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  • echobird
    Ok so I started taking the ampyra and even with that I'm having issues. At times I can walk some but limited then other times I can't walk at all. Then I haven't been having my spasms as often as before and when I get them they don't last all day like before. But my neurologist says that it's from dystonia from the spasms to the left eye and face. But I feel she's got it way wrong. Because like when I had nursing and PT coming to my house and getting my spasms the physical therapist was able to get them to stop by stretching out my legs and spine. And he and the orthopedic surgeon says my spasms are from my spine. They all read the MRI and the report. But as to my eye problem is that I was only able to open my left eyelid partly and the pupil was going to the far left while the right eye was looking straight forward. Anyone ever go through that. Also they said that I've been having mini strokes they believe from small brain bleeds. Would that cause that. All that I know is that I'm so tired of this MS going from ok to the point I have to be picking myself up from the floor or having to always have to depend on others. My sister thinks I need to have my in home care the same and my nephew thinks the same. I think there right in some ways but wrong too. Now also there's days I can get into the shower and then there's days I can't or even get dressed on my own. It's like a yoyo. And just hate it.

    Oh a side note is that with the spasms they get worse when riding in a car when sudden braking and bumps in the road even at times just riding my scooter around the yard.
  • maria1
    Hey bird, the car the car the car, keep a record of when you are in the car and then see if your problems get worse after a car ride. I spent two and a half hour in the DDS on Tuesday plus an hour round trip and I still want to cry today, and I have done nothing since Tuesday except watch tv and play on the laptop. When we first moved to MO we thought we would 'see the usa in our chevrolet' and I always felt awful all the time. I stopped getting in the car except for doctor visits and grocery shopping and I am almost human. 

    In the car you are putting tons or pounds of pressure on the spine! of course it is going to fight back, and when you are in the car are you tensing the muscles in your legs? Stay out of the car for two weeks, one week to recoup from the ride and one week for the spine to get as close to normal as possible and  then see how you feel, and please tell me, instead of keeping it a secret.

    Yeah being home bound sucks but not as much as being in pain, choose which you prefer. 

    Dont change too many things at once because you will not get to know what is affecting you negatively. Slowly so you can observe the changes. 

    Rest you body now, unless you have a professional chauffer and a luxury vehicle with the best shocks and perfect roads being in car is a beat up the body experience. When you were young your muscles were young too so they reacted with precision to repair themselves, now they just creak back to maybe a little better, you aint no spring chicken no more, be kind to yourself, send 'them' to the store. Too bad doctors dont make hoouse calls anymore.

    AND, your nerves are yelling too.

    Go ahead take two weeks off and prove me wrong!
  • echobird
    Actually even the numbing around my left ribs and arm and pain are way worse when I'm upright in my scooter. And I live in the desert and if I ride my scooter out in the yard it gets to the point at times I just cry out in pain then other times I can be OK. Then at times I can't control my legs correctly and I can't stand up straight from my legs to my spine I can use a walker sometimes then other times I can't. Seems like the ampyra does work even with my spine at times then other times it actually feels like not helping at all just getting so frustrated. I just want to be able to take care of myself and not have to have people have to help me.
  • maria1
    The emotional side of ms is in my mind, far more devastating than the physical. We all have images of who we should/ought be and when we do not fit that image our 'hearts' ache and that pain is sometimes far worse, I have a measure for everything, as long as i can still wipe my own butt I am perfect, ha ha, and as long as I can avoid pain I am in heaven. What threshold have you written? Can you still feed yourself? Is there any time you can dress yourself? 

    I am not making light of losing independence, I no longer am safe as a driver, havent been for more than twenty years, yeah I drive machines on the farm but there is nothing in my way but barb wire fence and I have gotten caught in that. I am losing more cognitive abilities, going stupid instead of senile, expensive stupid, forgetting to put oil in the motors so they seize, did that to two machines already, Backed off a four foot retaining wall because I forgot it was there, mow over rocks because I forget to look.

    Yeah, I wanna take care of myself too, like the Rolling Stones said, 'You cant always get what you want', so we gotta make ourselves feel good about what we got or it aint worth hanging around. Can you cut a tomato? easy aint it, well without the hemp oil I cant, so boy am I happy I can spend all my money so I can cut a tomato. Food, I have been cooking since I was seven and now, most dinners are either burnt or raw either because I forget to check it or it looks like maybe it should, I am not a big fan of raw eggs and burnt toast.

    Be careful now, it is the time of longer nights and it is easy to feed the blues, try not to fall into that trap. For me, as I have often said, if I am not in pain, all is okay, or acceptable, or tolerable.

    Can you tell me anything good about your life? Any pluses you can name? I see you still got your hair, my photo on connections is when I was 65, or is that not your hair, ha ha.
  • echobird
    Well I can't really walk to much most of the time or stand long enough to cook dinner my legs and back give out I fall several times a week. Then some days I can get into the shower and out on my own and use a grabber to get dressed then others I can't. Have my own hair that's a plus. Somedays I can't stand up to pee I have to sit on the walker and scoot into the bathroom and pee sitting on the walker seat then there's the spasms they can come on a dime just like my face and left hand. Actually my left hand is usually messed up and I will actually wake up with my face messed up. Don't trust myself to cook because of the way I get. The good thing is I own my own home mind you it's still a long way from being fixed up but it's coming along. Have my cat and 3 doggies and a cat that likes to bite me sometime wanting to play. But before the ampyra I was always in bed because the way my muscles are without it I get too weak to even get myself up from laying down even with the medicine half the time. I still end up peeing myself and the bed as well. My list goes on my family tried to have a friend of there's try and talk me into staying in the nursing home might have been better in some ways but I missed my animals and family and my home. They think that I don't care but the fact is if I didn't care about them then I wouldn't put up with stuff or always worry about everyone. Not that I can do much for them. And if I didn't care half the stuff they get wrong wouldn't bug me as much.

    it's a no win situation. I do have this one guy staying with me Joe. I think sometimes when he's been drinking he starts being into me a little I don't give it any thought really then this kid Daniel that stays in my motor home. So at least I have people around that if I'm really bad off I can count on them there good people.
  • jasonprestovfd
    Echobird, 
    please don't take me the wrong way, 
    But for the love of God brother. You need to think of what is the best thing for you in the long run. I dont want you to surrender, but I truly want you to do the best thing for you.
    if your situation isn't  working for your best interests, than it's ok to retreat and regroup a bit.  If you can let go of some of the "family drama" and get better care than that's a win. 
    please do right by you. The rest will work itself out. 
  • jasonprestovfd
    BTW 
    I tried Ampyra too...
    I wish I wouldn't have, hind site is 20/20. I would have dragged my zombie leg and dropped foot for the rest of my life if I wouldn't be in the same pain as before back surgery #1. I started physical therapy & steroids to try and get the pain to subside, heres hoping it works. 
    But my leg & foot work better now. 
    It seems to me that it is a mix of a double edged sword and the grass is greener on the other side...
    Sometimes both sides suck...
    good luck and please do what is the best thing for you in the long run.
    As a firefighter,  I want to tell you. 
    sometimes you loose the contents of a room, but you save the house....
     
  • maria1
    When people are young children they have no choice or way to avoid abuse that is not the case for adults. Why would you go from one alcoholic to anothr and think they are good for you?

    It seems you are trying to justify having daily abuse and then want to feel good. You appear like those people that whip themselves, that making yourself bleed is the only way to live.

    You may want to call a crisis hotline and speak with someone who can give you a better perspective than we can because we keep offering you a happier life and you choose the muck. You are stuck in a groove so deep that you do not see the sky. I am losing my calm getting angry even, STOP abusing yourself, stop justifying their abuse, and stop believing your life cant get any better. Choose a better life for yourself. 
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