her hand. After going through a lot of different treatments, including ones using electric shocks to induce nerve activity, it was realised my nan had MND.

    It was her worst nightmare. My nan had always said to my mum "if I ever become a burden, let me go". What she meant by this was that she couldn't stand the idea of being dependant. Not being able to get up to use the toilet, have a drink, or eat a meal unassisted was torture for her. She at one point said "I wouldn't wish cancer on anyone, but I wish it on myself now". She was made so miserable by her inevitable future that she was wishing for death.

    The doctors estimated she had about two years left, and a possible five if she was lucky. She had a very progressive and harsh case of MND.

    She was prescribed a drug called riluzole, the only treatment available for MND. It can potentially slow down the progression of the disease, however in a lot of cases it doesn't work. My nan was one of those cases.

    Her bad luck wasn't over. The doctors had gotten their time line estimation of her progression wrong. Suddenly, it wasn't just her hands, it was her neck. She lost the ability to hold her own head up. She got to spend her last months mostly looking at the floor, even with a neck brace on. Then, it was her mouth and throat. She could no longer chew or swallow properly, so it was a liquid diet from then on. She hated it, and she had to drink specially formulated medical milkshakes with all the nutrients she needed. Her doctor was kind enough to clear me to drink them too, so when she had one, I would have one too. It made her feel a little less alone in the changes she was being forced to make.

    And then, the breathing problems. Her lungs became unable to push out carbon dioxide overnight, so she had to sleep with breathing apparatus on her face. Even in rest, she was being attacked by the disease.

    About 5 months after her diagnosis, she began to have some breathing problems during the day. We called an ambulance, and I rode with her to the hospital. I had somewhere to be, and when the doctors said "She'll be fine, it's nothing serious, don't worry" and my nan gave me a slap on the wrist for "spending my youth in a hospital" and practically threw me out the door to go meet my friends, I left to see them. You have to understand I was friendless entirely until I was about 12, and nothing made my nan happier than me finally having friends. I didn't want her to feel guilty that I missed seeing them, so I told her doctors to call me the second there was even the slightest change.

    3 hours later my mum called me. My nan had been given a medication similar to euthanasia, to slowly shut down her body and stop her from feeling pain. She was now unconscious. I was so distraught with guilt that I couldn't face going to see her in the hospital. I stayed away for three days, and every day my mum would come home and say "the nurses say she'll be gone tomorrow", but she hung on. On the fourth day, I finally decided I had to see her, and I went and I had the room to myself, and I talked to her a while about life, and how much she had meant to me, about how I wished I'd never left her four days ago. I got a feeling in my stomach that I'd never felt before and I ran out of the hospital like my life depended on it.

    My mum said the very second I got out my nan's room is the second she died. Her nurses said they had seen it before, were someone will hold on and hold on until the person they love the most says goodbye. My nan was everything to me. And because of MND, she was robbed of everything she held dear.

    I've told you all this story in the hopes that you'll take part in the ice bucket challenge to raise awareness, or put your change in a donation box, or give a charity worker with a clipboard a signature next time they stop you in the street.

    MND is a cruel and incurable disease, and it deserves every iota of attention it can get, because no one deserves to die like my nan did. No family deserves to watch someone they love fade away like mine did. MND patients deserve a cure, and that's a long way off, but at the very least there needs to be more than one treatment, more than one beacon of hope for them to look to.

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  3. #2
    Cavy Slave
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    Re: ALS Ice Bucket Challenge

    Thanks for sharing this tough story. Your nan was clearly very special to you. A few years ago, I was having a bunch a neurological problems, bad MRIs, etc. and my neurologist thought it could be ALS. Through testing, we eventually found out it was neurological lyme disease from a tick bite I got while hiking, but it gave me the chance to do a lot of research about ALS. It is a hideous disease. I'm glad the Ice Bucket Challenge has been so successful.

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    Cavy Star, Photo Contest Winner pinky's Avatar
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    Re: ALS Ice Bucket Challenge

    @Princess_Piggie, Your nan was lucky to have you for her granddaughter. Here in the U.S. it's also known as Lou Gehrig's disease. He played for the New York Yankees and died at age 37 from the disease.

    My cousin's husband died from ALS when he was in his 60's. My cousin had a really good job but took an early retirement so she could be with her husband full time until he passed. They loved jazz so they continued to drive to jazz festivals while he was able to make the trip. It's a horrible disease that desperately needs a cure.

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    Cavy Slave WheekingPiggies's Avatar
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    Re: ALS Ice Bucket Challenge

    It must have been incredibly tough for you to share this with us. It seems like your nan was a wonderful strong person and she was very lucky to have you as a granddaughter. I have to admit, I didn't even know about ALS before the ice bucket challenge. It really is a great way to raise awareness and support for people who suffer from this terrible disease. I just did it yesterday and I will certainly think of your nan when I see these videos.

  6. #5
    Cavy Star, Photo Contest Winner Princess_Piggie's Avatar
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    Re: ALS Ice Bucket Challenge

    @Rydley I'm so sorry you had to go through that! I've had a couple of those scary "you might have this" moments and thankfully it's never been the case, but from what I know about it, lyme disease is no picnic either.
    @Kelsie Thank you. Raising awareness about it's very important to me because it's very overlooked in the general public I think. That's not to say other terrible illnesses don't deserve all the attention they get, they absolutely do, but I think MND should be right up there with them. It doesn't just take your life, it can entirely ruin the time you have left before it takes it. It really means a lot to me when I can get even one person to understand
    @pinky, It's strange to me that something with so many different names (and one that includes a famous person) would have so little coverage really. I'm very sorry to hear about your cousin's husband, but how good to know that she was able to make the most of the time that was left and create some great memories in the process. When you go through losing someone you loved, you have to take what little positives you can get. I promised my nan on the day she passed that I'd go on It's A Small World in Magic Kingdom in her memory because it was one of her favourite places on earth, and I'd love to get a memorial of sorts put near the ride too if I ever could.
    @WheekingPiggies, it actually was. We all have our own ways of dealing with death and mine is to ignore it as best I can. I don't like to dwell on the sadness of losing people, I prefer to remember all the happiness that surrounded them. I hadn't actually fully thought about all that my nan went through when she was diagnosed until writing this, so it was quite emotional. I wouldn't say I delude myself in to believing she's still alive, but I still text her from time to time. I like to think she somehow gets them, even if she can't respond And thank you so much for doing the challenge! It really means a lot to me and I'm sure everyone else that's ever dealt with it before too

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