Blog

Do I have als? So scared

For the last few months I guess you could say I had this muscle stiffness in my wrist forearm and left lower calf. I noticed it whenever I played basketball but it never had any impact on me working out or playing basketball. Recently this stiffness progressed and turned into a weakness above my knee/ upper thigh and my foot has this weird sensation that travels all the way to the tip of my toes. Almost like a tingling sensation but not quite. I also have a slight twitch. I fee fatigued in general but I think that's just depression because of these symptoms. I'm freaking out and scared.

Does this sound like als? So scared.

I am a 19 year old male. I guess for the last few months I had this stiffness in my wrist area and around my calf but I never paid attention to it as it never bothered me. Recently since last Friday, the stiffness increased and almost turned into what felt like a growing pain. Since then my leg and arm have felt a little weaker and twitching. My foot has been getting weird sensations all the way to the top of the toes. Right above my knee is very twitchy, weak, fatigued.

Lara's Tale, Part One

I do not know if writing my story down will be of any help to me.  I doubt it will be of help to you but I need some way to purge myself of the crazy roller coaster of emotions I'm going through.  My therapist suggested I keep a log of feelings and issues as a way to help me cope with ALS.  I had tried to journal earlier but hated everything I wrote so I quit writing.

Miss you dad.

Hi Dad, I miss you so much dad. I just wish you were here to talk too. I still look at the clock at 11:30 in the morning and at 7 at night and then remember that I can no longer call you. Yesterday, was a hard day for me. It was 23 years ago that Brian asked for your permission to ask me to marry him. Dad, What should I do? I still love him so much. Should I throw in the towel? Is there still hope for us? We still love each other. I am so lonely.

ALS is not a war, it's a roller coaster.

I often read about PALS fighting the battle and being told not to give up. Every time I read that, I feel a little confused, and now I understand why. That view assumes a war. And wars can be won or lost. Too often, people dealing with ALS think they're in a war that they're bound to lose. But that's not how ALS works. Normally, life in middle age is a fairly comfortable ride, with no idea how long it will last or how the end will come, so we ignore that.

Successful Grief Recovery: How to.

When I first read EKR's On Death and Dying decades ago, I was elated that someone would bring such an important subject out into the light. But I was skeptical of her methods. Indeed, now there is much criticism for her unscientific approach. The 5 Stages of Grief taught in Psyc 101 are good food for thought, but they're certainly not the final word. You might find a book on grief to help. To be honest, I flipped through some books at the bookstore, but never actually took one home.

A start

I wanted to start a blog months ago, but never could find the link. Maybe I had to wait a certain period to get access...who knows? Anyway, I was diagnosed with ALS in June 2014. At that time I had a slight toe drop but no need for orthotics or a cane. My voice sounded strange to me but most everyone else said I sounded fine. Maybe they were just being nice. My right hand was a bit weak, but nothing bothersome.

Isolation. Why friends abandon us. The meaning of courage.

Up to now, I've always been curious why people would say 'you're so brave' facing ALS. It just didn't make sense to me. After all, we're just doing what we have to do. Friends and family have abandoned me. Sometimes, ALS will even destroy families. I've seen more than one spouse leave a PALS. Why? People can't relate to ALS. The 'terminal' part of the disease freaks them out. They can't get it out of their minds and they don't know what to say or do, so they panic and avoid us. Even our best friends get really uncomfortable and might clam up.

Hemi- Facial Spasm- Atypical

Well, 4 years later -after my first 'episode' (how I refer to my spells) I was finally told that I suffer from Hemi-Facial spasm. My MRI shows an active legion on the left side of my scan however it hasn't changed greatly since my first MRI in 2010 so that is promising. Most days are great- I am fortunate that my illness doesn't effect me everyday. Usually comes on when I am fatigued, overheated or during my menstruation. My neurologist hasn't ruled out MS but says if it is MS it is slow to progress currently. The only thing that is odd for me is that my spasm is Atypical.

Pages