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Hannah5

New member
Joined
Jun 12, 2008
Messages
1
Reason
CALS
Country
CA
State
Ontario
City
Toronto
Hi. My mom has PLS (recently confirmed-confirmed, after 8 years of symptoms and 5 years in ALS or PLS limbo). As it is such a rare disease, I've found it enlightening coming on the forum and reading all your postings. I also wanted to know if any of you had experienced some of the following: My mom 'walks' on her toes - meaning she'll launch off a wall/chair/bed and aim for the next wall propelling herself forward, because she is on her toes (although she can put her heels down, it is only when she is standing)...this has gotten progressively worse (although over 8 years - so I think we're lucky), along with her balance. Her speech has gotten much quieter, but only really slurs when she's exhausted (you can still understand her though). She moves around the house like this (for others not used to it, they flail about trying to prevent it, but the doctor encourages any movement, even if it is this). The stiffness is in the back of her knees. She also has exteme difficultly turning (she does little walk-around circles), getting up from chairs although walking up stairs until recently was her 'badge of honour' - as she did this relatively quickly (now however, her toes drag on each step and it takes about 15 minutes to get up a flight, although she does it). Doctors recently thought that it might have gone into Parkinsons as she was seeming "parkinsonian" (their word, not mine). Has anyone else gotten this? It appears she is now a "weird hybrid" but definitely more PLS than anything else. Baclofen failed badly and she basically shut down on it, and wasn't able to move - she is not on any meds as she is hyper-sensitive to all of them (i.e very poor mobility reactions for prolonged periods). At the moment, we've had to up her homecare (this is provided free because we live in Ontario - although it is bureaucratic) as she becomes incontinent when she cannot get to the bathroom in time (and is lying about it). Has anyone else with PLS found that general incontinence is a problem, or is it just with reduced mobility that it becomes a factor? This is her #1 quality of life issue right now. She's been such a positive go-getter in this overall (carrying out volunteer work from her scooter, tutoring kids as well), but now the point has been reached where her basic functions need far more support, in order for her to be able to continue this good stuff. I was just wondering about the presence of some of the above in other individuals with PLS...Thanks!
 

Kenny H

Member
Joined
May 22, 2008
Messages
22
Reason
DX UMND/PLS
Diagnosis
02/2005
Country
US
State
RI
City
Providence
Hi, Hannah

Welcome to the group. Your mom is lucky to have you care enough to read through all this. I have some urinary issues that drive me nuts. I seem to be fine, but when I have to go, it is red alert and sometimes I just don't quite make it. I sometimes think is it psycholgical [called key in the door sydrome] and other times, I know it is because of the PLS. You will no doubt become aware how funky this disease is. I have problems going down stairs, but I did 105 flights of stairs this morning on the Stairmaster.

Good luck,

Kenny
 

Whitsend

Distinguished member
Joined
Jan 8, 2008
Messages
105
Reason
PALS
Diagnosis
01/2009
Country
US
State
NC
City
Concord
I too have the urgency issue. No big deal until I'm a few feet from the john and then I'm mighty lucky if I make it without an accident. I too think it's more psycholgical, but still brought on by the PLS. I take medicine for bladder control, but it doesn't really work.

Sorry to hear that your mother has progressed to a state where home health care is needed. This is not a pretty disease.
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Hi Hannah- you sound like a lovely daughter and your Mom is luck to have you to help her. Welcome to the forum! Cindy
 
Joined
Jun 2, 2008
Messages
12
Reason
Learn about ALS
Country
US
State
iowa
City
ankeny
Hi Hannah,

I am also new the the group, but after reading your post describing your mother's symptoms and current condition, I believe I understand some of what she is dealing with. Severe rigidity in the the torso makes turning extremely difficult for me, even when I try rolling over in bed. It makes getting out of chairs sometimes a real challenge because of the stiffness that sets in, especially after being stationary for a while. Stairs are a bugger and if I try climbing them to fast I'm sure to trip. Slurrring my words at night when I'm tired is common. During the course of my neurological problems I was at one point diagnosed with Parkinson's Disease, because of movement /mobility problems. That was determined to be a misdiagnosis because of other symptoms that developed. It has taken me four years to get a neurologist to even mention that I may have PLS. The reason that he will not make a definite diagnosis, is I believe because five years have not past for advancement to ALS. I do not suffer from muscle wasting.
I'm sure many other members of this site deal with similar problems. Your mom sounds like a very courageous women and is lucky to have a daughter willing to do so much to help her. My best wishes to you both. Mitch
 

Geo

Senior member
Joined
Aug 24, 2007
Messages
500
Reason
DX UMND/PLS
Diagnosis
12/2001
Country
US
State
Florida
City
Ruskin
Hannah ,Your in the right place ,the toe walking is from the Calf Muscle contraction ,along with balance issues . When the calf Muscle contracts it causes the toe to point down . If i stand for a while i'll get this then i feel my balance going . Im 7-8 years into it and use a quad cane for mobility . I too cannot tolerate Baclofen ,and do not take any Meds for PLS (muscle relaxers)I was 55 when i got my first symptoms, 63 now
If i turn to the right i have Balance issues . My symptoms came on over night . I believe that a Virus has caused my PLS ,But Docs. dont want to deal with something they have no knowledge of . This takes someone who will think out of the Box . Geo
 

olly

Extremely helpful member
Joined
Jan 10, 2008
Messages
2,732
Reason
PALS
Diagnosis
11/2007
Country
uk
State
uk
City
uk
geo

i do believe in the possability of a virus causing mnd, but i have also heard many people develop symptoms after surgery.
i had major surgery(hysterectomy)10mths before the spasms started but had severe vertigo for 2weeks about 3mths before the spasms.
maybe having surgery weakened the ammune system and made it suseptable to a virus.there are many viruses in hospitals and could lay dormant for some time.
i too have more problems with balance on my right,i always bump into the right hand side of door frames .
take care
caroline:-D
 
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