PatientsLikeMe : Community

Caregiver	My patient	About Me
CRF	katrina008	wife has ALS since 2008, but still works (office job) & drives... October 2009, stopped driving & works from home only
K.K.		My name is Dani and my mother was dx with ALS in April 2008. I am the youngest of three girls and I have four children of my own. I am very close to my parents and this is been very difficult on my entire family.
Pegi
Mdgirl51		My name is Cathy and my husband is 42 yrs old with PD. Diagnosed in 2005 with the usual syptoms of loss of arm swing and tremor on right side. He still manages to work full time and continues to do the best he can. Although it saddens me, I am here through thick and thin The above was written about a year ago. PD is starting to become scarey now. Hubby doesn't seem to be doing too well these days. His PD has progressed alot in just the past 6 months. I see this is going to be a longggggggg haul!! God give ME the strength!!
notasperfectasyou		My wife has MS. I'd gladly give her my legs if I could. I'm a CPA. If your immediate thought is about accuracy, detail, inflexibly wanting the right answer - that's me. I read medical journals instead of tax court cases now. Kim's had MS for about 20 years. She was RRMS and moved to SPMS about 4 years ago. She's been on Avonex, Copaxone, Novantrone. Kim is now on Combined Antibiotic Protocol and she has recovered previously lost function. We don't accept the word "incurable" and we don't think others have to either. I'm here to share our knowledge of Combined Antibiotic Protocol.
Coffee	Lucky Tex	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.
chinagirl		I am the wife and primary caregiver of Ray, PALS diagnosed in May 2008. Since then, the disease has progressed rapidly: cane in May, walker and transfer chair in June, full-time power chair in July. Already his voce has softened and slowed and he is frequently short-of-breath, he tires easily, is beginning to have some difficulty swallowing and tremors have moved into his arms and hands and he has lost most all arm and hand strength. Despite all, he remains positive, peaceful and a joy to be with and I am blessed.
tryinghard
Kari
onamission
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
Joy4cac		I was the caregiver for my husband Charlie until his death April 15, 2009. His first symptom was July 2007 but he wasn't diagnosed until January 2009. He died of respiratory failure and muscle weakness due to ALS. He fought a courageous battle. My thoughts and prayers remain with all patients and caregivers. As I read comments on this site I realize that all of you are fighting a courageous battle. Some day there will be a cure for this relentless disease. Never give up!
Aleta	cajuntexusa	A picture is worth a thousand words.
GrievingMom
muratbay		My name's Murat Bayramoglu, living in Istanbul. My brother - has ALS since 2005. Married and has 3 lovely children.
Queenie4444
Doc Don
sput		76 year old mother has PSP. Started with balance problems and we noticed personality changes. As the disease progresses she is experiencing hand writing problems, swallowing, eye issues, incontinent, anger, sleep problems. Mayo Clinic diaganosed her.
Foreningen Livsnettet
josh11morgan		My mother Elaine Morgan passed on March 23rd, 2009 in Keller, Texas at my oldest sister's home. Some family members have told me that her passing was a blessing, and that has been a really hard thing to grasp. How can anybody's death be a blessing? Yes my mother didn't have to suffer through all of the progression of ALS, but she was tormented by it. I was geared up for a fight, and all I got was a sucker punch. All that's left is guilt, sorrow, and regrets. The doctors, and even people on this site all talk about at least having time to say your goodbyes. My advice, ALS is unpredictable.

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