Familial, ALS

[lisavautour]

My mother has just been diagnosed with ALS, 5 weeks ago, and has already lost the use of her arm and hand, she is only 53, her first cousin, died at the age of 56 from ALS, then her daughter at age 31 from ALS, and then her son at age 44 from ALS, we r not sure of any other family members, as my mom only knew this one family member, as her dad died when she was only little, and his family had nothing to do with them....so as you can probly guess i am 36 and just terrified, obssessed and confused, i cannot seem to find any straight answers about if i should be tested , if it will give me any answers etc, if i knew i could find a straight answer, i would like to know, especially since my family members were all so young, any advise would be greatly appreciated.


thank you
Lisa

 

[Marjorie R. Wilcox]

The Future

Lisa, my heart goes out to you. You know, we never know what the future will bring.... even what a day may bring forth. I am 60 and have learned that nothing is secure.. nothing is a sure thing. I have lost almost everyone I love because I divorced their dad for abuse (and I am not a liar.) I happily remarried and he was in an explosion that took 6 surgeries to save his leg... and it still isn't right. And he was diagnosed a year ago with ALS. Things would be easier if I was allowed to see my 16 grandchildren. I can see 3............ I say all that to say this...... No matter what is going on, it is your attitude and reaction to it all, that will make you or break you. You can sorrow and worry and cry, or you can make the best of it. Life is a treasured gift to use our freedom to do whatever we choose. Choose to be happy in the moment. Reach for your goals and preceed with them no matter what gloom and doom may come. Your family history doesn't sound good, but don't react to it when you don't even have it yet..... and may not get it. Don't waste time worrying. Worrying never adds a day to your life.... just makes it miserable. Choose to be happy. Enjoy every day you are given. And if ALS comes in your future.... just go on doing the exact same. Make the most of what you still can do.... all along the way. I believe we have a future beyond this life with no tears, sorrows or worries. Everything will be settled and there will be no disputes. I wish I could give you a hug. Just remember to come here to the forum if you need us someday. You don't need us now. Marjorie

 

[Marjorie R. Wilcox]

P.s>

Lisa, I should have said that you do need the forum in dealing with your mother's needs. I hope we can help you as time goes by with caring for her.

 

[CindyM]

Welcome to the forum, Lisa, although I am sorry to hear about your Mom. Marjorie is right- this is a great place for information. Almost any topic related to ALS has been discussed - try a search from the tab at the top of this screen to see what I mean.

There are some great folks around here. You will get lots of support! Cindy

 

[jcarnahan]

Welcome, our family is also a FALS family, however it is on my husbands side. I have a post in this section asking for info. My husband decided not to get tested as he felt that knowing would actually be worse for him then just letting life play out. Lately I have been having alot of fears, as I feel like I keep seeing symptoms. But honestly I do not know if they are there, or I am just looking too hard. We also had two beauiful children before the reality of this disease was fully known to us, and I am terrified for them. My only advise would be to live the best life possible, be an example of "life" to others, and if you do get sick you will have a great legacy, if you do not, then you will have enjoyed your life fully.