I was "glad" to see some posts about the change in marital relationships too. Our marriage of almost 30 years is completely, 100 percent different than it has ever been. He is still the love of my life and I will take care of him as long as I am able to do so, but it is certainly no longer the...
sadiemae.....just want to say we are in the same boat as you. I can't imagine next year when my youngest turns 18 and the SS decreases so much. I know I will have to find a job.....and who can afford full-time sitters---not us. My husband cannot help himself either. Prayers for both of us and...
I find this all so fascinating.....and "Cypress" glad to know you in person! You are amazing! We don't want a P.E.G., but thinking about it again just for the purpose of getting/requesting Propofol.
My husband has had the stinging, burning, tearing for two years now. The ophthalmologist is convinced it is related to the ALS. Most everyone in our ALS Support group have some issue with their eyes that they did not have before.
We have had hospice for a little over a year now. I do not know what we would have done/do without them. Baths and showers all week, nurse visits, doctor visits, meds, equipment. They have been such a blessing to us. My continues to progress and as far as I know was jist re-certified...
My husband is one of three brothers out of four with ALS....and not any of the genes they have identified for familial forms are the cause of this beast in this family. One brother has never accepted his diagnosis from Emory, the Mayo in Minnesota, the Carolinas, UAB, etc. And multi-thousands...
It has been a painful, burning ting for my husband since the very beginning. Two and half years in and it seems that the burning water has lessoned some. We did seek medical attention, first from the neuros, then the opthalmologist. None could give us reasons other than maybe he was no longer...
My husband's first EMG was done by an area neuro, but he said it was clean. Less than 2 months later, the Vanderbilt ALS Clinic did a much longer, more thorough EMG and he was diagnosed with ALS after a long clinical exam, NCV, and EMG. I also found out that when the EMG is being done the...
My PALS started out with unreal urgency, for both "bathroom issues" and now has the retention issue. Others in our group have or did experience this as well. So, official symptom or not, I truly believe it is all related.
We use Vanderbilt, BUT my husband's brother also has ALS and lives in Jax. He really likes the Mayo ALS Clinic as well as the ALS Support down there. Best Wishes.
Thanks everyone. He is on SS and Medicare and the ALS Assn has been wonderful to us. We just don't go to clinics anymore; it is too tiring and expensive for us. Hospice has been good for us the last 9 months. They have provided the cough assist, hoyer lift, bipap, hospital bed and an aide to...
I love my husband. I love him so much. I hate ALS and what it has stolen from him, from us, from our family. In two year, he has gone from being active to not being able to walk, struggling to talk, choking, and he is showing signs of FTD. I injured my back within the first year of...