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Kenny H

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

Couple of things: My speech began to get a bit funky a few months ago. The mobility issue is annoying, but the speech thing is alot tougher for me to handle. I asked a speech pathologist who deals with neuro stuff about trying Baclofen. She said she has heard mixed results, but give it a shot. I am up to 30mg now and it is helping!

I have mobility issues, especially going down stairs and walking on uneven or slippery surfaces. The other night, I was going up stairs in my house, sort of pulling myself up by the rail. This is totally unnecessary, but I was being lazy. On stair 6, my hand slipped and down I went, backwards, to the first floor. I was lucky: cracked 3 ribs, bruised the left rear of my pelvis bone....it could have been worse. This in combo with the PLS is pretty miserable. For those of you who get muscles spasms picture this: a full body spasm that lasted about 45 minutes which made me scream from pain with the injuries. Much better now though.
Morale of the story: even though we want to plow ahead and be tough [or cool as I say], be careful on hazards like stairs and other "red alert" areas.

Kenny
 

olly

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

firstly i am so sorry to hear about your accident ,i hope you are feeling a bit better.
i have 2rails going up my stairs. it is hard to get your weak muscles to lift up to climb them and then the balance,going down is were i get my balance problems.
i mentioned to you a while back about baclofen may help with the speech,given you have a spastic tongue and this med is a muscle relaxer.
i am the opposite my tongue is more flaccid and i have tongue fassics now,also speech gone funny like it is winding down.
i have been taking extra baclofen for my lower jaw/face spasms and it does help a little.
got weighed today and i am loosing weight again despite eating a bit better which is worrying.
i know what you mean,i have had mainly umn for 9yrs in my body but bulbar symptoms started 18mths ago,just slight problem with swallowing but last 6mths they have progressed fast and have overtaken the body symptoms,this is a major bummer.
get plenty of rest and please be carefull.
take good care
caroline:)
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Ouch, Kenny! Be careful! Hope you are better today.
 

sral

Distinguished member
Joined
Sep 15, 2007
Messages
289
Reason
Learn about ALS
Diagnosis
n/a
Country
CA
State
ontario
City
toronto
Hope you feel better soon Kenny!
 

Geo

Senior member
Joined
Aug 24, 2007
Messages
500
Reason
DX UMND/PLS
Diagnosis
12/2001
Country
US
State
Florida
City
Ruskin
Dont get Cocky ,it could mean the end .We must be realistic and learn our limitations ,stairs are the reason i moved where i dont have any . We Flew into St. Petes Airport yesteday and the stewardess said you'll have to walk the ramp down to the wheelchair at the bottom ,we were first to go ,so i grabbed the rail and thaught every step i would go down face first ,but i made it ,holding everyone else up behind me . So i had no choice wether to go or not . I could have ended up like you Bud but by the graces of God i made it . Going down is by far the worst with me .That railing got squeezed Big Time . Hope you heal fast and learn your limitations so it dont happen again . Geo
 

Whitsend

Distinguished member
Joined
Jan 8, 2008
Messages
105
Reason
PALS
Diagnosis
01/2009
Country
US
State
NC
City
Concord
Geesh Kenny. Please take it slow and use BOTH hands on that rail. The PLS problems are bad enough. Don't need injuries added to the mix.

Take it easy and feel free to come here to moan, groan and complain.
 
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