-
George replied to the topic Fear and ALS in the forum Living With ALS 1 week, 6 days ago
Anger, fear, sadness, confusion, concern, love, caring, all emotions that trip over each other. Every day is different and met with resolve to do what we can to make my partner safe and comfortable. No magic or miracles. The elephant in the room just keeps getting larger.
-
George replied to the topic Loose bowel movements in the forum Living With ALS 1 week, 6 days ago
my partner has experienced this for quite some time. Nothing seems to resolve the loose bowels.
-
George replied to the topic When did you first hear those dreadful three letters…A….L….S ? in the forum ALS Awareness and Advocacy 1 month, 3 weeks ago
At the height of Covid my partner met with a Neurologist. He had been falling, fainting and had drop foot for some time. He worked in a hospital with special needs individuals and was admitted for fainting. The Neurologist looked at the muscle between his thumb and index finger and gave him a preliminary diagnosis. The Neurologist rec…[Read more]
-
George replied to the topic Caregivers, what are YOUR warning signs that you need to take a break? in the forum A Forum for ALS Caregivers 4 months ago
As my partners primary caregiver for 2 1/2 years after his ALS diagnosis, I had to learn early on that I cannot control this and Jon, my partner will tell me what he wants. I have learned that I take one step at a time and often everything changes in an instant. A much needed break is a week away and I am ready. I am forgetting very important…[Read more]
-
George replied to the topic As a caregiver, What Services Do You Use? in the forum A Forum for ALS Caregivers 5 months, 1 week ago
My partner has been diagnosed for about 2 1/2 years. Early on I felt I could do everything. As the disease progressed and he lost the use of his arms and legs, it became apparent that I was burning out and feared I would start making mistakes with his care. Fortunately for us he is a military veteran and the services provided to both of us are…[Read more]
-
George replied to the topic How to handle visitor requests when daily activities get difficult in the forum Living With ALS 6 months, 2 weeks ago
My partner Jon is either in a motorized wheelchair or bed. He has urinary issues and has no control over his bowel movements. Legs and arms are paralyzed and hands almost there. He loves company but we are careful to make sure he is able to go for a period of time, usually an hour, and then we ask company to leave. We find the direct approach…[Read more]
-
George replied to the topic How Do You “Take a Break” From Caregiving? in the forum A Forum for ALS Caregivers 9 months ago
As an update to my earlier post, in only one week Jon’s caregiver has become a member of the family and they are good buddies. I believe God sent her and it was meant to be. She cleans him, bathes him and is so, so comforting. Both of them have decided that I am not needed for the early day care and that is fine by me. For the first time in o…[Read more]
-
George replied to the topic How Do You “Take a Break” From Caregiving? in the forum A Forum for ALS Caregivers 9 months ago
I have been caring for my partner for one and a half years now, 24 hours a day, 7 days a week. early on it was easy since he maintained most of his functions and I was basically support. This elephant in the room has taken more space than we are comfortable with and now the care has become overwhelming. His legs, arms and hands are bas…[Read more]
-
George posted a new activity comment 9 months, 1 week ago
Thanks Amanda for the email. I do have one question regarding Jon. Fortunately he is not in any pain but has basically lost the use of his legs, arms, and now his hands are going. I try to be here 100% for him but taking care of him, the house, appointments, meds, shopping, THE DOG, etc. I cannot remember everything he needs or wants.…[Read more]
-
George posted a new activity comment 9 months, 2 weeks ago
Thank you Dagmar. This journey is always challenging and overwhelming. We have a wonderful support team at the Philadelphia VA. The doctor, nurses and all support staff really really care. If it was not for them I cannot imagine where Jon and I would be. I am mainly interested in new treatments and what others experience. Jon is a real…[Read more]
-
George became a registered member 9 months, 2 weeks ago
-
Hello George,
Welcome to the forum! I am one of the forum moderators and a person living with ALS: I was diagnosed in 2010.
If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. You can also search for past topics or discussions by typing a…[Read more]
-
Thank you Dagmar. This journey is always challenging and overwhelming. We have a wonderful support team at the Philadelphia VA. The doctor, nurses and all support staff really really care. If it was not for them I cannot imagine where Jon and I would be. I am mainly interested in new treatments and what others experience. Jon is a real…[Read more]
-
I’m sure you’ll find our forum members to be supportive and open about sharing their tips and experiences. We are happy you have joined this forum!
-
-
-
Hello George,
Welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. ALS is a dreadful disease and we all want to understand it better, and find a cure!!We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive h…[Read more]
-
Thanks Amanda for the email. I do have one question regarding Jon. Fortunately he is not in any pain but has basically lost the use of his legs, arms, and now his hands are going. I try to be here 100% for him but taking care of him, the house, appointments, meds, shopping, THE DOG, etc. I cannot remember everything he needs or wants.…[Read more]
-
-
I’m sure you’ll find our forum members to be supportive and open about sharing their tips and experiences. We are happy you have joined this forum!