PML

[Virginia]

Ann, thanks for update. I too am glad you made the trip.

[Jeanie Z]

:) Thank you Ann for keeping us posted. Many prayers going up for all of you. You are a wonderful friend and she is lucky to have you. Take care of yourself too. Jeanie :)

[stillstANNding]

Last night she turned her head towards me when I talked to her - twice.

Yesterday's cat scan show a decrease in "pml activity."

This morning there was more Gastric bleeding. NG tube on suction. We are going through the woods w her.
ANN

[stillstANNding]

Central line was accomplished today. Hemoglobin did not drop from GI bleed. That's good.

I played music for her for an hour that I know she likes. There is a doc at MGH that does this w his coma patients. Her husband is going to record her dogs barking. We are not trying to wake her but just stimulate her brain w familiar sound. That's why I watched an hour of flipping houses on HGTV this afternoon.

I also asked for face cloths to roll up and put inside her fists which are clenched.

And Linda, the report of decreased PML activity on CT was wrong. There is not less, there is just not more. She is on antivrals and the "double dose" solumedrol.

I am thinking this is too much detail and probably broad strokes woyld be better but there are no broad strokes now.
ANN

[agate]

This is a sad and bitter thought but it's too bad that stillstANNding, who has MS, is one of the few friends this woman has, apparently.

I have to wonder where the MS Society is at times like this. Will anyone from the MS Society be around for us if we are ever as unlucky as ANN's friend?

Maybe I misunderstand the purpose of that organization.

[SuzE-Q]

This is a sad and bitter thought but it's too bad that stillstANNding, who has MS, is one of the few friends this woman has, apparently.

I have to wonder where the MS Society is at times like this. Will anyone from the MS Society be around for us if we are ever as unlucky as ANN's friend?

Maybe I misunderstand the purpose of that organization.

Or how about the DRUG COMPANY?!?? I didn't see THEM checking in on her at home, making sure she had the care she needed!

ANN, what are they giving her with the central line, the meds? Or nutrition?

You are such a wonderful support for her as well as her husband.

If you need to vent or share or if you need support, we are here for you. I'm glad DH is with you too.

Glad the PML has stabilized. Hope the meds lower the inflammation and the antivirals have some impact too. What kind of antiviral is it? I'm curious why it's not given prophylactically like acyclovir is often to keep the herpes virus in check, once diagnosed, especially since the JC virus is apparently not uncommon in a lot of people, it's just our immune systems are able to keep it in check unless we're on one of these monoclonal antibodies or other meds.

Is it dangerous to be on a steroid which lowers the body's immunity, or does the antiviral adequately compensate? Such a dichotomy, take a drug that lowers the body's immune system even more in order to alleviate the inflammatory reaction from the brain infection which took off due to a lowered immune system. It sure seems messed up.

Again, my best to your friend, and please take care of yourself too.

[Sunshine]

It's not too much detail Ann. We are all here for you and all hang on every bit that you share.

Indeed, where is the Pharma? Are they consulting with the docs. Do they have a protocol they ref to the docs? Same goes for NMSS

[Lazarus]

And Linda, the report of decreased PML activity on CT was wrong. There is not less, there is just not more. She is on antivrals and the "double dose" solumedrol.

No! You do not give too much information. I am careless.
Linda

[Virginia]

Ann, not at all too much information. We care very much and want to know everything you can tell us. I know her husband must be glad to have you and Peter there to help with decisions and just to talk and discuss things with someone who understands as much as you must be such a help to him.

[stillstANNding]

The antiviral is Cidovir.

Her husband, her son (in his 40's) and I are splitting up the day. Peter comes and visits for 10" several times ( basically to take me to family room for coffee or to cafeteria to eat. Then I send him out to walk around town.

About other people. We are over an hour from her home and she is in ICU. That limits what others can do.
ANN

[SuzE-Q]

Sounds like you are organized there, which is good to avoid exhaustion and overload.

Hopefully there will be some improvements soon. I love the thought of trying to trigger areas of her memory. It is a great idea to surround her with familiar sounds that provided enjoyment and happiness for her. Music can often be a tremendously powerful tool for this too.

Hang in there!

[Jeanie Z]

:) Ann how is your friend today? My mind goes to thinking about her many times each day. I continue prayers for all of you. Who keeps your cats when you are away? Jeanie :)

[stillstANNding]

Joy died at a little before 6 PM CT. The Brain edema never responded and her brain herniated into her brain stem.

I have permission from her husband to tell you that Joy was one of us BT-ers. She used the names, *Joy*, Electricjoy, and Jtwin. She kept forgetting her password. She had not been here in recent years but did come in and talk about sources of help to pay for drugs when I asked her to.

Get this: I woke up this morning fresh from a dream. I was in a neighborhood store back home. There was a giant black dog on the glass counter. His person was talking to the store owner. Iwent to the dog and he put his head flat on the counter and I stroked him. I saw a patch of missing black hair. I woke up and said, Joy! Joy had a patch of alopecia areata in her black hair. And the dog was beside the cash register! Joy was an accountant and a big dog person.

We had tickets to go home today and I'd like to think that Joy considered that in her timing. She will leave a big hole in my life. We had coffee "together" weekday mornings. We called, texted and emailed prolifically.

I talked w Joy's MS Specialist yesterday. The risk of getting PML while on Tysabri is still 1 in 1000. And there is no standard of care for PML. I'd like to think that Joy saved 999 other people from PML. Statistics don't work that way but it is a nice thought.

Thank you all for your support. I am in Little Rock, Arkansas but will be sleeping in my Boston bed tonight. Jeanie, my next door neighbor feeds our cats.

ANN

[Sunshine]

Oh no. I am speechless. I do remember Joy, and now I will always remember her.

Thank you for bringing her back in our lives. You are the true meaning of the word friend. I am just so sorry for what she went through, for your loss, and her husbands loss.

And I am stunned there is no protocol to treat this medication induced illness. For shame on the drug company...rest in peace Joy.

[agate]

Joy died at a little before 6 PM CT. The Brain edema never responded and her brain herniated into her brain stem.

I have permission from her husband to tell you that Joy was one of us BT-ers. She used the names, *Joy*, Electricjoy, and Jtwin. She kept forgetting her password. She had not been here in recent years but did come in and talk about sources of help to pay for drugs when I asked her to.

Get this: I woke up this morning fresh from a dream. I was in a neighborhood store back home. There was a giant black dog on the glass counter. His person was talking to the store owner. Iwent to the dog and he put his head flat on the counter and I stroked him. I saw a patch of missing black hair. I woke up and said, Joy! Joy had a patch of alopecia areata in her black hair. And the dog was beside the cash register! Joy was an accountant and a big dog person.

We had tickets to go home today and I'd like to think that Joy considered that in her timing. She will leave a big hole in my life. We had coffee "together" weekday mornings. We called, texted and emailed prolifically.

I talked w Joy's MS Specialist yesterday. The risk of getting PML while on Tysabri is still 1 in 1000. And there is no standard of care for PML. I'd like to think that Joy saved 999 other people from PML. Statistics don't work that way but it is a nice thought.

Thank you all for your support. I am in Little Rock, Arkansas but will be sleeping in my Boston bed tonight. Jeanie, my next door neighbor feeds our cats.

ANN

ANN, I'm so sorry! I had no idea it might be our Joy you were talking about! Just a few hours ago I went to her Facebook page to wish her a happy birthday (today would be her birthday) and noticed that others were wondering where she was. I was concerned but still didn't make the connection though I knew that you and she were close friends.

She last visited this board in July of last year. She cared about this place and the people in it. She was very active here for quite a while. We have lost one of our own.

Rest in peace, Joy.

P.S. I've added a thread about her in the Forget-Me-Not Garden of Memories here on BrainTalk.