My hero, my daddy was diagnosed with ALS three days ago. My parents have suspected it for over a month, they were just told the news. Mom called and told my husband first while I was at work so he could be there for me when she told me.
The doctors think he has had it about a year.
I hate the statistics I have been reading.
I don't know what to do, what steps to take, who to call. I feel like we need to prepare for the future but I don't know how to deal with this news.
What should my sister and I do to start?
Hi, and welcome to ALS Forums.
Although, I am deeply sorry about your Dad's diagnosis, I am glad you came across this site.
There are very good and helpful people on this board who are willing to assist you in these difficult times and to provide help and support.
Just remember, diagnosis is just one step on this "journey". By any means it's the end of it. Forget about "statistics", they are just that...numbers.
There is life still even after being diagnosed.
The secret is to take one day at a time and try to live each day to the fullest.
Another thing, you have to stay "ahead of the game" (so to speak). I say this because ALS is unpredictable. You do not know how fast or...how slow it's going to progress so you've to definitely plan ahead of time.
I do not know your Dad's status at the moment. Don't know if ALS started on his Limbs (arms, hands, legs, feet) or Bulbar region (speech, swallowing, saliva) but I would advice you getting in touch as soon as you can with your Local Chapter of the ALS Association (ALSA) and explain them your Dad's situation and diagnosis.
They will send a representative to your Dad's home to make an assessment of your Dad's needs in regards to equipment to help him with mobility such as canes, walkers, wheelchairs, bedside commode, shower chairs, Lifts, etc. They will gladly loan these materials from their Loaner Closet to your Dad to use as long as he need them.
Another thing, try not to miss any of his appointments at the ALS Clinic. They have a team of professionals who can assess the needs of your Dad in regards to Physical Therapy, Occupational Therapy, Speech Therapy, and they also can prescribe drugs to help manage sleep, pain, anxiety, excess salivation, etc.
They can also enroll him on drug trials if he is eligible.
Just try to keep his weight. He shouldn't lose any weight with this disease because it can speed up the progression.
Lastly, hug him, kiss him, tell him you love him deeply and tell him he is NOT alone, he has you by his side in the good times and in the bad ones.
And don't forget you and your sister are not alone either. You have this wonderful board filled with wonderful people always willing to help, give advice and to comfort you.
Take care.