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I hate this stupid AFO brace!
been driving ok the past few days. Still hadn't gotten my hand controls.
Today I went to a new physical therapy thing. It's at one of the hospitals, and they call it a "gait and balance clinic". That was great. Till the end and the PT therapist told me to walk around their hallway until I couldn't do anymore. :confused: what the heck? I did that, and then was too <swear word> tired to walk back to my car. I had to sit in the waiting room for a bit. Then once I got downstairs, I had to sit in that waiting room for a bit. Driving home was interesting. I kept feeling like my foot wasn't finding the brakes or the accelerator. Made it home without crashing into anything. I was resting, and was fine until my mom started having a temper tantrum about being "trapped at home". So, I let my dad talk me into taking her down to the Village Inn on the corner. I don't have to get out on the busy streets to get there. Just have to get thru the neighborhood. Halfway there, my foot slipped off the accelerator. Then I couldn't find the brakes. Good thing I was going really slow. (popped it into park, and pulled up the emergency brakes) I got to the restaurant, and realized that my leg was so tired, that I didn't think I could get into the restaurant. I could barely get out of the parking lot for the strip mall. I asked my mom if she was going to be mad at me if I took her home. She said she wouldn't be mad, but she said it in a grumpy voice. Halfway back to the house (driving really slow, with the hazards on), she started in on being trapped at home all the time. So she lied about not being mad. omg, gee mom. So sorry that my serious health problems are getting in your way. And so sorry my dad's congestive heart failure is also causing you problems. We didn't complain like this when my mom was in a coma with West Nile virus two years ago. It would be nice if she could try to at least act like she loves us, or at least tolerates us. Really think right now the way she acts that she hates both me and my dad. (she verbally yells at him constantly) I'm sitting here, very quickly becoming totally disabled, and she's whining because she wants to go get pie at Village Inn. (she doesn't drive) She has no compassion or empathy. I'm sitting here crying my eyes out from being so tired, and peeved at the MS for causing me problems...and all she can think about is that she's mad that she didn't get to go out to eat. I drove home, and the whole way there, I was saying a special word that starts with the sixth letter of the alphabet the entire way. plus, it's about 103 degrees outside (heat index...I think the actual temp is more like 97) I'm stuck in the house too because of the weather. Does MS ever get easier to deal with? Because if it's always going to be this bad, I'm just going to stay in my room and hide from the world. |
So sorry you had a day like this. I remember you going through all those long days worrying about your Mom. Does your town ahve a delieverys ervice. We have a company that has contracts with a lot of the restaraunts that you just call in the order and they pick it up and deliver to your door. I don't think it is a chain company, just a start up by a couple of guys who saw a need and figured out how to do it.
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that's the thing. She doesn't want to eat at home. She wants to go out.
I was really too tired, and never should have said "ok" to taking her out. |
Sorry you are experiencing this. :hug: I wish our family members were more understanding of our limitations.
When I went to PT last year my legs were so tired when the session was over. I had to sit in the car for a while and let me legs recover before I could drive home and even then they were still a little weak so I had to be careful driving. :( I hope the PT helps and you recover some strength and balance. |
Erin, tell your Mom that you must stay out of the heat, as it makes
your illness worse. And, sometimes, it's not all about her.:rolleyes: |
I'm trying to stay in the cool today. My dad wanted me to drive him to a doctor's appointment earlier today. I ended up telling him I couldn't do it. My right leg just feels so weird.
He just got home, and wants me to take my mom to get something to eat, because they missed their meals-on-wheels delivery today. I'm not sure if I can do that either. My right knee seems to be ruined. It's stuck in an hyperextended position when I walk now. Which I'm pretty sure is because of the <swear word> <stronger swear word> AFO. My knee is starting to hurt too. Wish I'd never put that stupid thing on two years ago. |
The AFO and the heat
Erin,
The heat is your enemy. And the temp doesn't have to be in the 90's or 100's, either. MS problems like weakness and loss of bladder control can be made worse by even a two degree rise in your body temp. No fun. On which leg do you wear your AFO? If it's an AFO like I had that looks like a ski boot, you should not be driving - for your own, your parents' and the other drivers on the road's safety. You admit you are having knee problems you attribute to the AFO. If it's your right leg, that tells us you WILL have problems driving ... and are unsafe to continue it. Do you think if you were required to pass a physical driving test making sudden, tight turns (YIKES! There's a large tree limb in your path) or abrupt stops (OH No! A 5-year-old ran into the street after his ball) or parallel parking (because the "straight-in" parking and handicap parking was full) or having to back in reverse around an obstacle, (CR*P! A big delivery truck has broken down blocking your path), that you could do it quickly, safely and easily? Your parents are wrong to pressure you into driving them. Do you think they under-estimate your disabilities? Maybe it's time you have an honest, humble, non-confrontational talk with them (again?) as to how you don't ...no...can't drive them. It's common sense; you can't be responsible for their getting hurt, or worse yet, killed by driving when your leg isn't functioning correctly. Sometimes Mother (or Father) don't always know best. Sometimes when they'd like a simple meal, could you offer to heat up a can of soup? Or make a grilled cheese sandwich? It's cheaper than a gallon of gas nowadays! My mom was great at combining Campbell's soups to add flavor and texture. One can Cream of Chicken (or Cream of Celery, Cream of Mushroom, etc.) with one can of water and one can of Chicken Noodle. (or Chicken and Rice, or Turkey Noodle) makes plenty for 3, maybe 4 people. There are plenty of other options using Tomato Soup with Vegetable Soup ... What do you think? |
I have an appointment to go for another session with the people who hand out the certifications for hand controls next week. When I did the first one, back in May, I wasn't driving at all.
I had to start driving a few days before my dad went into the hospital because his heart failure meds weren't working right (or he hadn't been taking them correctly). Reason I started driving is because my dad was more unsafe than I am. He had insomnia so bad that he hadn't slept for a week straight. And I actually think it had been longer than that. He was a step away from having a heart attack. They managed to get him all stabilized, and they tweaked all the heart meds he's on. So he's doing better now. I was driving fairly good when I started back. It just seems that as soon as I start doing ok. It'll stop, and I suddenly get worse. It's taken so freaking long to get anything done. Doctor's appointments all seem to be months out before I can see someone. The whole time I'm getting worse and worse. I totally blame that stuff on the health system being fiddled with by all the politicians. Before that, I never had problems seeing a doctor. Now it takes months to get appointments. (and I'm not trying to make this post political. Just kind of explaining things) If they'll let me have my hand control certification next week. I'll be going directly to one of the hand control installers here in Omaha and getting my car converted the next day if I can. Considering taking a taxi tomorrow to the PT place. Just in the past three or four days, my knee has been getting worse and worse. I don't want to risk my car. Hopefully my dad won't freak out when I tell him that I'm going to spend $30 each way ($60) to get to PT and back until I can get the hand controls installed. My dad is currently "homebound" for insurance reasons or something after he came home from the week he stayed in the hospital. He's got home health aides visiting him tomorrow. Otherwise I might have asked him to drive me to PT. I'm getting really angry at the first doctor who put this brace on my leg. If I had known that once I put it on, I probably wouldn't be taking it off. I would never have put it on. They didn't tell me that I'd have it forever. I thought I would be able to get rid of it someday. I only just found out from the new physiatrist (3rd one) that I would be stuck in it. Pretty sure it's wrecked my right knee. This is the brace I have. It's articulated (has a hinge), and I'm allowed to drive with it. It's just been in the last week or so that my knee has started to feel like it's about to snap off. I've been trying to get into a PT program since last March. Kept getting sent to places that were not paying attention to me and what I needed. I pretty much had to use my neuro to get the new physiatrist. Explained to the neuro that I could tell I was about to have problems, and no one else seemed to be concerned about it. He watched me walk into his office, and told me that he agreed with me totally. Got me an appointment with the best physiatrist in town. At least I didn't have to wait an entire month or two to see this guy. It was maybe two weeks. Still took longer than I wanted to get in to see him. So glad he agreed with me too, and then actually listened to what I wanted. http://img.photobucket.com/albums/v1...psa33be3cc.jpg I'm pretty sure that if my knee wasn't hyperextending, I would not be having the problems that I'm having. I think I actually need a new style of AFO. Maybe one that supports the knee some. My right hip is starting to hurt because of the way I'm walking. I want to try to get things changed or fixed before it ruins my hips and back along with my knees. |
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I was actually born with something called Nail Patella Syndrome.
I don't think that had caused me much problems, other than my kneecaps floating around in a way they're not supposed to. But, I never had problems walking from it. I didn't even know I had this until one day in the late 90s I decided to google something. I'm missing the fingernail on my left index finger. Been like that since I was born. (it's actually called a split nail. I have two little tiny bits of nailbed that little bits of fingernail grow out of). That's one of the big signs of NPS. I just thought it was weird, and didn't think it was going to cause me any problems. I don't know if it has anything to do with what's going on with my knees right now. I haven't even been officially diagnosed with nail patella. But, I have some classic symptoms of it. The fingernails is the big one. Plus, I can trace it back in my family to my paternal grandfather. It's genetic, and it doesn't skip generations. I know that I have it, my dad's younger sister had it, and two of her grandkids have it. I never knew my grandfather, but I have a couple of photographs of him, and he's got the classic elbow problem that some people with NPS get. (he couldn't straighten them). My dad's sister-in-law said that she thinks my dad's brother had it. She said he had problems with his elbows too. It affects more than just knees, fingernails, and elbows. It's a connective tissue disorder. Never pursued a diagnosis for it, because I never thought it would cause me any problems, and my dad didn't think it was a good idea to let the insurance companies know about it. (preexisting conditions) Maybe it's why my knees are being so weird now? Putting that stupid brace on maybe exacerbated a potential problem? |
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I simply HATE that you drive. You are what I consider a menace on the road. I wish there was a kind and polite way to tell you to stop. I am appalled that a woman of your intelligence would get behind the wheel of a car. It is not even the potential damage you may do to your car, yourself or your parents. It is the potential damage and death you can cause to anyone or anything else in your path. I cannot believe you and/or your parents think your needs are above property of someone else or the killing of an innocent in your way. Even at a slow rate of driving, you are a killing machine. It is criminal behavior. You okay with killing someone so that you can drive? I voluntarily gave up driving when I was faced with the same challenges you are encountering. There for the grace of god go I. Call your motor vehicle department and learn about the curb to curb service offered in your area. Taxis are more expensive but at least you do not run the risk of KILLING. What needs to happen before you stop? What accident has to happen? I do not ask this last question lightly. I really want to know what damage has to be done before you stop. |
I voluntarily gave up driving, too, Cyn. I'd rather make the decision myself than have someone tell me I can't drive.
It's not an easy thing to do but I have family close by that helps me when I need it. We also have a medical transport van that can pick you up and take you to a doctor's appointment and bring you home. I've never used it but it's nice to know there are accommodations for those who have no help. |
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The way I look at it is that I wouldn't want to be driving around someone like ME. :o
Plus the stress and anxiousness can't be good for my well being, either. Once I got used to not driving I was fine. Now, I actually enjoy not having to worry about it. There's worse stuff that can happen. ;) |
I do miss the mobility of my past life, the ability to just get up and go and no need to plan ahead for doctor appointments. I miss the times I would just head into the Sonoran Desert and drive through the National Park and look at the mammoth cacti. I miss being able to turn the radio on loud and sing to my favorite songs.
I miss being the one who gave others a ride when needed since I was the one with the car. Now, I do not pay much attention to the road but rather the scenery along the way. I remember vividly going to the Department of Motor Vehicles and watching an old gentleman crying when he was denied a renewal of his driver's license. I remember the frustration of being behind a person who was driving too slow, thinking how that driver had no business being on the road. I read in the newspaper about an incompetent driver accidentally driving into the business front and the crash killing a patron inside. I have read about a driver accidentally driving into a home and the walls crushing a person inside. I hope Erin is reading my words and hearing my heartfelt plea to sell the cars and use the money for curb to curb bus service or taxis. No more gas, car upkeep or insurance. And anyone else with the remote anxiety of driving. Stop before you have to live with the reality that you should stop driving. MS is bad enough without the guilt of what you know has to be done. |
I feel like I'm doing positive things.....like reducing my carbon footprint, reducing air pollution, reducing the crowding on the roads, reducing my stress ;) and helping make the roads a safer pace for others. Plus, I now have no car payment, no car insurance payment, no car upkeep and no gas to buy! :Rich:
I think about my kids, my daughter-in-law and my soon-to-be granddaughters. I definitely don't want someone with compromised driving abilities on the road with them. I would not want them on the road with someone like ME!! When my son was a patrol officer on the road (he's inside the office now which makes Mom very happy :winky: ) he'd tell me about people involved in wrecks who really didn't need to be driving......and probably lost their driving privileges due to said accident. Such preventable disasters. :( |
Even though I do agree with all of what you two are saying and chose to
quit driving myself, I don't like the preachy tone of this thread. Enough said, I think.:confused: Perhaps make the plea portion of this thread a sticky to keep it in at the top of our minds. I'm sure there are others here who may be taking a chance to drive, out of need or desire. I know that I had a few close calls, before finally deciding that to stop driving, was the right thing to do.:eek: |
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I'm getting hand controls in a couple of weeks (would have been this week if the driving instructor hadn't canceled my appointment last week). I'm going to keep on driving. I've been trying to get better, and get back to some way of having a normal life. I feel like all of my friends in real life have abandoned me. (I only had two) My parents are older and they're having a lot of health problems. I'm the only one here to help them. I have a sibling. When my dad was sick earlier this summer, and I hadn't started back to driving yet, you would think she would have offered to give me and my mom a ride to go see my dad in the hospital, or ask if we needed anything. Like food. She never once called us. Never offered to go shopping for us, or drive us to the store. She didn't even call to ask how my mom was doing. So, I have a feeling I won't be getting any help from her. Especially after my parents are gone. I have to get things figured out to where I can try to take care of my parents and myself on my own. So, giving up driving won't be happening. Don't make this thread a sticky. I'll ask for it to be deleted then. |
I wish you all the luck in this Erin. I understand your frustration in it. You are still a young person and confronted with an impossible situation.
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I just had to put my dad in an ambulance because he woke up at 3am to go potty, and discovered that he couldn't see out of the lower part of his left eye.
Ended up calling an ambulance for him. I decided that an ambulance would be better for him, because if it's a stroke, the hospital would know that he's coming, AND he'd have a bunch of paramedics with him on the way there. Didn't go with him because my stupid walker takes up so much freaking room. Was going to send my mom with him against my better judgement (not good to let her go alone, because she'll tell them wrong information for a lot of stuff). She couldn't climb up into the ambulance, so the paramedics left her here. my aunt (the nurse) said it was probably better that we didn't go up there because if he is having a stroke, they'd be doing all sorts of scans on him, and we'd just be stuck in the waiting room. And that's not very comfortable. I'm going to wait till later this morning, then I'll go up there with my mom in a taxi. I'll be taking the taxi because that hospital is at the limit distance that I'm comfortable driving. I'll end up having to walk around up there at the hospital. Which means I would be too tired to drive home. Even tho they have valet parking, I don't want to have to deal with walking from the front door of the hospital down to the ER if I'd followed them up there. (valet parking isn't open yet anyways) So all of you who were preaching that I shouldn't be driving. Happy? I know when I should not be driving. Edit He didn't have a stroke The ER called me. It's something called Central arterial occlusion. |
Good for you Erin, and I agree that many of us know when we can drive and when we can't, it is a personal decision as long as we aren't hopped up on pain killers or drinking away our pains. Even if we are struck with sudden weakness it is still extremely possible to safely move the vehicle out of the flow of traffic even if that weakness takes our ability to apply the break, say at an intersection crossing, vehicles are still equipped with emergency breaks, that if slowly applied and not yanked on like your 'drifting' act in the same way as the pedal break.
Conscious drivers know this, and honestly the complaints Erin has described concerning pushing herself to drive are no different than any number of potential vehicle malfunctions, only in this case it was physical malfunctions with the driver, but at no point was her mental accurity compromised. When many officers complain about people continuing to drive past their ability it is those with dementia, cataracts so bad they cannot see clearly or when filled with so much anxiety that they simply cannot react, when it comes to medical, and then of course there are still the druggies (legal or not) and the drunks filling our highways. I still drive, proven by being in an accident last week, but it wasn't me who caused the wreck, it wasn't one I could have avoided either, even in tip-top perfect health, and the lady who hit me couldn't even blame MS or even a cell phone on simply not paying attention. Accidents do still occur even without any medical or drug induced impairments. And even after the accident I still choose to drive, a manual transmission without hand controls at that. What has to happen? What cost has to be paid to the public at large for me to get off the roads? Nothing... Answers both questions, when I go out to my car and can't engage the clutch, DH gets a text to pick something up, or mom gets a call to take me somewhere. But then I can do that. However if DH is out of town, DM is tied up at work and there's an immediate need for me to get behind the wheel, I still do, forcing the leg through pain and weakness to engage the clutch, utilizing cruise control whenever possible and yes every so often dropping to neutral and using EB as my breaks. I'm not driving erratically, I'm still perfectly capable in reacting to kids running out into my path (neighborhood's feral children love playing chicken with the cars) and pretty much until my body tells me it's my limit, or the doctors/DMV insist it is my limit (which I will likely stop long before then) I will continue to drive. And honestly I'm a bit amazed at the preachy quality this thread had taken, as we all know, or should be aware, that MS strikes us down in any numerous ways, and just because some symptoms might be similar that one is experiencing doesn't mean that they necessarily had all the contributing factors another experienced when making the tough choice to give up what remaining independence another had. Though Erin I both applaud you for getting a taxi when needed, but do think you could be a bit more firm with the folks, though that's mostly by the sound of their age and health conditions, you've reached the unfortunate point of now needing to be the parent, try not to spoil them too much :p |
MS can and does cause, in some, a form of dementia. Some of our minds are
not as quick thinking or reacting as before Ms, age or both. I was driving fine, no problems, for 30 some years, after MS SX started. It was in my late 50s/early 60s when I started noticing my weaknesses and my lack of immediate reaction to normal driving situations. Then I started driving only to and from the grocery or the Doc's/Dentist's office, a friend who lived close....etc. No HWY or long distance driving. In 2006 the renewal of my license was due and I hadn't driven since DH passed in 2004. I debated with myself whether or not to renew. I believe I even discussed it here or BT. I simply let my License lapse. It was the best decision for me, at the time, to make. I cannot tell anyone else when that will be the right thing for them to do. We are all different and progressing with a different type of MS and at a different speed. You will know when!!!:eek::D :grouphug: |
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Many people know when- after it is too late, after they have caused damage to self, others or property. Sadly these are the same people who do not take responsibility for anything and blame outwardly for everything. |
Miss J!
I got lucky, I scraped the car side only. on a bridge as a truck was too close on other side (seemed to me). But my 10 year old daughter was in car. What if she got hurt! The Girl Scout meeting we HAD to go to didn't seem important anymore. Took my self off the road. In 10 years only a very dubious "emergency" has happened- a school thing. A Friend quickly picked me up. You can live without a car. New strategies get worked out. |
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