just diagnosed

[Robbieh25]

I too was recently diagnosed at mayo in Jacksonville 10/2016 I have a very supportive family this news was devastating to us all. I could use some advice that's for sure . My clinic at mayo went really well breathing was very good. Strength test was very good and the swallow test was very good so they say it's early stage I have been reasearching from stem cell to lunican to cannabis and supplements all the options out there I'm going to mayo in Minnesota in a few weeks for a second opinion and just want to ask them all the questions I can again I'm new at this looking for advice

 

[Nikki J]

I moved this to a new thread. Sorry to welcome you

Mayo Jax is a great place to be but getting a second opinion is always recommended.

You will find threads about all the things you mentioned here. I also recommend reading the sticky posts at the top of the general subforum and the one for VA benefits if you are a vet. There is a lot of info so read them at your own pace. You will see which ones are most immediately applicable by the titles.

You will also find support here and people who will answer your questions and offer friendship.

Glad to hear you are not too affected so far.

 

[lgelb]

Robbie, sorry that you find yourself here. As Nikki says, pace yourself and don't feel that you have to jump into anything this second. Not everything that glitters in ALS is gold, and some can do more harm (even if just to your wallet) than good. The keys that some of us have found to longer, better life are pretty basic, like keeping your weight up, staying hydrated, starting breathing support and getting mobility devices when you need to, getting good sleep, staying as social as you want to be, keeping up with something that de-stresses you, etc.

Best,
Laurie

 

[chally]

Hey Robbie, welcome to the forum ! If you got what we got then this is the place to be. As mentioned good easy on yourself, there is a lot info and of course your about to go on the emotional roller coaster of your life, so hang on take it one day at a time. As a member use to say " don't break the #1 rule" ( which is don't FALL"). Post often and make friends!
Easy does it!
Chally

 

[Robbieh25]

This roller coaster in not fun at all and I will certainly take in all of this advice I want to be in it for the long haul researching all that I can just don't want to get exhumed by to much

 

[affected]

Sorry to be welcoming you to the family Robbie xx

 

[azwxman]

hi Robbie
welcome to the forum. Really sorry about the diagnosis.


mark

 

[Robbieh25]

Once I come to grip with this I think I can cope somewhat eaiser and I will especially with this forum and support groups I'm looking into none of us are promised tomorrow With Gods love and guidance that's my way to begin to deal with this

 

[ehd42]

Hi Robbieh25,
Welcome. I really think that this forum offers a considerable amount of useful information and guidance given by people with lots of experience in dealing with ALS. I also realized early on that I needed to learn a lot about ALS if I wanted to maintain the best quality of life possible in the face of advancing symptoms. I found a lot of relevant and well-written information about ALS at www.alsa.com as well as on other websites. I also found many books about ALS and how people managed their symptoms on Amazon. As I slowly accumulated more information and understanding about ALS, and the management options available, my level of anxiety and fear diminished. With this information I was better able to prepare to manage my life. I have found that in dealing with ALS knowledge is power, the power to improve my quality of life and the power to make wise decisions in a timely manner. I think this may also be true for you.

Best wishes

Eliot

 

[ehd42]

Sorry about the error. MINE DEVELOPMENT ASSOCIATES in the last post should be : www.mda.org. Must be a glitch in the voice recognition software.
Eliot

 

[scaredwifetx]

Welcome Robbie. Sorry about your diagnosis and I am sure you already know what wonderful support you will receive here.