At 23%fvc and is very weak

Rhonda Kim · 07-18-2009, 08:28 PM

Hi Everyone Do any of you know how low a persons fvc can go. My husband has the bulbar form and his breathing is at 23fvc. He is very weak but still cares for all his own needs. He just doesn't want to get out of bed. He says he thinks it is depression. I'm not to sure. He refuse to go back to doctor. He wears his bipap most of the time. I can see him struggle really bad when he takes it off for more than 1/2 hour or so. In the last 2 to 3 weeks he has started writing most everthing down. It just takes to much for him to talk. When he does talk I only undestand about 10% of it. If he would get that H1n1 we know it would only be a mater of a few hours. To here him tell it ,it's all Lou's fault.

Thanks for listening, Rhonda

Zaphoon · 07-18-2009, 09:54 PM

An FVC of 23 is not good. I'm sorry your husband is having such a tough time and understand his difficulty. As far as depression, it is a common biproduct of MND. I'm guessing no anti-depressants are currently prescribed. It might be a good thing to check into.

Zaphoon

Rhonda Kim · 07-18-2009, 10:14 PM

Hi Zaphoon Joe is on zoloft and lithium. I said he might want them to up the zoloft but he said it makes him feel cold or a lack of feeling with what he is on now. I guess if I was breathing like him I would feel depressed too. Thanks for the imput.

Best Rhonda

Zaphoon · 07-18-2009, 10:22 PM

Rhonda,

God bless you for all you are doing for your husband as he battles day to day with this insidious disease. It must be as hard on you as it is on him - maybe even more difficult.

I know each time I go in for a follow-up appointment, the first question I'm usually asked is, "Are you depressed?". Sometimes I just want to answer, "Hell yes!" but my answer is always no.

I'm pulling for the both of you!

Zaphoon

brooksea · 07-18-2009, 10:24 PM

Hey! If Zoloft isn't working you've got to try something else! My husband has had good results with Lexapro. It seems to be the only thing that doesn't give him awful side effects and lifts his depression.

Sorry y'all are going through this. Gosh I wish there was something out there to help even just a little.

Zaphoon · 07-18-2009, 10:34 PM

Thanks, CJ! If I could borrow the doobie from Mona, there, I'm sure it would help.

joelc · 07-18-2009, 11:21 PM

Rhonda, sorry for what you are going through. Advise has already been given for medication to take care of the emotional problems. Have you considered a trache and vent for the breathing issues? It gave me my life back and also my mobility. I was a the zoo today with my kids and grandchildren. I could not have done this prior to my trache and vent.

GlenBrittle · 07-19-2009, 03:24 AM

Hi Rhonda

I can only say this from personal experience.

I got a lot of energy back when I stopped the lithium. I was taking it in combination with the Rilutek.

I don't know why it was prescribed, but would at least question it. If you do decide to exclude it, do so slowly with the help of a doctor. Its not nice coming off of it.

Hope this helps.

Glen

Dana Razo · 07-20-2009, 07:12 PM

Oh so sorry to hear what you are going through!Just remember you are not alone. We are here for you and we are praying for strength and peace.
God Bless You,
Dana

shankar.yes · 07-29-2009, 06:23 AM

Hope he is able to visit the doctor, and feels better. This is a bad form of a bad disease, My mother also used to sleep a lot due to lack of oxygen, she used to write things down too. take care of him and yourself too.

Rhonda Kim · 07-31-2009, 06:02 PM

Hi All Thanks to all of you. Joe's Dr upped his zoloft and it does seem to be helping. He is also going in for a consut for a peg tub on tuesday. He said at first he didn't want it but he has chocked so much he has changed his mind.

Thank you all again for your concern it helped alot.

Rhonda