Hi, how are you doing? Did everything go smoothly with the peg tube? How do you feel now you have it? We have been on an emotional rollercoaster this past month. I'm hoping that will settle down. I'm sure it's all part of the process. My husband's progression is continuing at a steady rate unfortunately. I don't know if the emotional state he's been in has contributed to that or if it's part of it. We are looking forward to a few days away in the Drakensburg mountains from tomorrow. I hope this message finds you feeling well and positive.
I am on the ALSTUN (ALS treat us now) steering committee, we invite you
to ask us for more information.
tell us if you’d like to join one of our teleconference calls.
help us help you. http://treatalsnow.org/
e-mail address is [email protected]
or [email protected]
best to you,
we also have Posters handouts and stickers for your Walk
Reading our posts, I feel that you could very well be right about the 'public awareness' thing. If more famous people, besides Lou Gehrig, Steven Hawkins and Bruce Edwards came down with it, it would get more attention.
Sadly, it's almost like the dangerous intersection that keeps killing someone every now and then. There has to be a major collision, killing several people at one time, before they finally install a stupid traffic light!! I have watched this in real life.
I like the bicycle ride that is going to raise awareness, from Portland Oregon to Portland Maine. That will be a good promotion, and I hope it gets some media attention.
If we poured some of our war money into als research.....reckon what would happen? Sometimes I hate our stupid politics, regardless of which side is in the White House. Very frustrating.
So, I'm glad your procedure went well, and I hope you are able to resume your favorite activities before long.
You mentioned getting ready for the feeding tube. Are you having it fitted before you actually need it? Please let me know how that process is going for you. Thanks again for your insight and feedback, it is so helpful. Please feel free to share any thoughts you have any time. Hope you have a good weekend!
Our local Hospice for cancer patients offers support to MND patients, but that will only be further down the line. The disability grant in SA is about R800 a month (about 100US dollars I think), so not enough to support a family on. My husband does not want to talk about finances and has asked me to trust him (which I do), I can't help but worry sometimes about what's going to happen when he can't work anymore. At the moment I am just trying to stay positive and focus on today.
Hi there. Thank you so much for your messages, I'm sorry for the late reply! I am studying full time and heading towards exams right now, so between that and family I have had no time to check the forum. Right now I am supposed to be studying, but am having a really bad day trying to focus, so decided to touch base with all of you. You are so fortunate to have ALS/MND clinics, I wish we could attend one. Unfortunately there is absolutely nothing like that here in South Africa. In fact the lack of support here is quite frightening at times. Not even the neurologists are supportive, they basically give you the diagnosis (or just beat around the bush and send you on a wild goose chase of unnecessary tests) and then you're entirely on your own. Not even a word of advice. I found the ALS/MND support group in Cape Town on-line. They have a representative in Durban where we live, she is very sweet and kind and is there to offer moral support and give information, but that's it.
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]
Hi Jellis, thanks for your message, it's nice to be in touch. Yes my husband was also diagnosed in February 2013 after having speech difficulties for about a year. Are you also still working? How is that working for you (pardon the pun!). Have you encountered any difficulties with anyone? Do you tell people up front? How is your speech now? Sorry for all the questions, but my husband is not a man of many words at the best of times and it would help me to know what you're going through so I can be there for him. I am just trying to support him every step of the way so don't want to push him to speak about the difficulties he's having. Any advice or suggestions you have would be appreciated. How are you feeling at the moment? Kind regards, Poppies.
We spoke last week regarding your bulbar diagnosis. I am fearing that I might have some symptons of this disease. I think I have been having trouble speak (but no one has really noticed yet). when I said vision today some thought I said mission. And my wife on occasion say "what did you say?" but that when we are not having a one on one conversation. I went to my ENT yesterday and he scoped my throat and looked at my tongue and did not notice anything. I am also able to move my tounge around easly and indent my cheeks (not too sure is this matters or not). I am not get a neuro to see me for at least 3 months. Does any of this sound like the beginning of bulbar als?
Hi, Thanks for talking with me. We are going next week. They told us 5 to 7 days? I guess we will see. My husband found a specialist in Fond du lac that deals with Lymes disease and we have an appointment there on April 12th. We remain hopeful. My Husband just told his friends this weekend. That was very sad. We find out tomorrow if he can get early retirement. Everything seems be going so fast.
Will let you know what Mayo says.
nothing yet, I go back next week for meds. ENT told me he would have seen if anything weird was going on in my throat based on the tube which was put down by nose. Thanks for the feedback that the food thing had nothing to do with the ALS diganosis (much appricated).
Hello Jellis86, I am sorry for your diagnosis. I noticed you had mentioned "food coming out nose" I have been expereincing this but no other symptons such as difficultly swallowing, speech, etc. I went to the ENT and he told me GERD (similar to what you said). Should I believe him or seek a neuo appointment? Thanks for the advice.