Mother with ALS

[AngelaRenee]

This is my second time writing to you all. My mother recently had an appointment with a neurologist at UK in Kentucky. He told us her progression seems to be slower than normal, and he did not want to diagnose her with ALS just yet. He told us to get in touch with the family and see if any other member had any similar issues with neurological diseases. We found nothing besides my great grandmother who has Parkinson’s (rumored). My mom's side of the family has some issues and does not get along with us well but we are trying to reach out. Today is a sad day because along with the weakness in her legs and hands, she cannot raise one of her arms. She is still working, which is helping her emotionally. The neurologist prescribed her something to help with her stiff joints, but I think she was led to believe it could help her to use her hand. I am one of her two daughters and am 22 years old. This is all so hard for me, I cannot stop crying. It is all happening in a matter of months. I believe it has been about 5 to my knowledge. Another one of her symptoms I have seen is that on her way to the neurologist she was drinking and began laughing uncontrollably out of nowhere. It scared me. I am having a hard time dealing with all of this. I pictured taking care of my parents until they grew elderly, them both being at my wedding and having grandchildren. I can only ask why?

 

[Katie C]

Angela.. so sorry this is happening to you. There is a reason ALS is referred to as a "family disease." It effects everyone! The laughing you witnessed is a relatively common symptom. Mention it to the neurologist and he can prescribe something to help it.

I'd suggest a couple of things right now: If you're going to be mom's primary caregiver get a notebook that's divided into sections. One section is going to be important phone numbers... doctors, physical therapist, clinics, attorney, etc. The next I used as a medication list so that I always had a written record of what Glen was taking, including supplements, what doses, etc. The third section is the most important... any questions that come up, any new symptoms or behaviors you notice, any unexpected reactions to medications. Take the notebook with you to appointments and you'll always have your questions right there, you don't have to try to remember everything!

Secondly... if you haven't already you and mom need to make an appointment with an estate attorney. If you don't know of one, your closest ALSA probably has someone they can recommend. Make sure you discuss healthcare directives with the attorney as well as estate issues. This is also an easier way to bring up some of the tough questions with your mom... peg, breathing, dnr, etc. It's somehow different when the attorney brings it up as "just in case" matters.

 

[Miss]

I am so sorry about your mother's possible ALS diagnosis. The members of this forum will always be here as a sounding board with a word of encouragement, advice, whatever you need.

 

[Jennifer D]

Oh my god, your post brought tears to my eyes......All I could think about is how unfair ALS is to everyone! You are so young to be going thru such a terrible time with your mom. My husband has ALS also and we have four children (1 - 19year old and 15 year old triplets). I wish I could make this disease go away for all of us.......

Please know that I am thinking about you, your mom and your family and I will keep you in my prayers. Don't let this awful disease ruin your precious time with your Mom, take it one day at a time. Sadly it's all any of us could do.
Jennifer

 

[Frank86]

I am so sorry you and your mom are going through such a scary time. I remember when my grandmother began to show symptoms. My mom was scared but she stayed by her mom every step of the way. My mom was there to support her mom and I was there to support my mom. Love and support from family will help. Remember, sometimes crying is a good thing. Don't be afraid to cry. Let it out.
Please know that I am keeping you and your mom in my thoughts.
Frank

 

[ltbeauti]

So sorry to hear about your Mom. It is a horrible cruel disease. I just try to live one day at a time and adjust with the changing symptoms. I have had slow progression.

I used to laugh and cry at innappropriate times when things were not that funny or sad. I was diagnosed with pba. It happens to some people who have neurological problems. If it becomes a problem for her there is a FDA approved medicine for pseudobulbar affect (pba).

You sound like a wonderful loving daughter.