New to this site

[kfletcher]

That being said...I was diagnosed in 2007. In 2004 I had a left sided partial seizure that really brought on my PLS. This was after many, many, many years of telling my husband that I felt something as wrong with me.....I just didn't feel right and felt it was something serious but couldn't pinpoint or tell him how I knew this.
Within 6 months I was having pain, developing drop foot and dragging my left leg. By a years time I was pretty much in severe agony, still trying to work and wondering WTH was wrong with me. A couple of years later, several Drs. And many, many, many tests I was diagnosed finally. My main concern was...is it fatal and was it hereditary? No to both and thought that it was OK....then..
I went into severe depression for several years, shutting everyone out, eating myself into major obesity, was very suicidal...etc. Finally in 2008... I decided live with it or do something...I chose to live. Had gastric bypass, lost a ton of weight and started living again. At that time I was still using a quad cane....I hadn't progressed any since that 1st year 2004-2005...
Now let's skip to around October 2012... I noticed getting up was getting harder, feeling stiffer, more fatigue and walking was getting harder. That lasted and was gradually getting worse...now since August 2013 been using the powerchair and scooter almost exclusively. Walking is so hard and painful and pretty much to hard to take even 20 steps. Standong to pull up my pants is almost to much to bear, exhausting. Getting in and out of my shower stall is like climbing a mountain. I think you get the picture. Did I mention that I'm only 46 now....feeling useless and like I'm a burden I did tell my husband and family that if I get to where I'm totally dependent on him/them to put me in a nursing home and get on with his life....to young to spend the rest of his life taking care of me. Feeling worthless...we did try physical therapy...no help...any suggestions. I do take Baclofen 10 mg...2...4x's a day.

 

[Tokahfang]

Welcome!

My experience has always been that our loved ones appreciate having us around, even with our needs, much more than we can imagine. I struggle with the same thoughts, though.

Advice is hard to give knowing so little about you. What do you do with your day, what do you do enrich your life?

 

[Mike in Maine]

Welcome to the site, sorry to hear about the PLS. This is the right site to visit, great advice and even better people. Again Welcome.

 

[olly]

Hi,so sorry to hear your story...your not alone.
I am too 46,started with this aged 30/31 and progression sounds similar .
Sure I recognise your name,is it Kelly?
Are you a member of the yahoo pls group? I was on there back in 2007/08.

 

[kfletcher]

Yes I was in the yahoo group...and for some reason I can't get into my yahoo at all. It's been almost 1 1/2 years since I could. Now more than ever I needed support and miss the help of the group. I felt bad that I seemed to be doing so good and most of the group were a little worse off than I w

 

[kfletcher]

Was.
I know that I wasn't expecting to get this bad....denial I guess. I'm pretty scared at what tomorrow brings now. I also have been hit hard with bladder issues. I just had my second interstim nerve stimulator put in. It helps a little, but I'm still having full blown accidents, some at night, some during the day. This keeps me pretty much at home, because it's humiliating.
I just became a grandmother for the first time in January and it's hard holding her without a pillow under my arm for her to rest on.

 

[Port]

Welcome, I too am reasonably new. I use a rollator but feel I will be moving to a powered chair soon. Seem to fall a lot. I continue to work and am thankful my job is not physically demanding, but quite stressful. I too suffer from accidents and find myself going home early often. Agree it's hard. This probably sounds silly but I live by this simpler mantra.....I am blessed to know that every day when I get up it's going to be my best day. Not many people have that luxury. We live a life that doesn't allow us a lot of choices. But we get to choose whether to be happy or not and I choose happy. Now I am a pragmatic, somewhat cynical soul but i feel a lot depends on ones personal outlook. Non carborundum illigetimi. (Don't let the bastards grind you down)

 

[MaxEidswick]

>.I am blessed to know that every day when I get up it's going to be my best day. Not many people have that luxury.

well said. I need to get to the office, but the coughing/gagging is pretty obnoxious, so now I arrive late and leave early 3/week. soon to be 2/week. I really can get more done in my home lab.


>We live a life that doesn't allow us a lot of choices. But we get to choose whether to be happy or not and I choose happy. Now I am a pragmatic, somewhat cynical soul

Hmmm ? I thought I had a monopoly on cynicism ...

 

[kfletcher]

I might have misrepresented myself in that....I'm not gloomy and feeling like whoa is me. I mean I do have those times that I'm still feeling sorry for myself, but quickly get over them.
I'm upset over this latest progression....I am so close to never walking again and that scares the crap out of me. I'm not ready for that.
However, I will face the challenge and adapt to mynew way of life and make the best of it. Just looking for people that share the same obstacles and can help me through this next transition. TY.

 

[Port]

Didn't mean to sound preachy....sorry for that....we all have our moments and are entitled to them. Was just trying to share my general philosophy on the hand we were dealt. Please forgive my offense.....it was unintended.

 

[kfletcher]

No offense taken....just wanted to let everyone know how I felt. I thank everyone for taking the time to read my post and to everyone that commented. Hey, we're all in this together....so all comments are helpful.

 

[Mel1030]

Hello I've just been diagnosed with PLS. I was also diagnosed with sciatica symptoms. Wondering now if that was PLS coming on. I can still walk ok. I'm a little wobbly and stiff in the legs. I'm only 44. I didn't realize how many people where affected by this disease until coming on here tonight. I think as far as people helping you/us, it's their choice and in my case I think it's their way of controlling an uncontrollable situation. Not controlling in a bad way. I know my mom and dad are going through a really hard time with this. They help me out with a lot of stuff. Just let them help.

 

[MaxEidswick]

>I know my mom and dad are going through a really hard time with this. They help me out with a lot of stuff. Just let them help

Great attitude! Hang in there ...

 

[Clearwater AL]

I try to remember everyday there are folks much worse off than I am. Know two people battling the big "C". Both aren't winning. Both know it. One had surgery that left the side of his head/jaw terribly deformed. Both suffer pain we can't imagine. The frustrating thing of PLS most people don't have a clue. Sometimes if you say, "It's a rare form of Lou Gerhigs Disease"... but most aren't familiar with that either. Then, the ones who are, you have to explain what you have is not fatal. And... no matter how far you have progressed there are many who are further along than you are. Finally, I never forget those who have ALS. Hope you'll be as good as good can be for you everyday.

 

[MaxEidswick]

Hi, Kelly --

>I try to remember everyday there are folks much worse off than I am

I am with Al on this. I am getting worse, but it could BE worse . So, today, I am thankful for my right hand. I just wish it could type better ...