CALS Roll call

[cheerleader]

Jen, it's time to pull out the big guns with the insurance company- and don't back down! If the U.S. Government, VA recognizes the immediacy for things like the wheelchair, then...... I wouldn't talk to the insurance rep,but go right to the top. Threaten lawsuit, whatever it takes. Whoever you talk to, give them succinct facts about ALS, the progression, etc. don't take no for an answer after you've talked about the falls, possible injuries, etc. the one thing we CALS have to be is tough, demanding and persistence- not fun traits but--- if it gets the job done for our PALS, we have succeeded in our mission. Donna

 

[Day by day]

I didn't think I would come back here, but its just so painful, knowing that such a short time ago I was checking every day for advice, alternating between hope and despair. I prayed for it to be over, to have some sort of normalcy -nowthat actually makes me sick to my stomach with anguish thinking I ever wanted one less day with him. Its only been 10 days since he left so I'm hanging on to the prayer that some day this will hurt less-I can't live in this pain forever. I just don't know I will live without him.

 

[affected]

hugs day by day - you name says it all, though it's often hour by hour xxx

 

[Barbie]

Oh Day by day, your name says it all...hugs to you we love you!

 

[affected]

Wednesday morning in Australia and I'm here. Spraying aeroguard madly before walking around on the property (insect repellent). Don't like the poisons but mostly I spray it on my boots and socks and clothing.

 

[Barbie]

Hi Tillie. Tuesday here. how is your weather? today felt like fall here...upper 80s.

I hired some extra caregivers today to try to combat burnout. I need one for me to make sure I don't run away from home! that is what I want to do!

I think my husband has gained a little weight from all the coconut oil. not a lot, but his face doesn't look quite so haggard. but he is very pale all the time. He says he feels good though.

 

[Gembead]

Good morning, it's Wednesday here in Aus, today I take BJ to his first stay at a respite centre so I can attend a quilting camp until Sunday, 250 ladies attend all busy sewing and chatting.
Mix feelings between a little guilt and looking forward to relaxing and catching up with friends.
We are both coping well and taking thing s just one day at a time.
Love and hugs to you all.
Love Gem

 

[lgelb]

DJ, let me know if you need any help w/ the Astral. If she is breathing more shallowly/quickly, she might need more distance between the IPAP and EPAP (the latter should be at the minimal setting).

Tracy500, as you probably found out, the "sniff" test relates to the muscles in the diaphragm and how well they are responding to the nerves that are supposed to control the diaphragm during breathing. Let us know how it went.

Jen, K's doc should be able to write, or write another, letter of medical necessity regarding the order for the wheelchair. Frankly, if s/he wrote it properly the first time it would normally have been approved given we are talking about ALS. Call the office yourself, and then follow up w/ the payor (ask for a case manager). Emphasize ALS, rapid progression, falls and the inconvenience of seven-figure lawsuits (if you have to), in that order. Who is your carrier?

Tillie & Mike, hope you are both on the road to recovery!

Best to all,
Laurie

 

[affected]

Wish our CALS would answer the call each Wednesday like so many PALS are doing as I think of you all the time.

Thanks Laurie I seem to have recovered completely now.

Had a day of tears grabbing at me on and off, but they are to be expected.

 

[scaredwifetx]

Hi Tillie. I am here reading everyone's stories of inspiration and battles. My last week has been totally frustrating and has knocked some of the wind out of me. Reading how well you all deal with issues kind of keeps me in check when I just want to run for the hills.

 

[affected]

Scared, wanting to run and staying is courage xxxx

 

[gooseberry]

Scaredwifetx, we all struggle too. This forum keeps us partially sane

Checking in a day late Tillie...meltdowns, construction speeding up, mental co fusion all lead to fun!

 

[Loverly]

Kathy is in the hospital. Weakness and feeling generall crappy. It was discovered tha her sodium is low, but mostly this is just a progression of the disease. She looks terrible this morning. Why does it seem the hospital drains all your energy? Both the on site doc and her neurologist feel this is the turn toward the "relentless" progression. To me the unspoken words were "towards the end." What else could they mean? She is being discharged and going home by ambulance.

Crying and crying and so damned angry.

 

[Barbie]

Hospitals are horrible. going home is the best thing.

sorry for your sorrow. it sucks.

 

[scaredwifetx]

What a nice thing to say Tille. I will remember that in my times of craziness.

I am sorry to read about Kathy. Getting out of the hospital and going home will be good for her. I wish we could all be there to hand you Kleenex and a punching bag. Just know that both you and Kathy are in our thoughts, anger and our tears.