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kmendsley

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Well, I had a dr. appt. on Tue after I had some very nice members tell me I should get that 3rd opinion and just forget the insurance part...otherwise I wouldn't have been able to get in so quick! :) At 23 years old, almost 24...my b-day is in 2 weeks....I have been diagnosed by a 3rd dr. as having ALS.

In some sorts...I have peace of mind...because now I know rather than wondering with the one diagnoses as yes, and one with a no diagnoses...I have a 3rd yes to break the tie...sort to speak. My stats are not great. Unfortunately, for the past 6 months my docs and I have lived in a world of denial that things were progressively getting worse. I can still walk around with some wobbliness, quite a bit of shaking as of late, voice going away(which is quite unfortunate for me..as that has been my job/my life...I am a choir director and music instructor for adults and kids. ) Fine motor skills rapidly detoriating...I also am certified in sign language and finger spelling is no longer possible. And the worst of it is my breathing. My average is 85 percent oxygen saturation...not great by any means....esp. for a singer!;-)

Emotions: sad, angry, denial, frustrated, bargaining, acceptance...it is possible to have all at once...or at least in quick succession of one another...many times a day. Unfortunately I do not have family support., they deal with things by pretending they don't exist....so not much there. I ask humbly from this community that I may find any bit of support, small, big, whatever to help me continue on this journey...until God calls me Home.
 
Dear kmendsley,
I am so sorruy to hreaer of your diagnosis. Yuo have come to the rihgt place. Feel free to ask questioms and vent. There are a lot of wise opeople here to help yuo.
Kimnberly
 
Dear KM,
We are here for you.To answer questions,suport,listen and pray for you.
It would be good to get seen at an ALS center ,some of which are suported by an MDA
grant.You would be seen by the whole team of ALS knowledgible.PT,OT.neuro MD and nurses,
socialworkers and resp therapiist and more. They have loaner closets for equipment needs
and most importantly can anticipate your needs. CALL your MDA/ALS or AlSA soon for more info.
blessings, Pat
 
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Well, shucks! This just really stinks! That being said, I hope your family gets on the ball and starts getting the education they need to be the support you really need from them.
 
Dear KM,
So very sorry for you to be here, but you've come to the right place. This forum is amazing! It's filled with a group of friendly, helpful and supportive people. The rush of crazy emotions is normal - I too questioned it and found in here that I wasn't losing my mind! Welcome!
 
I am so sorry you are here with us but some things are out of our control. If I was you I would call the Social Security office and sign up on my disability. Medicare will start almost immediately and they will also back pay any bills(80%) you incurred during your process of being diagnosed. They did mine and I had insurance at work. They will also pay the rent on things you might need (Wheelchair, porty potty or bed) after 13 months its yours. They will even help with getting you a computer to fit your needs(80%).
 
So sorry that you have had to find the forum. It's loving and supportive. Ask any questions and I am sure some knowledgable folks will help
 
So so sorry for your diagnosed, I was diagnosed in nov 2010 and yes your emotions will run al over the place, and still do. But you have come to the right place for encouragement and to people with a wealth of knowledge about this beast. The folks here are so supportive, loving and truly caring. Feel free to vent when you need too we have all been there and it does get better mentally/emotionaly anyway. Ask all the questions you need to gain peace of mind. You are in my prayers!
 
So sorry to hear your news; It's like a punch in the balls, gut and head all at the same time and it seems all is lost and the dull lingering pain just won't reside, but all isn't lost and with a good attitude and an intune support network (which by the sounds of it you might need to work on getting them in the program) you can still find ALOT of joy in life. Especially at your age the irony is that you have alot of advantages, the best advice I can offer at this point is find out what resources are available to you (I'm not American but by the sound of it these ALS centres are a good start), learn to be selfish (not rude, there's a big difference just learn to put your needs first) and throw your self consciousness out the window (it's pointless and trys to get in the way of the happiness you still have).

Nothing is more important than this day ...

D.
 
Thank you to everyone who has already shown support. By the way, my name is Kelli and I will go by Kell Bell on here :)
 
So sorry for you. Life is not fair. Hugs from Sweden. You have come to the right place though.
 
Kell Bell, I am so sad for your diagnosis, and also your family's coping methods. Your friends will hopefully pick up the slack! So will we!

Ann
 
Kell Bell...BIG HUGS to you. Your emotions will be all over the place, which is normal! My Neuro is right that there is a rise in younger people being hit by this train. It's so unfair. We are in this together, and I pray your family gets their heads out of the sand. Xoxo
 
YOU ARE NOT ALONE! There are others in the same predicament as you, and diagnosed at an even younger age.
-hint hint- :)
Keep your head up and live each day to the fullest. We'll be here if you need support, or someone to vent at.
 
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