Has anyone had PMA for more than 5 years with no upper motor involvement? We are on 6 years now and continuing to pray that it never involves the swallowing or speech. That wouldn't be "true" ALS then, would it.
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MA is a Motor Neuron Disease involving only the lower motor neurons. ALS involves upper and lower motor neurons. If you have had symptoms for 6 years with no upper involvement I would guess that chances are good you will not develop ALS.AL.
liz said:
hello again,
Just wanted to shed some light on the posts. I apparently have had pma for 6 years but was not given the actual diagnosed until about 2 yrs ago. I had symptoms about 2 years before going to neurologist. I was having weakness and pain in right leg and was being treated for arthritis in my hip by my gp. During an exam, it was found that I did not have any reflexes in my left foot and so my odyessy began. It has been about 7-8 years with symptoms. As stated in another post, in the beginning, neuro thought it could be immune related. That was ruled out. PMA was mentioned but not given as diagnosed until a little over 2 yrs ago. I am assuming they (we) were waiting for passage of time. My progression has been slow but relentless. I have lost the use of my legs but I can still wiggle toes on both feet. My arms are weak and I am losing the ability to raise them. The real kicker is my hands are also weakening but it appears I am losing strength in fingers one at a time. Wierd huh?
Liz, you need to understand that everyone progresses differently. Having said that, I am beginning to show upper motor neuron signs, jaw jerk reflex,tongue is beginning to atrophy, speech is slightly slurred and I have to be careful when swallowing. I am giving the neuros at the clinic time before I ask them again if I have "crossed over". The neuro that did the exam hedged when I asked about ALS. I didn't push because at that time I really didn' t want to know, coward that I am.
This is where I am at this time. In the next few days I intend to ask THE question again.
Whichever way it goes I will take it one day at a time as I have since the beginning. I don't fight this disease, I know I will lose. I LIVE with it. I have no other choice. I thank God everyday for what I do have and the time I have been given but I am not saying that I have not let HIM know that "We are not pleased". Keep the faith.
Brenda
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Pma
Dear Lucy,
I too am in my sixth year with PMA. To date all issues have been with my legs (now using a powered wheelchair) and I truly count my blessings for the slow progress of this disease.
Most everything posted for you here is true, especially about the fact that things progress so differently for each individual. However, there seems to be a bit of confusion over what “lower motor neuron involvement” entails (or I may be reading something wrong here). Unfortunately, having PMA doesn’t let us off of the hook for eventually having loss of neurons (lower only) and muscle that covers the legs, arms, torso, and/or head (speech and swallowing), but fortunately this typically happens over a much longer course of time than ALS. The lack of upper motor neuron involvement simply means that we don’t suffer the effects of spasticity, brisk reflexes, or display the Babibski sign (there is detailed information on all of this in the PMA section of this website). Having said all of this, the real kick in the pants is that we still have at least a 50/50 chance of picking up the upper motor neuron symptoms (PMA-> ALS) in the future.
I apologize to everyone for being so technical (and anal) about this stuff, but the whole upper/lower motor neuron, upper/lower body convolution appears to happen quite often (it took me a long time to get this straight myself).
God bless!
Edwin
Dear Lucy,
I too am in my sixth year with PMA. To date all issues have been with my legs (now using a powered wheelchair) and I truly count my blessings for the slow progress of this disease.
Most everything posted for you here is true, especially about the fact that things progress so differently for each individual. However, there seems to be a bit of confusion over what “lower motor neuron involvement” entails (or I may be reading something wrong here). Unfortunately, having PMA doesn’t let us off of the hook for eventually having loss of neurons (lower only) and muscle that covers the legs, arms, torso, and/or head (speech and swallowing), but fortunately this typically happens over a much longer course of time than ALS. The lack of upper motor neuron involvement simply means that we don’t suffer the effects of spasticity, brisk reflexes, or display the Babibski sign (there is detailed information on all of this in the PMA section of this website). Having said all of this, the real kick in the pants is that we still have at least a 50/50 chance of picking up the upper motor neuron symptoms (PMA-> ALS) in the future.
I apologize to everyone for being so technical (and anal) about this stuff, but the whole upper/lower motor neuron, upper/lower body convolution appears to happen quite often (it took me a long time to get this straight myself).
God bless!
Edwin
Pma
We have been told by several neurologists that the longer it remains a lower motor neuon withought involving any of the upper signs the better the chance it will stay a lower motor neuon process. Basically he will be paralyzed from neck down. I guess only time will tell. Does anyone take care of their loved one(with this disease) by themselves in the home? Sometimes I feel so overwhelmed. Not to mention having two active children and a part time job. Anymore I go to work to rest. I just have to remind myself that it is 10 times worse for him.
We have been told by several neurologists that the longer it remains a lower motor neuon withought involving any of the upper signs the better the chance it will stay a lower motor neuon process. Basically he will be paralyzed from neck down. I guess only time will tell. Does anyone take care of their loved one(with this disease) by themselves in the home? Sometimes I feel so overwhelmed. Not to mention having two active children and a part time job. Anymore I go to work to rest. I just have to remind myself that it is 10 times worse for him.
jean
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Hi Lucy
i shouldn't get too hung up on upper motor neuron versus lower motor neuron signs. it is the lower motor neuron involvement that results in swallowing and breathing weakness and so people with PMA will reach that problem just as in ALS. The biggest difference is that for most people with PMA, progression is slower than ALS,although just as for ALS, the rate of progression varies from person to person.I have PMA and whilst I am fully aware of what is to come,my philosophy is to live each day and to try not to worry too much about tomorrow.Most of the time it works for me,although I'd not be human if I said I never thought about the future! Sometime i think you carers have the hardest time.Juggling work , family and care is exhausting and you have to think about the future! I hope you have got good support from your family and friends and can occasionally think about yourself.You need to once in a while!
Best wishes
Jean
i shouldn't get too hung up on upper motor neuron versus lower motor neuron signs. it is the lower motor neuron involvement that results in swallowing and breathing weakness and so people with PMA will reach that problem just as in ALS. The biggest difference is that for most people with PMA, progression is slower than ALS,although just as for ALS, the rate of progression varies from person to person.I have PMA and whilst I am fully aware of what is to come,my philosophy is to live each day and to try not to worry too much about tomorrow.Most of the time it works for me,although I'd not be human if I said I never thought about the future! Sometime i think you carers have the hardest time.Juggling work , family and care is exhausting and you have to think about the future! I hope you have got good support from your family and friends and can occasionally think about yourself.You need to once in a while!
Best wishes
Jean
Pma
Hi Jean,
I am so glad to hear from someone that is going through something like us. How long have you had PMA? We have always been told from neurologist(Wash U, Mayos, and here where we live that my husband has strictly lower motor signs now and that upper signs is the babinski sign, swallowing, speech, etc...) And they have also said the longer it stays a lower motor process the better the chances it staying there. My husband agrees that it wouldn't make sense to just stop there. I guess that is what keeps me going.... not allowing myself to think things could get a lot worse. Yes, we have a lot of family around but my husband is very stubborn about ANYONE else helping him. I can understand the showering but eating and other small tasks I would think would be alright. Who knows how I would react in his shoes? I just know after taking care of him, the kids, working, etc... I am about spent(physically and emotionally).
I hope to talk with you and/or your caregiver soon.
Lucy
Hi Jean,
I am so glad to hear from someone that is going through something like us. How long have you had PMA? We have always been told from neurologist(Wash U, Mayos, and here where we live that my husband has strictly lower motor signs now and that upper signs is the babinski sign, swallowing, speech, etc...) And they have also said the longer it stays a lower motor process the better the chances it staying there. My husband agrees that it wouldn't make sense to just stop there. I guess that is what keeps me going.... not allowing myself to think things could get a lot worse. Yes, we have a lot of family around but my husband is very stubborn about ANYONE else helping him. I can understand the showering but eating and other small tasks I would think would be alright. Who knows how I would react in his shoes? I just know after taking care of him, the kids, working, etc... I am about spent(physically and emotionally).
I hope to talk with you and/or your caregiver soon.
Lucy
Lucy..
I admire you for your patience and your desire to be there for your husband but Jean
's advice to take time for yourself is so important. My husband tried to do it all when I first began to need assistance. I, like your husband didn't want anyone else to help me.
After a couple botched transfers on my own and frantic calls to hubby at work to come to my rescue we decided a carer was necessary for my safety and hubby's sanity..I have never regretted this decision. It was hard to let someone other than my husband do certain things for me. I have 2 grown daughters that I am stll,after all this time, uncomfortable with having them help me. I think it has a lot to do with role reversal. I should be helping them. Any way you look at it, whether it is friends, family, or carer assisting you, your hubby will be out of his comfort zone, meaning you, for a while. This will pass.I realize now what a burden I was asking Dennis to carry. Hopefully your husband will change his mind.Brenda
I admire you for your patience and your desire to be there for your husband but Jean
's advice to take time for yourself is so important. My husband tried to do it all when I first began to need assistance. I, like your husband didn't want anyone else to help me.
After a couple botched transfers on my own and frantic calls to hubby at work to come to my rescue we decided a carer was necessary for my safety and hubby's sanity..I have never regretted this decision. It was hard to let someone other than my husband do certain things for me. I have 2 grown daughters that I am stll,after all this time, uncomfortable with having them help me. I think it has a lot to do with role reversal. I should be helping them. Any way you look at it, whether it is friends, family, or carer assisting you, your hubby will be out of his comfort zone, meaning you, for a while. This will pass.I realize now what a burden I was asking Dennis to carry. Hopefully your husband will change his mind.Brenda
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Hi Lucy
Just to answer your questions. I was diagnosed with PMA a little under 3 years ago. I am still on my feet (able to walk short distances) and with weak arms that are still working although complaining about having to do so!So I am some way behind your husband's progression, although i realise that he has had it for a lot longer.I don't know how that compares with your husband's disease at the same number of years.I feel fortunate to be progressing fairly slowly and it does give time to come to terms with what is happening,which is more than for many with ALS .I dread the time coming when I will need full time care and I know I will worry about being a burden.I suspect your husband does too and I'm sure deep down he doesn't want you to wear yourself out completely and maybe you need to be upfront with him regarding others being involved in his care. I know that even at the moment I need my husband's help and as i get weaker, will need him to be there for me,preferably in a strong and healthy state! He therefore need a little care himself and you do too. It is easy to concentrate on the person with the major illness, but pointing out that an exhausted person is not what the person with MND needs , might make your husband more accepting of help from others and not just you alone.He needs you to be strong,so make sure you do give yourself the time you need for yourself. A difficult juggling act, but I'm sure you could do it!
Best wishes
Jean
Just to answer your questions. I was diagnosed with PMA a little under 3 years ago. I am still on my feet (able to walk short distances) and with weak arms that are still working although complaining about having to do so!So I am some way behind your husband's progression, although i realise that he has had it for a lot longer.I don't know how that compares with your husband's disease at the same number of years.I feel fortunate to be progressing fairly slowly and it does give time to come to terms with what is happening,which is more than for many with ALS .I dread the time coming when I will need full time care and I know I will worry about being a burden.I suspect your husband does too and I'm sure deep down he doesn't want you to wear yourself out completely and maybe you need to be upfront with him regarding others being involved in his care. I know that even at the moment I need my husband's help and as i get weaker, will need him to be there for me,preferably in a strong and healthy state! He therefore need a little care himself and you do too. It is easy to concentrate on the person with the major illness, but pointing out that an exhausted person is not what the person with MND needs , might make your husband more accepting of help from others and not just you alone.He needs you to be strong,so make sure you do give yourself the time you need for yourself. A difficult juggling act, but I'm sure you could do it!
Best wishes
Jean
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I have had PMA for ten years and it has progressed from my right arm across my shoulders and now to my left arm. my legs seem fine but I do have fasiculations which scares me. I had fasiculations in my arms and chest for 15 years before atrophy started. Will it move to my legs?
I have had PMA for ten years and it has progressed from my right arm across my shoulders and now to my left arm. my legs seem fine but I do have fasiculations which scares me. I had fasiculations in my arms and chest for 15 years before atrophy started. Will it move to my legs?
jean
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Hi Larry
Nobody could ever say with certainty that you will not develop problems with your legs.However, it seems to have been slow in progression in your arms , with fasciculations for 15 years prior to any weakness. It would therefore seem likely that after this time either your legs will remain unaffected or if they do weaken it will be very slow. Some people's disease never spreads to other regions and remains where it started,so you may be ok. Lets hope you are in that category!
best wishes
Jean
Nobody could ever say with certainty that you will not develop problems with your legs.However, it seems to have been slow in progression in your arms , with fasciculations for 15 years prior to any weakness. It would therefore seem likely that after this time either your legs will remain unaffected or if they do weaken it will be very slow. Some people's disease never spreads to other regions and remains where it started,so you may be ok. Lets hope you are in that category!
best wishes
Jean
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Hi Lucy - I had a thought that may work for you and your husband. Perhaps he can get used to another caregiver for just a half day a week. The extra time to yourself will be a blessing and if all goes well you could gradually increase the amount of time you get help. Or perhaps you could get a teenager in the nieghborhood to act as "mother's helper" with the kids, errands, and such. An extra pair of hands around the house should lighten your load even as you focus on him and the helper focuses on kids and chores. Just thinking out loud...Cindy
Hi all,
I am glad to see some responses. For one, my husband has hired someone to come in every other week to clean the house. That does allow me more time for myself and to do activities with the children. I (physically) do not know how much longer I can continue doing all the lifting I am doing. I literally lift him from the toilet to the shower chair to the bed to dress him then back into the wheelchair. We do have a lift but I am unable to use that by myself. We use that if and when he ends up on the floor. Usually from a transfer. Another question asked again was about the lower motor involving the speech and swallowing. That is upper motor and thankfully we have not had any signs of that. He is almost paralyzed from the neck down. Right now he is dealing with his joystick on his wheelchair becoming challenging. His hands and wrist are getting so weak and his fingers are curling bad. We go see our ALS specialist in 2 weeks. That usually entails them wanting to check his breathing. Six months ago was at 83% which they said was good so hopefully it has not went down. I do appreciate all the feedback and look forward to chatting later.
God Bless,
Lucy
I am glad to see some responses. For one, my husband has hired someone to come in every other week to clean the house. That does allow me more time for myself and to do activities with the children. I (physically) do not know how much longer I can continue doing all the lifting I am doing. I literally lift him from the toilet to the shower chair to the bed to dress him then back into the wheelchair. We do have a lift but I am unable to use that by myself. We use that if and when he ends up on the floor. Usually from a transfer. Another question asked again was about the lower motor involving the speech and swallowing. That is upper motor and thankfully we have not had any signs of that. He is almost paralyzed from the neck down. Right now he is dealing with his joystick on his wheelchair becoming challenging. His hands and wrist are getting so weak and his fingers are curling bad. We go see our ALS specialist in 2 weeks. That usually entails them wanting to check his breathing. Six months ago was at 83% which they said was good so hopefully it has not went down. I do appreciate all the feedback and look forward to chatting later.
God Bless,
Lucy
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