Keep hoping this is a bad dream:( mom recently diagnosed

[Mandyintn123]

HI, I am Mandy, I have been looking around for a few weeks. My mom (age 58) was diagnosed officially a on March 4th. I dont think i have ever felt more alone... She has bulbar onset which we initially thought may have been a stroke related to the stress of losing my grandmother (that she cared for for 14 years) in October. I got in touch immediately with the ALS coordinator here in our area and found out that a neurologist here was starting the first ever ALS clinic in Chattanooga. My mom got to be the first patient of that clinic which made me feel 1000 things.. like are they experienced enough to know what they are doing, should we be going somewhere like emory or vanderbuilt. would it really make a difference ? My sister and i attended a support group last month . I am hopeful my parents will go to the next one. If there is anything about this that i have learned is that life isnt fair.. I have been thru the entire range of emotions to the point of a almost nervous breakdown. Took a few days off and got myself together. Now I think I am ready to deal with this..... mom also has the dementia associated with this so she basically refuses to read up on the disease and i cant decide if that is a blessing or a curse. She is down to 108 lbs from 154 in October so we are set for a peg tube on april 6th .. (more questions, more concerns, ) And like most children with parents diagnosed i wonder if i will get it as well.... sorry this was a rambling hello.. but i am glad i found this site and all of you that seem so knowledgeable and upbeat.. most days you all have been my saving grace as i lurked in the shadows...

 

[Atsugi]

Welcome to our group, Mandy. I'm sad you need to be here, but glad you and your sister can support your mother.

I wouldn't worry yet about the newness of the ALS clinic. I routinely suggest getting a second opinion, in any case of a terminal disease.

Don't worry about getting it yourself. One person in the family does not make a "history" really. Of course, it's possible, but not probable enough to worry about.

Take time off. You need to keep yourself together. Remember, your mom is an adult and she is the mom, so she would prefer your life be as little impacted by this as possible.

She might not want to focus on the disease. After all, it's going to progress at it's own pace and there is no cure, so perhaps your mom has decided to take it as it comes. Let her. It's her life, let her decide what to do about it.

 

[Nikki J]

Very sorry about your mom but welcome
Lots of experience here as you know including with FTD
You will get a feel for the clinic. As long as key people are ALS experienced it should be fine
The feeding tube sounds much needed hopefully she can regain some weight.
Please remember that if your mom is your only relative with this your chances of getting this are the same as the general population

 

[affected]

So sorry to welcome you Mandy.

My husband was bulbar onset with the frontotemporal degeneration too. There is support here that can make all the difference in the world!

 

[Janie H]

Welcome Mandy,
you will find a lot of friends here.

Janie

 

[patrick123]

We are your friends lean on use vent a little ask question knowledge is self empowering. The more you know the more you can help
Patrick

 

[Will4]

Hi Mandy, my mom was diagnosed in January, so I know how you feel and am so sorry for you going thru this as well. Like you, I've run through the full range of emotions. For me, it comes down to enjoying whatever time might be left and making it about quality. I also worry about the, "Will I get it" and worry about passing it on as well. But as Nikki said above, if its the first case in your family the odds are in your favor.

Will

 

[MaxEidswick]

sorry to see you here Mandy.

>I routinely suggest getting a second opinion

Ditto that!

very important to see an ALS neuro ...

kind regards,''

Max - Sunday, March 29, 2015 11:53:27 AM

ALS sucks, but It Is What It Is ... and someone else has it worse so I'll try not to complain today!
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013


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[Mandyintn123]

Thank you all for your warm welcome. ( sorry I didnt clarify in the initial post that was all over the place) we have seen 3 neuros and they all three confirmed the diagnosis, especially after the emg... i guess we are fortunate in a way that we have the new als clinic here in Chattanooga so my parents do not have to travel so far . the other ones obviously are more established but are each 3 hours away. The newness of the clinic just makes me wonder if we are doing all we can do for her?