I am really wound up about this one right now. My aunt (who is in her mid 60s, has several health problems and multiple joint replacements) & my 2 female cousins (3 out of 25 of us are female!) and I are going to do an aunt & the nieces kind of getaway in San Francisco. Getting a hotel suite and going around and doing theater, museums, etc.
I, since I live here, was putting together the hotel possibilities. I literally spent hours calling hotels (including ones listed on Access Northern California's website) trying to find an accessible suite. I was shocked at how bad it was. There were NO accessible suites in ANY hotel in the Union Square area. When I questioned managers or however high up I could get as to why there weren't any suites that are accessible, they were like...we're required to have a handicapped room. We make handicapped rooms available. Use that. My explanations of needing a suite was met with everything from rudeness to disinterest. When I asked if they don't have accessible suites because they assume people with disabilities don't have any friends...they basically said yes in several instances. They make rooms for 'a handicapped person and their attendant'. (Which of course is my other hotel pet peeve. When El and I travel we want an accessible room with a king bed and usually they have rooms with twins or doubles, not kings. Many places seem to shudder a bit when I push about the fact that we sleep TOGETHER...like they don't want to think about a gimp having a girlfriend/boyfriend/lover/spouse/whatever).
In general I also find this in theaters, music venues & movie theaters, basically anywhere that there is some type of seating.
You can go with one person, which the venue usually identifies as 'an attendant'. You can't have a GROUP of people. You can't hang with 4 or 5 friends. At some venues they've given a 'special' tag to me and my partner & threatened to throw us out when we tried to switch out my partners sticker with other friends so they can at least come hang with me one at a time (makes me feel like I'm in ICU or something).
These venues see no issue with everyone else having to be separated from me. WTF makes people think we don't have friends?
I'm curious...what have you found in this arena?
20060704
a year gone by - 1 year follow up at TCI
It is almost 2 months since I went to New York for my 1 year follow up. It has super slipped by in a crazy haze of coping. El cut 'bout 1/2way through his middle right finger and had to have surgery and I've had to manage to feed us at the very least and really that is about all I've managed to do. And even with that, some nights have been cereal for dinner. I'm so exhausted.
First off I'll say, I've been having valsalva headaches again since September and some other symptoms. Difficulty with urgency & bladder emptying...and recently some trouble with balance and walking and weakness in my legs and feet...generally not going in the direction I'm aiming...hitting doorways and the like.
When I went back to NY to TCI for my appointment it was kind of odd at first. They had me see another doctor in the building that from what I could read up on about him was a movement disorders doctor. Seemed plausible for the symptoms I still have hassling me. But he doesn't really do movement disorders stuff anymore. He pretty much just implants devices like the neurostimulators. I'm sure they are good devices and all, but they are not really great around other electronics and computers...you have to turn them off...and where am I most of the day?. And there was just such a sales pitch feeling to it. I'd be interested in hearing how you are doing with it if you have a neurostim.
So, then there was the MRI. They'd said I was going to get a new head, cervical & lumbar spine MRI...but they only did head and cervical. When I saw Dr K at TCI it was very enlightening, but could have been less intense. He spent a lot of time looking at my old films while I hung out and squinted at the 2 MRI prints up on the wall noting that things didn't look, well, quite right. Then he had me walk up and down the hall a little ways. First on my heels, then on my toes. While he held me up so I didn't fall down. Life sucks walking on heels, there is some relief of that sucking on my toes. He does the usual neuro poking prodding and (with me anyway) requisite smacking my knees, ankles and elbows with the reflex hammer until they are satisfied that they did their best to get a reflex outta me.
So a long appointment slightly shorter, the upshot is that they he thinks I have a tethered cord. When they lifted my head up 2 inches and fixed it in place, it stretched my spinal cord out, instead of just lifting it up along with the rest of things. It does make sense that my sacral-illiac joint is subluxing hourly since surgery. They don't know if it was already tethered and they missed it, or if it got tethered when they lifted my head up. Saddly though, my brain is pulled down further than before surgery. Spinal cord trumps brain on the strength factor. So I'm on diamox to lower my spinal fluid pressure. I go back in about 2-4 months from now and they'll do a bunch more tests. Detailed scans of my lower back, probably another lumbar puncture to check my spinal fluid pressure etc. Once we know if my spinal fluid pressure is ok or too high and see what the diamox has helped and I've thought about it a bit I guess we'll decide if I need to have surgery to release that tethered cord (if it is for sure what the problem is).
The exam fucked me up so bad that I mostly slept and laid around until we flew back to Oakland. It sucked cuz we missed seeing a lot of people. So if I didn't see you in NY, I'm sorry.
So the bad news is that there is something else still wrong and while a lot of things are better since surgery, there is some stuff that is the same or worse. The good news is that the symptoms that I'm still having are attributable to something that can be seen and looked at and ...technically something can be done about. So there we are.
First off I'll say, I've been having valsalva headaches again since September and some other symptoms. Difficulty with urgency & bladder emptying...and recently some trouble with balance and walking and weakness in my legs and feet...generally not going in the direction I'm aiming...hitting doorways and the like.
When I went back to NY to TCI for my appointment it was kind of odd at first. They had me see another doctor in the building that from what I could read up on about him was a movement disorders doctor. Seemed plausible for the symptoms I still have hassling me. But he doesn't really do movement disorders stuff anymore. He pretty much just implants devices like the neurostimulators. I'm sure they are good devices and all, but they are not really great around other electronics and computers...you have to turn them off...and where am I most of the day?. And there was just such a sales pitch feeling to it. I'd be interested in hearing how you are doing with it if you have a neurostim.
So, then there was the MRI. They'd said I was going to get a new head, cervical & lumbar spine MRI...but they only did head and cervical. When I saw Dr K at TCI it was very enlightening, but could have been less intense. He spent a lot of time looking at my old films while I hung out and squinted at the 2 MRI prints up on the wall noting that things didn't look, well, quite right. Then he had me walk up and down the hall a little ways. First on my heels, then on my toes. While he held me up so I didn't fall down. Life sucks walking on heels, there is some relief of that sucking on my toes. He does the usual neuro poking prodding and (with me anyway) requisite smacking my knees, ankles and elbows with the reflex hammer until they are satisfied that they did their best to get a reflex outta me.
So a long appointment slightly shorter, the upshot is that they he thinks I have a tethered cord. When they lifted my head up 2 inches and fixed it in place, it stretched my spinal cord out, instead of just lifting it up along with the rest of things.
The exam fucked me up so bad that I mostly slept and laid around until we flew back to Oakland. It sucked cuz we missed seeing a lot of people. So if I didn't see you in NY, I'm sorry.
So the bad news is that there is something else still wrong and while a lot of things are better since surgery, there is some stuff that is the same or worse. The good news is that the symptoms that I'm still having are attributable to something that can be seen and looked at and ...technically something can be done about. So there we are.
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