My 48 years old husband has been DX 7/2010. He's playing golf but he is losing the ability to talk. He is having trouble eating. Anyway I just find it impossible to really believe he's going to die. The docs all say 6 months-18 months.... Anyone out there with Bulbar? Everything I read confirms what the docs say.
I'm sorry that you are dealing with this horrible disease. I most sorry that you feel "used". Please realize that most people don't know what to say. Many people use this board searching for help and answers. This disease is aggressive, fast, and leaves most unable to cope with this disease and the situation that it puts them and their families.
I lost my mother to ALS this past January. She had limb onset. She died after 10 months. The disease progresses different for everyone. I had to leave my family (I have 2 small children) to care for her. My situation is still so fresh and real. It all happened so fast. I don't know what to say...again many don't. The problem with ALS is there are not many positives to lend. My one positive and the thing that I am most grateful for is spending the last months of my moms life with her, giving her everything I could. We had wonderful moments together. We shared conversations about everything. Many many tears and laughs. I never thought we could have been closer to her, but going through this with a love one brings you to a level of intimacy that most never experience. I have no regrets, knowing that I did everything and gave everything I could. When she passed i knew her suffering and helpless feeling was over. I know she is dancing in a better place!
Surround yourself with family, friends and support. Enjoy your moments together. They will be difficult but rewarding when you reflect. I know that me and my family can face any challenge after living this. My kids learned a lot about being a family from this experience.
As to your question, I don't know about bulbar onset. I wish I could help. Please, please don't feel used. I doubt ANYBODY meant to do this. This site is not for vindictive people.
Hi there Panama, so sorry that you & your husband are going thru this time. My husband was also diagnosed with ALS, bulbar onset and we believe he has had the disease for 2 yrs or so. We look back and see that he was having some signs & symptoms years ago. Do you mind if I ask where do yall go for treatment? We attend the ALS Clinic in Houston and it is overall a good experience. (As good as can be, ya know :-)) My husband is progressing alittle more rapidly just recently. They have told us what is normally the average of 2-5 yrs. My hubby thinks it will possibly be sometime next year. Please take care & the most important thing I can share with you is to pray dear & hold onto God & your relationship with Him and your husband more than anything. Please let me hear how you are doing, ok? Praying for you both! Love in Christ, Roseh
The Bulbar form of ALS is very rare. My husband was diagnosed a little over 2 years ago. He lost his voice last year and gradually the use of his right hand and arm. He has trouble with saliva now. He walks and uses left hand with IPad typing. I suggest you find a ALS clinic because they are very helpful. Hospice also has what the call Palliative support,this means that the provide all the help needed at no cost. Most important is the advice and availability of wonderful nurses. Each ALS patient,we have learned,has different symptoms. We don't dwell on the 3 year tops prognosis because really nobody knows. I think you should do exactly what you want and focus on living. It is to exhausting worrying all the time. Practically, finances have to be put in order so that you are able to take over when needed. Power of Attorney,Living Will and Proxys are a good idea for everybody. Please don't give up. We are out there and looking for someone to talk with. Hugs,Hanna
I know someone who has bulbar ALS and has had it for 15 years. I have it and was diagnosed 6 months ago. The progression varies a lot! If your doctor is giving you a range of 6 to 18 months, I would see another doctor. Your husband should go to the BEST hospital or clinic for neurology that you can reasonably get to and see what they say. Stay positive. No one can say for sure what is going to happen and when.