brooksea

I am doing ok, yes, the bipap and PWC is all I need, a pair of new legs would be good right now....bathroom breaks arnt going so well. My housing situation has to change, one moment at at time I keep telling myself. Thank you for thinking of me, been dealing with lots of bad personal family stuff, but all is getting straightened out slowly. Hanging in there! You remember to too. Love and {{HUGS}} Always!

Thanks for your reply regarding the bidet. I purchased the USPA 6800. Hope it works as well as some of the others people here have purchased. I'll know in a few weeks.

Hi Brooksea,
Thank you so much for the help, Im new & unsure on how the site works still. I like the photo you use here & think its wonderful how you share your knowlegde & offer help to others !

I enjoyed your post on "What was the best thing that ever happened to you.'' I have viewed your pics on here several times and your husband Don truly was a handsome guy. I like to look at the pics when he goes into the culvert to retrieve the ball. I am truly sorry your time with him was cut way too short but it looks like he enjoyed it to the fullest. Thinking of you and hope you are doing well. Hugs, Kim

How do you know his breathing is good? You say his pulse is irregular? I would suggest you pose this question to the general forum. As for hospice, normally, for example cancer, the 6 month rule would apply. Like I said, ALS is different. The level of care is daunting. Hospice may be able to provide more care than he is receiving at this time. I don't know. It seems to differ in each state and with what type of insurance coverage one has.

Hi Brooksea, I did see your message & replyed you - Im sorry, Im new here & think I might not be posting/ answering where Im supposed to be yet, the site seems great but rather overwhelming at 1st too. Im also confused on where it says to either "post msg." or " go advanced" here, not sure that my reply went thru to you before? Thanks for your help !

Thank you Brooksea for your reply. Im a little confused as you had mentioned a "6 month thing", is that the average time for when Hospice is brought into the picture? Its difficult to get much for answers from the Dr. or nurse involved, Im very confused - it certainly didnt seem like he was that far along with the ALS. His breathing has been good, lungs clear, eatings quite good & hes keeping his weight up. His aides do feed him as he can no longer feed himself or walk. The only thing the visiting nurse mentioned differently in the past wk. was that his pulse/ heartbeats were irregular. Other than his not being able to move around & talking only a little & slightly slurred, he looks like hes in perfect health - which seems strange. Thanks !

Hello, I noticed that it listed you as an extremely helpful member & Im new to this site. Id like to ask you if you know of "when" hospice care is usually brought in, and have you heard of many cases where it was mistakingly brought on board to early - example the patient wasnt ready for that or progressed that far yet? Im very confused because my fiance's ALS Dr/ visiting nurse just said she wanted to change his care from just having nurse aides coming to the home ( almost 24/7 theyve been there ) and now have him be getting "hospice" care instead. It was a shock since I didnt think he was at that stage or doing this poorly. Thank you & any answers/ advice you & or others can offer is appreciated very much ! Take Care

Hello! I don't post a lot but read plenty. Am ready to purchase a bidet as my bathroom remodel will take place in about a week. I noticed that you have knowledge about the Brondell Swash. i read on-line that it poses some challenged in reaching a woman's 'lady parts'. Did you ever use it? Did it work well for you? It's so hard to plough through the various models. The Toto seems so expensive. Did the Brondell need a hot water line or just an outlet? Thanks so much for any info!

Thanks CJ, they brought in oxygen yesterday,my mind is going in so many different ways

Thank you for your thoughtful "checking up", very kind of you. I'm doing well, but on a path which seems gradually to be revealing itself as rather different to most people here, so I'm not here very much. Which I feel bad about actually! I can't use a keyboard much any more, and I'm still finding the alternatives painfully slow. I have not read any of your news; may I ask how things are in your home?

Hello Brooksea. I've read some of your past posts, my husband seems to be affected by his ALS in much the same way your husband was. I'm sorry for your loss but appreciate the way you reach out to others with their questions. My husband was diagnosed in Feb., Bulbar onset. He's having lots of difficulty speaking, some choking with eating but no peg yet. Weight is good, all his respiration tests at the Duke ALS clinic are great (over 95%). He has a lot of twitching in his arms. My question, how long does the twitching go on before we see loss of function? He is still golfing and doing yard work. I can't imagine him losing mobility but I know it will happen. Also, he is so hesitant to get the peg, when do you think it best to get this procedure? We both wonder how this disease will affect us both down the road. If you don't mind my asking, what caused the final passing if your husband. Sorry for all the questions, I feel like I'm living in an unknown fog. Thank you so much.

Hi again,
Thank you for connecting. One last item about the fascics. I should be able to see and feel the twitches all the time if they are ALS. Whether the muscles is contracted or not. Is this correct. I can only see them with slight contractions at the moment. Thank you so very much. I have had a clean emg and physical by the neuro. These new twitches are making it difficult to relax at all. Take good care.

Hi Brooksea,
I truly appreciate that you took the time to reply. I truly am in a very anxious state and scared for my health. Yoiur support is greatly appreciated.
My fascics are not the intermitent little tiwtches when oi contract the muscle,, but rather the little rippling under the skin while contacting. Does the presentation of the fascicis matter? Thank you again for your support.

Excellent C.J.! I'm so glad things are turning around for you Dear One. Very glad indeed. You are in my daily prayers. xoxoxo