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HIV Educator
Data Quality: 0 stars
  • Sex: Male
  • Age: 45y
Condition:
Quality of Life:
  • Mental: Unreported
  • Physical: Unreported
Portrait_default_thumb HIV Educator
HIV Educator
Counselor and Educator Email
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DaughterofCheryl
Data Quality: 0 stars
  • Sex: Female
  • Age: 36y
Condition:
Quality of Life:
  • Mental: Unreported
  • Physical: Unreported
1127-thumb DaughterofCheryl
DaughterofCheryl
My mom has taught me to be strong, loving and kind. She was an amazing woman who has always put others first and loved with her whole heart, unconditionally. She made me a better person, a woman who will pass these exceptional traits on to my own daughters. My mom has ALS, but she is not ALS. When I asked her how she does it, how she stays so strong... she said, "I don't have a choice". None of us chose ALS, all of us must live with the havoc that is ALS. Life goes on for however long, and we must choose to make it the best possible. Mom went home to Jesus on April 21, 2009.

Mom's first symptoms looked like a slight stroke or benign illness. We noticed the left side of her mouth drooping a bit, her smile was slightly crooked, her speech took on a slight lisp quality. None of this was life-altering or warned us of what was to come. For months before these symptoms, Mom had been experiencing what she thought were allergies... wheezing and some breathing difficulties. It was much later that we tied it all together. The facial weakness is what prompted visits to the doctor. She had a series of tests and no one had the answer. We saw a neurologist, who didn't take the symptoms very seriously but ordered an MRI. Her parting words to me were, "If the MRI looks good, I'm not going to worry". When we appeared in her office again several months later and Mom could no longer speak clearly, that same neurologist was very worried. She asked me why I didn't take Mom to the emergency room when her speech became incoherent. Why? because the specialist told me not to worry and what would an ER do for someone who has had the very same symptoms for several months... we already knew it wasn't a stroke or tumor or other urgent medical need. The neurologist quickly referred us to another specialist in Portland. She didn't tell us anything about the doctor other than her name. I went home and did the research. The new doctor was a neurologist specializing in ALS. Mom and I had known for a while that this was ALS, but it was that moment when it really hit home. Within a month of seeing the new doctor, we had the diagnosis. Hearing those words, accepting the reality, was the hardest thing we have ever done. Mom stayed strong, there were few tears and I held mine off for I am the rock, the one is holds this together for everyone. For months after the initial diagnosis, we had constant battles with insurance and social security. Moms physical abilities started declining as well. In a matter of months, she began to rely almost fully on a wheelchair. We had hoped that because she had the bulbar onset, she might retain the ability to walk, however that was not the case. Eventually, we made an advance directive, Mom wants to be here so she is asking for a vent. when the time comes. Its my job to make sure she gets the very best of care no matter what she chooses. I have two younger sisters who are still in High School and Mom intends to be here to watch them graduate. She passed away while she slept on April 21, 2009.  My youngest sister was 16 at the time.

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Snowman
Data Quality: 0 stars
  • Sex: Male
  • Age: 62y
Condition:
Quality of Life:
  • Mental: Unreported
  • Physical: Unreported
2378-thumb Snowman
Snowman
I am a managment consultant and car enthusiast. I collect and race old muscle cars and sports cars, particularly Corvettes. My wife and I were married in 2004 and she was diagnosed in 2006. She is a complete inspiration, given how she has taken on the challenges in front of her. I think we've done a great job with keeping people in the loop and, at the same time, giving her the room and the privacy to work on staying as healthy and fit as possible. I'm happy to help if you have questions about that. Email
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cure4als
Data Quality: 0 stars
  • Sex: Female
  • Age: 33y
Condition:
Quality of Life:
  • Mental: Unreported
  • Physical: Unreported
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cure4als
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missyann
Data Quality: 0 stars
  • Sex: Female
  • Age: 35y
Condition:
Quality of Life:
  • Mental: Unreported
  • Physical: Unreported
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missyann
I am a full time caregiver for my mom Sharon. I have been taking care of her for over a year now and it is the most challenging thing I have ever done in my life. I watch a few kids for income and I have a six year old boy of my own (Trevor). He is in first grade and keeps busy with homework. I am currently going through a divorce and that is about it. Other wise I have been very busy with taking care of mom. She was just tached and vented two weeks ago and so she is keeping us very busy. But she is doing well with everything. That is me on the far left in the green shirt. Email
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ashlee_1107
Data Quality: 0 stars
  • Sex: Female
  • Age: 26y
Condition:
Quality of Life:
  • Mental: Unreported
  • Physical: Unreported
Portrait_default_thumb ashlee_1107
ashlee_1107
My name is Ashlee, I am 23 years old with a 3 year old son, Ramello Jayden. I am a single mother. I am a caregiver for my second cousin, whom I refer to as Aunt Sami. She has MSA. I love my job for the most part but it is VERY stressful! Email
member since
rd031456
Data Quality: 0 stars
  • Sex: Female
  • Age: 58y
Condition:
Quality of Life:
  • Mental: Unreported
  • Physical: Unreported
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rd031456
I am one of the care takers for my sister, Robin who was diagnosed with ALS in Jan. 2010. We are 18 months apart in age and have grown up like twins (getting married the same day to best friends 35 years ago, going on our honey moon together, opening a business together and now working at the same college together. We will go through this illness together as well! I know her better than anyone else on this earth and because of that, even though this will be a difficult journey, she will have me to support her and help her through the challenges she faces.

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Zwirtes RF
Data Quality: 0 stars
  • Sex: Male
  • Age: 34y
Condition:
Quality of Life:
  • Mental: Unreported
  • Physical: Unreported
4039-thumb Zwirtes RF
Zwirtes RF
Infectious Diseases I graduate on Medical School of the Universidade Federal de Santa Maria, RS in Brazil and I make my residence trainning in Infectious Diseases at the same place. Now, I'm make posgraduate (master degree) on Medical School of the Universidade Federal do Rio Grande do Sul, RS also in Brazil. My specific area of research is HIV infection, viral hepatitis and co-infection. Email
member since
PatJ
Data Quality: 0 stars
  • Sex: Female
  • Age: 64y
Condition:
Quality of Life:
  • Mental: Unreported
  • Physical: Unreported
Portrait_default_thumb PatJ
PatJ
Caregiver I am a caregiver to my husband. He has known about his Parkinson's since 1992. He is doing very well on his meds right now after a rough period of about 9 months where he experinced many falls. We were lucky that he was not hurt - no broken bones or injuries during that period. He is participating in a drug study for a drug that evens out his on/off times and is working well for him. I look forward to offering and receiving support in this group. Email
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MicheleMitchell
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  • Mental: Unreported
  • Physical: Unreported
2089-thumb MicheleMitchell
MicheleMitchell
I was born in Rahway, New Jersey, October 10th 1959. I am second generation American Italian; that is, all my grandparents came over on a boat =) My only child, Travis, was diagnosed with ALS in November 2004, at 22 yrs of age - - quite a blow.

I work in a manufacturing facility where I started "on the floor" assembling automotive brakes in 1994.  I am very fortunate that over the years through various promotions my job tasks now require only that I have computer with internet access and a telephone.  Fortunate because my employer supports my working from home, although it is difficult to keep up with both work and with Travis' needs.  I am his primary (only) caregiver.

Travis was never "into" in organised sports, but at 6' 2" and a muscular 200+lbs, he has always been strong with an athletic build.  He was never sick prior to 2003, and as far as we know (so far) there is no history of ALS in our bloodlines.  I was never worried about illness, I worried about him driving around at night.

Extremely bright, coordinated, and artistic, he used his talents to write and play music; piano, bass, guitar, drums.  He also sketched, painted and dabbled in other mediums.  He ultimately developed a "multi-media" style of art all his own.  Travis was opening his own recording studio when his physical symptoms first appeared.

Please visit our TDF team page:http://www.als.net/ffc/familyPage.asp?familyID=230

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Radical Healing
Data Quality: 0 stars
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  • Mental: Unreported
  • Physical: Unreported
Portrait_default_thumb Radical Healing
Radical Healing
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kmllove
Data Quality: 0 stars
  • Sex: Female
  • Age: 47y
Condition:
Quality of Life:
  • Mental: Unreported
  • Physical: Unreported
3701-thumb kmllove
kmllove
Hello, My name is Karen. In the picture I am on the left and my sister Tracy, on the right. I Help my sister who was diagnosed with ALS October of 07. We are best friends. We spend ALL of our time together. We love the outdoors. We like to camp. We also love to shop.

Tracy and I looking all sexy..LOL  Cool

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msontz
Data Quality: 0 stars
  • Sex: Male
  • Age:
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  • Mental: Unreported
  • Physical: Unreported
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msontz
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amitsaha5959
Data Quality: 0 stars
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  • Mental: Unreported
  • Physical: Unreported
Portrait_default_thumb amitsaha5959
amitsaha5959
I came in touch with MS patients recently. I was moved to my core with their life changing story. Since then I have made conscious effort to connect with as many patients as I can and spend time with them trying to add fun and lighter moments into their life. Email
member since
Shodo
Data Quality: 0 stars
  • Sex: Female
  • Age: 22y
Condition:
Quality of Life:
  • Mental: Unreported
  • Physical: Unreported
29104-thumb Shodo
Shodo
>:U Email
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cmw5682
Data Quality: 0 stars
  • Sex: Female
  • Age: 31y
Condition:
Quality of Life:
  • Mental: Unreported
  • Physical: Unreported
11863-thumb cmw5682
cmw5682
My mom was DX'd with ALS March of 2009 after 2 years of testing and many doctors being totally stumped. Mom is my best friend and my 19 month old son adores her, as well as almost everyone else who has had the pleasure of meeting her. All we can do for now is be happy and cherish every moment we still have, although I'd be lying if I said I never let things get me down!

I am 27, a teacher, married to an amazing man, have a one year old son, and my mom is the only person I can tell everything to! My sister graduated high school this month so I'm staying strong for her, she needs to worry about being a teenager and going to college! I'm a little overwhelmed with life at the moment! Wink I'd love any info/advise anyone has to share!

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mrn217
Data Quality: 0 stars
  • Sex: Female
  • Age: 21y
Condition:
Quality of Life:
  • Mental: Unreported
  • Physical: Unreported
3085-thumb mrn217
mrn217
grandaughter of a parkinson's patient My name is miranda.

My grandpa has had Parkinson's for about 8 years and is doing quite well. He just keeps moving.Laughing
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Mikey Rox
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  • Mental: Unreported
  • Physical: Unreported
Portrait_default_thumb Mikey Rox
Mikey Rox
Daughter of ALS patient Email
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fredbaby
Data Quality: 0 stars
  • Sex: Male
  • Age: 47y
Condition:
Quality of Life:
  • Mental: Unreported
  • Physical: Unreported
23851-thumb fredbaby
fredbaby
I'm a at home full time carer for my wife Sally who has CFS and fibromyalgia and my autistic 5 year old step son. We live in Berkshire and both me and my wife dedicate time to the LDN Research Trust, trying to help spread the word about low Dose naltrexone. Email
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Hakuhoh
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  • Mental: Unreported
  • Physical: Unreported
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Hakuhoh
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