New Diagnosis

[AfraidButNotAlone]

Hello everyone. I just joined today. My question is how do you get through each day? My diagnosis is new (confirmed 11JULY13) and I am a complete wreck.

Any candor will be greatly appreciated.

 

[lgelb]

Welcome to the club no one wants to join. We're happy that you found us.

In truth, it is not likely that you are alone, despite your username. Most people have social contacts via some combination of work, friends, family, professionals, neighbors, organizations, churches and so on. If it helps, make a list of everyone you know who might want to help you in some way at some point. That list includes thousands of forum users here and elsewhere, and I'm sure ATL has scores of local support group members as well.

You will never stop being afraid of the future, so get the "what if" paperwork done, keep doing the things that fulfill you, let people know who need to know, and adjust to the physical changes as you must. That way, you are less likely to be afraid of the next five minutes, so you can spend on them something more useful and/or fun.

Best,
Laurie

 

[ottawa girl]

Sorry about your diagnosis. Really, I am.

Once you get over the initial shock ( yes, you will), please take to heart what Laurie so eloquently posted. If you are truly alone, get to work on remedying that. There are plenty of generous and loving people who can and will help you on many levels. Just reach out as you have by joining this forum. Your ALS clinic is a great place to start and the social workers there are phenomenal resources.

As you get the planning and logistics organized - just live! Decide to get on with it and enjoy yourself everyday. Small and simple pleasures each day sure do get me through. Am I afraid? Yes. Very afraid. I used to have sweet dreams about my future. Now thoughts of my future have become a nightmare. I try to conquer the fear by focusing on today. Right now. By hugging more honestly, laughing more heartily and living more urgently my fears dissipate. Admittedly, I'm not always successful; there are indeed bad days- but all in all, there are many many more good days.

We can, each in our own way, learn to make the best of a bad situation. We are here to help you and support you.
So see - already - you are not alone.

 

[AfraidButNotAlone]

Thank you for your kind responses.

I guess my name isn't necessarily a good choice. I have friends and I have a family, but I live alone on the other side of the world from them.

I guess I just feel alone.

 

[Txgirl]

I am so sorry for your diagnosis. I know you are scared and devastated. Please know that there are people here to help & support you.

 

[adozi]

Join an ALS clinic, see a therapist, get antidepressants, and tell your friends and family. You've done the right thing by joining this forum. I'm truly sorry you had to, but these people are great.

 

[AfraidButNotAlone]

Where I curently live, there are no ALS clinics. One neuro that I saw said I was only the second case that he knew of in the country. Therapists are here, but not covered by insurance and there are no HIPPA laws to protect the clients.

I guess I'm stuck with you guys

 

[adozi]

Where I curently live, there are no ALS clinics. One neuro that I saw said I was only the second case that he knew of in the country. Therapists are here, but not covered by insurance and there are no HIPPA laws to protect the clients.

I guess I'm stuck with you guys

Where do you live? Your profile says Atlanta; Are you from Atlanta?

 

[AfraidButNotAlone]

I am from Atlanta, but currently overseas in the Middle East. My home is in Atlanta.

 

[adozi]

Cool! Well if you come back, you will have good support and social security disability and Medicare. In the meantime, you might want to check with ALSA to see if they can help you from afar, or if they know of resources available to you there. Best of luck.