Recent content by Harry77

Thanks for the feedback folks. Looks like we'll just we'll just keep trying differant med combinations for now. The wife doesn't want to give up the cath and doesn't want to go through another procedure for a suprapubic. One day at a time.

Hi folk, was hoping I could pick everyones brain a little. My wife had a catheter put in about three weeks ago and has had nothing but trouble with spasms since. Leakage doesn't bother us, but I hate to see her go through all the discomfort when she has an attack. So far we've tried four...

I didn't see anyone mention this, but one of our CNA's suggested we heat the water we mix the meds in before mixing. We use about 15 sec for 2 oz of water, in a plastic cup and this has worked extremely well. Just double check the temp before before dispensing through the gtube. Works really...

Hi Al sorry to here of your problem, but it's ironic the wife and I had a similar conversation this morning. She's trying to avoid a cath, but can't wake me at night and wakes up with a drenched bed in the morning. Depends don't cut it. I actually went online line this morning and there are...

This is a tough stage of the illness and as Joel indicated there is no real time line or way to predict what will happen next. It could continue in a slow progression or you could run into a complication (flu, pnuemonia, fall) that could excellerate things to a few days. I know my wife reached...

Hi Tich; My wife's nuerologist suggested she get her peg early, about 1 1/2 years ago. Good thing too, her lung capacity dropped off quickly after that and she may not have been able to have full anesthesia for the procedure. She didn't want to be awake either. She hasn't been able to swallow...

Sandra; I agree with everyone else, don't assume the worst. Hopefully you'll get some definitive answers, but if not try to be patient. DXing ALS is a process of elimination, they rule out everything else first and then start focusing in on ALS. Hopefully your DX will not be ALS, but if you want...

It took almost a year for the wife to loose her voice completely, but she did have good and bad days where her speach capability varied quite a bit. We also had a period of about two weeks when her speach system crashed and we came up with a real "cheap and dirty" quick fix. We used the glasses...

Sounds like everyone covered the high points pretty well, but I would reiterate the anti-anxiety meds, doing things now that will become more difficult in time and using appliances before they become a necessity. We can’t beat this disease yet, but we can maximize our quality of life and enjoy...

We're getting our PT through Hospice, but Medicare is paying Hospice. What "goals" would they establish for an ALS patient? Sounds like someone at Medicare doesn't understand the illiness. Comfort, care giver training and assessing the patients progression are the primary goals. ALS doesn't get...

Hi Ronda; Hope you didn't give up yet, after 2 1/2 years of dealing with this illness I've found there is unfortunately no one perfect source for all the answers, not even this one. The folks on this forum are genuine and I have found them very helpfull on several issues my family had been...

Laura; Have you contacted your local Hospice? The "rules" are very loose with regards to ALS patients. If someone qualifies for Hospice care, Hospice can generally provided some caregiver assistance, sometimes up to 4 hours a day, 5 days a week. This has been a huge help for us, in providing a...

I agree, talk to your doctor. The day my wife got her DX, the Neurologist also gave her a perscription for a sleeping aid and anti-anxiety medication. ALS is tough enough to deal without depression and loss of sleep. You'll still have good and bad days, but hopefullly more good days with the...

Kelly; We had a bad experience with Medicare/Health insurance that went on for months, until I found an advocacy group that gave me an answer in a day. I've attached the address of the group I worked with, they're located in CT, but maybe they can redirect you to someone in your state. They were...

Hi Tatjana; Sorry to hear about your Mom. My wife was DX’d about 2 ½ years ago and we have three children ranging between 18-22. We have gone through a lot in the last couple of years and are still adapting daily how to best handle our situation, but our youngest son sounds very similar to your...