961 members have decided to share their profiles only with other members of PatientsLikeMe.
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Coffee
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member since |
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Coffee
Coffee |
I live in Spring, Texas with my husband. He was diagnosed with ALS on November 14, 2007 - the day after our 45th wedding anniversary. He had been having symptoms since January, 2005. His whole attitude about having ALS and life in general is amazing. We have one son, Scott, who lives nearby and is a great help in caring for his Papa. We have great friends and a wacky sense of humor to help us through this. We also have one puppy that keeps us all on track. |
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expressdad
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First Symptom: 11/01 |
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expressdad
expressdad |
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Radar36
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First Symptom: 07/96 Dx: 07/96 |
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Radar36
Radar36 |
Now a little about myself, My name is Jeff. I am from Ma. I was dia in 1996 with sec pro MS. . |
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Sanguinius S224
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First Symptom: 09/03 Dx: 03/13 |
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Sanguinius S224
Sanguinius S224 |
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jamie
James Heywood |
Co-Founder, Chairman |
I am the Co-Founder with Ben and Jeff and Chairman of PatientsLikeMe. and the Founder and Former CEO of the ALS Therapy Development Institute.
Since Stephens (alsking101) diagnosis in 1998, we have learned so much about what patients need to know. We hope to help patients share their knowledge with others. PatientsLikeMe and ALS TDI come from the concept of wanting to find answers for todays patients.
My Brother: Stephen, 1969-2006 Things need to change PatientsLikeMe is changing the rules in medical care by giving patients in depth information on outcomes, treatments and symptoms that they can use to make more effective decisions on managing life changing illness. What we measure we improve. I hope that PatientsLikeMe gives patients the power to measure their disease outcomes and everyone the ability to improve them. To accelerate the development of new treatments I founded ALS TDI in 1999 after Stephen was diagnosed. ALS TDI is the world's first non-profit biotechnology company and has become widely recognized as one of the most promising and innovative research organizations. ALS TDI implemented an industrialized therapeutic validation process and built a world class discovery program. We were the first organization to run an open research program, posting in real time the results of our studies for patients, doctors, and the research community. Over 100 families have joined with Stephen and my family to fund ALS TDI. Overall during my time as CEO we raised 50 million dollars including the historic discovery partnership in 2007 with Augie's Quest and the Muscular Dystrophy Association. As active board member I believe ALS TDI is the best non profit investment any patient or family that wants to accelerate effective treatments for ALS can make. Thank you for joining my brother and my family in sharing your own experiences on PatientsLikeMe. You are working to help others and create an environment that improves care and accelerates the development of new treatments.
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Eva Sweden
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member since |
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Eva Sweden
Eva Sweden |
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jessina
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member since |
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jessina
jessina |
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bellatrix_amnell
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First Symptom: 01/04 Dx: 05/04 |
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bellatrix_amnell
bellatrix_amnell |
My name is Emily. I am currently 24-yrs-old. I was diagnosed with Fibromyalgia by the time I was 15, and CFS by the time I turned 18. I've also been diagnosed with Major Depressive Disorder with an underlying mood disorder, OCD, ADD, Raynaud's Syndrome, Seasonal Affective Disorder, General Anxiety Disorder, mild asthma, hypothyroidism, and severe allergies. It's made life tough having to deal with so much at such a young age, but I have been blessed with a very supportive family, compassionate friends, and a very patient and understanding husband. |
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carolm
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member since |
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carolm
carolm |
My husband, poplar, was just diagnosed with PD after two open heart surgeries in the last 6 months. We are both 55 and have lived with good health and much activity, both practicing yoga every day up until the surgeries. We are more inclined to natural medicines and life style corrections rather than the meds, but of course will do what ever it takes to improve the situation. I will share what we find helps. |
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bheywood
Ben Heywood |
Co-Founder, President | I am one of the founders of PatientsLikeMe. We started PatientsLikeMe to help patients learn from our family's experience after my brother Stephen was diagnosed with ALS. We hope you find the site useful - please let us know if you have any suggestions or improvements. Look for our family's story in the documentary SO MUCH SO FAST which aired on PBS's Frontline. |
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Atossa
Steven Quay, MD, PhD, FCAP |
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thecyclist
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First Symptom: 03/88 Dx: 01/09 |
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thecyclist
thecyclist |
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SoxGuy
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member since |
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SoxGuy
SoxGuy |
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DrSantucci
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member since |
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DrSantucci
DrSantucci |
Dr Thomas Santucci |
What Is Brain-Based Care?
Brain-Based Care marks the latest in specific diagnosis and treatment of pain syndromes, sleep and fatigue, cognition and behavior problems, balance disorders and stroke recovery.
This revolutionary work puts the brain back in charge of controlling the runaway impulses of brain stem malfunctioning contributing to a host of chronic conditions including Chronic Fatigue, Fibromyalgia, ADD/ADHD, Insomnia, Dizziness, and brain impairment from MS or Stroke.
Visit www.BrainBasedCare.com for more information.Read the story of two recent patients we have treated:Joya W - I heard Dr. Santucci was amazing with lower backs. I went to his office with a complete inability to move my arms and legs. I was also tired so much of the time. As a student, it was difficult to excel in school. We immediately implemented a treatment plan that included nutrition and Brain Based Therapy. I wasn’t sure what to expect because I hadn’t heard of anything like this before. Within a few short months I was fine. I have energy and my body works like it’s supposed to. Even more, I was surprised to learn that these types of results are normal for patients seeing Dr. Santucci. http://brainbasedcare.com/nutrition-and-energy.htm June D - Before meeting Dr Santucci, I was having the hardest time performing basic activities including cooking, cleaning, driving or shopping. I experienced 29 years of whole body pain which was rated 7 of 10. Other symptoms which I was affected with included photophobia, increased sympathetics, loss of consciousness, sexual dysfunction, irritability, as well as changes in hearing, memory and cognition deficits. I also had thyroid, kidney, and pancreas dysfunction. I had seen multiple specialists including Internal Medicine, Nephrology, GP, and Acupressure but I was still hurting. After 3 weeks of Brain-Based Care with Dr Santucci, I had a 50-70% decrease in pain levels. My energy and cognition improved to about 70% by the end of the 12 week treatment program. I can happily say that I am now walking, cooking, shopping and exercising. Brain-Based Care is the solution for:* Fibromyalgia * http://brainbasedcare.com/fibromyalgia-treatment * ADD / ADHD * http://brainbasedcare.com/add-adhd * Chronic Fatigue Syndrome / CFIDS * http://brainbasedcare.com/chronic-fatigue-cfids * NeuroTransmitter Imbalance * http://brainbasedcare.com/neurotransmitter-imbalance Other links of interest:* Testimonials * http://brainbasedcare.com/category/testimonials * Back Pain * www.408BackPain.com * Chiropractic * www.thewellnesspros.net
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david100
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First Symptom: 11/06 Dx: 06/07 |
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david100
david100 |
On Facebook: Add me: Dave Dennis
My 11 year old son's team winning it's first tournament of 2009. (Shawn David #25)
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DoctorStevesBanjo
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member since |
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DoctorStevesBanjo
DoctorStevesBanjo |
M.D. |
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Jules 4 Rog
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First Symptom: 03/80 Dx: 04/80 |
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Jules 4 Rog
Jules 4 Rog |
patient's wife | My husband was diagnosed with ALS on September 22, 2005. It's been a long and tough road, but he is doing well and I look forward to many more fun filled years with him and our two boys - altogether. His progression is fairly slow and has focused in his hands and lower arms, so I consider myself very lucky and thank God each day. We take one day at a time and do try and stay positive. See "Rog" |
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Jagrn
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member since |
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Jagrn
Jagrn |
My name is Julie. I'm 44 yrs old. My Dad was diagnosed with ALS 1/13/09. I am devastated by this news. We were told May 2008 there was a high suspicion this could be ALS. I've cried everyday since then. I am an RN, and as an agency nurse, have taken care of an ALS patient in his home, and have witnessed first hand the cruelty of this disease and the challenges it imposes on the patient, family and caregivers. I never imagined ALS would hit so close to home but I refuse to ask, "why". I am a caregiver to my Dad, and I commit to help find a cure for this dreadful disease. NEVER GIVE UP |
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allandale
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member since |
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allandale
allandale |
I am the husband (58) of Corinne (53) we have 6 Children with 5 married and 7 grandkids with one on the way.
I still work full time as a building contractor and also serve as primary care giver for my wife - flexiblity in my work schedule allows me to do this.
Corinne's possitive attidude and bubbly personality has made her an inspiration for others with ALS and others facing less devastating situations. About 19 years ago Corinne and I were watching a TV documentary about Lou Gehrig and ALS. I can clearly recall Corinne becoming emotional and mentioning that ALS must be the most devastating disease that one could have (slow paralysis and death in a few years). Corinne expressed how, should she ever be afflicted by ALS, she would never be able to cope. Well fast forward to Dec 2004. At age 50 and in excellent health and a good singer, Corinne noticed that her voice would break while singing. Over the next few months we noticed that her voice would sound nasal, particularly in the morning. We consulted with our physician and over the next 10 months and visits to an ear nose and throat specialist and neurologist, finally ended up at the Hamilton ALS clinic and Dr Turnbull. By November 11, 2005, all other causes were ruled out and ALS was confirmed. Confirmation of the knowledge that you have ALS comes over a period of time. The point were you realize that there is no other possible cause for the symptoms and all hope for a normal life is wiped out is devastating.Notifying family and friends and the emotions involved are an experience similar to announcing a death. Yet within a short time things do return to a "new" normal made easier by our faith in God and we know all things are in His hands. Twenty nie months have gone by. Corinne now is unable to speak or eat. She uses a small Palm unit with text to speech features and nourishment is provided by formula injected through a stomach (PEG) tube. She tiers easily and walks short distances with difficulty - stairs are not possible. Buttons and zippers are hard to manipulate but if you saw her you could not tell there was anything wrong. She still manages some minor daily chores but can no longer drive. She remains very positive and deals with difficulties by easily adapting and finding new ways of doing things. A wheel chair is now a necessity for anything over 100 ft and we recently obtained a power chair. A chair glide is used to access the 2nd floor. A suction machine is used regularly to clear her mouth and throat of fluids to prevent ckoling and the laundry room is being coverted to be used by her as it is better for accesss. She uses email and a web cam to communicate. This is something she was a real "Luddite" about but out of necessity quickly adapted to. Over the last 2 years we have taken note of the ALS slogan "what would you do if you still could" and travelled extensively doing the things we had planed to due in our retirement years and hope to continue to do this for as long as possible. We have come very active in fund raising for ALS over the last few years and are involved in organiziing the Hamilton Ontario "Walk for ALS". With the help of freinds and relatives we have raised about $90,000.00 over the last 2 years ,for the cause, and we do so to help those stricken with ALS and provide funds for research so in the future other will not have to deal with those "three letters that change your life - forever". |
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Judyb37
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member since |
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Judyb37
Judyb37 |
It is almost 1 year since I lost Fred (FMB). It doesn't get any easier as time passes. It just makes me miss him so much more. We have a granddaughter now, she was born in Nov. 2010. He never met her but she has so many of his qualities. If there is a god, please find a cure and stop this terrible disease. I love you and miss you so much. Judy <3 |
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