Thoughts/Opinions?

[Inaara]

I have some decisions to make. Don't have to make them right away, but within the next few months and some thoughts would be useful, I think.

What is more important or useful/helpful for you guys - a city/town with access to (or potential access to) top-notch medical (or as top-notch as you can get for your given situation) or a city/town with solid and reliable folks who are supportive of you?

One way or the other, I am going to be moving in the not terribly distant future, what I need to make a decision on is where to...and somehow, I thkn that flipping a coin may not be the best method of making my decision, so I figure that most of y'all have been dealing with this crap longer than me so I should at least get a little wisdom before I make up my mind.

 

[RobinN]

I think you can find a combination of the two.

Personally, we have been to two of the "top-notch" medical centers in our area, and I have been greatly disappointed as to their narrow minded approach to my daughters situation.
I also think that it is up to the individual to find the support needed. One can't expect others to just come out of the woodwork to lend a hand. Hard work, but I think when your heart is in the right place these people are introduced to you.

I would say find an area where you can find peace, and "feels right". Economics might play a role. Certain cities are very expensive to live in. There is a list of the best cities to live in. I think it is listed in a magazine, though the name slips my mind. I am sure you could Google that info.

Good luck in your choice.

 

[Nakamova]

In theory I haven't had to choose -- I live in close proximity to some of the "top-notch" neurologists in the area. But far more valuable to me has been access to local support systems and resources: I'm minutes away from public transportation and supermarkets, and friends and family. However, I'm lucky that I've achieved some degree of seizure control, so that the quality of my neurologist is more or less irrelevant at this point. (As far as I'm concerned, CWE is a better source of information than my neurologist). I think you can find great doctors in the boonies, and lousy doctors at the fancy hospitals. Or a "great" doctor who sucks at listening. It's a crapshoot. If you HAVE found a neurologist who is knowledgeable and receptive and can make a real difference in your quality of life, then that tips the balance; based on CWE reports those docs are rare indeed and worth holding onto whatever it takes.

 

[Inaara]

If you HAVE found a neurologist who is knowledgeable and receptive and can make a real difference in your quality of life, then that tips the balance; based on CWE reports those docs are rare indeed and worth holding onto whatever it takes.

Yeah...at this point, I haven't found that kind of a doc, hehe.

I have a great neuropsychologist (Dr More Useful) and the shrink (Dr. Useful) they send me to is pretty useful (for brain injury, they send you to a team that consists of a neurologist, a couple of neuropsychologists, a psychiatrist, and a couple other docs that, honestly, I don't really know what they do) - it was the shrink that figured out what was going on with me (he's the one I told not to talk to me until he read the journal I'd been keeping and said "you have temporal lobe epilepsy caused by a brain injury") and who has forced the neurologist to pay attention, but my neurologist is...uh...yeeaaahhh. I've dealt with worse docs, for sure, but she's honestly not my favorite doctor ever. Or my favorite person ever.

Long story short, my "support" people here...aren't. In fact, they're causing more stress and drama than I really need in my life right now. And that's putting it mildly. The one person here who truly is a support is moving to California in May (and I am thrilled for them! It's an awesome opportunity!). Where I live isn't particularly conducive to my getting around on my own and my license is officially medically suspended (I wasn't driving anyway because I wasn't comfortable doing so as long as I didn't have good seizure control) and I am coming to realize that the effects of the brain injuries are impacting my day-to-day life in more serious ways than I had first understood (than I was willing to admit? Pride is a killer sometimes).

While San Antonio does have great medical facilities and good locations for my needs (buses, close walking distance to groceries, shops, and decent apartments within a mile from the hospital & clinics) and I truly love the city, I also haven't been there in about 15 years or more, so it's a complete start over where I know no one. Yep, I can meet folks and such, but that takes time and, to be honest, some of the effects of the brain injuries have made me a little shy socially because I get embarrassed because of the effects to my speech, not to mention my thinking ability.

The alternate choice is a city that's not a terrible city to live in, that also has close access to apartments and such and does have a decent public transportation system (though admittedly, I don't know enough about the city to be able to speak intelligently right now regarding how close grocery stores, etc are) and has decent apartments within a mile or so from the hospital and clinics I would need to use...but is also where a good friend lives and another good friend is seriously considering relocating to within the next six months. Both of these friends are strongly encouraging me to consider a move to this city so that they could help me in my recovery from the brain injuries and be close by in case I have a medical emergency and just generally be available to help make things easier overall. Currently, even though both are a considerable distance from me, they do what they can to help - remind me to take meds on time, encourage me to not give up in fighting the VA system, encourage and help with small things to help with hand-eye coordination and memory, or just lend an ear on those days when I feel like I'm beyond my capacity to handle all of the changes whirling around me all of a sudden...small things that can be done from a distance but that, honestly, mean a whole lot.


Anyway, I dunno. I guess that's why I asked the question of what others here find is most important or most helpful to them: the so-called "best" medical facilities or a stronger support network of people who are actually interested in seeing you do well, if that makes any sense.

 

[occb]

Reading the above post, my knee-jerk response is move to the alternate city. The distance to the hospital and clinic are negligeable, if you can get into those apartments. From my experience with partner, a supportive friend is more valuable than almost anything else --you'll have more contact with this friend, so you have more direct support, and s/he'll be able to notice things you don't and provide you with third party observations for the docs.

Plus, with the speaking issue, as you said, it will be more difficult to make new social contacts. That's a big part of partner's issues as well, and it's been a struggle for him to make friends here.

 

[Nakamova]

Yeah, in thinking back about my seizure history, I definitely vote for being near friends/supporters. It's made a huge difference for me.

 

[Zoofemme]

I've been to supposedly one of the best neuro clinics in the country...it was a miserable and disappointing experience. I would vote for the support network. I think if I had had that in place I would probably be a different person today. Instead, I was pretty isolated and turned into a loner/hermit type. I was embarrased by my "condition" and that embarrassment has stuck to this day. I can't tell you how many times i have offered my husband an "out" of our relationship because I feel like a burden on a fairly frequent basis. A support network is important...no matter how independent you are. Just my 2 cents

 

[Rae1889]

Supportive network for sure.
I couldnt imagine not having people around me that care if I had better clinics to go to.
I think that smaller towns would help you out, as they are very community based, and if its relatively near a larger town, then your good.
Both would be nice, but friends are always there when the medical world around you changes.

 

[seizingbeauty]

I know from a personal stand point, my freedom is extremly inportant to me. I live in a city with a high level of public transport, multiple hospitals and amazing green space.
We have though of moving repeatedly, however, my reliance on PT weighs greatly on the choice of neighbourhood. Proximity to medical attention is important not just because of the E but alos because I've been refered to as "An accident looking for a place to happen":roflmao: My guy has been amazing about living where its most convienent for me even though it has him communting over an hour to get to work.
As to social situations, I wouldn't worry too much. From what I can tell your a bit of a "gamer-geek" like me. In a group dominated by males, a lady joining in is never viewed as a bad thing. The guys like hanging out with the girls and the girls like have another girl to talk to.
Hope you find the right place!

 

[knothing]

Wow!
That is one of the toughest questions I have ever seen. Medical facilities are all fine and wonderful but pick the best facility in the world and still you and your doctor may not gel anyway. Doctors are harder to find and keep in touch than a support structure. 50yrs ago both had to be next to each other. Now with all the technology it is so easy stay in contact it is crazy (twitter, facebook, skype, IM, old fashioned email). I guess it comes down to can you and your support maintain contact good enough for you? How good are you at bonding to create local support? What type of doctor care do you really need? How many neurologists are in the new area you may be going to? Is there an area to live there that meets the majority of you need? I say majority because nowhere is perfect.

You have to figure out what you cannot live without and where you can compromise. Very hard to change and still find balance in your life.

 

[Inaara]

You have to figure out what you cannot live without and where you can compromise. Very hard to change and still find balance in your life.

Yeah...it is.

I am thinknig right now that maybe he balance comes in leraning to maybe be a little less stubbornly stuipd and prideful, which would probably oput me in alternate city when the time comes, I think.

I still have some time to make up my mind...which is just as well. That bad habit is gonna take me porbably the rest of my life to change! :roflmao:

 

[Inaara]

Ok. Made up my mind (with a little help from y'all and "motivating" friend, hehe).

Got all the paperwork together for my apartments here (which are really very nice folks, willing to let me break my lease for medical reasons - which they aren't required to do - in exchange for a doctor's note, a copy of a rental application in my new city, and a $300 early move-out fee), and now just waiting for word of when I can move. *crosses fingers for June 1*

For what it's worth, I decided to go with Oklahoma City, a.k.a. "storng support network city" after taking all thoughts into account and doing a little research on both San Antonio and OKC. Besides the support network, OKC has a much better infrastructure transportation-wise, many more places in walking distance of various apartments, and is a LOT cheaper in terms of cost of living. So, soon as the folks here tell me everything's in order and the folks up there tell me my app's approved, I'm good to go.

 

[Nakamova]

Good luck with the move! I moved to a place where I can walk everywhere, and it's been great. Also a huge bonus since my car is at the dealer's indefinitely waiting for recall repairs (two weeks and counting, "waiting for the parts arrive, no idea when").