what a process

[tabney]

:? I am basically looking for someone to listen. This is a horrible way to live your life. In fear of every twitching muscle because you know the muscle is slowly dying. The twitching is just a reminder. I am in the final process of diagnosis. You know the one, where your neurologist is seeking any other answer but the obvious one. No one wants to hear ALS. It could be one of those words whispered like c a n c e r. I had hope that I would be diagnosed with PLS. What a thing to be hopeful of, but better than its big brother, so hope none the less. PLS does not involve the lower motor neuron and I have lower involvement. There goes that hope. I am not upset but frustrated. Such a long process to reach a diagnosis. Exhaustion is already a part of this disease and then you have to go through an exhaustive battery of test to find out why you are always so exhausted. Quite tiring I must say.....:mrgreen:

Want to know my biggest fear.....my Mother. The way this disease will affect my Mother.
She took such wonderful care of my Father during his battle with (whisper) cancer. In the latter stages of his illness, he was totally dependent upon her. Feeding, bathing, and bodily functions. I am in fear of the bodily functions. I would rather die than have my Mother have to deal with changing a diaper I am wearing because I can no longer
go to the restroom. Don't get me wrong, she would never say a word. She would climb mountains and walk miles if it would help/benefit one of her children. I am the one who
is unable to deal with that possibility/inevitable likelihood.

I just want to cry.....

 

[quadbliss]

Hi tabney,

I have been living with ALS for 8 years. I have found that every step of my progression that I have imagined and worried about prior to its actual occurrence, has turned out to be much easier than I expected. For this reason, I gave up worrying long ago. As far as the bathroom thing, I think that comes down to dignity. I need help to go to the bathroom, and can't speak. In spite of this, I have not lost one ounce of my dignity. No one can take that away from you. You have to surrender it. It is all about the energy you project.

Mike

 

[mlb]

Oh Tabney I am so sorry. Please don't fret. At least wait until the diagnosis? I know it is easier said than done but do try? I will keep you in my thoughts and include you in my daily prayers.

xxoo
Anna

 

[SoniaT]

Hi tabney,

I just read your post and it broke my heart. I looked after my mom for 2 years and helped her with everything. I believe she didn't lose any of her dignity. I think if your mom is the person who will be aiding you she will make you feel comfortable with whatever you need. It sounds like you have a great mom and I can only imagine how difficult this is for the both of you.

I believe actions and help of any kind done with love will make things easier.

Hugs for you,

SoniaT
British Columbia,

 

[Al]

Hi tabney. Welcome to the forum but sorry you have to be here. Funny thing about mothers. They love unconditionally and would do anything for their kids. We see it here everyday. I am sure your mom is not worried about looking after you and if you get her the knowledge of where to get help before you need it she will do just fine.
As for the frustration of the diagnosis: you know it isn't going to be good one way or the other so put it past you and try to get on with living. You can be living with this disease or be dying with it. It's your choice. Living with it isn't easy but it does beat the alternatives. Good luck and if we can help just ask. AL.

 

[liz]

Tabney -

Since I've been diagnosed my mom's biggest upset is that she doesn't live close enough to help out. And I know I would do anything I could for one of my kids if they were in need no matter how old. Hopefully you are or will be connected with and ALS Center and the MDA which will offer you and your mom the resources that you'll need to manage as time goes on.

I share your concern about needing assistance with basic bodily functions. Somewhere on this forum recently was a posting about something called a Toto Washlet that made me feel a little better about this. I guess too, like Mike says, you get used to it and your attitude toward the situation makes all the difference.

Nice to meet you.

Liz

 

[John1]

...Somewhere on this forum recently was a posting about something called a Toto Washlet that made me feel a little better about this...Liz

https://www.alsforums.com/forum/showthread.php?t=1655&highlight=toto

 

[tabney]

thanks to all replies

Thanks to all of you who replied. I am not depressed about my situation. That does no good. I just needed a place to voice fears and concerns. I see the worry and stress on my families faces so I don't want to add to their anxiety. As most of you know, we have emotionally strong days as well as our weaker moments.

 

[quadbliss]

Hi tabney,

I have noticed that most (although not all) of my family and friends tend to mirror the energy that I put off. I would say my facial expressions, but there is not much there anymore. In the beginning when I was unsure, people did not know how to act, and were visably uncomfortable. Now that I am normally upbeat and enjoying life. Most people act much more positive. I don't think you can rush or force this process. I think it has to occur naturally.

Mike