New Here, Just Sharing the Pain

[MMuse]

Fencer - My Mom (79) is going for her second opinion next week. She had spinal fusion surgery in July and was supposed to recover and start walking and getting back to her normal life. Somehow, her recovery wasn't coming along. We kept tracking her progress, or lack of, and were wondering why. By December she was in a wheelchair. We thought the spinal surgery had failed. In January she looked thinner, her voice was different, she started choking on water, she didn't sleep because of leg spasms and her legs were thinner, atrophying, and so spastic that they would not bend. On Feb 9 the neurologist told me she had ALS. He didn't expect me to know what ALS meant and started blurting out that maybe she didn't have ALS, maybe he was wrong so he scheduled this second opinion appointment. I knew simply because I kept looking for reasons for my Mom's symptoms. When I first read about ALS I thought "no way, very unlikely". Little did I know it would be my worst nightmare diagnosis of my Mom's disease. We haven't told her what she has in detail. Since her surgery she has gone from 148 pounds to 115 pounds, unable to walk, cannot lie on her back because she can't breathe, and with such terrible spasms that the meds barely make a difference. So yes, I understand what you are saying about seeing your Mother go through this anguish and pain and being able to do absolutely nothing about it. My 86 year old Father just wants to know when his wife of over 60 years is going to get better. He's doing great, has quality of life, always happy and wonderful but he's beginning to realize that his strong, independent, dignified, wonderful, loving, wife is never going to be the same. This is horrible, terrible, and just not right. I pray for you and all the others who are going through this nightmare. The cruelty of it is almost unbearable.

 

[handinhand]

Fencer, just checking in on you this evening? How are you doing ? Keep coming back to the forum...it will help you..Hugs,L

 

[Blubear]

Hi Mmuse, Welcome to our forum! Your story is so much the same as the others posted here. Please keep us posted on that 2nd opinion. It sure sounds like ALS, but you never know right! Either way, mom needs to get a BI-PAP to sleep NOW. My dad got his before his diagnosis because of the sleep problems. They originally thought he had sleep apnea. The BI-PAP will help her A LOT! She will feel better during the day as well. PLEASE KEEP US POSTED! Hang in there!
Hugs, to you and your family!
Blu

 

[jdd61]

Hi Fencer,I feel your pain,I do understand what you're going through.My mom was diagnosed back last January09.She started by slurring,now she has a feeding tube,she can't talk,barely walk,her hand are not very useable,her swallowing is horrific,she even tries to shove food down her throat.I do think she has Dementia now,When I ask her an yes or no answer,She just stares at me.She seems very confused,and now she falling down alot.So I know how you feel,for real....Hang in there

 

[Fencer]

I'm having a rough week. Just not finding the strength.

I'm also still adjusting to not smoking, which I hear often leaves a smoker feeling depressed, so the "double whammy" is taking its toll.

Good timing, I know! Maybe I should have kept smoking and drinking my ass off until my mom passed away. But would that have been a better time to clean up my bad health habits? Who knows.

 

[Blubear]

Fencer, you are a STRONG person my friend! I started smoking again after my husband died in 2007, and now with my dad sick with ALS, ....quit? Aint gonna happen! But good for you, and stay strong!
Hugs, Kari

 

[Fencer]

Thanks.

But honestly, I feel about as strong as one of those little glass figures on somebody's shelf, ready to smash into a million pieces if someone or something bumps me the right way!

 

[emsmom]

Hi. I am new here, just joined today. My husband was told on Wednesday that "he meets al the criteria for ALS". It is bulbar onset and mostly affecting his speech at this point. I don't want to sit here and stare at him wondering how long? what next? He isn't the most positive person anyway, thinks like Eyeore. I am just trying to learn all I can and cope day to day.

 

[Blubear]

Hi emsmom, Welcome to our forum. So sorry to hear about your husbands diagnosis. This is such a shocking, sad and confusing time, I know. My dad is Bulbar onset and and has had symptoms for almost a year and is still going strong. Everyone is different, some progress slowly, some quickly. Once you get over the shock, just try and educate yourself as much as possible, tell him to keep the stress levels down, and attitude is key. We are here if you want to talk, ask questions or just vent.
Hugs, Blu

 

[BarryG]

MMuse, welcome to the forum and so sorry about your mom. This disease is so hard on everyone and it is horrible that your parents have to be going through it. I hope that there is some way we can help you help them.

emsmom, welcome here too. I am bulbar also, diagnosed January of 2008. Losing your speech and the ability to eat is absolutely no fun so if you have any questions please ask away and I will try to help.

 

[MickMac]

Hello Everyone;

I am one nervous guy awaiting my neurology consult. I had my EMG and NCV tests. I was told my LMN were not talking to my muscles well and I have fasciculations picked up on the audible
monitor. It's been almost a month since then. My cramps and transient pain seems to be easing to my legs and feet. I'm still stiff at times though after sitting. I'm more concerned about
my breathing now...it feels as though my chest is heavy at times...can this be? Or am I just anxious? Going to my GP this week for advice. My onset was only early in January of this year.
Thanks for your time.

 

[Blubear]

Hi MickMac, Welcome to the forum. I hope that all of this turns out to just be a false scare hun. Your chest being heavy a month after onset could very well be stress and the anxiety that you are going through. Try to hang in there, stay positive and let us know what happens after you see your GP. We are all here for you!
Hugs, Blu

 

[paleshia]

fencer, there are moments for me where, i think, "i'm ok, i can do this, other people do.....and then there are moments of sheer breakdown of thinking i am not strong enough for this, i can't do it." but then i keep on keepin on because...well...what other choice do i have

 

[Fencer]

Spent the day yesterday driving my dad around to stores and the bank, basic errands. I have realized he is in much worse shape than he was when my mom first got sick. He can barely get in and out of the car, uses his shopping cart like a walker and is just generally getting forgetfull and a bit crazy.

I guess we all overlooked his condition lately due to the obvious need to focus on my mom. His problems are more general, old age combined with a few long-term chronic issues. Mentally, I'm sure he is getting worse due to the stress of seeing what his wife is going through. I realized we are at the point where my mom isn't the only one who can't leave the house alone and may need 'round the clock care soon.

Of course, spent some time with my mom during the day too. She is reduced to groans and grunts now. Looks like she has lost more weight.

Oh God- just too much at once, ya know?

I started smoking again today. Got to work, found a bunch of annoying things waiting for me, just couldn't stop thinking about yestertday and didn't have any strength or patience left for the job. I pray for help, for a boost, and it just wasn't there.

Oh well. Not a good week.

 

[Blubear]

Oh Fencer, I know I cant give you the boost you need, but I am sending a big understanding hug your way! Ya did really good on the quitting smoking thing for longer than I would have made it. Dont beat yourself up for smoking again, you can try and quit again when things settle down. Ya need to find a way to regroup. Do you exercise? Go for a walk, clear your thoughts hun. You may want to see about getting dad to a doctor, maybe there is something that can help him with his health as well. You are all grieving and its taking a toll on everyone. Thats the natural progression of emotions. I feel your pain hun, I wish I could be there to ease all of your families pain somehow. Hang in there, take care of YOURSELF first so you are able to take care of everyone else. Deep breaths!
Hugs, Kari