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Denny

Member
Joined
Dec 13, 2011
Messages
15
Reason
PALS
Diagnosis
12/2011
Country
US
State
CA.
City
Southern
Hello anyone,
My world is rocked here.I am having all the negative emotions going on inside and I thought I try this forum to help me cope! I've never done this chat stuff before so I'm not so great at typing.And I no I have to reinvent some of the way I spend my time and this is a place I can vent.
So if there is someone out there that has some great advise at this time for me I could sure use it!
I've been sick for some time already, all kinds of tests and finally went to a neurologist with weak thighs, upper back and some arm weakness and bingo horror story! I feel it everyday already so I'm scared
 
Denny,
Sucks that you gotta be here, but "here" is a great place for information, advice, and you can vent your hind parts off!
I'm with you on the "never done this chat stuff before"... before I joined this forum I hadn't done it either.

Some pretty smart folks will have better advice than I can give you, but I will say this; take a (short) time to scream, holler, break stuff and do damage for the diagnosis and then re-set your brain housing group to "Live" mode. Focus on what's good and enjoy it. Adapt what you need to adapt for your symptoms and enjoy some more. Don't live like you were dying (as the country music song suggests), but live like we all should have been living in the first place!

Have you hooked up with the local ALSA group? Like chat boards, that was new to me but I did it anyway. Went to my first meeting this Sunday and it is good medicine, my friend. They also have a Caregiver support group that your significant other (and other family members) would likely benefit from. It all seems kinda foreign in the beginning, but you have to jump in and aggressively manage your care and your mindset.

Best of luck, and you came to the right place!
Jeff
 
Thanks Jeff,
I've already been doing all those things you listed, the re-setting my brain might take a guy like me a while!
Yes I found a group at the local University medical school they meet this Thursday.
 
Denny,
Good on ya. I had to have an MRI to even find my brain! And that test was inconclusive as to whether I really have one.

Scan the board and you'll find 'nuggets' that fit your situation (married, single, veteran, non-veteran, young, old, midget, non-midget!).
They say knowledge is power... there must be a Superman and Wonderwoman convention on this forum. (this author most certainly excluded!)

Jeff
 
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Jeff,
I guess you can be my first friend if you don't mind. It might take me abit before I figure this board out.
 
You'll have lots of new friends here Denny. Welcome.

AL.
 
Thanks Al
That living today like tomorrow may never come is going to take a bit of time for me to adjust. I had a lot of plans for this part of my life.
I'm pretty sad.

Denny
 
I understand the pretty sad part, I'm doing okay with lots of this, most in fact but still having trouble giving up on a few "retirement" dreams. I want to be happy for what I have 100% of the time and made the most of every day, hour in fact, blah, blah, blah and do manage most of it but still .....there are times.....bits.... I just having trouble giving up.
 
You have found the best of the worse places to be forced to find. If you know I mean? The people here will help with things as they come up that you want help with. We can give you support and kindness, let you rant and rave, cry and scream, and hopefully give you a laugh or two. You will find a way to deal with the anger and emotions that come along, you must for your own sake. Let us all help you as you need it. Hang in there.
 
Hi Denny, welcome to our little club... (but watch out for those ne'er do wells over at Zaphoon's Pub). I don't know how old you are, but if you're working, do if for as long as you want to, you will know when to stop doing things. Don't push yourself to walk if you're weak, you don't want to fall and really hurt yourself. I don't know what I would do without my scooter, I have been going everywhere with it (well, except for the beach, I have to use the sand wheelchairs they have at the beaches).

What the others said is so true. You need to vent, go through the series of emotions, as it's kind of the death of a dream in some ways, isn't it. BUT, there is plenty of stuff for all of us to LIVE for. I'm still pretty healthy and I was diagnosed almost 2 years ago, with symptoms starting sometime before that.

Be proactive... learn and get stuff before you need it. Look into clinical trials, there's a second phase of the Dexpramipexole trial starting this spring I think... most of all, be positive, and enjoy your life. Come here to vent, to scream, to laugh, to cry... it's my lifeline, and it's kept me sane (though some would disagree with that), and it's all due to the folks here.
 
Sorry you gotta be here, but welcome aboard.

Just shoot out the questions as they come up, somebody on the board has been there and done that. You can use the search engine to find thread topics like "peg tubes", "vent" PWC'S, VA, "communication devices," etc. There's even a thread for jokes and humor and one where we count our blessings called "Happiness Now"

Make sure you register with the CDC, also with MDA and the ALSA in your state.

Get involved in research if you're eligible. Some studies might only require a questionaire or a tube of blood. The CDC site has questionairres you can fill out online that will help the researchers compile data.

We've members around the world so someone is always online day or night.
 
Thank You All
I was always very healthy and the last six months have been very hard,weight loss, fatigue all kinds of medical tests.Now my legs are getting weak and it seems like its moving fast.So its hard not to get depressed. The doctor gave me a script for Rilutek, I'm sort of afraid to take it, but I geuss it's all we can do_Oh and yes I've been praying hard for awhile!
I'm 56 and I got to retire at 52 so the loss of time to be free to go and do anything is hard. To many emotions!
 
Denny,
Welcome, my knowledge is limited, but I'm an overload of positive energy.
If you need anything, just fire it out.

My first advice is let it all out.
One of our forum member's tag line is that there is life after ALS, they are right.

Not the same, but there is life, and it can be great.

Take what you can do today, and be proud of it, enjoy the achievements.

I hope that you and yours have a great Christmas season, please enjoy your family's love, and try to return it to them.

Cheers,
Casey
 
Denny,
Sorry for all this. Hang out here for support and information. It's a tough row to hoe but you'll get through the sad part and start living again. Like everyone said, hook up with ALSA, file for Medicare and SSI (it takes 5 months)
There are wonderful people here who understand all your going through.
Susan
 
In Alabama. ALS. Gets you immediate. Approval of disability ssi and Medicare parts A and B not sure about other states. But definitely check into it. You may have to tell them. I had to and boom I was approved.
 
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