You know when you go into a PT place, and they start asking questions about you, so that there's something to actually have a conversation about, aside from just doing the PT? That's basically what they would do when I'd go in. they knew that I was really into this British television show, and so I'm sure they'd get me talking about it, so that the conversations while I was there wasn't just talking about the PT.

I noticed that a few of those girls had a tendency to kind of pick on me a bit in reference to my liking the star actor of the show. The kind of picking on that I would get when I was in high school. Where you're not sure if they're doing it good naturedly, of if they were starting to get to where they were actively being kind of nasty about it. I was ignoring it a lot, but with a few of the girls there, it did start to get kind of annoying.

The last couple of months, I'd noticed they were all a bit distracted when I was there. About two weeks before I quit the PT, they told me they'd be moving at the end of february. (I quit PT just before Valentines day) It was basically just a sports medicine PT place, not really a place that catered to people with MS.

If my insurance hadn't changed, I'd go to the spine hospital here in town that has an excellent PT group. (fancy swimming pool with the movable floor, huge state of the art PT gym) That place is now out-of-network for me. So, I have to go see what stuff the new physiatrist will have access to.


I'm going to try to do more stuff at home with exercise. I've been doing some remodels in our house, and my bedroom was one of the rooms that got remodeled. My bedroom now is a lot bigger, and it's got a nice spot in it where I'm bolting a grab bar to the wall, so that I can hold on the the bar and try to do exercises. I have some serious plans for my little exercise spot in my room. (right now I'm using my bathroom because it has nice grab bars in it to hang onto)

A lot of the exercises that I have planned involve just walking in place, and other exercises that I can do while hanging onto a grab bar. Balance things. I also have those rubber thera-band rubberband strips for some exercises. I have weights. I also have an exercise bike. Right now, I am so deconditioned by everything, and not having energy. I just need to do something to get energy to be able to do all of the stuff I want to do.

Really hoping the new physiatrist will be a bit more helpful than the last guy.

I am impressed with anyone who has the patience for PT. I have needed it twice but stopped after the first session. I will be in big trouble if I ever have an urgent need for it such as after a knee replacement surgery. I am such a wimp when it comes to pain from exercise and I don't know why, but it feels as though they are hurting me. All here who have described PT and how it hurts but then you get better is probably good for me.

Wiz,

"Short term pain for long term gain."

That's what I tell my patients, although PT doesn't have to hurt to be effective.

With love, Erika

Physical therapy hasn't ever really hurt me. Even when I had something going on that was painful (the frozen shoulder I had before Xmas)

The last batch of PT that I did, I could feel this flare going on during it. Because instead of things getting easier with exercising and doing the PT, stuff started to get harder. It was really weird. PT usually helps me. But it didn't seem to do a thing for my MS issues this last time around. The PT they did on my shoulder at the same time went great tho.

Just got back from the brand new physiatrist.

I like him. He Rx-ed me a new AFO, for the left leg. (I have one on the right).

He told me about the medicine Ampyra, but then told me he wants to give me a cheaper medication that's compounded, that's made out of the active ingredient in Ampyra. (4-Aminopyridine) Mostly because the Ampyra costs $1000 a month, and 4-Aminopyridine only costs $60 a month. I have to call my neuro and tell him about the 4-Aminopyridine, and if he says it's ok for me to do it, the physiatrist said the neuro could Rx it, or that he would.

That exercise bike thingie that I bought earlier this year, and probably mentioned in this thread before...I showed him a picture of that. He said it looked like a good thing. Told me to make sure I'm holding onto something like a desk or put it in a doorway to have something to hold onto while I'm using it. Since it kind of looks like a unicycle more than a bicycle. Way ahead of him on that. I'm installing grab bars into my bedroom for it. I just need someone to carry it downstairs for me, and put it together.

While we were on the subject of compounded medications. I asked him if he'd ever heard of LDN. He had. He's never prescribed it, but he's heard of it. Said that he's been following the research. He's not planning on Rx-ing any tho unless there's more research. He said he might be willing to look around to find someone who would Rx it tho.

I'm going to have him help me get my hand controls for my car.


and as I'm sitting here, I've just realized that their receptionist never asked me for my insurance card when I got there. Hmmm...wonder what's going to happen when they try to bill me? Maybe I can send them a scan of my card in email?

I actually liked this doctor a lot more than the old physiatrist. So, I'm pretty pleased.

I have an appointment with the AFO making people for next week. So, I guess my dream of being able to wear real shoes again someday is out the window again. Now I'll have matching footwear/legwear again tho. My neighbors are going to give me some hairy eyeballs when they see me walking around outside now.

My bedroom remodel is going nicely. My wall is moved. I finally got drywall on the walls yesterday. I'm still waiting for a door tho. They still need to finish the drywall with mud, and sanding it down, and then painting it. I ordered the grab bars I wanted for my wall from Amazon. Got them yesterday. Exactly the same as the fancy ones I bought for my bathroom a couple of years ago. (lot cheaper than going to Lowe's to get them too. yay Amazon Prime!)

My room is pretty huge now. Bigger than I thought it would be actually. I picked out paint for my walls (blue) and I've got plans for hanging some mirrors that I've had since I was a kid, and I'm going to put up pictures of my old dog on the walls.

I actually had two walls moved. The original wall that I wanted to move. And then the contractor is moving my linen cabinet from the wall it was on it the hallway, and he deleted part of the wall that the cabinet was connected to. Which is now going to be where my little exercise area will be. Deleting that wall and moving the linen cabinet to be over next to my desk is actually a great idea. Since it gave me that extra bit of room. It should make my desk look bigger too. I won't have to walk around the linen cabinet now to get into the bathroom. It's now a straight shot into the bathroom.

I can't wait till the linen cabinet is done. Since I've been storing all my clean towels in laundry buckets for the past week. Plus, I really want to see the paint on the walls.

Maybe something good is finally happening here. Seeing as how I've woken up on the wrong side of the multiple sclerosis the past couple of days. (did an oral prednisone taper the past week, and it's made me very exhausted and a bit screwy in the head the past day or two.)

Glad to see an upbeat post from you today Erin. Your room sounds lovely. But oh that sanding of the mud. The dust!:eek: Hope they cover everything.

Your new doctor sounds good. It sounds like he takes the time to really listen to his patients, not just take care of them. He treats the whole person not just the affected area. Great asset to have on your team.

Yes, color sure makes a difference. From drab to fab!

As soon as I'm done checking my email, I'm shutting the computer down and throwing a blanket over my desk.

I just got a laptop a couple of weeks ago (my dad handed down his MacBook Pro) so, I can take that upstairs and have a computer to play with if I want to do stuff that I can't do with an iPad while they're working on things today.

I have an appointment next week with the orthotic people to make the left leg AFO. Actually not looking forward to that, because now I'm going to look like the bionic woman or something. Oh well. It's not any different than having to wear glasses. It's something to help things. But, having to wear at least 3pounds of metal on both legs (apiece...and yes, I did weigh my AFO once) is probably going to be annoying in the summertime.

But, the old AFO probably has a broken spring or two in it, so it needs to be fixed.

That doctor yesterday was really kind of cool. The old one had never suggested any medications to me. The new one said that he's given 4-Aminopyridine to MS patients, and spinal cord injury patients, and it's helped a few of them. It doesn't cure them or anything, but he said that for a few of them, the MS patients, it's given some help to them for some things.

I can't remember where I read some stuff about Ampyra. I think someone here on the forum mentioned that they'd been taking Ampyra and that it was helping them some. So, I know that Ampyra or the 4-Aminopyridine might be helpful in some way. I'm kind of willing to try it. My fear of side effects is not as big as my annoyance at the walking issues I've had lately.

Erin- we discussed it here (or there) as "4-AP." Best I can recall.;)
ANN

I knew I'd read something on it in one of the MS forums I go to.

Right now I'm frustrated enough with the wobbly walking, that I'm willing to try the 4-Aminopyridine.


and in other good news, the drywall people just did some work on my room and the guest bathroom. (taping, and some mudding) yay! So much closer to a finished remodel. Hope I get a bedroom door soon.

Think I'm going to cry.

I called the neuro, and asked about the 4-Aminopyridine. He told me that it doesn't do anything. He said I'd be wasting $1000 a month if I got Ampyra, and if I did the 4-Aminopyridine, that I'd be wasting my $60 a month. Said it wasn't worth it.

So, I'm kind of ticked off right now.

He did suggest that I call my regular doctor back, and ask for another taper of oral prednisone. So, I just did that.

I am really not in a good mood at all right now.

Kind of hoping I don't have any construction people coming today. Because I just don't want to deal with anyone at the moment. Just really tired, and seriously frustrated by all sorts of stuff right now.

Erin,
Did your neuro refuse to let you take it? If you feel strongly about trying what the physiologist recommended, what's stopping you from giving it a try?

I say this because both my neuro and my PCP frowned on me trying the LDN, but after some persuasion, the neuro finally gave me prescription for a month. The rest is history and I wouldn't be without it. I've been on LDN for almost 2 years now. I even told the neuro how much it has helped me; especially with cognitive function. He has since changed his mind about it...at least for me. In his last letter to my PCP, he said that the PCP should carry on with the prescription when the one that I have runs out.

With love, Erika

He didn't say "no, you can't take it". He was warning me off for the cost of the Ampyra. I might just ask that physiatrist if I can take the 4-AP anyways.

I just feel like I'm having the worst week this week. (worst year) I'm just so tired at the moment. I feel worse almost every day now too. Starting to wonder what the heck is going on that things just feel worse all the time now.

I called my regular doctor about getting another prednisone taper, but no one has called me back about it yet.

like I said, I'm so tired that I can barely think straight.

Erin,

I've been taking Ampyra for 3+ months and it does help some people.
For me it was a miracle and has helped me with my arms, shoulders, wrists, fingers, neck and cognitively, as well as walking. At the end of my first 2 months I went 3 days without using my cane.

My neuro signed me up for the Ampyra program and I received 2 months free to see if it worked for me. It did so I turned it into a prescription.

My insurance has Ampyra listed as a Brand Name Formulary drug and covers it at $30 or 30% of negotiated price up to $200 per 1 month supply. Then I signed up for Ampyra's co pay assistance. They pay $160 of that $200 and I only pay $40 per month.

Without it I would have had to quit working after my Thanksgiving attack.

Since Ampyra is willing to give you two months free to try I don't understand why your neuro isn't signing people up to try.

From what I understand the compound he suggested for $60 is not always identical in efficacy and can vary from batch to batch which is why Acorda (sp) Therapeutics turned it into a sustained release tablet.

Good luck, I hope you at least get to try it. For the people it works for it is invaluable.

I might ask the physiatrist if he'll Rx it. He might not since the neuro wasn't really on board for it.

I'm kind of intrigued by it.

My new pcp has been a big help. Yesterday I had a lot of neuro symptoms and I thought I would be getting a phlebotomy, but there was a confusion at the lab as to what hematocrit I needed to have in order to have the phlebotomy. This was partly due to the old pcp leaving and the bad communication of the lab with the doctors. I had my eyes rolling back in my head when I looked at the computer, pressure in head, and weak legs. I knew this was probably because my hematocrit was too high (due to Polycythemia Vera) and that it would cascade into affecting my neurological weaknesses. My counselor said to call the pcp office and tell the new pcp what was happening. I got an immediate appt. and he changed my hematocrit level for phlebotomy to a little lower, so I was eligible for a phlebotomy today. Then he got me into the ATU because the lab probably would not have an opening this week. Not only this but he explained in detail to me why the neuro affects came about in PV when I not only had platelets too high but then got a too high hematocrit--it caused reduction of flow in the small vessels in the brain, thus less oxygen. He understood the whole shebang and even could explain it simply and completely. He not only gave me the phleb but he gave me half a bag of dextrose solution over 3 hours to fight dehydration.

I had been holding myself together with the low fat Swank diet, getting very rigid with it, trying to fight the neuro effects, but it finally got to the point where I needed to do something else. The other doctors have been lazy about doing anything, but this person was right on the "stick". So perhaps you wonder what this has to do with MS. I don't know but I know the diseases fit together and exacerbate one another if one lets them get out of hand. I am very grateful for getting a good doctor who understands things so well and will do something about it. I've certainly had my share of slow-to-act doctors as everyone on the forum has.

He sure sounds like a keeper Mariel.

I'm sorry that Sx's had to get to that stage though. Hoping and praying that you will be feeling better soon :hug::hug:

With love, Erika

So glad you received the treatment you needed,
by an alert and compassionate Doc. :hug::hug:

I've been better today, and I think the treatment yesterday helped. Thanks for your thoughts on this. I even took a walk today, as we had windy but not too cold weather, clean air, and not too bright sun.

started a new oral taper today. Would have started it last night, but the stupid pharmacy took forever to fill it.

So tired today. I don't feel like the steroids have done anything for me. If they hadn't had the normal really nasty taste to them when I took them this morning, I would have wondered if they gave me the wrong prescription. (I checked, they're oral pred) So far the only thing it's done is make me feel hot and sweaty.


My contractor called this morning. He found the door hinges that I asked for that make the doors swing open a little further, and gives a person two extra inches to get into a room. Pretty happy about that, since he either didn't hear me, or I didn't emphasize enough that I wanted a 36in door. He put in a standard 32in door.

I ordered six grab bars yesterday for the guest bathroom from Amazon Prime. It's not overkill. I have five grab bars in my bathroom that this contractor built for me a couple of years ago. I wanted six. (wanted four bars in the shower, he only put in three. Other two are just outside the shower in front of the toilet)

I actually have eight grab bars that I bought. Got the other two last week. I bought them from Amazon Prime for my bedroom. Did it as a test to make sure they were the same style that I already had.

I'm putting one of them in my bathroom next to my bathroom sink. Couple of weeks ago, I was combing my hair in front of the mirror while standing up, and I almost fell when I closed my eyes to comb my hair forward. My left hand immediately went to the wall when I did that. I decided I needed a vertical grab bar there. Seeing as how I have a contractor here, and he's got a drill and a stud finder, I'm going to take advantage of that. The eighth grab bar is going in my bedroom, where I'm going to put my little bike chair thingie.

I kind of figure, if I think I need a grab bar somewhere, I'm going to put one up. Our decorator looked at me funny, and she thinks we have too many grab bars already. Said if we ever sell the house, the grab bars will turn off buyers. (I don't think so. I'm trying to make our house handicap accessible for me and my parents. Not for prospective buyers 20yrs from now)

She's not the one living here, and she sees it from the perspective of a healthy person. I'm looking at it from the perspective of someone who always feels like they're going to fall. I'm also looking at it from the perspective of someone who's seen a relative fall and seriously injure themselves.

Excellent thinking, Erin!
I have a few grab bars too, four. That enables me to use the shower. Two of them were put in when Irv was alive, so he could pull himself upright from his wheelchair (the wheelchair I sit in a lot now). If I wanted to use the tub in the other bathroom, I'd need a couple more bars in the walls of the tub, to assist getting in and out. I understand that these could slow the sale of the house, but who's selling a house these days? My house has lost l/3 of its value because of the economy.

I have grab bars in my bathroom and a sturdy wall mounted clothing rack in my bedroom that doubles as one. The ones in the bathroom double as towel racks and match the décor, so other than being thicker around than regular towel racks, they could be taken for them.

I don't really much care if the grab bars would affect the resale value of my home. The other way to look at it, is that the house is set up for someone with disabilities, so it doesn't need to be modified. For the right person, the grab bars and flush to the floor door sills could be considered value added features rather than negatives.

I think that it is more important that our homes serve our needs and help to keep us safe, rather than what the modifications might do to resale value. One of the shut-ins that I help has a rail that goes all the way down her hallway from the kitchen to the bathroom, and another one that runs along the wall of her bedroom. It lets her get out of her wheelchair more, while still feeling safe because she is unsteady on her feet.

I certainly feel better about you having as many grab bars as you feel that you need Erin; as well as everyone else here installing any such assisting devices in their homes. Being safe is more important than anything.

With love, Erika

If I were to ever sell my home, I'd advertise it as partially handicapped
Accessable. The right people will come to look. I think that the home's
value should increase, not decrease.

I put my first grab bar in the shower this weekend and made my hubby order a second! It's the kind for balance not full weight but it's better than the towel bar for getting in and out of my tub/shower.

I might even start shaving my legs regularly again :D

My bedroom drywall is almost done, and I think we have enough paint leftover from when we painted the other room the blue color. So, I might have my grab bar on the wall where I want it soon in my room. And then the other one in my bathroom. And I get my door finally this week.

My box-o-grab-bars that I ordered came yesterday. I have to open it up and make sure they're the correct bars. Hope they are.

They're finally going to start on the shower floor tomorrow in the guest bath. The drywall in that room took a lot of work. Something like 5 layers of drywall mud. There were a lot of holes the guy had to fix from where they did the destruction to take out that crappy bathtub.

The tile guys were here today to figure out where the water in my parent's shower was leaking from. They found some pinhole leaks in the grout that they're going to fix. I asked them to check my shower, and yep...I had a couple in there too from where the grout dried weird or something.

The water wasn't leaking into anything other than the shower pans. And the shower pans are working just like they're supposed to. But they needed to fix the grout. Because you can get mold and mildew into the pinholes. They're going to cut out the old grout, and put new grout in.

I just washed my hair, so I've got an electric fan in my bathroom pointed at my shower to try to dry it out some. (they told me to go ahead and use the shower tonight)


I'm starting to get kind of excited now about my room being finished soon. I figured out another thing to do for some do-it-myself physical therapy. I'm going to hang up my dartboard out in the family room. I used to LOVE to play darts. (soft tips, not the pointy sharp ones that hurt if you get hit).

When I thought about hanging up my dartboard last night. I realized that you need balance, and upper core body strength. Plus, if you throw like I used to throw. You have to bounce up a little bit on your feet. (I can't describe how I used to throw darts. But I was good at it). I think if I start playing darts, I can use it as physical therapy. Plus, my best friend said that when she comes over, she'd play darts with me. We used to do that all the time when we were in our 20s, but at bars. (I was always the designated driver. Which is why I always won the dart games)

Putting up my dartboard is probably the thing I am most excited about at the moment. That and my door.

I've been doing another prednisone taper. Started that saturday. Today was drop down day. I feel a little bit better this time around. My legs are still really really tired. That's scaring me. But today, I tried to spend some time just standing. And walking around the house. Hoping that I can build up some muscle again. Just trying to not do too much of that and get too tired.

My dad gave away our exercise bike to my brother-in-law. Hope he comes and gets it this week. I need to move some furniture around, and that bike is in my way for the furniture move in the family room. (I need the space for my dart throwing!)

I just can't wait for all this to be done. I love doing remodels, but doing a remodel in the middle of an MS flare? Not so much. Plus. I wanna play darts.

I want that grab bar on my wall, and my dartboard on the wall. And I want the big plastic tarp that's covering my tv off of my desk. I've been having to fold the tarp up, so I can use my computers, But, I can't exactly watch the tv from my bed. Last night I just turned on my tv for the noise when I went to bed, and set the sleep timer.

I have to get to bed. I woke up this morning at 545, for no reason. (umm...steroids?) That would have been ok, if I hadn't fallen asleep around 130am or 2am. I could just never get back to sleep this morning. I'm tired now.

All you guys talk of grab bars reminds me of a time I was in the bathroom in Walmart. They have a big handicapped bathroom and I used it. Was going to be doing some icky stuff that I preferred not doing it in the big multi-stalled bathroom if you get my stinky drift. So I was glad to see they had grab bars on both sides of the commodes and it was a large space, plenty of space for a wheel chair transfer, large door. They had thought out everything. But as I am leaning on the grab bar, cause I'm tired, I can tell it is extremely loose. Um, that doesn't work for a grab bar. So when I am done I go to customer service and tell them about it. I can tell that didn't care one stinkin bit about it. So I ask to speak to the store manager. Oh, he was very concerned. He told me that he would get some one on it immediately. So OK, happy with that. But as we are out that evening I tell my husband that I want to check the bathroom out to see what progress had been done. Nothing. I big stinking nothing. So another manager is on duty. He was Johny on the spot also. I repeat the same thing the next day. I'm sure by this time they are tired of seeing me. Still nothing had been done. I had taken pictures by this time and was ready to use it if I had to. Finally after a week they had it fixed.

Walmart managers aren't the brightest bulbs in the string of Christmas lights. I used to work for Walmart.

I hate it when I go somewhere, and they've got things set up to be handicap accessible, and if you look at how they did it, you realize that it's not really "accessible".

My pound of cheese is this... Went to Docs Monday in my minivan w/ my Turny
lift seat... No problem and Doc said I was healthy as a horse.:) Starting home,
however was another horrible story.:eek:

The Turny seat, at first, wouldn't go. DD checked it out and tried it again and,
finally, got it going. I got on for my ride up and into the minivan and it wouldn't
stop. PANIC as I was being squashed into the dash.:eek:. DD got it stopped just
before my legs were broken.:eek:

She called 911 as I cried in pain. She calmed me and I tried to take deep breaths
and stay calm, until the fire/parameds/police? got there. How embarrassing.:o

They had do remove bolts and stuff, so they could move the seat back, manually
and verrrry slowly. As it moved back, I noticed that my legs were not broken,
just sore. I didn't need to go to the hospital..Yeaaaa.:)

DD's new BF is a Paramed and he met us at the house to help me out of mini
into house. I'm OK, a little sore, but the good Lord saved me from the big one.
I had a little PTS and slept away most of Tuesday and was too tired to even
post about this.:(

Passing the cheese............:grouphug:

well, that's scary. I was thinking of trying to get some of those for my parent's minivan.

Is the manufacturer going to take care of it?

Holy cow, Sally! :hug::hug::hug:

What a horrible thing to have happen. I'm so glad that your DD got it stopped. Those things can exert enough lift pressure to definitely break your legs...and probably the dash too. Yikes!

Are you OK now? I bet those legs are complaining and it surely shook you up to have that experience. Sure hope that some TLC brings the legs around and that you get some help with repairing the lift to put your mind at ease.

What is the plan for the lift? You need to have confidence in that thing before you use it again.

Sending prayers and mega :hug:s that all will be well with your legs, the PTS and the lift.
Do you have a gallon of wine to go with the pound of cheese?

With love, Erika

Oh my goodness Sally! How terrifying!

So glad your daughter got it stopped and it didn't break your legs! Is there a recall on that model maybe? The company really needs to take care of this.

Lots of healing :hug:'s

Feel better!

Oh Sally, I am so glad you are ok sweetie. :hug:

Ok my big cheese has to do with my B12 shot. They gave me vials and syringes and I have never used anything but a pre-filled syringe. I couldn't get the medicine out of the vial and into the syringe, even after watching how to do it online. So I'll still have to go have the nurse give me the shot this week.

Wiz,

Try pulling a little air into the syringe and put that into the vial. That will usually allow you to get the fluid out of the bottle the first time. It also helps to warm the contents of the syringe in your hand for a minute before injecting; less of a sting that way :winky:.

With love, Erika.

WOW Sally. What a day. I have no idea how the device works but would turning off the car engine stop it? I sure hope the company who made it fixes it at no charge to you. One little question though. Were the paramedics good looking????:D that was nice for them to go home with you and make sure you got out OK.

Doydie, the Parameds didn't follow me home, my DD's BF is a Paramed and
he met us here at home..:). Thank you all for your concern. :grouphug:.

I'm doing a bit better today. The mental anguish is worse than the physical
pain in my butt.:D. The pain is diminishing and they just called to tell me,
there will be no charge.:) They're lucky I didn't sue!!!! If I were stronger,
I would. They almost killed me.:eek:

Erin, it's a dandy product. Anything can malfunction.:). That's why there
are so many recalls on stuff.:eek:

I be Fine!! How are all of you?:grouphug:

my bedroom has a door now...but my special hinges are nowhere to be found on the new door, or my bathroom. I'm a little worried he forgot the hinges that widens the doors.

really hoping the contractor hasn't forgotten the hinges. Kind of counting on those hinges to make the doors wider.


I just got my AFO adjusted, and sent off a left shoe to get an AFO made for the left leg. So glad that I saved my old sneaker from the last pair of shoes. It not only matches, but it gives me something to wear for the week while waiting for the new AFO to get made. I got new springs in the right leg AFO, and things feel weird. Trying not to trip while I get used to it having been adjusted.

The guy that runs the prosthetics place let me try the electronic gizmo thing on my leg to see if it would work. I was disappointed. The one he has in his office is the Walkaide. It didn't trigger the nerve. But, he said that the swelling that I have in my legs, and possibly the steroids that I'm on, were working against me. Something about the fluid from the edema can block the signals getting thru. Not sure what it is about the steroids that would hold it back.

I thought maybe it was the electrode pads that he was using to put it on my leg to see if it would work. I could feel the zaps, but it was like TENs unit zaps, and not very strong. I thought maybe he needed to put fresh electrodes on it to make it work. He didn't.


hoping that once my room is all finished, and I can get my bike set up, and start exercising, that I can get some of the edema to go down, and build up some muscle. I really think the edema is from not exercising.

Hopefully I won't need a Walkaide, or the Bioness electronic gizmos if I can do that. He told me the Walkaide is something like $5500. Which isn't what I saw online. I saw prices starting at $2500 for the Walkaide.

I miss my old insurance. My new AFO is all totally out of pocket for me now. That's $800. I have yet to meet the deductible. (not even halfway there) I just paid my physical therapy bill, which also was out of pocket. My poor credit card, and it's $2200 charge on it. My credit card is screaming for me to not spend anymore money. I have to behave now. Hope the MS will stop making me spend money for medical issues for awhile. Stupid higher deductibles.

I didn't know what "pass the cheese" meant, but now I do. It is what you ask for when you are mega-frustrated? I do love cheese, and I could easily eat it in a binge, but I don't dare, as it would really torpedo the Swank diet. I do eat 2% cottage cheese, even that is a stretch on the Swank, and an occasional little piece of Cheddar. I could live on dairy and bread. None of that dairy sensitivity or gluten sensitivity for me! But of course I don't eat a LOT of either. I had half a turkey sandwich on whole wheat bread with Pesto mayonnaise (canola base), tomato and cucumber, at the Natural Foods Co-op tonight coming home from an appointment. I adore Pesto mayonnaise, which I believe is made from the pine nuts which grow around here. I have a bunch of Pinons in my yard, which require constant watering due to the drought.
Sally, those automatic movers, whatever you call the thing which threw you into the dashboard, can be dangerous to pedestrians. Yesterday while in the supermarket, I was meandering toward an aisle when a woman on one of those was backing up in my direction. I guess she was turning around. When she got fully turned, she started moving precipitously in my direction. I backed up, step by step, backwards. It was rather difficult to do this fast enough, with my numb feet. She looked at me as if to say "You're normal, you ought to just get out of my way". I was laughing inside, but also saying a prayer of thanks that I managed to back up fast enough not to get my feet run over. She stopped just in time.

When I use the store scooters, I go really really slowly, because the Normals just do not pay attention. Kind of peeves off the Normals if they're behind me.

Was in Lowe's the other day, and a Normal person had a fit because as I was scooting past their shopping cart that they left parked across the width of the aisle, I reached out and moved the cart over as I went past it. How dare I touch their cart?! Like I wanted their Keurig machine, and the leaky bag of potting soil they had in their cart. (I already have a Keurig machine)


and on a non-complainy note...

Walking around with my right leg AFO all nicely adjusted, with new bouncy springs in the hinges. Walking is so much easier at the moment! I can now tell there is something actually going on with the left side. (I was hoping it was just the right side causing me to walk funny). With the thing all adjusted properly, I can feel my knee wanting to go where it's supposed to go, and not hyperextending. The left knee wants to hyperextend, so hope when I get the lefty AFO next week, that'll help fix that problem.

I also feel better right now, after the new physiatrist last week, AND the AFO guy today both telling me that I had excellent range of motion in my ankles.

When I get my dartboard hung on the wall, and can start using my dartboard for DIY PT, I'm going to see if I can do it barefoot. So that when I have to stand to throw, I'll be using my own muscle power for the standing, and the throwing stance. Hoping that I can keep that range of motion going.

I love that Erin, the Normals!!! Maybe they need to make a TV show called the Normals. Curious to see who they deem as normal though.

My youngest daughter is y guardian when I am in a motorized scooter in a public place. She doesn't go with me if I ever use one in a store since I rarely do but when I am on vacation or at our local big amusement park she is right there. Well actually she is about 2 feet ahead of me making sure there is no one ahead of me that I may run into since some people are totally blind to one of these motorized scooters. I mean at night I have the headlight on and sometimes I am using the horn but there are kids that re running in front of me, crossing my path. I am glad that once you take your fingers off the forward button that it completely stops. Of course that may make the person that is following me run into me. So my family really protects me, some one in front and some one in back and usually the grand kids on either side.

My mom always ends up with the scooters that don't stop on a dime. And she tailgates. When I've been walking in a store, I'm afraid to walk in front of her. I have scars from getting run over by her.

When we've both been in scooters, she still tailgates, and she insists on staying behind me. Drives me nuts!

Try to get her to go in front of me, so when she runs someone over, she gets blamed.

I can barely feel my feet, but if a scooter ran over my feet I could feel it, I am afraid. So I give scooters a wide berth. But that woman in the store the other day was driving so recklessly that avoidance became a non-issue. I just had to back up quickly. I couldn't have turned around quickly enough to run away from her without losing balance, I expect.
Usually I look like I have good balance, but in a challenge like that I would probably fall to the side. I am amazed how little I've fallen (not at all) since I fell down my nephew's stairs 3 years ago, and broke my patella. I am now super-vigilante and recognize danger.

I do find that my meandering walk, as one intern in a hospital called it where I worked when in college, is increasing. The intern who observed me said I should get checked for MS or other neuro difficulty. At that time it was the last thing on my mind....I had health problems but I was unaware of a "meandering walk". Then much later, when I had vertigo (not from MS but from "sand in the ear" syndrome) I was sent to a "balance physical therapist" to get my balance recovering after I was cured of the "sand in the ear" by a fancy maneuver. She also said my walk meandered, typical for MS, in her opinion, and she had MS. But she said I had compensated so well that she called me a "somatic genius."