Two Year Anniversary

[Janie H]

Well today makes two years since diagnosis, I was still working back then and had slurred speech, got choked on thin liquids.
Today I was trying to use the sweeper and reached down to pick something up out of the floor and couldn't get back up, I am now banned from housework, my right arm is very sore, I go to clinic tomorrow.
So you newbies stop worrying, you still have some time left if you do what you are told, and listen to Max...don't fall.

 

[cheerleader]

Janie, and looking on the bright side, being banned from housework isn't all bad!
Congrats on a great attitude after 2 years.

 

[Nikki J]

Glad you are here! I am getting ready to ban myself from housework. Too exhausting!

Good luck at clinic

 

[chally]

good attitude! self-bannishment is a good thing! i stopped chainsaws,weed eatters,most power tools and i feel great, but really i'd give any thing to be able to get back into it all. not gonna happen so one day at a time. thanks chally

 

[MaxEidswick]

>couldn't get back up

hate that. 911 folks are real nice

 

[Green Queen]

Janie you are awesome. Keep smiling
God bless, Janelle x

 

[Janie H]

I have a respiratory infection, they want to call hospice in,they say they will bring all my Meds to me and I can call them anytime, they want to give me a power chair, I can still walk and don't need it, something to think about.

 

[cheerleader]

Janie, remember, with ALS calling hospice in is not the same as with other diseases ( less than6 months to live criteria). It just signifies getting additional help at home and letting the hospice team coordinate things for you. Like so much about ALS, it IS different. The diagnosis itself qualifies calling hospice ( my understanding from our daughter who was a hospice nurse.)

 

[Nikki J]

Sorry about the respiratory infection. Feel better. Who is the they who are saying pwc. If you are being told get the pwc now before going on hospice that is good advice

 

[Green Queen]

Janie I agree with getting the chair. From what I've read here it can take a while to get to you, and 6 months worth of progression may unfortunately make the chair a necessity.
I hope the infection has no plan to settle in. Take care.
God bless, Janelle c

 

[avnl]

Biggest gripe the hospice people have is not being involved early enough.
Anna

 

[Nikki J]

But you need to make sure you get all your equipment before hospice There was a recent post about going on hospice after pwc ordered but not delivered. Since hospice replaces medicare they did not get the pwc

 

[Janie H]

I really feel like my lungs will go before my legs, good news is I gained the ten pounds back that I lost in the hospital, thank God I have the PEG tube.

Janie

 

[affected]

Janie my dear friend TWO YEARS I'm going to pour a wine and drink to you right now!

My understanding of the system there is that you need that equipment before hospice, and it can take so long to get from an order to a PWC arriving it could be worth doing now. You don't have to use it all the time just because it arrives. Hey my Chris was the winner at having unused equipment stored in every room of the house :lol:

OK no more housework, and you have to get this infection cleared up, I've been wondering the past two days if that was clearing.

You make the decisions, but get all the facts, pros and cons in front of you so you can make the most informed decision on PWC now, hospice now or whatever other option you want to look at.

How wonderful you have gained some weight after that idiot doc said all that stuff when you were in hospital not that long back. You are amazing

 

[Janie H]

Hospice spent three hours here today, I have to be sure my other benefits that I fought so hard for are not affected, signed the paperwork but told them to hold off until I can be sure, most of Meds and equipment are paided for, I need it to stay that way. I have a Lot of doctor bills from two years ago.

Janie