Met new PLSers

[Guest guest]

Hey guys i met some more PLSers last night at a ALS/PLS meeting. I

asked if anyone had internet and none do. I told them about our

great group in hopes we get some new buddies ,told them it really

helps us cope.Im going to print some info to let them see what their

missing and take it to next months meeting. Any suggestions on what

subjects or i read Eva's article and printed it, ought to stimulate

some thaught about why they should think about getting a Comp. and

joining our group.4 out of 14 have PLS others ALS Im now registered

with the MDA as a patient so when i move to Florida the next doc.

will be up to date on me.Something is begining to seem strange to

me. for being a rare disease (PLS) im meeting more and more people

diagnosed with it also looked at s site and s and i see

way more than rare so misdiagnoses is labeled all over this for

some but i geuss we know that .One lady is only 2-1/2 yrs. and

cannot speak ,cannot hold her head up ,drools , cannot smile ,has no

use of hands ,is in a wheel chair always 2 of us can still walk

unaided 1 has AFO's all have speech problems.Really strange how out

of touch they are being no computor some never heard of

Dr.Siddique's work so any suggestions would be appreciated GEO