It has been 8 months since my mom was diagnosed with ALS. I lost my dad when I was 20. He was sick for a long time and even as a child I knew that I would have to prepare myself for losing him at a young age. I just prayed that I would when the time came I would be old enough to take care of the family. You see, my mom is an immigrant and her English is not the best. She was a stay at home mom her entire life. My dad took care of the finances and made all the big decisions. So I prayed that when he left us I would be wise enough to make those decisions for us.
I will be straight and thankful that als was ruled out by my neurologist at Cleveland clinic... That being said she believes I have stiff person syndrome which is 1/1,000,000 dx so I am alone as my body fails and I slowly lose ability to move, breathe and function.... Sadly with great pain. I am being transferred to the CC movement disorder clinic but really no good place to find others suffering how I do. I am mostly following to learn some adaptive equipment and other options that may help.
People were so kind today it broke my heart a little. My boss hugged me, others had kind and caring words. I am so grateful for all of this but the kindness also softens me, makes me a little more vulnerable.
I cant help but wonder if my fathers addiction to pain killers triggered or had any influence on his ALS. He has had ALS for about 2 and a half years now and prior to the onset of his ALS, he was pretty heavily addicted to hydrocodone. Do you think this could have possibly triggered his ALS? I mean I always read about possible "environmental influences" for ALS, but never anything like this. I'm probably just in search for something that's not really there. But thanks for your time anyways guys <3
My dad was diagnosed with bulbar onset ALS in Oct 2012 and he passed away Feb 2012. We suspect he may have had symptoms long before the time of diagnosis but never told us. About 6-9 months ago I noticed I was having slurred speech. I chalked it up to being tired, but it persisted so I finally made a Dr appt. My mri was normal and my nerve conduction and emg were normal. However my speech continues to be slurred and I've recently noticed I'm having difficulty moving food around in my mouth. I'm also very tired and I feel less strong like everything takes more effort.
I have been currently experiencing symptoms since March 10th, 2016. I am 46 m and tried to keep very active. The symptoms started in my calf. It was stiff. Then the twitches started-in my calves arms shoulder neck. Pins and needles in my feet, face arms. Dull pain in my thigh, forearms, back
As timed passed seemed that the twitches started to subside but always had the stiffness in legs and especially the calves
Well I just received some blood results that is concerning
My CK level -1140% and the Aldolase was 28.1 %
This is the first time I've joined any type of forum and from what I've read i feel this is a good place to start to get help to the zillions of questions i have about this new life and maybe my journey will help someone else cope.
It's only been six months since you passed but it seems longer then that to me. I miss you so much. Cindy, is driving me crazy trying to control me all the time. I know she means well but I am about to go crazy with her need to control my every move.
I'm just at my wits end trying to help my PALS and would appreciate any suggestions.
He is constantly stuffed up and we have tried the saline sprays, gels, Afrin, tissues in water used to wet his nose, Sudafed you name it and nothing has helped. We've mentioned it to our clinic and VA docs and it gets shrugged off as yeah that happens.
Then every afternoon - think sundowners with dementia pts - he starts getting panicked.