A LONG day at the Mayo

[DaChief]

Unfortunately it was the diagnosis I expected but not what I had hoped. Guess you will all get to know me in the coming days/weeks/months/

Regards,
Bruce

 

[Nikki J]

Bruce I am very sorry. I know that even when expected confirmation is very hard.

We wish it had been otherwise, but welcome.

 

[lgelb]

I'm very sorry, Bruce. Give yourself time to process and remember who you still are. We will be here.

Best,
Laurie

 

[scaredwifetx]

Sorry Bruce. Its a shock even if you were prepared to hear it. You will find the company here quite understanding and knowledgeable.

 

[KimT]

Sorry Bruce. We're all here for you and for each other.

 

[swalker]

Well DARN. I was so hoping you would get a different answer.

So, very sorry to welcome you here, but welcome nonetheless.

As you already know this is an amazing resource. Feel free to ask any question (no matter how silly it might seem) at any time.

Here's hoping for slow progression!

Steve

 

[soonerwife]

So sorry for your dx Bruce. We are here for you!

 

[Firefighter58]

Sorry to hear your news Bruce, don't give up, stay in the fight with the rest of us.
Al

 

[Aussiemndcarer]

Yes Bruce, welcome. This forum will help you when you need a shoulder to lean on.
Sorry about your diagnosis.

 

[starente15]

Sorry to have you join us here. Hope you find lots of support from us.

 

[DaChief]

Thanks everyone for the welcome. I have already learned a lot on the site. Got the VA ball rolling with PVA help from info I found here. We will be moving back to FL to be near family in the spring so a lot on our plate over the next few months. Already have an appt with the ALS Team at the Mayo next week. I will need to decide whether to stay with the Mayo or go to the VAMC in Orlando in the future but have time to research that.

Regards,
Bruce

 

[Atsugi]

... I will need to decide whether to stay with the Mayo or go to the VAMC in Orlando in the future but have time to research that. Regards, Bruce

Bruce, I'm really very sorry to read of your diagnosis. I'm really glad you've got veteran benefits. I take it you read our 10-page PDF for veterans, yes?

I used to work at Orlando VA. At that time, they were still constructing their new hospital and they were using the old boot camp hospital as a VA clinic. My wife was a doctor there.

Too things, just in case you don't already know: First, you can get your care from BOTH the VA and non-VA sources. You can use VA or Medicare. We used both. They have different rules.It's best to keep all your providers up-to-date on what all the other providers are doing.

We used Tampa's Spinal Cord Injury clinic for nearly all our needs. They had a LOT of experience with ALS and were very proactive in getting us all the best equipment. Mayo Jax gave us our second opinion. The Orlando VA clinic gave us orthotics, walkers, standard wheelchairs, and they established a palliative team to provide us with palliative services.

The vehicle benefit: The dealer who sold us our disabled van really understood paralysis and the VA system. They knew all the VA rules and filled out all the VA paperwork for the van.

Let me know if you need any assistance down here.

 

[DaChief]

Thanks Mike! I am sure I will pick your brain over the next few months. That is exactly the info I am looking for. I am retired Air Force btw.

Bruce

 

[Lkaibel]

We had the same experience - we knew the diagnosis already but when it's confirmed it's so final. You have come to a good place, sorry to hear of the diagnosis but as you already see lots of good info and support here.