Has anybody tried to get a handicapped tag for their car for CH? My doctor is being a weenie about it.

Honestly, I wouldn't care, except that at my university, off-campus students have to park so far away from the buildings that some days it's impossible for me to walk to class without triggering a major CH attack.  And forget about buses; they drop me off so far from my building that it's just as useless (and I still end up walking up three flights of stairs!)

Here in Texas, on the application, it states that a doctor must certify that I have a condition that meets one of several criteria, including:
(a) cannot walk 200 feet without stopping to rest
(e) uses portable oxygen
(g) is severely limited in the ability to walk because of an arthritic, neurological, or orthopedic condition
(i) has another debilitating condition that, in the opinion of a physician licensed to practice medicine in this state or a state adjacent to this
state, or authorized by applicable law to practice medicine in a hospital or other health facility of the Veterans Administration, limits or impairs
the person's ability to walk.

Does anybody have any experience with this?

Ch doesn't impair or limit the "ability to walk."  

You might partially meet some of those criteria, but personally I think those spots are there for folks who have more severe or apparent physical limitations...

UnderTheRadar wrote on Jan 12^th, 2009 at 3:44pm:

Has anybody tried to get a handicapped tag for their car for CH? My doctor is being a weenie about it. Honestly, I wouldn't care, except that at my university, off-campus students have to park so far away from the buildings that some days it's impossible for me to walk to class without triggering a major CH attack.  And forget about buses; they drop me off so far from my building that it's just as useless (and I still end up walking up three flights of stairs!) Here in Texas, on the application, it states that a doctor must certify that I have a condition that meets one of several criteria, including: (a) cannot walk 200 feet without stopping to rest (e) uses portable oxygen (g) is severely limited in the ability to walk because of an arthritic, neurological, or orthopedic condition (i) has another debilitating condition that, in the opinion of a physician licensed to practice medicine in this state or a state adjacent to this state, or authorized by applicable law to practice medicine in a hospital or other health facility of the Veterans Administration, limits or impairs the person's ability to walk. Does anybody have any experience with this?

You gotta be shittin me?

           Kinder gentler Potter

No, I'm not kidding.  I get really, really bad hits with any elevation in heart rate...going up a flight of stairs can send me into a K8.  So walking half a mile with five textbooks, two totebags of art supplies and a portfolio every day is out of the question for me.

I know exercise doesn't bother a lot of CHers, even helps some, but in my case it does impair my ability to walk.  Like I said, for the rest of town I wouldn't care, it's just that at my school I have had a really hard time with this.  And clusterf'd, I only have to meet one of the criteria.

Please don't be ugly about this, guys.  I'm serious.  I almost failed out of school last semester because of the clusters, and I start school next week, and it doesn't look as though they've ended yet.  I'm trying not to drop out.  (for those who don't remember, I'm drug resistant; there's nothing we've found so far that helps without knocking me out,  so I'm doing this without relief.)

When in cycle, exercise triggers me too.   Could the school be of any help to you?

Jeannie

The only thing the school will do is allow me to park in the handicap spots if I have a handicap tag...they won't do anything else.  The art building is surrounded by parking lots, but those are only for dorm residents- they won't let me park there.  

Quote:

I think those spots are there for folks who have more severe or apparent physical limitations...

A man of honor.  I admire that!

Nothing irks me more than able bodied people using hadicapped spots, except maybe fat people buying cookies with their food stamps.

I wouldn't use it around town.  but at the art building, there's about 15 handicap spaces, and at most there are 2 cars ever using them.  :-[

Exercise is one of those wobblers. For some it offers relief, for others like you, it's a trigger. You will probably find there is an appeals process. If the person in charge, in this case your doctor, says no, ask to speak to a superior. Make them watch one of the You Tube Videos of someone getting hit. Explain in your current status, avoidance of triggers is your only option.

And for those of you who are skeptical of CH being worthy of a "disability status," to quote many of you, maybe you don't really have CH. I'd expect a little more support for someone trying to legitimately avoid a hit then I am seeing on this board.

Joe

Would you get hit if you walked slowly?  Maybe you could arrive early and take more time walking so as to not get your heart rate up as much?    I'm sorry I don't have better solutions...... just trying to figure out a way to help.  What about 02 to abort the hit before class starts?

Jeannie

Quote:

to quote many of you, maybe you don't really have CH

One can only hope!

Guess I'll just agree to disagree on this one Joe.

My University has a disabled students shuttle.  Kinda like a Dial-A-Ride.  Have you checked in to that?

Thank you, Joe and Jeannie.

As far as buses and shuttles, they all stop running at about 8pm, long before the end of my day; I have to be in the studio late at night sometimes, and I have a job as a computer lab monitor that lasts until midnight.

The funny thing is, if I'm using oxygen to abort, then I clearly DO qualify for a tag under "criteria (e): uses portable oxygen."   ;D

Do you mind telling me what university you attend?  Some universities have their own rules regarding parking (check the university health or police website).  I know that where my daughter attends, they have it to where you can get handicapped from the campus, it won't allow parking in handicapped, but students can park in the teachers spaces.  Also at my daughter university, after 5:00 pm, parking is pretty much a free for all (the only way you can get a ticket is to park in a handicapped parking area).

Can we not judge other's needs based on our own? I think Joe already said it all. I was an art student without CH and carrying supplies is an issue in itself. Getting on and off a shuttle is near impossible with a portfolio, drawing tablets and a toolbox and I didn't even have to carry O2 with me.

Charlotte

But then again, under is not in cycle so really doesn't need a parking permit:

Quote:

Well, I'm sold!  the question is, if I've only just now ended a cycle, how long should I wait to test for my "normal" levels?    Might a test right now still show the "in cycle" levels?  this is exciting!

I will say one thing, if others are like me than you will get some dirty looks from vets like me who see an able bodied person jump out of a car and run in to a store. I do however believe that Paige has no intention of receiving these bad looks for convenience sake…

Here in the UK several ch'ers have handicapped tags because of having to use portable oxygen - you can't take an o2 cylinder on a bus or any other form of public transport so therefore you CANNOT use public transport.

Think about it, you are carrying an accelerant for a fire - I sure as heck wouldn't want to get on a bus with someone lugging around an O2 cylinder never mind the fact that the weight of one or 2 E tanks alone would cripple you to have to carry without all the other stuff this chap needs.

What I want to know is if he gets no joy from his doctor where does he go next? Would an insurance company help? Is there a practice manager or another doctor at the practice you could see? Do you have a neurologist you could ask?

Don't leave it hanging, we all want to know please. This isn't just important info for you but for all of us

Good luck

Helen

Rather than go through all the hassle of getting a handicap permit... is it possible to have some of your o2 delivered and stored in a locker at the art building? It will at least get rid of your need to carry the o2.

also... I'm all for your pursuing the handicap parking permit for your condition... no-one knows better than you about what you need and what your ch is like.

If the parking permit should fall through... consider investing in some sort of a fold-up cart that will help you carry all of your gear.

Good luck to ya.

with warm regards,
Tony

I'm at TSU in San Marcos- the college in central Texas that is famous for it's hills...they say it's the only place where you really can say "I walked to class uphill both ways."  ;D

That would be fair, Bob P, except that since I posted that post, I've gotten several rogue hits and I'm still shadowing every day again after about a week's reprieve...basically, at this point, I have no idea if it's over.  I'm just still in constant pain.

yes, Roland, I have far too thin a skin to endure the "dirty looks"!!  I really am only looking into this for the particularly bad parking situation at my campus.  I would NEVER use it around town. Basically, they've built this new building complex way out on the edge of campus, but have put in no commuter parking anywhere near it.  

Actually, I need to look into the 02 thing- I may not even be allowed to have it in the building.  :-[  There's welding and all kinds of crazy chemical stuff going on.

And it sucks that the school won't budge at all on parking rules; but, then again, when has it been easy for any of us when dealing with the public and CH?  We get the fuzzy end of the lollipop enough as it is.  If I have to quit school because of this, I don't know what I'll do.
-Paige

Guess I misunderstood.  I thought that maybe since your doctor was happy for you regarding psychadelics that they had worked and you were pain free.

One other thought I'll throw out there...

How about using a d-tank instead of an e-tank?  It's size makes it very portable and there is enough O2 for one hit.  

There are also loads of transport backpacks and bags to choose from.

-Dennis-

Sorry about that, Bob...it's not even very clear to me what's going on-we really thought they were on the way out, and then BAM! I got two days of hell, and now I'm back where I started.  But the pattern seems to be changing, and it's getting unpredictable.  I look back and I feel so stupid for thinking it was over!

On a funny note, I was telling my over-worrying mom (who's had heart bypass surgery) about this, and how exertion brings on an attack, and now she's freaking out that I'm going to die of clogged arteries in a year.  :D  I can't win fer' losin'!!

I say pursue whatever it is that makes dealing with ch better for you, for me it would not make that much of a difference but i will not judge another man about what he needs.  not all handicapng  are visible,  i do get a bit tweaked with obese people in those spots and nothing  but crap junk food.

Under,

I am not sure how it works where you live, but here you can be issued a temporary tag. Same as would be issued for someone who broke a leg for example. Maybe your doctor would be more inclined to assist you if he knew it would be a temporary thing.  :-/ Just an idea.

Gina

Well, I got a temporary solution- my other doc gave me a letter to give the campus cops to get a temporary "all zone" pass, which means I can park in any lot (as long as I can find a space!)  

She wants to get the stamp of approval from a neuro before we try for the tag...she thinks I might get turned down if it's just on her word alone. And see if 02 works for me this weekend, because she said yes I can't ride the buses with a tank!  :D

It would seem to me that if your MD has prescribed O2 then you qualify under that one option. I would go back to the MD with a map of the school parking facilities and the building where your classes are. If more frequent attacks are causing more visits to the MD or the consumption of more prescriptions and/or O2, perhaps your insurance company can apply some pressure. A parking permit sounds like a win for everyone: you to have fewer attacks, and the doctor/health plan to lower costs to treat you.

Good luck. I would also appeal to your student services division and/or file a grievance for them not recogizing a physical impairment.

If  your MD signs off on it, then you got it. No need for the neuro to sign off too. However, I would invest in a portable cart to carry everything in, textbooks, O2, everything. It's much easier to roll one of those along. May as well make it as easy as possible.

Still gonna have to climb the stairs, or is there an elevator?

As for dirty looks, Kirk has a parking permit we use when he is in my truck. We get out, and he doesn't always use his cane. But... just because someone qualifies for the placard doesn't mean they look like they do. If you get any looks, then it's their problem. And also none of their business.

If you are at the grocery store, and walking out with a load of groceries, would that be enough to trigger you?


Quote:

i will not judge another man about what he needs.  not all handicapng  are visible,  i do get a bit tweaked with obese people in those spots and nothing  but crap junk food.

Interesting post. Which is it? Are you judging someone based on what you see as a handicap?

Is it really that big a deal if someone gets a handicapped placard for their car, so they can walk into somewhere without getting hit? If a doctor signs off on it, then what's the big deal?

Personally, I like to have the air in my face when I'm shadowing, or getting hit. I'd rather walk. But for Kirk's sake, we use the handicapped parking. Some days he can barely put one foot in front of the other. Other days are better.

If parking closer makes you get hit less, or no hits, then great. Give it a shot, and see if it helps! I hope it does!

If you want to negotiate with your U folks:

(The author is one of the better headache docs around.)


Lancet. 1999 Sep 18;354(9183):1001-2.
Comment in:
Lancet. 2000 Jan 8;355(9198):147.

A new cluster headache precipitant: increased body heat.

Blau JN, Engel HO.

Exercise, a hot bath, or elevated environmental temperature provoked cluster headaches, within 1 h, in 75 out of 200 patients. This new observation accords with recognised precipitants--alcohol, histamine, and gyceryl trinitrate--perhaps via generalised vasodilatation or hypothalamic activation.

Publication Types:
Letter

PMID: 10501368 [PubMed]

========
I can't get this article but, being at a Unive, take the citation to your library and see if they can secure via inter-library loan. The point being, another bit of science that elevated temperature is a legit factor.
----
Hot bath-related headache: four cases with headaches occurring after taking a hot bath.

Müngen B, Bulut S.

Cephalalgia. 2003 Oct;23(8):846-9. No abstract available.

PMID: 14510933 [PubMed - indexed for MEDLINE]

Thank you Bob!  I'll get those from the library. That should help...I don't know why she's being stubborn now...a few months ago she was really pushing for me to try oxygen, really hoping it would work for me- and now all of a sudden she's not too keen on writing the prescription for it.  :-?

I told her I was going to the meet n' greet this weekend and would be trying it out with the real experts, and that if it works for me that getting a script for it would make it really clear under the tag rules ("uses portable oxygen".)  I even printed out Batch's research paper and gave it to her.  

I'm starting to get the feeling that they want to wash their hands of me. :P

Purpleydog- yes, thank god, the art building has a huge elevator.  :)
And I've gotten hit from carrying around heavy stuff, so I try not too- and my boyfriend has a "thing" about getting to push the cart and load the groceries... ;D

BTW, thanks for the great dialogue on this, everybody...some great points have been raised, and it has made the issue clearer.

What's frustrating me now is that it's not so much whether or not I meet certain (rather vaguely written) criteria; my docs haven't even argued with me about that.  I've even heard from some people who get disability from CH.

It seems that now it's come down to good ol' bureaucracy- no one wants to put their name down on the document.  They want to pass the responsibility on to a neurologist, even though they know I have no insurance. So it's no longer about whether or not I have a need, it's about who has to be responsible for asking the government to meet my need?  *thhbbbbppppttt*  :P