Living with PLS? Maybe

[Mystix]

Hi, this is my first post. I have been living with a maybe diagnosis of PLS for 11 years now, at times it is very frustrating. It started with stiffness in one of my legs, moved on to numerous falls, and it has affected my speech quite badly. Over the 11 years I have broken most of the bones in my body through falls, but I always get back up, usually takes me 2 years to come back to sort of where I was after a break. I have found that valium is better for my stiffness than baclofen. I use a walking frame all the time now, but have been given a motorised wheelchair that they want me to use, I am very stubborn and so far resisted. I still drive, go to the gym and generally fight on, often against advise of the family, who want to keep me safe. I have met some awesome people on my journey, whom I would not have met otherwise. Just wanted to share my story and give hope to other people. Stay strong and fight.:-D

 

[olly]

hi mystix,welcome to the forum.
it apears your post is in the wrong place but not to worry.
scroll down the main index to the pls forum and post there,if al see,s this he may move it there for you.
i am a fellow pls'er ,11yrs now.
alyoop who also has pls is from newzealand,great for the pair of you.
take care caroline

 

[Bad Balance]

Mystix:

I understand your stubborness. Glad to hear from you. I read encouragement...I am in my first year. Fight on.

- Jerry

 

[Tokahfang]

16 years here, and still learning new things!

 

[momofsixkids60]

My medical problems started at age 8 and now 42 years later diagnosis is Paramyotonia Congenita with an undiagnosed Upper Motor Neuron Disease. PC is hereditary but I am the first one in my family to have these problems. Maybe I am adopted!

 

[Mystix]

Thanks guys, sorry for posting in the wrong place.

 

[arkallen]

Hello Mystix, thank you for you first post, I hope that you will hang around!

11 years with only a probably diagnosis! I'm only at two years with a probably PLS diagnosis - so I guess your news worries me a little!

What I actually wanted to say was that for me the move to the power chair was wonderful. I really cant walk w, or push a manual chair more than a short way, but a good power chair has opened up my world immeasurably. So, who knows, it might be a good thing for you at some point too.

Nice to meet you!