Hi there Craig,
What a bummer. Nice to hear and see you again. I was so happy when they took the MS diagnoses from you, but to get another one that most of us have not heard, really stinks.

You are still the great guy we know you are, so please stay with us. We can support each other as usual. We listen, we care.
Hugs to you my friend.

PS: you being in computers, probably know about "Dragon Natural Speaking" software. I know Marc uses it and has it well trained.

Feel better and come back soon. We missed you.

craig,

i'm truly sorry to hear this news.
i remember you too.
we're here for you. just do the best you can. one day at a time.

WOW Guys! Thank you so much for the warm comments of concern and support. I understand all of the suggestions for 2nd opinions etc. Well, you guys who don't know me, don't know that I pretty much exhaust all possible and accessible opportunities for clarification and confirmation before going public. My brain stem stroke a year ago did not precipitate this current situation and is unrelated to the disease pre or post stroke. The stroke simple being an unfortunate additional medical event to deal with in conjunction with what was already in process.

I will be honest with you all also, I'm very tired! I have been dealing with this roller coaster disease vs. diagnosis, 2nd and 3rd opinions, countless CTs and MRI's, blood work, and trips to Medical College of Virginia and University of Virginia neuro treatment/pain eval and management centers, since 2000. Not to mention the hours of personal research on the net. Either this process or I are getting old. I really think it's me!

Good news is my basically new $9,000 power wheelchair is being completely reconfigured so now I will be able to use it throughout the entire house. Much of this rebuild is due to me losing 52lbs. since late April (not intentionally either) and a rehab rep who really is "professional" in knowledge and practice. How refreshing! I should have the rebuild by the end of January. Although, I'm sorry to announce I will not be competing in the Olympics this year for the "Wall Walking" and "Furniture Bouncing" events. I seem to have drastically lost my ability for accuracy. BUMMER! I know!

Christmas was totally "AWESOME!" My son flew in from Chicago for 7 days and my daughter's family, including my 4 and 6 year old grandsons, were here from Thursday through Sunday evening. Exhaustion was the standard for me during the visit. I even stopped taking my medicine so I could spend quality time with my family rather than sleeping and suffering the side effects. I'll be keeping you guys informed although, not a frequently as before. Posting is very challenging and exhausting for me. This post took me about an hour to write, as an example. Oh well, Forever Forward!

Wishing you all a very Happy and safe New Year celebration.

P.S. I apologize if this looks familiar to some of you who post on other boards I visit. I find cutting and pasting the only way to convey my messages now vs. unique posts stating basically the same thing on each board.

This is a separate follow up to the suggestion of using a voice activated software such as "Dragon."

I know you had no way of knowing this but here it is straight up and possibly you guys could give me some suggestions and insight.

Since the stroke and even worse now, I have extreme difficulty expressing myself due to the challenging process of getting my thoughts straight then getting it out verbally. I don't know the name for it, Aphasia or something like that? To me, I sound like the stereotypical "retard" trying to talk. Wrong words come out vs. what I am thinking or mean. Since the stroke I also seem to spontaneously say "*****," "crap," and a few others. Speech is very halting, distorted, and with bad pronunciation.

Having gotten that out, can a software really learn to overcome these challenges? If so, I would be utterly amazed.

Thanks for the suggestions.

Nice to hear from you, again, Craig. Happy you had an awesome Christmas.

Welcome back, Craig! I'm sorry for what has been happening to you.

I hope your new year is filled with laughter, and lots and lots of love!

Craig, nice to meet you, so sorry that it is under such circumstances.

I can only offer support and a caring shoulder/ear.

Know I am praying that you can find the suitable meds to allow you to rest when needed. And that the docs will find a treatment to help you!

Come here often and visit. We have enough love to go around!

Hugs,
Deb

No craig, the dragon speak and others like it will be useless as you have to train them for your voice and you have to have a pretty steady "sound" to it. In other words you have to say the same word the same way each time.

A while back, at the neuro office, there was a pamphlet for people with speech issues such as from Parkinsons. (sounds similar to yours) Call the support group in your area for parkinsons and see if they know about this program.

I think that the above will be much more useful. Sorry to rain on the parade with the dragon type programs, but hate to see you waste the money on them. The good programs go 140ish on average. Not cheap, albeit great tools if you can use them.

Hugs
Deb

Hey Guys!

Thanks for checking in on me. Since I made this post in December things haven't improved. In fact, I had left my old neuro, who I've been dealing with since 2000 and went to the new on in November. As a result of my diagnosis and prognosis, BOTH of them have told me there is no reason to come back and see them with the exception of an acute situation in the hospital.

Why you ask? Simple. There is nothing anyone can do. End of story, close the book, no more chapters to write. It's taken me this long for the reality of the situation to sink in and I'm still adjusting. My wife hit the wall and finally had to address the situation when the holidays were over, kitchen remodel was finished and things settled down to a point she couldn't ignore it anymore.

Bottom line, we are working with an outstanding estate planning attorney getting all of our financial assets protected and in order mainly so Medicaid can't bite us in the butt if I live long enough to have to go into a nursing home. In addition, the nursing home can't exercise creditor power and attach our assets leaving my wife with nothing.

Like I've said, I've checked the bottom of my foot and found NO blue ink date of expiration stamped on it so I'm betting the neuros have no more clue about that than anything else. We all know how that can be, right?

I'll keep in touch but right now I'm readjusting my life to "live it" accepting each day with whatever challenges it holds in store. The new motto in my house is, "go with the flow and listen to your body." I do!

Im sorry that you have been set free, and the MDs are not even asking you to come back for some maintenance or upkeep while you are still here. Even if you are here for 2 weeks, or 2 years or 2 decades, you deserve good quality medical care, and follow up for things like...pain management, symptom control, skin care, and so forth.

Please know that you are loved, and thought of. I will keep you in my prayers.