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herbi
07-01-2003, 10:45 PM
Hey everyone.
Tonight I got some horrible news. My Mom has been suffering from some kind of neurological deficit for almost a year, and went to a neurologist twice last year without getting a definitive diagnosis. They tentatively went with "stroke," but it never seemed quite right? Anyway, today she went back to the doctor and upon seeing how much her condition had deteriorated and doing a few more tests, they are almost certain now that she has ALS. (aka "Lou Gehrig's Disease, aka what Stephen Hawking has.) I didn't know very much about the disease at all, but a very small amount of time on the internet has shown me that it is incurable, progressive, and fatal. Less than 50% of patients survive longer than 18 months post-diagnosis, and the kind my Mom has (speech and swallowing abilities going downhill fast while limb control remains intact-- she can still walk, write, etc...) is the most rapidly progressing kind. :cry: :bawling: :cry:
Obviously I am (and the rest of my family is) still reeling from this news. It hardly seems real! My Mom is only 52, and it has been so difficult to watch her lose most of her ability to communicate but that is NOTHING compared to the thought that she might not even be here much longer. I don't even know what to do. :(
I am posting this for a couple reasons: 1) if any of you have experience with therapies that help ALS patients, please let me know, 2) I am going to try to go home for a visit, so if you don't see me on the boards or if I don't reply to a PM/email, this is why I'm gone, and 3) it would mean a lot to me to know that my Mom has healing thoughts and blessings coming to her from such awesome people all over the world. She could really use them, as this whole process has her (understandably) so depressed as to make her virtually unrecognizable as the intelligent creative silly outgoing amazing woman she is. Her name is Pat, and she's the one who taught me how to read and who instilled a strong sense of compassion in me from as early as I can remember, and she always supported my veg*nism even when the rest of the family didn't, and she showed me how to do a million little things, and I can't imagine her not always being there. :cry:
Anyway, thanks for "listening." :(

misanthropy
07-02-2003, 12:03 AM
I'm sorry. :(

I used to know a nurse that worked directly with ALS patients in a private facility, but unfortunately I haven't spoken to him in years.

*hugs*

heycoleen
07-02-2003, 12:05 AM
Herbi,

My thoughts/blessings go out to you, your mom, and your entire family. I'm very sorry that you all are going through this. You are lucky to have such a loving, supportive mom who has taught you so much. Your mom is lucky to have you.
{{{{{{{{{{{Herbi}}}}}}}}}}}

Sincerely,
Coleen

Dandelion
07-02-2003, 12:29 AM
I'm so sorry to hear that Herbi. It's unimaginable to me what you and your family must be going through. My parents are older yet i think of them being in my life for many many more years.
Your mom will be in my thoughts and i'll send much love.
:heart: :heart: :heart: :heart:
(new smiley added for just such an occasion)

jenbizagogo
07-02-2003, 12:33 AM
Herbi , I am so so so so sorry to hear about your mom. I am sending her (and you) all the warm fuzzies and good positive vibes I have in me. She sounds like such a wonderful woman, and I wouldn't expect anything less from the person who raised such an amazing daughter.

I wish I could share some wisdoms with you about ALS, but what I know about it is very limited. I was however, talking with some people about it at the AR2003 conference this weekend...in regards to natural treatment/therapies. Here are a couple of links I have since found. You can browse them if you like:

http://www.itmonline.org/arts/als.htm

http://www.drlera.com/amyotrophic_lateral_sclerosis.htm

Sorry I can't be of much more help.

Please know I'll be thinking of you and your family....

Beanqueen
07-02-2003, 02:48 AM
I'm so sorry, I can't think of anything remotely helpful to suggest but I'll be sending good strong thoughts to you and your mom.

VeganKen
07-02-2003, 07:37 AM
Herbi -

I am terribly sorry to hear that your family is going through this. You may already know about this site (http://www.alsa.org/) - the information looks extensive.

(((((sending positive vibes and peaceful thoughts)))))

:heart: :heart: :heart: :heart:

sheila
07-02-2003, 11:24 AM
Oh Herbi, that is so awful, I will be thinking good thoughts for you and your mom. I hope the doctors are wrong and she gets better fast.

Best Wishes
Sheila

Vegit-8
07-02-2003, 12:14 PM
Herbi, I am very sorry to hear about your mother, and of course for how you and your family must be feeling.
I will email you some information either later today or on Thursday.

May peace and joy be with you and all who you love.
Vegit-8

herbi
07-02-2003, 03:05 PM
Thank you all! I know it is strange, considering we've never actually met and you've never even met my Mom (and she's never even heard of you!), but it actually does make me feel better in a way to imagine little positive thought-rays shooting towards her from all of you. Just imagining how powerful this globe-encircling network of outspoken loving compassionate individuals is-- well, that it even exists is astonishing to think about, and it makes me hopeful. And it definitely means a lot to me to get your electronic hugs... I'm not sure why it works, but it does, and I'm grateful.
:heart:
PS- I'm still not processing things very efficiently, but thanks also for the links-- every bit of knowledge helps, I believe.

Spaceman
07-03-2003, 06:31 AM
Herbi, good vibes and thoughts are going out to your mother, yourself and your family.

- Jason

jenbizagogo
07-07-2003, 12:44 PM
Hey Herbi,

I hope you and your family are well. Still thinkin' aboutcha and sending fuzzy vibes!

I saw this on yahoo news today:

http://story.news.yahoo.com/news?tmpl=story&cid=571&ncid=751&e=2&u=/nm/20030707/hl_nm/als_gene_dc

its_a_gas
07-07-2003, 01:00 PM
Hi Herbi.

I just saw your post now. I'm sooooo sorry to hear about your mother. I wish I had some information to offer, but I really don't know much about the disease. I'm sending lots of warm fuzzies to you and you mom. I can't imagine what this must be like.


:heart: :heart: :heart: :heart: :heart:

jenzie
07-07-2003, 02:10 PM
Sending tons of positive, warm vibes! You, your Mom, and your entire family are in my thoughts. *hugs* :heart:

herbi
07-07-2003, 03:07 PM
Thanks all. :umm:
And thanks for the link, Jen. I am very conflicted about feeling hopeful over some findings acheived by deliberately breeding genetically f'd-up mice and experimenting on them, but... I'm not going to pretend I didn't read that or not look into it if it may help her, so there goes my anti-vivisectionism I guess. :( I still don't support it obviously, but... bleah. Just one of the many things about the entire situation that is HORRIBLE.
Anyway, I do appreciate the warm wishes. They mean a lot to me. You guys are awesome.

Emiloid
07-23-2003, 08:23 PM
Herbi, I'm really sorry. Best of luck to you and your mom. I can only imaginge how painful and frightening this must be. At any rate, we're here for you... day or night there's likely to be someone online.

herbi
07-23-2003, 08:25 PM
Originally posted by Emiloid
we're here for you... day or night there's likely to be someone online.

Thanks, I know! Lately I've been taking advantage of VRF as a "break" from the reality of my situation, so if my posts seem inappropriately cheery, well, that's why... you guys are my escape. :umm:

Dandelion
07-23-2003, 09:17 PM
someone needs IM on her fancy new puter for an anytime virtual HUG.
i was living off those for a while...
( thanks muds :kiss: )

jenbizagogo
07-24-2003, 12:22 AM
meleth ar laug nauth an Herbi...

that means "love and warm thoughts for Herbi"....in my probably totally erroneous elvish translation...

...thinking of ya... :)

Dandelion
07-24-2003, 01:10 AM
:rolleyes:


Originally posted by jenbizagogo
meleth ar laug nauth an Herbi...

that means "love and warm thoughts for Herbi"....in my probably totally erroneous elvish translation...

...thinking of ya... :)

madpogue
07-24-2003, 09:41 AM
Originally posted by jenbizagogo
meleth ar laug nauth an Herbi...

that means "love and warm thoughts for Herbi"....in my probably totally erroneous elvish translation...

...thinking of ya... :) Maybe this guy (http://www.theonion.com/onion3913/dont_come_crying.html) can help.

herbi
07-24-2003, 02:59 PM
Jenbiz: awww, thanks! :)
Dandelion: shhh, you!
Madpogue: LOL! :)

cin
07-26-2003, 10:00 PM
From "Heal Your Body" by Louise L. Hay - the mental causes for physical illness and the metaphysical way to overcome them:

Disease: Amyotrophic Lateral Sclerosis (Lou Gehrig's Disease)

Mental Cause: Unwillingness to accept self-worth. Denial of success.

Metaphysical Cure/Mantra: I know I am worthwhile. It is safe for me to succeed. Life loves me.


I don't know if you're into that kind-of thing, but its worth a shot. Maybe you could contact her personally and she could help, who knows.

I'm really sorry about your mom.

All hope is never lost :)

ajveg
07-27-2003, 10:04 AM
oh i cant say anything to make you all feel better. i am not in a similar situation but my step grandfather found out he has cancer and he is too weak to undergo chemo so its waiting it out. its horrid but know we are all be hind you and we are all sending love and all the good vibes we can:heart: