Recent content by 2siblingsALS

Gooseberry, do you and your husband go to the ALS Clinic at the University of South Florida? I had my first visit there last Friday.

What have you been told to eat or take? I have heard of the Deana Protocal. I had my first visit to the ALS Clinic at the University of South Florida last Friday. The dietitian didn't give me any information on what to eat or not eat, etc.

Cramping and fasiculations Something new and painful has reared its ugly head. Out of nowhere I experienced very strong, painful cramps in the back of my thighs, especially on the right side. The fasiculations in those areas just keep twitching, longer than ever before. It sometimes feels...

Monday I saw our primary physician. He has treated several ALS patients in his years of practice. I had a "cheat sheet" with things like pneumococal pneumonia vaccine, getting established with a pulmonologist, talking about PEG tubes, etc. He knows me so told me not to get ahead of myself...

Anyone else struggling with the holidays? Is this my last Christmas? What shape will I be in by next Christmas? I don't want to be The Grinch or Scrooge and ruin other people's Christmas. I have been making out and mailing Christmas cards. Some people know about the ALS. Others are getting...

I had a very thorough neurologic examination by both the nurse practitioner and the ALS specialist as well as a very comprehensive nerve and muscle conduction study when we went to the University of Southern Florida. No question about it, I do have ALS. Even though I already knew that I did...

This evening I received an automated call from the University of So. Florida. I have an appointment with a Dr. Vu at 2 p.m. this Thursday (11/13). I couldn't write down all of the information. My right hand isn't good at the best of time, Tomorrow I will call and get the information that I...

How does ALS affect other health conditions? I have degenerative arthritis in my spine, thinning bones, Type 2 diabetes and a heart condition. Enough already! Any one else dealing with something like this? Sheila

Hello! As one PAL put it "welcome to the group that no one wants to join". This is a great support group. The members are all dealing with the same disease. You can feel free to talk about the things no one "outside" wants to listen to. You can ask questions, vent, we are here to help each other...

Hi Donna. My name is Sheila. I am 59 and was diagnosed two weeks ago. My brother was diagnosed with bulbar onset in 2006. I took care of him. I never thought that I would be diagnosed eight years later. My right hand was the culprit that led to the diagnosis. In May my primary physician...

You've come to the right place. We may have different types of ALS and are being affected in different ways but we are all in the same boat. This forum is the one, perhaps only, place where people know what you are going through and feeling. You will find support, encouragement, be able to...

Whoa! You are in the middle of a whirlwind! Take several deep breaths and sit down with a piece of paper and a pen. Write down all of your questions and concerns. You can't do everything all at once. You can prioritize what needs to be done first, second, etc. Yes, apply for Social Security...

Welcome to the club no one wants to join! I was diagnosed with ALS two weeks ago after months of seeing doctors, having MRIs and x-rays and an EMG. It started with severe muscle atrophy, weakness and curling fingers in my right hand. They thought that the ulnar nerve was impinged. When...

Time helps, time to grieve the old life, time to get over the shock of the diagnosis. Don't get caught in the trap of worrying about what lies ahead. Don't make yourself sick with fear by Googling ALS and checking out the symptoms and progression. Every person's journey is different. Think...

Welcome to the club no one wants to belong to. You will find friendship, support,encouragement, advice, information and a great group of people with the same diagnosis who can relate to what you are feeling and going through. The ice bucket challenge over the summer did help raise awareness...