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You need to explain what exactly you mean by a hyperreflexic muscles .Im on nothing i have stiffness and slowed muscle reflexes . Spastic tendencies go with both Hyperreflxia and hyporeflexia . If i take a muscle relaxer i will be too subdued to do any function (not in control) But also if i do take them i'll be so out of control i will have a hard time keeping my balance . as it is i can get by with some things without using my cane . Picture someone who is so tranquilized they cant function other than lie down . The main thing with us is Muscle Control not Spastic or not Reflexic ,its Muscle control and balance . If you mean by achey Cramps or stiff so much they may cramp . and mine were that way in the beginning ,lots of cramping , I have'nt had a cramp in Months Thanks to Quinine ,for me its just some Tonic Water for some its a prescription of Qualiquin ? Dont ask me why it works ,it just does .I cant tolerate Baclofen Geo
 
I can say that the emg will show weakness for you will not be able to recruit the muscle, I have done more research than should be humanly aloud. Hyperreflexes are a upper motor neuron problem and are a hallmark of pls, they are just as they sound HYPER, and when the doctor hits your reflexes, they will be quick and jerky, go along with clonus.
 
Thats Me ,Knee flies up to the Sky . But Then how come some can tolerate Muscle relaxers and some cant ?
Like ive said ,i beleive its a Muscle Disfunction rather than a Muscle Loss . Geo
 
Geo, I always think you described Upper motor neuron problems better than anyone, when you said we feel weak, ibut it is the dysfunction, that make's us feel weak.t is absolutely the muscle dysfunction causing the problem, the UMN sends mixed up signals and they all get crossed, and we then feel the effects. The spasicity and stiffness can make us feel weak, through in the clonus, and we get the perfect storm. I do not get why some can take the relaxers and some cant? I wonder that often? More unkowns for us.
 
pls weakness

If you look on medical sites pls is described as--------progressive muscle weakness caused by muscle spasms.
The damage is lesions/neuronal loss in the motor cortex and lateral colums of the spine resulting in a hyper state of the body with spasms,spasticity,clonus,myoclonus,hyper reflexes etc. In spastic paralysis the muscles/body alternate from spastic/stiff to weak/flaccid, this is because the spasms/spasticity weakens the muscles from being in prolonged contraction or hyper state for too long and eventually everything crashes under the strain resulting in weakness and flaccidity............only to start the process off with spasms/spasticity again.
i have limb girdle muscle weakness caused by 9yrs of spasms/spasticity etc.
when i am more spastic i have a more spastic gait,stiffness in limbs,clonus increases etc but after bad episodes of spasticity it causes the oposite to happen,my gait is more a waddle as my hip girdle is very weak,muscles are weaker and flaccid/limp.
its a continuous cycle and is destructive to the muscles.
 
meds

people tolerate meds differently. baclofen has been my life saver,i would definatly be in a wheelchair now if it were not for baclofen. i can not tolerate codine based meds or anti-inflamatory meds and i am highly ellergic to morphine.
take care
caroline:-D
 
You ask ,why some have different reaction to Meds .Why can some not tolerate Alcohol ,and some can tolerate a little ,and yet some can drink lots of alcohol ?I think our individual systems are much different in terms of how they metabolize and process chemicals . Like some can get wired on 1 cup of Coffee and some drink a whole pot and dont get wired . Geo
 
Hello Farmgal,
Well I certainly am not qualified to help anyone at this point as I am usually the one asking all the questions but I can pass on to you what I have been told by our Neurologist. We recently had an appointment on Thursday and my husband has had considerable progression in the last 4 months. The neuro also identified muscle atrophy of the hand. I asked the neuro if his diagnosis changed from PLS to ALS and he said that in September he would do another EMG/NVC which is an extensive nerve study evaluation and he could answer us at that time. So my answer to you would probably be that if you are going to the clinic they will probably do an extensive amount of testing and evaluating and as our past experience has been it usually takes a while before the results come in. PLS/ALS is so hard to diagnose that it is very frustrating for patients as well a physicians. Good luck to you and I hope you get some answers soon, I think not knowing is very difficult. God Bless you, Gracie
 
My father just recently was prescribed some Muscle Relaxers when he was up at Duke in February. Said he didn't like taking them during the day b/c it made him feel more like jello. Then we suggested him taking them before he goes to sleep as he was having a lot of muscle spasms and such at night...and it seems to be helping according to my mother. She said he sleeps more soundly as before she could feel when he was having his spasms.

Okay...so I have a question for you all. My dad was diagnosed back in November of last year w/ PLS. Duke confirmed the diagnosis back in February when he went up there for his first consultation. As of right now my dad's one leg is the major issue, and it may be starting to effect his other a bit. He can get around w/ a cane, and holding onto things as one of you mentioned prior, but it's very slow b/c of balance issues. He has fallen a few times...once last week trying to get into bed...which of course was very upsetting and discouraging to him. That's when he brought up feeling as though he's a burden...which as I've said before I could never feel as though someone I love so much is a burden. My father has basically given up since his diagnosis. He talked about once it was warm enough to swim, getting in their pool everyday, but this has not happened. He just doesn't see the point. I don't think he's had the courage to get on this site yet, although my mother did sign him up and give him a password. I think a part of him is scared to see what lies down the road for him perhaps? It's hard not knowing what to do or say. Typically when I hang out w/ him we really don't discuss it b/c I know he's happier just chatting about other things. We really want him to fight this and I've read on here from most everyone that exercising does help. His routine right now is to sleep in, go into their store they own for a bit...he can't do anything but is still interacting w/ the customers which is good for him...and then he comes home early and sits in his chair and drinks.

I was recently discussing this w/ a co-worker, also one of my good friends...and how hard it is to watch him just give up. She use to see a trainer...Randy that does home visits and has worked w/ a parapellegic (who was obviously in worse shape than my father is) and thought it may be a good thing to check into. I've called the trainer, explained the situation and he's more than willing to go work w/ my father. My sister and I were thinking to get him 4 home training sessions for Father's Day. He really needs a push to fight this and exercise, and I'm hoping this will help. Do you guys think this is going to be offensive to him? I feel like initially he might not be thrilled about it, but I'm hoping after meeting they guy and talking w/ him and him showing him some things, that this will motivate him, and in the same token show him how much we want him to fight this. Please give me some feedback as I'm a little nervous about this.

And on a different note, I just wanted to say how much I appreciate this forum. I've been able to learn a lot, although there is much more to learn, and I've even been able to contact someone in my area of whom's brother has ALS. She is a strong advocate as I wish to become. And she even informed me that there are meetings here locally that I'm going to start attending, and hopefully we can do as a family. I just feel blessed to have you all to talk to, so thank you for that.
 
stephanie

general mild exercise is good,stretching is excellent. if you dont stretch the muscles it results in joint contractures. can your dad see a pt for help with this? swimming may help but for me my lower body is too weak and when i go to do a stroke my lower body just sinks like a brick,so i am too weak to swim.
pls is not the end of the world for everyone,many have had pls 10-20yrs and can still lead a posotive life,that is what your dad needs to hear not the negative issues of the desease. you are doing a brilliant job in supporting/helping him and he is very lucky to have such a caring daughter,alot of people dont have that. a friend of mine with als has no living relatives only an abusive wife and his situation is so upseting.
he may not feel like it but your dad is a very lucky man.
god bless
caroline:)
 
Thank you for your kind words, and I hate that for your friend. I could not imagine not having anyone. I think even though my dad has us, and we have all told him that...he feels very alone. I think a lot of it is embarrassment & pride. He's the man in the family and he's told me it's hard for him watching my mom having to to everything...which I understand. As far as the PT....that's what I was asking about. I have found a guy that does home visits and my sister and I are buying him 4 for Father's Day. I'm just nervous that this will upset him. I think it will be the best thing for him, and hopefully motivate him....just don't want him to be offended.
 
Stephanie,
It's hard, not knowing your father, to guess at whether or not he'd be offended. It sounds like he is either giving up or is in denial. You still need to go ahead and give him the present. But let him decide when to start. He may need to take a few weeks to get his head around it and to set up the first visit. Don't be too pushy, but check with him about every other week or so to see if he is ready to begin.

As to visiting this forum, it is very difficult to get started with this too. When I was first diagnosed, I surfed around trying to find sites related to the disease, but reading the info made me physically ill. I had to take it in small doses. I would read a little bit of info and then not look on the web for days or even weeks. Then the next time, I wouldn't wait quite as long. Then read some more. I call my procrastination, doing things in 'Jeanette Time'.

I hope this helps.

Jeanette (Whitsend)
 
Jeanette

Thank you so much for your feedback. It is so nice to be able to get the other prospective. As for the forum...my & my sister have been the same way. We signed up immediately and would get on, but then hadn't been back on since December. So I can completely understand the "Jeanette Time"...although I know it was scary for you and I in different ways. I'm glad you came around, and hope my dad will do the same eventually. God Bless you! I hope you're having a nice weekend! :)
 
stephanie

your father is probably going through the grieving process of loss of mobility and the life he had,we all have gone through that early on in our illness. it takes time to come to terms with but i am sure with all the help and support you give him he will eventually except things and feel ready to live life again,though more slowly.
take care
caroline:-D
 
Thank you Caroline! I don't want to push him...b/c I know there is probably so many emotions he's feeling....sad, angry...the works. That's why it's great to talk to you guys and for ya'll to help me understand. I hope you know how much that means to me. I'm by him seeing me becoming an advocate, and trying to be proactive about raising awareness of the disease, and fundraisers and such, that this will motivate him as well. I'm trying to let him come around on his own time though.

Thanks again! :-D

Stephanie
 
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