Familial pma

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Anjum nazir

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Dec 31, 2017
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Reason
PALS
Diagnosis
07/2018
Country
IN
State
JK
City
Srinagar
What is prognosis of pma. My mother survived with disease for 17 years. Initally her disease was lower motor neuron specific. She had wasting hyporeflexia and weakness of lower limbs. She was confined to bed for 17 years before dying in 2008 to pneumonia and respiratory illness.

Now me and my brother have the same symptoms.

How can we save ourselves. Is there a way that the muscle. Loss of lower limbs is stopped or slowed so that we can remain on our legs for long..

What diet medicine supplements etc should we take...
 

lgelb

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Are you confusing lower motor neuron disease with lower limb paralysis? LMN dysfunction generally affects both upper and lower limbs over time, as well as the torso, where the muscles that support speech, eating/drinking, and breathing are.

Here are some of the ways that PALS extend/improve their lives.

Active-to-passive range of motion exercises at least daily
Massage to prevent/reduce edema
Respiratory support (BiPAP) as soon as needed, with adequate secretion removal
Mobility devices to avoid falls, likely culminating in a power wheelchair with elevation, tilt, recline, power foot rests, and a powered patient lift for transfers
A bed that allows for an optimal position to avoid pressure injuries and facilitate lift transfers
Maintaining body weight, through nutrition and hydration, via tube if/as needed for adequate intake, using a non-corn syrup based formula or blending real food
Judicious use of supplements (several threads; use the search box top right)
Adequate sleep, social/nature/arts interaction, continuation of hobbies/pursuit of interests adaptively if possible

In consultation with your medical team, you may wish to consider Radicava and/or riluzole, depending on availability and stage of your disease.

Best,
Laurie
 

Anjum nazir

Active member
Joined
Dec 31, 2017
Messages
32
Reason
PALS
Diagnosis
07/2018
Country
IN
State
JK
City
Srinagar
My mother could take her food by herself for 15 years... For rest of the two years of her life she could not use her hands or body and was completely paralysed.. But her grip was strong.

This leaves me perplexed.. She did die of pneumonia and lived for 17 years bed bound.

She was diagnosed with mnd...

Is there any similar patient..

I am also progressing slowly.. Am in my fourth year but can walk and manage myself...
 
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