Afraid

[A Daughters Love]

I have been reading this forum for a month now, and just couldn't wait any longer to join. My wonderful mother was diagnosed on Aug 19 ( that date is burned into my brain forever!) I am so afraid of what is going to happen to her. I know everyone progresses differently, but is there any hope that she won't lose all her mobility and voice. She use to work in a nursing home, and said she never wanted to end up like that. I am also starting to notice the expense( and I realize it will get much worse) of this disease, and it's only been a month. She has a cane, as her walking is a bit off , she just got fitted for a back brace yesterday, as her trunk muscles are very weak, we are also going on a family holiday and needed to rent a wheelchair. I am so heart broken I simple cannot begin to express. My mother is a huge part of our ( my husband and 2 small children ) everyday life, and the thought of this crushes me. Thank you for listening. I have read the ALS manual many, many times.

 

[Al]

Hi Michele. As you know many of us are affected differently. With your mom's problems already being in her trunk she might not exibit bulbar symptoms for quite a while yet. Some people never get bulbar symptoms. Some it takes quite a while to lose your mobility. I have been diagnosed 2 years and still walk and drive. I don't walk as far or as fast but I still manage. My breathing is crappy and I need a bipap to breathe at night but that is OK. I can still breathe sitting or standing.
How long has your mom had symptoms? This can be an important factor in how fast the progression is. Some are fast some are slow. Some of the people on this site have has ALS for 10 -12 years. Attitude plays a big part in our lives. Try to maintain a positive attitude and take each day as it comes. Sorry for your mom's condition. We are here for you but if you've been reading for a month you know that. Take care. Al.

 

[A Daughters Love]

Hi Al, Thank you for taking the time to reply to my posting. My Mom first noticed her symptoms last Dec. it started in her trunk, then went to her leg. She is also finding she has generalized weekness throughout her body. Can you please tell me where I can go to find a good site regarding feeding tubes and ventilation. My Mom has said she does not think she would want these. I just want to get her all the information I can, so she can be as comfortable with her decision as possible, what it would be like with or without them. I will respect and honor any decision she makes, as I cannot begin to imagine how hard it would be to make them. I will be her primary caregiver so it's up to me to find these things out for her. And as her daughter I want to do everything I can for her. I love her so much!
Again, thank you for listening!

 

[nic01]

Michelle,
I'm so sorry to hear about your mom. My mom was diagnose about 2 months ago but her symptoms started about 2 years ago. She's in a wheelcair now and can barely use her walker to go to the bathroom. This disease is expensive, but I would gladly give up all my inheritance to help her. She can still talk, breathe, and swallow ok. I know how painful this disease is, it hurts so much to see what she has to deal with. I love her and need her so much I don't know how I'll get by without her. But that is down the road. I hope you get the information you need, sorry but I don't know any websites, but surely someone will her.
Take care and God bless,
Jennifer

 

[Al]

Hi Michele. Here is a site about breathing with Bipap. It was a study done by a Dr. Bach. It may be more technical than you were looking for. I also have a site about trach's. It was put together by a mother for her young son but has information that relates to adults as well.

http://doctorbach.com/alsniv.htm
http://www.tracheostomy.com/
http://tpals.org/index.htm Turning points in ALS has some good information as well
Feeding tubes are covered here pretty well.
http://www.alsa-or.org/treatment/treatment.htm
Hope this doesn't overwhelm you. It is a lot to take in.
Take care. Al.