Recent content by initforever

It has been 10 months that my PALS earned his wings (just a little ahead of you). Not sure if the decisions I've made are "reasonable" to someone else but they have been reasonable to me at the time that I made them. Not moving in the foreseeable future as our home has more good memories than...

Hope you don't mind if I chime in. My PALS had used Mayo Clinic in Jacksonville during his illness for clinics and such. (Meds, equipment, testing, etc). They worked closely with the local Drs. that he had. This helped in his care when he was no longer able to travel to clinic appointments. P.S...

My PALS passed away four and a half months ago and I'm just now learning how to breathe again yet still waiting on my heart to restart learning how to beat. I would like to take this moment to express to each and everyone that has ever posted on this site my sincere thanks. Although I may not...

Has anyone else PALS suffered from dry skin and scalp due to use of trilogy and its headgear along and muscle loss on back, chest and legs? I'm aware that not all things are ALS related however we have noticed a increase in itching and dry skin in areas that have lost muscle? Several times a...

You have been and continue to be an inspiration to me as a CALS throughout our journey. Much love and peaceful thoughts are with you and Brian.

His mask is Airfit F20. (covers both nose and mouth. We have tried loosening the straps and unfortunately that seems to allow for leaks.We have tried the soft cloth liners along with w gel pad that lays on his face prior to placing the mask on. Even tried just the nose mask and he says it tends...

At our latest clinic visit we were advised that it was time for yet even more equipment than we were prepared to hear. Time for hospital bed, special mattress, dynavox for speech and change in PEG formula. This has left me with little time to research therefore I am asking those who have been...

Asking for much comfort and peace for you and your family.

Laurie thank you for the reference to publications concerning MG and ALS. Our son was diagnosed and treated with MG at the very young age of 9. Following treatment and including a thymectomy he has been in remission since the age of 11. He is now 38. 18 months ago his dad (our PALS) was...

My PALS has the same issue of sweating after eating,. Doesn't seem to matter if it's food by mouth or PEG. He is drenched and terribly uncomfortable each time. His breathing is much more strained after a meal (mouth or PEG) also which we were told at clinic and by the nutritionalist that a...

"There is no easy way of saying this but your EMG confirms~~You have ALS. I'm sorry." I wouldn't wish these words on my worse enemy. It's been a year since my PALS diagnosis and yet it feels at times as if it were yesterday. In less than a year we have gone from drop foot to using a trilogy...

Thank you for the quick responses. Have spent 2 weeks on nasal steroid with no change except worse. He is on the Triology and has been since early Dec. all night and 4-5 hrs daytime. He is propped up with a wedge pillow along with others since Dec. Total weight lose since diagnosed (Oct16) has...

Is it possible for ALS to effect the small muscles around the tube and ear drum? My PALS is experiencing a great deal of discomfort over the past 2 months of pressure and popping in both ears but mainly the left. This is occurring all the time with no relief and its driving him nuts. He has been...

My PALS symptoms actually started in his abdomen with fasciculations 18 months prior to being diagnosed . At time of actual diagnosis (Oct 2016) he was fitted for an AFO for right drop foot at his first clinic. We assumed it was limb onset at that time as only his right leg and hand were...

Is anyone familiar with truncal onset of ALS?