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missinmyangel
1 Recommendation

I lost my Aunt,47 ,on June 8th. I lost her physical being but have gained an Angel. I was a caregiver and AM a friend to anyone,afflicted by this horrible disease. Boh the diagnosed and their families. I am here to talk to,lean on,scream your head off to,cry and ask why to. I don't understand ALS, but I learned to live with it.I go through the gauntlet of emotions daily..still. I DO understand what you're going through and may be able to "help" you through it. It is the least I can do for her,help others cope. I am her for you all.

9 replies

Ladybug4869

Hi. My name is Melissa. I am a member of a family with FALS. This is the genetic ALS that gets passed through families. It does not skip generations. I have lost 7 family members through it. My cousin was just diagnosed. I myself have been tested and found out that I am positive for the SOD1 A4V gene. I am part of a study for "people at risk for ALS". Basically I am being studied until it kicks in and then I pass away from it. I'm angry at this disease. I'm angry at my test results. I have 3 children. My oldest son just left for Iraq 2 days ago to do his tour of duty there. He is 20. I have a daugther, who is 17 who is mentally and emotionally ill, I am trying hard to "save" her through therapy and medications. I have a 14 year old son who is my baby, my angel....he tries so hard to please us all the time...he is God sent most days. I have a husband, who refuses to speak to me about my test results and this disease. He is mad I got tested. Angry and non supportive about this issue. I feel alone. I feel lost. I am emotionally empty. I just wrote a letter to my brother last night complaining that I have nobody to talk to...I couldn't sleep, signed online and when I read your post I wanted to respond.

Thank you. Just for being able to listen...I want so desperately to be heard and yet don't know what to say. Everytime I have something I think is a "symptom", I then question if I really have it. They (the study team) says everybody develops ALS differently. The type in our family is extremely aggresive. Actually, it's the most aggressive type there is. Out of 100 different SOD1 mutations, the A4V is the MOST aggressive. I ask God "why"...why our family...why me? Knowing I am positive I am left knowing each one of my children have a 50/50 chance of developing this disease also. The guilt is overwhelming, yet I realize it's not my fault. Not my parents fault, not my grandparents fault. This disease robs everybody and I refuse to allow it to rob me of the one thing I need most...my freedom of speech. I will not be silenced because this "condition" as some people refer to it, makes other's uncomfortable to talk about. I need to be heard. My voice counts, it matters...but on days and weeks like this one, it seems only to matter to me.

I think about all the things I would like to do with my life. Have you ever watched that movie "The Bucket List"? It's a movie about two men who have cancer and they form a friendship. They make a "bucket" list. Things they want to do before they "kick the bucket". When I found out my results, I started making my list...I'd like to fly in a hot air balloon, I'd like to grow my hair out long, I'd like to get my house organized and cleaned so that my husband and children are not left with a mess of stuff to deal with, I would like to visit just 1 other country outside of the USA. I am not sure which country, but just to say I have gone somewhere else. I'm sure there's more to my list, but I haven't thought of it yet.

Well...thanks for listening. I really needed it. I just needed somebody who WANTED to listen and not somebody I start "verbally vomiting" on when I thought maybe they wanted to listen yet haven't offered. I always feel so guilty when I do that. Yet I don't feel that here, because you offered.

Thank you...

david-ds

I have two close friends with ALS. & I would like to know if you have any background experience in your family with bladder urgency? What if anything can treat the onset in RX?

Ladybug4869

I have not heard of my family members who have experienced bladder urgency. I am not sure how to answer your question. I am still new to all of this. Even with so many people having it in my family, it never really hit close to home until a few years ago when my father passed away. It was only then when I started investigating into his side of the family. I am sorry I can't be more helpful.

Smilef

Guys hang in there. I have a brother that passed away in Jan 2008. He lived in a bed for 11 years. It is a terrible disease but we are getting closer. I know that it is hard for the patients to hear but you are very special. I love to be there for you. Please email me if you would like to talk.
Smilef@aol.com

purplefry

Hi, I am new to the site and new to chatrooms. My Mother was diagnosed with ALS in March of this year. She is 63. It has been hard to say the least. She is alone and is in a very bad financial state. We just recently moved her into an independent/assisted living. I feel as thought it is just myself to take care of everything she needs and try to make sure it's all o.k. I have a family and 2 small children of my own that I feel are lacking my attention alot lately. My Mother doesn't seem to want to try and help herself at all. So far it has mainly affected her hands and arms. She needs more assisted but the money is not there. I am trying to work with her county to get her financial help. Any advice or pointers on this? I just wanted to talk to someone who can relate.
Thank you!

bkdaniels

A firm sense of determination filled my heart when I heard you ask, "...God "why"...why our family...why me?" And I assure you, God has thing to do with this. In fact, eariler in the book of Genesis He said, "...man is also flesh." So, it is not God that has failed, but the flesh that we are living in. If it was up to God, he would have a cure, prevention, and a successful treatment for ALS.

And eachday, He is touching the heart of the many researchers who work day in and day out to unrave the mystery of this disease. He is dealing with ambitious indivisuals, like me, and calling them to a duty of practicing medicine so that He can put a stop on this defect that is destroying His creation. Our only prayer is that a cure be found in time.

So, what is in it for you? It is because of stories like yours that make me want to practice medicine. It is because of stories like that makes me excited about my calling; study hard, make good grades, so that I can be a better Physician. And I know for sure, God is a God of Yesterday, Today, And The Future.

What I mean by that is: we don't have to wait until tomorrow for a a solution. I am the kind of person that believes that if you cannot be there for me when I need you, then why be there at all. Therefore, even as we speak, there are experts who are making new discoveries toward the solution to this genetic disaster. I an not sure If your Doctor has already qualified or disqualified you in or from one of these clinical trials, but you might want to have Him or Her take a lood at the and see if there is one that is right for you. You may also have Him or Her consder one for your family, such as the trial for the Validation of ALS Biomarkers. The more we learn, the more we find out how much we don't know.

Hope this lifts you up. And here is the link I promised to the clinical trials, hosted by the ALS Foundation. http://www.alsa.org/patient/drug.cfm

Ladybug4869

Thank you for this information. I clicked on your link and then contacted the closest representative in Missouri.

I will keep you updated.

newlydiagnosed

i have a catheter but get bladder spasms [not sure if this is same as urgency]. i take belladonna-opium suppositories.

newlydiagnosed

i have a catheter but get bladder spasms [not sure if this is same as urgency]. i take belladonna-opium suppositories.

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