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LisaM

Member
Joined
Jan 9, 2008
Messages
21
Reason
Loved one DX
Diagnosis
11/2007
Country
US
State
California
City
Los Angeles
I am so glad to have found this site. I have been reading through the posts for 2 days now...you have all left me so inspired and enlighted at your strength and courage.

After 2 years of symptomology which started with imbalance my father was finally diagnoseded with ALS. For all this time Doc's speculated the entire gamut of potential neurological disorders all the while saying "At least it's not Lou Gehrigs" as all his tests came out clean. Yet, now we are here.

In two years he has graduated from the cane to the walker then wheelchair to basically being bedbound. His arms have significantly progressed in giving out on him as well.

He is 73 and like many stories here, was climbing mountains when this started and is the healthiest one in our family, by far. There is no rythm or reason...it just is...and now we all need to go through the range of emotions and difficulties.

It assaults the life of the patient and their caretakers...it has served to take over the lives of my mother and I but we still find a way to talk and laugh.

What makes it worse is that I found this site because I was searching potential causes for my own problems. I have been SO healthy (although I am only 32). Haven't been to a doctor in years, though I realize that's not necessarily a good thing. Yet right before Thanksgiving my left foot started tingling and now I feel a sort of weakness and numbness in both feet and an odd feeling I can't desribe in my hands. Reading some people's stories here has served to offiically freak me out for the first time in my life. I am so scared.

I know that it could be anything - fatigue from difficult transfers to make my dad to the bed, to the car, to the bathroom, showers, driving long distances to get to work, stress from trying to do it all, psychosomatic symptomology. It could be anything...but, it could be ALS also. Can't it?

I can't see a doctor either because I am scared of being locked into my job because they find something and then I become uninsurable if I change jobs, which is on the horizon as I have finally found a path in life that I am happy with and in the middle of grad school...my one saving grace in all of this.

I have not talked to anyone about this and it's starting to eat me up. I don't know what answers I am looking for from all of you. I am happy to have found a place to talk to people that "get it" though.

Thans for listening.
 

trustinggod

Distinguished member
Joined
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Messages
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Lost a loved one
Country
US
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CA
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Lake Forest
Lisa,

Welcome. I am glad you found a place to voice your fears and concerns and take refuge from the daily trials of life as a CALS (caregiver to person with ALS).

There are many here with much more experience and knowledge than myself and I know they will be weighing in soon however, I wanted to tell you to CALM DOWN.
You've been under enormous stress both emotionally and physically which may be responsible for all of the symptoms you mentioned. Many times my hands and sometimes my feet would get tingling sensations (still do) after a day of lifting and bending and running up and down stairs a million times caring for my friend with ALS.
Sometimes in the middle of the night I'd be awakened with a horrible, long lasting Charlie Horse in my foot or leg and think "Oh my God I have ALS" (that was the very first symptom {in hindsight} that Linda had). Being so close to everything that happens in the progression of ALS is scary. Never once while caring for Linda did I worry about "catching" ALS but now that she's gone I sometimes worry (unreasonalbly)
that science will discover that ALS is contagious. Crazy thoughts I know but they do
tumble through my mind occassionally. If I'd let myself I could attribute many of the various unexplainable aches and pains, ocassional weaknesses and twitchings to possible early signs of ALS. Crazy thoughts that scare me sometimes and always remind me to pray for a cure.

You are not alone in your worries and now that you've found this forum, you'll always have "us" to help you through your days.

God Bless,
Jeanne
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Hi Lisa- sorry to hear about you Dad but glad you decided to join us. THere is a lot of good infromation around here and folks are really supportive. As for your own concerns, I bet you have a pinched nerve or something from transfering your Dad. THat's my first guess. Cindy
 

LisaM

Member
Joined
Jan 9, 2008
Messages
21
Reason
Loved one DX
Diagnosis
11/2007
Country
US
State
California
City
Los Angeles
You are both right. I know. I do need to calm down and it is probably a pinched nerve. When my hands started to feel a little weird along with my feet and I tripped over the carpet because it seemed like my foot didn't lift property, I began to freak out about the feelings and tingling. Especially when I read similar such stories here. I just really, really need to learn to take care of myself better and find ways to relieve the insurmountable stress. Thank you SO much for the support. I appreciate it.
 
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