ECpara

Hi Nancy,
Just dropped by to wish you a Happy Easter. Take care, Kim

Hi Nancy,
How are things going for you? Thought I'd stop by and wish you Merry Christmas. Take care, Kim

Hi Nancy,
How is your husband doing? My father is currently about the same. He uses a manual wheelchair when he goes out anywhere. He uses a walker in the house. His speech comes and goes. He needs helping cutting his food but still is able to eat on his own. He said he wil never get a peg or a vent. He does use a bi-pap at night and he sleeps 100% better with it. My dad takes the drug Ritulek too. Don't know if it helps or not. Luckily, dad doesn't have any side affects from it. Take care and drop me a line anytime. Kim

Long story short, my husband went to hospice, as they said he was in such shape that they needed to monitor him 24/7 to try and get his pain, feedings and breathing in a better place. They could not do that at our home. He was there a week and a half. He died of respiratory failure after suffering a terrible fall that put him in a coma. (He had some dementia in the last years, the fall was entirely his fault - not the fault of hospice.) I hope that information was somewhat helpful and I wish you and your family the best in dealing with this terrible disease. Feel free to message me anytime. CJ

Hey, ECpara. I'm very sorry about your husband. As far as the twitching goes, I really cannot give you a timeline til loss of function. I think that varies, depending on the rate the motor neurons are being affected. I know my husband would sometimes plateau and then the disease would speed up. The cycle would repeat itself. He was very much aware of these cycles. The PEG needs to be placed while the breathing is still good. According to the Emory Clinic, where we went, that should be a FVC no lower than 50%.

Thanks Casey for your speedy reply. That's pretty much how Tom feels, but the clinic was telling him to consider it while his lungs are so strong. He may go for the consultation to hear about it, but not line up the actual surgery until needed. His appointment yesterday indicated that he is progressing at ONE THIRD the typical rate of disease progression, and that he will probably continue to progress at the same slow rate throughout the disease. We are so thankful. He is such a positive person, you appear to be the same. Being positive does play a role in this disease. Stay strong! I am SO sorry you are going through this at such an incredibly young age. I will carry you in my prayers! Blessings to you and your family! Nancy

Hi Nancy,
In answer to the PEG tube. NO WAY.
Pride can be an incredible motivator. I am able to eat, so I eat, I take longer, but that's ok.

The biggest thing is weight. Unless I'm losing weight, I won't consider it.

I'm 41 years old, have two kids (boy 16, girl 9) who think I'm superman. I'm not ready to have them think any diferent.

Everything s a personal choice.
My weight is down slightly in a year, but I'm not worried about it yet.
Just last week, I started supplementing my daily meals with a can of "meal repacement" picked it up from Walmart. I bought the extra calorie version to see how it does.
They taste pretty good and it's kind of a "safety net" incase I don't eat perfectly that day.
Stay positive, and let me know if you need anything.
Cheers,
Casey

hi there thankyou so much for your kind words janette xxxxxxxxx

hi my name is janette my husband was diagnosed with pbp march 2012 his speech is a bit ok sometimes he is on rilutek 2 months now just looking for chat and support very scared but taking every day as it comes,,,he is very mobile but bothered with saliva build up he has a peg tube in but still eating some solids but told at his own risk and unfortunatley he has prostate cancer finished his x thanks janette my husbands name is henry x
radiotherapy on the wed and got told on the thursday he had pbp

Hello,
I am on Rilutek, started it in December 2010. I also take glycopyrrolate to reduce salivation. I don't wake up choking and coughing. I take Nuedexta for the pseudobulbar affect (sudden frequent outbursts of crying or laughing that cannot be controlled). These medicines have made a tremendous difference for me. I have not had any twitching that I am aware of. I am going to be tested in May to see if I qualify for the diaphragm pacer. My FVC is 43 and the FDA requirement is 45. My doctor thinks with a little help we can get it up to the required limit. My neurologist said since I am mostly upper motor neuron it makes me a perfect candidate. I try not to listen or take to heart the reports that say bulbar onset patients seem to live a shorter amount of time. I know that only God knows when it is my time and I choose to not look at the negative but embrace the positive. Thank you for the prayers and I will be sure to add you and your hubby to mine.
Linda