My mom has ALS

[B's Mommy]

Hello, I am new to this forum and my mom has ALS. My mom has lived with me for 6 years and early last year (2011) she began slurring and having trouble going up steps and falling down. We waited awhile until we went to the doctor because I am a single mother in the military with a 2 year old daughter so my schedule was so hectic we just never got around to it. We finally were able to get her into a doctor for what we thought were several "unrelated" issues and they made a clinical diagnosis of ALS. She was referred to a neorologist and they ran all their tests and we just knew. Initially I carried a lot of guilt for not getting her into a doctor earlier until we agreed that we would not have wanted to know even a day earlier. I'm sure many of you can understand that feeling. That was last August and by December she could no longer walk. She is in a wheelchair now and is rapidly losing her speech and having trouble walking and eating. We were both so devastated by the news and the first few months were mental torture for the both of us. The whole diagnosis was just numbing and then I was deployed for 8 months this year so I had to leave and will be returning home shortly to a lot of unknowns. My brother's wife sacrificed a lot and moved down to help care for both my daughter and our mom during this deployment but when I return it will be just me, my mom, and my daughter. We have chosen to focus on all the things we will do upon my return and to be thankful for the time we have left together but at the same time it is so difficult for all of us. I plan to introduce her to the forum when I return but she has never used a computer and has bad onset with her hands so I will have to research that further. Anyways, I just wanted to introduce myself because my heart is feeling heavy tonight. I just want to be able to bring some happiness into our lives when I return while also having to deal with ALS. Does anyone have any recommendations for my mom in way of support? If you have ALS, did you attend and benefit from any support groups or do you think that would be upsetting.

 

[Ms. Pie]

Yes, first please don't feel guilty. An early diagnosis wouldn't change anything. Contact her local ALS Association and they can help you a lot. Get pro cedures and equipment before you need them like feeding tube, electric wheelchair, etc. Also, her ALS savvy Neurologist can make recommendations to other doctors she might need. Educate yourself in regard to ALS because I've found that health care people typically don't know too much about it and you'll have to educate them. Let us know if you have any questions. We're always here.

 

[B's Mommy]

Thank you for responding. She has an excellent Neurologist that she thinks the world of and the ALS association has and continues to support us in every way. Between her doctor and the association they have set up everything she has needed from the very beginning to include a walkthrough of the the house with recommendations to ensuring we received the required medical equipment (wheelchair, hospital bed) and even transportation to her appointments. We have both been amazed at the support that has been offered and provided for my mom so we seem to have things in order from that end which is a major relief. Now we are trying to focus on improving her quality of life, but that seems to be the difficult part because I know she feels like a burden sometimes because simply going somewhere can be difficult and going out to eat no longer interests her because sometimes she chokes and has a hard time eating. I just don't want her to feel like a prisoner at home. I wish I knew how I could help her.