[Erin524]

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.

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.

[doydie]

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.

[Erin524]

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.

[LoveCats]

Sorry you are experiencing this. 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.

[SallyC]

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.

[Erin524]

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.

[msbluis]

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?

[Erin524]

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.



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.

[Rsdawareness123]

Originally Posted by Erin524

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.

[P
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.

Please look into Ehlers Danlos syndrome it could be the reason for your hyperextending knee. Hope that helps!

[Erin524]

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?