ALS

[summernfoster]

My head feels cluttered. This is my first time to this site...or any site for that matter that has to do with als. I have been avoiding reading on line, in books and even talking about als because i am scared. Almost two years ago my nana (grandma) was told she may have als ..One dr would say she does, another would say she didn't, it may just be " drop foot syndrome"..and so on. It was a never ending cycle..and finally after about 5 different doctors and going to usc and other top hosptials 3 dr's said she did, and 2 said she didnt. Our family came to accept that she does. The symptoms are there...and before our eyes she was getting worse. In a matter of days, weeks and months she wasnt able to do anything that she used to. Walking and talking arent as easy as they used to be.l Using her hands, or picking up her feet are somthing that she is limited to.My heart is breaking in a million pieces and i feel like i cant take it. I know i need to be strong for her..and myself. Never in my life did i think that my nana was going to have to deal with anything like this... she has unfairly been stripped of her independence her life and her happiness. At first it was so hard to be around her after we found out. I would avoid my grandparents house like a plague. And thats not normal..my grandparents raised my brothers and sister for a majority of our life . Im 23 years old now. when i was five we started to live with them. I have been able to come to my grandparents house when ever i needed a place to stay. When i moved home from san diego they welcomed me with open arms. Anytime anyone of my siblings needed a place to stay or live they would never turn us down. We are a very close family...she is not only my grandma, but my mom as well. She helped my mom make me into the person i am today. I am greatful for her love, support and input... i cant imagine losing her to something so horrible.

im writing this because lately i havent been able to hide from this situation. I have had to deal with it head on. I have been the person who has been taking her to her many doctors appointments, accupuncture, physcial therapy and so on. I am the person who is taking her walker in and out of the car everytime we go somewhere. Not only have i been going to dr's appt, i have also been helping aorund the house, grocery shopping and so on. THe things i do around the house dont seem to effect me as bad as when i take to her appointments. My mom and everyone helps too... we are all trying to do whatever we can to make her life easy on herself. But as far as the dr appts go, its me or my pops (grandpa) I'm not complaining about what i have been doing, i love her so i would do it anyways. But i cant help but feel sad and depressed.

I feel like she doesnt deserve this. She has worked so hard in her life...and did so much for me and my siblings and now when she is supposed to be retired and enjoying her life she cant. She is sick, cant walk, speech is slurred. tHIS IS not the way i pictured retirerment for her. She deserves so much more. I just need someone to talk to about this... i feel so sad.. This is my first time in my life that i have to experience a life taking illness. I am seeing the destruction with my own eyes, i fear for my grandma that she is going to be in so much pain. I hate this, i hate the illness... i cant do anything about it except accept it. Its a process..and i just need someone to talk to.. thanks for listening. I am ssure this sounds jumbled...but i am finally letting out some of these thoughts that have been in my mind... thanks :o)

[imsunshine]

Hi,
I'm so sorry to hear about your grandmother. My heart goes out to anyone with ALS. It such a horrific disease. It certainly changes the life of it's victims and the families. It can be very depressing and humilating when we lose our independence and find ourselves asking our families to do everything for us even wiping our nose.
Your grandmother is the same wonderful, loving person she was before she got this terrible disease and became trapped in a useless body. This Thing alters our body but not our heart or mind. Please Don't shun her because she can't talk so good or can't get around. Treat her like you always did. Talk to her, have fun taking her to doctors appointments, include her in family gatherings. I'm sure she feels like she is a burden. Take day one at time. Look to God for comfort He is our only hope.
I've had ALS for 31 years. I'm paralized from my neck down and have been on a ventilator 21 years. I have 3 children, 4 beautiful granddaughters and 1 great grandson. I couldn't hold my grandchildren or play with them. Some of my children and grandchildren have very little to do with me. They never spend time with or talk to me because I can't talk and they can't read lips. That hurts me more than the ALS hurts me.