Help the "newbie" figure this out!

[angelbaby'smom]

Hello everyone,
WOW, what a wonderful group this seems to be. I am brand new here and really don't have a clue as to what I am doing. Let me give you some history. I'm a 40 yr old mom of 4 living in Michigan. My Mom and Dad live in Mississippi - right where hurricane kat struck last year....we thought we had a miracle when they and most of their house survived but now here we are a year later and Mom just got the word - als. Not sure where to do from here. Her health has declined quickly over the past 6 mos. Just looking for someplace to vent, get advise and have a sounding board. I know the basics of als but any additional comments would be greatly appreciated. Mom and Dad are not ready to do any talking or planning - still trying to absorb the info and praying for miracles and not wanting to talk aobut it. I'm more the realist trying to push for planning for the future. Oh well, I just need someone to talk to. Thanks for being there. Looking forward to spening time with this group.

 

[Eponine]

Hi angelbaby'smom

Welcome first of all. I'm new here too. I'm a single 40 year old and my dad lives with me. We found out in July and everything is still new to us too.

He has declined too this year. I don't know how much help I can be but if you need to vent, please feel free to do so! I have a few times already.

It's so frustring. In your case it must be so much harder since you are not near your parents. I am lucky that our entire family is all in the same area and we get support. It will be needed especially down the line.

Contact their local ALS and MDA center and get registered. Ask their doctor what the next step is. I know for my dad, it involved several doctors. Right now he is holding his own but there is a big difference since the beginnig of the year.

The ALS center here in Mass has been wonderful. I would contact them as soon as you can. The sooner you have the information and support the better.

Good luck!

 

[angelbaby'smom]

Eponine--
Thanks So Much For Responding. We Are Not Alone In This. Thanks For The Advise. I Hope Everyone Keeps It Coming. I Sure Know I'll Need It. Can You Give Me Any General Info On Progression And Time Lines. I Understand Every Case Is Different But Anything Would Be Helpful. Mom Is Very Unsteady - Legs Lost Much Strength Already And Arms And Hands 70% Gone. Breathing Fine, No Choking...just Mobility Fading Fast. Thanks Again...hug Your Dad And Appreciate Every Moment. Best Wishes And Thanks Again.

Laura

 

[Al]

Hi Laura. Sorry about your mom. Mtpockets who is a regular here is from Gulfport Miss. so if you need any information specific to that state he's a good guy to ask. The question of time lines comes up with new people and there is really no clear answer. I've been 3 years and am just now having mobility issues. A guy I know went from walking to a wheelchair in 6 months. His hands are good and mine are crappy. There is just no telling how it will affect us. Sorry I couldn't give you a better answer than that but that's the nature of the disease. AL.

 

[Eponine]

Hi Laura,

As mentioned, it's tough to give a time line. My dad was diagnosed in July and is currently in a wheelchair most of the time. Since January of this year, he has gone downhill fast. First it was his left arm, then slowly his right arm, now his legs. Most it the past 2 months.

Plus on top of all this he was diagnosed with prostate cancer one week prior the diagnosed of ALS.

We just take things one day at a time. Have you tried contacting a senior service in their area? Through ours, we are able to get a home health aide in for 7 hours a week. It helps. We also had to hire someone full time during the day since he can't be alone anymore.

Good luck and let me know if I can help!

Susan

 

[cartman]

time line

als for one year, but just diagnosed for sure at university in st louis---started with stiffness in hips and progressed to legs and arms---just now getting labored breathing---would like some info breathing progression--also first real notice of choking---have muscle pops all over body---very intense skeletal pain and muscle burn---pain increased as als progressed----difficult for family, but am blessed with wife who is rn and treats me with patience and kindness---this is my first discussions with other als---hard to discuss this illness without sounding like a sniveler