Recent content by FamilialALS?

What a great bit of insight. And so well expressed. After mom was gone and I was going through old pictures I rediscovered parts of my mom that I had forgotten about. She used to be the jokester at work. She loved taking bus trips with her work friends to Los Angeles to watch filming of tv...

Mr I'm sorry to welcome you here. As alienated from normal life as most of us feel with ALS part of our daily reality, this forum is a sanity saver for most all of us. There are members here that are or have been where you are. That was a tremendous help to me during the course of this disease...

I'm sorry Jenny. You are right, you will get through this and you will be stronger. A huge benefit to a short hospital stay is that it's nearly impossible to sleep in the hospital. Your brain requires lots of sleep to heal and home is a much better place for that than a hospital. I love that...

Miss that is a fair question. As everyone here has said it is just not realistically answered. My mom was bulbar onset. She was diagnosed October 14, 2014 after speech changes dating back one year. She was given the standard 3-5 years prognosis. At Christmas 2014 her decline appeared so rapid I...

Peace I'm so sorry for the sudden passing of your mom. She was so lucky to have such a caring, present daughter. Your battle to be there for your mom while maintaining a pace with normal life was so tough. I imagine she took great pride in seeing your accomplishments and of course took great...

Dave congratulations to you on your new endeavor. I think it's fair to say that we are all rooting for you. And Julie would want you to be living a full life- as all our PALS who have gone before us would.

Wow I too cannot believe it has been a year. I remember your pained posts in the months leading up and I remember the many emotions you posted about after. My mom transitioned to palliative care at the same time that Lonnie passed. Your posts help to prepare me for what was to come. My mom...

Jalynn I'm so sorry this is all happening so fast. Hopefully dad's acute symptoms will be controlled so his ALS symptoms can be be assessed and managed. We'll be here for whatever support you need.

Six days of symptoms. Two neuros telling you doesn't sound like ALS. An EMG already on schedule in two days. Honestly ALS is a bizarre concern to develop at that pace. And BTW you describe nothing that would justify concern of having any terminal condition.

I'm sorry about your dad's diagnosis Kristen. My mom was bulbar onset as well. This disease is so all consuming that being a support to your family is essential. I completely understand the sense of grief you are feeling right now and it is normal. I cried almost daily for the first three...

Peace you are doing great. The weight of responsibility is real and you continue to face it as it comes. I'm glad mom is improving. I hope you feel better soon. You will appreciate not having the persistent fear of her choking or starving.

Bruno, sorry to read of your wife's passing. I wish you peace in finding your new normal.

Sorry to welcome you here Erika. I was my mom's primary caregiver. Prior to symptoms she was fiercely independent. Mom had all the hallmarks of FTD. If you use the search function on this forum you can see some previous threads here that describe the behaviors and patterns and you may see some...

NM it is very clear by your lack of basic knowledge of the disease that you have not read the stickies at the top of this forum. Your questions are all addressed there. I have no idea how you so randomly landed on ALS as a concern for you. You are asking people dying or caring for someone with...

I knowALS really well, especially bulbar onset. There is just nothing in your list of issues that indicates ALS. I truly have no idea how you ended up with that as any kind of possibility. Not to say there isn't something wrong. But I would leave ALS out of the picture. If you continue to be...