08 September 2012

Families with ALS value every second of life

A few months ago, I wrote in this column, "The worst thing about ALS is knowing that if I die, I will leave my daughters behind. The best thing about ALS is knowing that they will be okay." On my blog and on Facebook I posted a picture of the two of them, now adults, hugging. One of the reasons I know they will be fine if I die is because they have each other. About a week later, I realized that I had been insensitive to my Facebook friends who are members of families that have ALS.

I was diagnosed with ALS (Lou Gehrig's disease) in February 2007. The disease has robbed me of my ability to walk, talk, eat, hug, and take care of myself. I live in a nursing home and spend all day in a power wheelchair.

Things could be worse. Things could be a lot worse. I could be waiting for and dreading the news that one or both of my daughters have been diagnosed with the same disease. About ten percent of ALS cases are called "familial" because they are inherited through family bloodlines. These families have the sad history of loved ones through the generations dying from ALS. They have the terrifying prospect of watching their children get ALS.

My type of ALS is called "sporadic" because it attacked me without any genealogical warning. My friend, Michelle Farr, is not so fortunate. Her husband's family has the mutated gene that causes ALS. Michelle writes, "The Farr Family has fought this disease for over 12 generations with at least 50% of each generation affected by the disease. We have lost count of the affected as the number grew too large over the last 400 years. This family understands all too well the devastation that this disease can cause families and many live in fear for their family members and wonder ‘who is next’ on a daily basis."


Michelle Farr, her husband, and their boys
 

Michelle and her husband have two cute blonde-headed boys in elementary school. The younger boy is mischievous and his older brother is more serious. They each have a 50-50 chance of getting ALS. Michelle writes, "We all work together to stay strong and support as best we can. We laugh every day and value every second of life."

Michelle has asked me to ask you to contribute to two organizations which work to find a cure for ALS: The Robert Packard Center at Johns Hopkins University (www.alscenter.org) and the ALS Therapy Development Institute (www.als.net).

Note: The day after this article was published in the newspaper, another member of the Farr family, Dennis Myrick, died of ALS.

(This article was first published in the Asheville NC Citizen-Times newspaper and is used here by permission.)

10 comments:

  1. I have been following this blog for a while now and i decided to share my story on how i survived and got a cure from ALS which would have maybe by now killed me. I was diagnosed with ALS in 2013 and it came with symptoms like overall weakness and i could not swallow and i ended up in a wheelchair though my doctor tried to put me on occupational therapy and physiotherapy but none seemed to give a relief as my condition grew worse in 6 months. I was lucky to have contacted Dr. Joseph and used his herbal medicine that treated me and gave me life, just 3 months of using the medicine which spans for 6 months positive improvements were visible, like my speech, all movements. A few years have gone by and i am still very much alive and healthy. Do not give up, you too can get a cure you can contact him directly on the contact below (josephalberteo @ gmail. com) for advise and effective solution. I pray you get cured soon.

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  2. As a sign of gratitude for how my husband was saved from ALS, i decided to reach out to those still suffering from this.
    My husband was diagnosed of ALS in 2013 and it was really tough and heartbreaking for me because he was my all and the symptoms were terrible, he always have trouble swallowing , and he always complain of Weakness of the body . we tried various therapies prescribed by our neurologist but none could cure him. I searched for a cure and i saw a testimony by someone who was cured and so many other with similar body problem, and he left the contact of the doctor who had the cure to ALS. I never imagined ALS has a natural cure not until i contacted him and he assured me my husband will be fine. I got the herbal medication he recommended and my husband used it and in one months he was fully okay even up till this moment he is so full of life. ALS has a cure and it is a herbal cure contact the doctor for more info on drwilliams098675@gmail.com on how to get the medication. Thanks for reading my testimony.

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  3. I am Karen from Canada, I once suffered from a terrible and Chronic ALS,for more than 23 years , the doctor told me there was no permanent cure i was given medications to slow down its progress, i constantly felt my health was deteriorating as i constantly had muscle weakness and difficulty speaking ,this ailment was really terrible especially when am going out with my friends, i have this constant disorder for about 23 years, this was really a terrible ailment ,on thin one day that i was going through the internet,and i came across a post of Mrs kate on how her husband was been cured from als through the help of Dr Williams herbal product, I contacted this herbal doctor via his email and explain everything to him and make purchase of his product,few days later he sent me the herbal medicine through courier service, when i received the herbal medicine, i used it as prescribed by dr williams and i was totally cured within those week of usage,on thin now i have not experience any sign or characteristics again . for more information you can email him on drwilliams098675@gmail.com for help

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  4. I have being on blog Sites for a while now and today I felt like I should share my story because I was a victim too. I had HIV for 6 years and i never thought I would ever get a cure I had and this made it impossible for me to get married to the man I was supposed to get married to even after 2 years of relationship he broke up with me when he finds out I was HIV positive. So I got to know about Dr. Itua on Blog Site who treated someone and the person shared a story of how she got a cured and let her contact details, I contacted Dr. Itua and he actually confirmed it and I decided to give a try too and use his herbal medicine that was how my burden ended completely. My son will be 2 soon and I am grateful to God and thankful to his medicine too.Dr Itua Can As Well Cure The Following Disease… Cancer, HIV, Herpes, Hepatitis B, Liver Inflammatory,Diabetes,Fibroid, Get Your Ex Back, If you have (A just reach him on drituaherbalcenter@gmail.com Or Whatsapp Number.+2348149277967)He can also advise you on how to handle some marital's issues. He's a good man.

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  5. My heart goes out to everyone who have or cares for ALS patient. My husband was diagnosed with ALS 3years ago, He had gone through several bouts of depression, the first sign of ALS appeared in the hand and arm as he experienced difficulty with simple tasks such as buttoning a shirt, writing, or turning a key in a lock later affected one of the legs, trouble breathing, slurred and nasal speech, difficulty chewing or swallowing. He also experienced awkwardness when walking or running and I noticed that he was tripping or stumbling more often. He had gone through several bouts of depression, over 6 hospitalizations in just two years. Coping with ALS wasn’t easy. He had attempted suicide and all treatment had done little for his improvement. When I became fragmented in my thinking, I started to have my worst problems. We've finally benefited from some real dedicated support group of people with natural treatment and a small number of friends and family that knew and loved us. Dr vihaan treatment has turned his life around, he is now symptom free. I don’t want people to feel that suicide is their only option, know you are loved, you are valuable, you are worth more than your darkness. Reach out and get the support you need email: vihaanrey38@gmail.com start your natural treatment, Try to understand the blackness, lethargy, hopelessness, and loneliness they’re going through. Be there for them when they come through the other side.

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  6. My mother was diagnosed with ALS (Lou Gehrig's Disease) when she was 68 years old 2 years ago. The Rilutek (riluzole) did very little to help her. The medical team did even less. Her decline was rapid and devastating. Her arms weakened first, then her hands and legs. Last year, a family friend told us about Ogbeifun Herbal formula and his successful ALS TREATMENT, we contacted him. and ordered his ALS Formula, i am happy to report the treatment effectively treated and reversed her Amyotrophic Lateral Sclerosis (ALS), most of the symptoms stopped, she is able to walk and eat well, sleep well and exercise regularly., she is pretty active now and her attitude is extremely positive.i joyfully recommend you to dr ogbeifun because health is wealth this is a very bad experience with those living with ALS please do not hesitate to contact him ogbefunhearlingtemple@ gmail .com or call/whatsapp him via +2348102574680

    ReplyDelete
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    Replies
    1. A big thanks to Dr James for reserving my ALS disease with his effective herbal formula. I was diagnosed of ALS disease 5 months ago of all the horrible experience, I was bitterly in pains. My symptoms progressed so fast that I couldn't eat proper, walk, work, breath well, it was my worse part of life then. On this fateful day, I came across a post just like this concerning a patient who used Dr James herbal medicine herbal formula to reserve her ALS disease for over 4 years now. I was skeptical about it but I had no choice than to also contact this dr James I visited his blog site and made my orders. To cut it short, I used the herbal formula for six weeks as instructed and today makes it 7 months without no symptoms. I am also making my testimony about this miraculous did. I have been given 3 years ALS disease reserved guarantee after which i will make another purchase for another 3 years span again. Thank you very much dr James. For those who needs help, you can reach him via email on jamesherbalformula@gmail.com or WhatsApp number: +2348102574680 . Let's share this and help everyone. Don't judge until you give it a try

      Delete
  8. A big thanks to Dr James for reserving my ALS disease with his effective herbal formula. I was diagnosed of ALS disease 5 months ago of all the horrible experience, I was bitterly in pains. My symptoms progressed so fast that I couldn't eat proper, walk, work, breath well, it was my worse part of life then. On this fateful day, I came across a post just like this concerning a patient who used Dr James herbal medicine herbal formula to reserve her ALS disease for over 4 years now. I was skeptical about it but I had no choice than to also contact this dr James I visited his blog site and made my orders. To cut it short, I used the herbal formula for six weeks as instructed and today makes it 7 months without no symptoms. I am also making my testimony about this miraculous did. I have been given 3 years ALS disease reserved guarantee after which i will make another purchase for another 3 years span again. Thank you very much dr James. For those who needs help, you can reach him via email on jamesherbalformula@gmail.com or WhatsApp number: +2348102574680 . Let's share this and help everyone. Don't judge until you give it a try

    ReplyDelete