Re: Age and progression

February 22, 2006

Tawny,yes this sucks for sure and I have got to think that there are

different types of PLS. this is not scientific just my brain thinking. I did

notice like DI indicated that people getting this early on in life do progress

faster. I was 44 nut my voice was only symptom but 5 years later it got more

aggressive. From walking with holding on to walls to using a cane to walker

all in about a year. I was given a dx of ALS and then a year later since I had

remained the same it was then changed to PLS. I have strength in my legs and

arms but my balance is shot, I can lift a 25 lbs of cat litter but I can

move because I'd fall down. ...............so is this PLS? Who knows I just

live one day at a time. I know its easier for us that have spouses but living

alone can't be easy. Just keep writing it helps beileve me. .........Flora

February 22, 2006

I know I am sounding repetitive saying I don't have any confirmed dx of

anything. just lots of neuro sxs.

But on your question and discussion I can say that in my late 20's and early

30's I was having sx's of severe deep bone pain, times of unable to walk due to

pain more than anything, stiffness, migraines, a few seizures etc... and was

dx'd with Lupus in 1991. After being treated with rheumatrax and prednisone my

sx's subsided. And for about 8 years I was able to manage without seeing any

type of doctor for anything.

Then in 2003 i started experiencing sx's again, different from those in

80's/90s. I went from walking without aid before Feb 2004, to needing a cane

for long distances, then by July forearm crutches, to now at least one crutch

for day to day, rollator for longer outings, and a scooter for all day type

outings. The walking issues started more due to imbalance, then into weakness,

and stiffness, into cramping/spasms.

So although I didn't have a neuro dx (well it was CNS Lupus which in 2004 was

ruled I never had lupus and was probably missed dx'd) and still don't, I feel I

have progressed quickly in the last two years or so in about all areas of sx's.

maybe age is partly due, I am mid 40's so maybe it just part of the normal aging

process. yet i don't believe someone my age " normally " progresses to needing

mobility aid devices for day to day use.

best wishes.

marfla

Be Blessed

Age and progression

Is it just my imagination, or is it common that those of us that start

with PLS symptoms at 40 or younger tend to go through longish bouts of

rapid progression....I mean...the progression is less 'gradual'. I

know from my research methods training at university that

our 'impressions' aren't always supported by actual statistics.

I know of about 6 of us who started with symptoms in our 30s and have

gonefrom limping to walkers or wheelchairs in a few years.

Personally...I have had 'plateaus' periodically.....although not for a

while now (but I am definitely planning on one soon!).

Just curious.....those of you who started with symptoms in your

30s...have you found that your symptoms have tended to be

less 'gradual'...with long bouts of rapid progression?

Hugs to all!!

Love Di...........PLS.........Canada...where a nasty blizzard is

raging!! (yuck!!)

February 22, 2006

Thank you all for the warm welcomes...

It is my experience, with my 3 year anniversary next month, that i have not

had but one 6 month period without progression and that was march thru august of

last year. i certainly enjoyed the heck out of that time, but continue to

present with newer or more severe symptoms each time i see my neurologist. (and

i go every 2months) tomorrow i will go with another list. I went from problems

with fine motor skills in my hands to shuffling what felt like concrete feet in

a matter of 2 months and by the time july came around i was using walls to kinda

move my way forward and was still driving despite hardly being able to hold the

wheel. but by august i started out propelling myself with my arms on walker,

still driving, then suddenly (while driving) i couldn't press on gas pedal and

just like that was in wheelchair. there were so many other fleeting but

disabling features that came and went during this time and doctors were so sure

it was ms or myasthenia gravis---brain was fine,

repeated spinal taps were fine. so there i was in a wheelchair that i really

couldn't push myself and no one could tell me anything.

it all happened so fast that there was and probably still hasn't been the

processing of it all. all the while i was still working as mental

health/substance abuse therapist and my employers were wonderful and i kept

trying to work until i realized that those fleeting and disturbing symptoms were

worse the more energy i expended. so i cut back to 24 hours/week, then 20, then

15, then 10 and then i knew they were just keeping me on cause i sucked at

sessions and pretty much winged it cause i couldn't focus on what my clients

were saying, so october of the year after it all began, i stopped working. it

was if acceptance of whatever was happening was required cause the next day or

next week something else was going wrong.

that is pretty good nutshell of first year and 1/2. i woulld go on, but hands

and arms aren't cooperating with my typing---they are jumping all over te

keyboard and i am hitting delete more than typing. i will go. need to take

nap. thank you all for listening and i certainly know (despite my resistance)

this is where i should be. Please note, I am still living alone with my dogs

after having to let them live with a friend of mine for a long period of time.

i learned early into this crap that what was most important for me in this life

is being with my dogs because they help me instinctively and i am so in love

with them it is nutty!!! so i try very very hard to stay in the moment with

them because i don't want to miss anything with them. have also had to make

more happy memories with my dearest of friends because i only had memories of

things i missed doing with them and then the trauma that they supported me thru

with the pls. i will talk more about this later.

would love to have another 6 months without new stuff tho. since my six

months i am nearly 6 months unable to get thru the more and more symptoms.

have a great day ya'll.

Tawny

dianamj_canuck dianamj_canuck@...> wrote:

Is it just my imagination, or is it common that those of us that start

with PLS symptoms at 40 or younger tend to go through longish bouts of

rapid progression....I mean...the progression is less 'gradual'. I

know from my research methods training at university that

our 'impressions' aren't always supported by actual statistics.

I know of about 6 of us who started with symptoms in our 30s and have

gonefrom limping to walkers or wheelchairs in a few years.

Personally...I have had 'plateaus' periodically.....although not for a

while now (but I am definitely planning on one soon!).

Just curious.....those of you who started with symptoms in your

30s...have you found that your symptoms have tended to be

less 'gradual'...with long bouts of rapid progression?

Hugs to all!!

Love Di...........PLS.........Canada...where a nasty blizzard is

raging!! (yuck!!)

February 22, 2006

Hi again flora and thank you for your direction. It was a bold moment where i

signed the database and emailed you to start with and then i wasn't so bold

anymore. well, as far as there being different types of pls, one research

article i read noted just that but there are too few of us already thrown into a

general category of pls to begin with that there would be no way to study us

like that. further more, there are many pls's out there that are and were

misdiagnosed with als and they consider there are more types of als also.

guessing all our bodies were different with different family histories and

health status's before getting this. i was a healthy, active, workaholic. i

loved running and running with my dogs and i refereed basketball because i loved

it so much and there weren't many opportunities for me to play. so i was

working full time advocating passionately for the homeless, teaching intro psych

to students and getting them excited about psychology and refereeing. i was

working on slowing down tho and was more working and teaching than anything else

at the time i got sick. my desire in this life has always been to just live in

the moment and appreciate each and every interaction, enjoy my dogs and be a

part of my little half sis and bro's life, and also try to mend past issues with

my father---this is why i moved to fl to begin with. so i wished for slowing

down and feeling peaceful and living more consistent with my priorities. well,

bam there it was!!! i actually on good days am more

peaceful than i ever have been in my life. i know what i need, i know what i

believe in my heart to be important, i envoke the option of keeping negative

energy people out of my world, i chose what i want to do based on the energy

expenditure and what or who is worth that. those are so much of the things i

needed in my life before. funny how life works.

on the flip side i cannot stop dreaming i am walking or running. i cannot

stop wanting just to get up and go to the bathroom without turning on my

freaking chair to go. once almost did and happened to see chair in perifery and

didn't propel self out of bed into the floor and door frame into my head. so

sometimes it isn't so real to me. i haven't accomodated non walking me with

walking me yet and that is most frustrating and torturous to me lately. other

than the pain and new s/s's.

i even wrote the makers of the pump begging for a freebie!! didn't work. i

have too many things to do before i get worser still. i go see franklin

tomorrow, then have to make trip to pharm and grocery friday and my neice turns

11 and her party is saturday. not sure i am going to do much for the next week

for sure. outings are the worst for me as sitting up for over a few hours

starts a series of spasms from my shoulders to my knees. i cannot sit and try

to rub my butt in the grocery---although i once tried that waiting for

wheelchair transport outside of grocery!!

if you are travelable it will be easier to meet. i am not sure i am ready for

that, but will work on that in my brain!! will tell doc i have found you and i

am sure he will be pleased.

T

belgium46@... wrote: