Hi, I'm sorry I didn't write back sooner....we have been out of town for a couple of weeks. I'm doing relatively well, my feeding tube still has very mild twinges of pain and some drainage, but I guess it's normal for some people.
I feel my progression is somewhere in the middle. I really have nothing to use as a basis for comparing because everyone is so different.
My speech continues to get worse as does my ability to eat regular food. My left thumb and forefinger is the only weakness I have outside the bulbar area. I noticed last fall that it as starting to get weak and now it's considerably weaker. But only those two fingers, not my hand or other fingers yet.
How fast has your husband progressed? I hope he is able to accept this disease as it will help in the long run. I was never really in denial and just take what life gives me and carry on.
I hope you are doing okay dealing with his illness. Have a good weekend!
Hi Poppies, sorry for the delay in response. I haven't logged into the ALS forum in quite a while. I hope you have been able to help your husband in letting his loved ones know his diagnosis. Each person has to handle their feelings in their own way. My husband chose to ignore it as much as possible. He did let me tell everyone close to us. He did not want to do it himself. I tried to respect his feelings, but there was no hiding that something was wrong. I hope for both of your sake, he has allowed loved ones to know what you are both going through. You both need their support. It helps sometimes, just to talk to someone about the changes that are taking place and the fear of what is to come, even if they can't physically do anything, they can listen.
Hi Again, I'm sorry you don't have ALS clinics in South Africa. Maybe some group could petition the government or the hospitals to consider starting one.
Yes I go in for my PEG (feeding tube) tomorrow. I'm a little nervous but I know it would have to be done sooner or later.
may be i can help you。I'm from China. My mother is ALS patients, the incidence of mother when the most serious weakness in the limbs, muscle cramps crazy beat, sleep at night can't sleep, eat only eat a little, and eat and drink reflex seriously, speak not clear, extremely bad mental state, the size of the fish muscle, the muscle atrophy, arm muscles like a layer of as attached to the skin on the arm, leg muscles are very stiff, deformity of the morbid across long. At present, MY mother take Chinese traditional medicine, control well, nearly a year without any development condition.now Eat, drink, talk is good. If you like to try, I can give half a month to try.You can send me e-mail: [email protected]
I am currently taking Rilutek and amitriptyline. The Rilutek is supposed to slow down progression, and the amitriptyline is to control saliva and help with emotions.
I think I understand your husbands quietness. Men have a "take care of the family" type of instinct. When that breaks down due to an illness, it makes it all the harder to come to terms. Communicating isn't easy either, I KNOW. But over time I have "opened" up more and am learning to ask for help if needed.
If he hasn't been seen by an ALS type clinic yet, I recommend you guys set up an appointment. I had my first one at the Mayo Clinic and everyone was great. A lot of information in a short period of time but well worth it.
If you have any questions or just need to have someone to listen, write anytime!
. I have told most everyone about my ALS. I even posted to my Facebook about it and was surprised how little people know about this disease. I still have a difficult time telling people up front, such as when shopping or ordering food at a restaurant. I just kind of let them think what they want. But friends and family I tell right up front.
Right now my speech is pretty bad. If I slow down and there is no background noises, I still come across okay. But even then I have to repeat certain words. One thing I have going for me is that my wife has, most of her adult life, worked with the elderly and other handy-capped people. I know she's not looking forward to the day she has to care for me, kind of keep that in the background for now.
At present I feel pretty good. The first 30-45 minutes in the morning are the worst for me. I went on disability back in February because my job required a LOT of verbal communication. It was not an easy decision for me but I think it was my best move. My most recent visit to an ALS clinic was very good, they said my breathing is diminished but I notice nothing different. One thing they are doing is setting up for me to have a feeding tube inserted. This was always one of those, I don't want any tubes or whatever just to stay alive. But since ALS is such a bizarre disease, and people can live good lives for years, I decided to have it done. I can still eat, but as swallowing liquids starts to deteriorate even more, I'll be ready.
Your husband must have been diagnosed with Bulbar ALS about the same time as me. I was diagnosed on 14 February, 2013. Happy Valentine's day huh? My wife and I have been dealing with the slow loss of my speech and a few other difficulties over the past 18 months.
I'm sending a friend request as you might have some good info for me and vice versa.
I hope your Husband is doing okay...it's one day at a time and so far, I haven't had to slow down too much.
Hi poppie...........since we are in the same "boat" I wondered if you would like to be friends with me and maybe we could share our experiences together since our husbands have been diagnosed recently, yours in Feb. and mine in Mar. What do you think? I don't really know how this messagiing thing works but I guess we'll find out. I see you live very far away so maybe emailing would be nice. Looking forward to hearing again from you. Barbis1020