Hi everyone so sorry my dear sweet Vince passed away this morning. He is with God in the heavenly choir. He had a beautiful singing voice before ALS came into our lives. I will miss him and my heart is sad but I know he is fully recovered because he has a new body now. I am comforted that he is no longer suffering. I will love him always and see him one day soon. Take care and my heart goes out to all of you who are still enduring. God Bless
Hi Vince. I think I'm right in saying you were physerv24 on the aboutbfs.com board? If so, I have a question for you if you don't mind. I have developed weakness in my shoulder and the EMG showed the usual abnormalities in my deltoid, infraspinatus, supraspinatus and trapezius, but nowehere else on my left arm of left leg (right side wasnt tested). I had an MRI which showed severe stenosis in left side of c5-c6 and mild stenosis elsewhere at other levels, so my neurologist is attributing the abnormal emg and weakness to that given the overlapping nerve root symptomology etc. I also get a sharp pain down my neck and left shoulder if i tilt my neck back and down (but not if i hold it normally). I recall you were also fobbed off at one stage and told it was just a spinal problem. I don't know what to believe - any guidance is greatly appreciated? Thanks so much.
Firstly thank you for all of your insight in your posts. I am truly sorry you and your family are going through ALS. It makes me so mad that this has to affect good people who didn't deserve the hand they were dealt. I want to do something to help find a treatment or bring more awareness to this and maybe help find out why this is happening. Everyone's individual stories on here touch me so deeply.
If you don't mind me asking, the cramping in your hands and cramps that have presented themselves, did they actually feel like Charlie horse cramps or more of achey feeling? I've had body wide constant twitching since mid-late July. Sometimes they are a single twitch, sometimes repetitive. I've never had twitches or achey feelings to this magnitude before. I'm concerned of the achey feelings I get in my muscles. If I'm holding my phone the bicep feels achey. Laying on my leg makes the thigh muscle feel achey.
Any help or insight you can give is greatly appreciated.
Thanks for your answer Vince. I specially worried for stumble words or mispronounces but i can pronounce correctly after the mistake, and I believe after 3 months is not progressed to real slurred speech is a good sign. Again thanks for your answer and your time for responses to my questions.
Hello Vince, I know your history for aboutbfs. im scared because now i have similar symptomps of you, for example constant clearing throat for about four months and stumble certain words for almost 3 Months but not slurred (in April) I got EMG in May in my four limps but not bulbar region, the EMG was clean and neuro clinical exam too, but i think if possible too early for pickup bulbar onset. Thanks for reading this message and God bless to you.
Linda, although my first symptoms were body wide fasciculations and weakness in my left hand, I had changes in my vocal tone and constant throat clearing so it is believed that I am bulbar onset. I have not found another blender that compares to the Vitamix. Whatever my family is having for dinner, I have as well, just puréed in the Vitamix. Yesterday, we had creamed chicken, green beans and mashed potatoes. I like my food hot. The only thing I put in my tube right now is water for hydration, crushed meds, and an occasional food supplement called Liquid Hope if I'm on the go and don't have access to my Vitamix.
I do very high calorie soups in my Vitamix as well. Creamy Maryland Crab and Lobster Bisque are quite good. Most of what I eat by mouth is about the consistency of mashed potatoes, but a little thinner. We use whole milk and half and half in just about everything for added calories.
Hi Vince. My appetite has improved I am happy to say. I will still look into the peg tube though. Are you bulbar onset? I have a Ninja. Does that work like the Vitamax? Do you "drink" the puréed stuff hot or warm? What kinds of stuff do you purée? Sorry for all the questions but you seem like a good resource. Thanks. Linda