I have an appointment with my PCP today, and I'm wondering if I would be wrong to ask about getting a handicap tag? I have been having increasing issues with my balance, not to mention terrible back pain from walking too far. I rarely go into a store without taking someone with me, and I always use a cart to help with my balance and lean on it when my back starts to hurt, and standing in line at the checkout can be more than i can bear at times. So by the time I get out of the store, I'm in so much pain that by the time i get to my car I'm nearly in tears. My main concern is falling this winter when the parking lots begin to get icy. This happened to me last year and I was by myself, and I'm worried it will happen again. I'm not in a wheelchair and do not have a cane or walker, and some days are not as bad as others but my husband is insisting that I should ask. However, I kind of feel guilty that if I had one, I would be taking the spot away from someone who can't walk or the elderly. I usualy always try and find a spot close to the door, but most of the time, we can't find one. My husband even got a ticket one day when he pulled up in the fire lane while waiting for me so I didn't have to walk too far. Any thoughts? Is this wrong, or should I look ask my Dr. Another thing I'm afraid of is them saying if I'm that offbalance or whatever, that they will take my license away. I'm usually ok to drive, unless I'm having a dizzy day, and my Husband does most of the driving anyway. Any advice would be greatly appreciated. Thank you(:
Please do not feel guilty about it. I got one and it has been helpful in so many occasions. Remember to look if your PCP gives you a temporary or permanent. I got a permanent one . They don't ask a lot of questions at the BMV about why you are getting it. Good luck>
Thanks for your support:) I worked up the nerve to ask him today and he said he understands and thinks it's a good idea especially with the upcoming icy season which did not work out so well for me last year, lol. He said all I have to do is go down to the Secretary of State(DMV) get the form and drop it off at his office and he'll fill it out for me. He said for now it will be a temporary 6mo tag, then it will be reviewed after that possibly permanent. Just will give me peace of mind knowing I can use it when I need it, and perhaps some freedom to go some places i normaly dont go because of the walk. Thank you so much for your kind words, makes me feel better that I'm not the only one with our condition asking for it. Thanks Liz, hope you are doing well;)
I have one. Some days I also have problems. There is nothing to be ashamed of or feel bad about.
You have to be safe and live the best possible life you can with Chiari.
I'm glad he gave you one.
My vascular surgeon gave me one five years ago for some major leg issues, which then led to neuro issues, and then the Chiari was just the icing on the cake to make it permanent.
It's really hard reconciling 1. Looking healthy on the outside, so you should be fine inside 2. you aren't able to do what an average person does without spending at least a day to recover 3. people will look at you funny. Eventually you do, though. It's better to consider your health before your pride-so good on you for asking!
Thanks Tracy and Suzanne for your support. I'm a little worried about using it the first time, i can only imagine the dirty looks I'll get, but it's not like I'm going to be hopping out of my car and running inside, lol. I'm sure it will have to be something to get used to, but when it comes down to it, it's gonna keep me safer and give me a bit more freedom in my life, so I'm not going to let the comments or stares get to me.
I think you should get the handicap tag and use it if there are no open spaces close by. Just the fact that you are worried about getting it means you are NOT taking advantage. It’s ok!
Jenn
Hi Kristi,
You should not feel any guilt whatsoever about using a handicap placard! They are intended for anyone who has a medically verifiable condition that makes walking difficult or presents safety issues. If you struggle or worry about falling in parking lots and in stores and your doctor supports this, then you certainly should ask for one and use it! You are no different than a person with a broken leg and cast or an elderly person who gets tired easily but still drives and shops!
Don’t worry about the stares and questioning looks. Just think about it as these people are trying to protect your need as a disabled person to have a space when you need one. We all know and see way too many occasions where a young, healthy person hops out of a car after putting what is likely a parent or grandparent’s placard out and putting it on the mirror. It has gotten so bad in our area that the police are much more willing to come and verify that the user is the legal owner of the permit and fine them if they are using someone else’s permit.
Lots of folks with legitimate permits have conditions that you can’t see. Don’t worry about it. After my surgery I did not have a placard but emptying my cart and loading my car was impossible because of the lifting. I regularly stopped people in the store line and parking lot and asked if they would give me a hand and found that most people are happy and very willing to help. I was continually amazed at how kind strangers can be and sometimes I even had an opportunity to explain a little bit about Chiari. I am glad people keep a watchful eye on these spots. It helps keep others honest and keeps the spots open for people like you who need them!
Just my opinion but don’t beat yourself up over this one! You are deserving. You know in your heart when you need to use it and if you have a day when things are really good, you can always choose not to use it 
I am glad that your doctor was so supportive about it!
Kate
Yes. This sounds like my life. Except i no longer drive cause my eyes dont focus correctly. Im being treated for migraines Now. I dont like being handicapped
I dont get dirty looks most the time. Only from old old people. My husband tells me not to jump around even sometime when i have a rare light footed moment, but i ignore it all and do what i feel is right. My doctor even told me i didnt need surgery and never had chiari, but i know what i have suffered with. I think surgery helped, but feeling like shit all the time i try not to look to deep into where i lack pain cause the pain always cycles thru everywhere. And where did my fibro myalgia come from if i didnt have chiari. Doctors dont even look cause they dont believe. We are very lucky we found out we have Chiari.
I think you have every right to ask for a tag if it helps you in any way to be closer to the door. If it can prevent
a poential accident, or any potential suffering that you may experience... then ABSOLUTELY, you should feel ok to ask
for one! Who is anyone to say that your condition is less severe, less important, or "less handicapped" than someone else..?? Having a chiari can be considered an "invisible" handicap because others may not see or feel your suffering..
but having a tag could possibly prevent you from becoming MORE handicapped!
Thank you all so much for your support:) I had been putting off asking this question, but you all have made me feel much more confident. For anyone who has been putting this off for fear you would be met with scrutiny, I think Thirsty1 made an excellent point, if this small thing can help to avoid potential injury or prevent us from becoming more handicapped, just go for it. I had a nasty fall last winter, that I personally feel has made my pain and symptoms much worse, and if this helps me to avoid any more damage then I am comfortable with my decision. I know it won't prevent me from the many falls and collapses I have at home, but one of my biggest fears is falling in public again. Thanks again, don't know what I would do without my Chiari family(:
I may consider doing the same, Thank you for posting this discussion, I had the same dilemma. As for people who can't mind their own business, I say ignore the looks, & as for comments, politely respond by saying..you should not presume to know somebody's medical condition by looking at them for 10 seconds. You don't know a stranger's story nor should you judge. have a nice day & count your blessings that you don't need one!!! Maybe they will think twice before they butt in next time. Its 1 thing if someone does not have proper tags, it's quite another to play medical judge in a parking lot!!! You have much better things to worry about!! Can these people see cancer , heart disease, or seizure disorders? I have no time for people who have no sense to think before they verbally attack a stranger, I doubt you do either
I really am shocked that you are able to get handicapped parking in America with Chiari. Chiari is not a registered disability in the UK so you can’t even claim disability benefits. Doctors just consider you to be weak, and tell us to just get on with it here.
Has it always been that way in the US or did someone fight to register Chiarians as disabled?
Claire,
In order to get a handicapped parking placard in many states in the US, you only need to have your doctor sign off on the state forms that you have a medical condition that causes you to need one. They have to describe your condition but something like " has difficulties walking and balance issues" is all the Department of Motor vehicles requires because they leave it up to the doctor to determine if the need is justified. So, you can get a temporary permit if you break your leg, or have surgery, etc. and the doctor signs off on a request for a permanent placard if he or she thinks you have long term need for one. So, there is no list of approved conditions. The state does not make the determination-the doctor does. It is not in any way connected to our Federal program that determines eligibility for disability payments, insurance, etc.
I am sorry it is so much harder to get this in the UK. Maybe it is because we have so many ridiculously large shopping centers in the US with an overload of excess parking spaces instead of your beautiful green cities!
Kate
Jessica- I completely agree with you. Who's to judge another person by simply looking at them. I like the way you think(:
Claire- I think the handicap parking tag works a little differently here. I'm not sure, but I don't think they go by whether or not Chiari is a disability. In my case, it is due to my balance issues and back problems(tethered cord) which causes me difficulties getting to and from my car safely. I'm not sure if my doctor is required to say I have Chiari or just the medical reason for which he feels it's necessary. If that were the case none of us would get one because most do not know what Chiari is. It's a shame that seems to be the issue in the UK.
I havent had that bad of problems but dont feel bad about using it. The people who give the dirty looks and make a big deal out of it are the ones who have some type of discrimination. they just dont want to think that someone can be handicapped while looking perfectly fine. As for the older people, its usually because they think they should be allowed to park closer because of their age. the onlg reason I know this is my experience from working retail for 15 years. I have seen and heard it all. Dont fret about it. What matters is you have a right to park there whether others think you should or not. If they happen to give you a dirty look then just turn the other cheek and ignore them. :-) and remember....we are all here for you.
I was given one by pcp
I was actually wondering the same thing for myself. I've been having drop attacks for several years. This is actually what led to the diagnosis of chiari malformation. I have fallen in grocery stores a few times (quite embarrassing). After a fall, I am usually very weak. There is absolutely no warning whatsoever before I fall. I don't feel strange, dizzy or faint I just collapse straight to the ground unable to reach my hands out to protect myself or anything. Anyway, one time I actually fell as soon as I got out of the car to go in the grocery store. I was getting out of the passenger's side of my mom's car in a handicap spot (she has a handicap sticker because of limited mobility after a back surgery). After the fall, she told me I needed to get a handicap sticker because if I had been by myself parked in a non handicapped parking space and had fallen and hit my head knocking myself unconscious, nobody would've seen me. Of course I did not bring this up to my doctor. But since then, I have suffered two concussions as a result from drop attacks and am now thinking this is probably a wise decision, but for some reason I feel guilty and can't bring myself to ask. I am only 35 years old and I look healthy to others. I don't want others looking down on me.
I was actually wondering the same thing for myself. I've been having drop attacks for several years. This is actually what led to the diagnosis of chiari malformation. I fallen in grocery stores a few times (quite embarrassing). After a fall, I am usually very weak. There is absolutely no warning whatsoever before I fall. I don't feel strange, dizzy or faint I just collapse straight to the ground unable to reach my hands out to protect myself or anything. Anyway, one time I actually fell as soon as I got out of the car to go in the grocery store. I was getting out of the passenger's side of my mom's car in a handicap spot (she has a handicap sticker because of limited mobility after a back surgery). After the fall, she told me I needed to get a handicap sticker because if I had been by myself parked in a non handicapped parking space and had fallen and hit my head knocking myself unconscious, nobody would've seen me. Of course I did not bring this up to my doctor. But since then, I have suffered two concussions as a result from drop attacks and am now thinking this is probably a wise decision, but for some reason I feel guilty and can't bring myself to ask. I am only 35 years old and I look healthy to others. I don't want others looking down on me.