Mom's new diagnosis

[allison926]

My mom was diagnosed w/ ALS on 1/15/08. Her symptoms began in the summer of 2007 and she has undergone months of testing to be handed this diagnosis. Her symptoms seem to be progessing so quickly. Her speech is getting worse, she is having a lot of trouble getting up from a sitting position, her arm usage is pretty low & she seems to be coughing and choking more. My family and I do not know what to think. Some of the posts I have read seem to have slower moving symptoms. Does this mean that she has a shorter life expentency? I'm just having a really hard time seeing her so dependent. She has always been the strong force in our family. She has not even really talked about her diagnosis with my sisters & I. She has made a couple of comments but has not discussed anything serious. I just feel so overwhelmed. There is so much information out there but it seems there is no norm for this disease. What about the drug, Rilutek? How has it worked for others?

 

[sharonca]

I'm so sorry to hear of your mother's diagnosed. Everyone progresses differently. What I did after diagnosis was search the various forums for things like Rilutek and other things I was interested in. Just tried to absorb all the info and make decisions based on my research. Hopefully she will be able to take in and decide based on your research.

Sharonca

 

[Icanmanz]

Hi allison! Sorry to hear about your mom's diagnosed. This disease sucks! We are seeing more and more new members every day. This is unbelievable! I will keep you and your mom in my prayers. You have done the right thing by joining this forum. It is very helpful. We are all like family, feel free! God bless!

Irma

 

[Vicki S]

Hi, Your mom might have bulbur onset. That's where it hits the throat first. Mine started in feet and ankles so seems like it isn't moving quick. You may have to give your mother softer food to eat to help the choking. You and your mother will be in my prayers-D:-.

Vicki

 

[brooksea]

allison,

use the search button at top of page to get results re: rilutek. Hope that helps answer your question.

 

[dukesnider]

allison, My wife was diagnosed with als in july 2007. Her progression has been so fast it is boggling the minds of the doctors and all that know her. In less than a year my wife is now in bed 24/7. She has lost the use of her legs, arms and hands. She can't speak or eat ( i feed her through a peg tube), she is constantly biting the inside of her mouth uncontrollably. Her new symptom is frontal temporal lobe dementia. I am losing her fast. There is no "path" or "norm" when it comes to ALS. All you can do is be there for your mom. Love and support her in anyway you can because before you know it, she won't be there. My suggestion, make scrapbooks, videos, take as many pictures as you can and spend as much time as you can. No matter what. My wife uses a speech device to talk. All she can do now is write o.k. on the screen. She doesn't know why she is writing it, but she is. Be there for your mom and remember take care of yourself too. Unfortunately, some people progress alot faster than others and there is no rhyme or reason. I wish you all the best and please remember, no matter what, be there for your mom. Dukesnider

 

[Al]

Sorry things are moving so fast for your wife Duke. My thoughts are with the both of you.
AL.

 

[lisamk]

I am not sure how to respond because everyone is different. My father is now in year 10 of this so obviously it is progressing slowly. His was a bulbar onset affecting his speech first. We tried everything early on. He did try the Rilutek and another drug (can't even remember what it was right now), but he had side effects and didn't feel any different, it was VERY expensive also. If I remember correctly, it only prolonged life for months, so he decided it was not worth it. I don't know if any others have had more positive effects from it. He also drank a Creatine shake each day for the first 5 years and pushed to stay as active as he was able. At the time, we had read some positive things about Creatine, however I haven't done any recent research. I don't know if it helped him maintain muscle strength or if his disease was just progressing slowly, but we figured it was worth a try.

The choking was a big issue early on. It wasn't so much that the disease was progressing fast, as him learning to chew different and much more carefully, but I know I sprouted more than a few grey hairs early on with choking incidents. Also once his limbs started to be affected, we have several bad falls, some requiring stitches, a few broken ribs so my point is that it seemed to be progressing fast at the time for us also because so many new things were happening, however, this has now all spanned over 10 years. I don't know if your mother is progressing fast (hopefully not) or if you are just experiencing all of the changes that come with living with this disease. Either way, I will keep you all in my prayers.