PML

[stillstANNding]

She is getting used to the drugs and the mental side effects have dropped out.
She is getting a new phone today so she can just say, Call ANN to dial. Husband is also setting up computer so she can speak her emails and have them read to her. Big leap forward.

I am hopeful.
ANN

[Virginia]

Good news Ann. This will help her psychologically as well as keeping her more safe. She will feel more connected.

[stillstANNding]

I talked to her yesterday and the paranoid feelings are back.
ANN

[stillstANNding]

Virginia asked how J is. There is both so much and so little to tell. As of 2 days ago, she was still home w no support when her husband is at work (part time).

She never was able to learn and remember how to use the new phone w speech to text and to have it read her texts. It would have helped so much. She can't call me at all. I call or text her husband and then he calls me and gives her the phone or he forgets. I haven't talked to her in a week and a half.

She is off of one of the two drugs. One was just for 2-4 weeks. The other is for a longer period.

She has had an array of emotions. She had been unusually upbeat and childlike. Then w the meds she was also paranoid. The paranoia included her not trusting her husband or me. He could not talk to me except when he was out of the house.

Lately, he said she has been very angry. And angry at him. It has been stressful for him. Docs said it is personality change from PML. MRI was done at the end of last week to check progress in either direction and for IRIS. Docs don't work on Fridays there so no results until Monday.

Please continue to pray for her.

ANN

[nuthatch]

Thanks for the update, Ann. I was just thinking about your friend and wondering how she is doing.
I am surprised that she is on her own while her husband is at work. While she may not need any level of nursing care, she might benefit from some companion care that could help her to deal with deficits she might have, as a result of the PML. Trust would have to be established, and that may prove difficult if there is paranoia and anger involved.

Wish there were more ideas I could offer. Prayers that things will improve for her.
Hugs to you, Ann, for being a concerned, caring friend.

[Virginia]

Ann, thanks for the update. I was hoping for a better report, but seems that she has progressed in the wrong direction. Paranoia and distrust would be a hard thing for others to deal with, but also it must be awful to be that confused in your mind. I can't imagine what she is going through.

I have continued to pray for her and will keep on.

[stillstANNding]

I talked w her husband this afternoon. They have an appt to see the MS Specialist on Tuesday.

Her paranoia has extended to things and the house itself. Arguing that the bathroom is not the bathroom. It must be awful to not trust anything.

I wasn't abke to talk w her but might be tonight. I am very happy to have talked w her husband again.

Thank you all for your comments/prayers/good thoughts.
ANN

[stillstANNding]

I talked w J last night. Her phone was answered quickly. I don't know if she was able to do it herself. Her answers are word salad and then when she is not trying so hard, she will say, "i can't do that. ". So some language is there and she seemed to understand.

In answer to, How are your dogs?", she said "Oh, she is fine. She should be." There are two dogs. One is male.

She also managed to say, "I'll be happy to see him," when told that Peter says Hi.

I'll be glad to hear the MS Specislists plan and results of the MRI. Those come today.

ANN

[Virginia]

What an awful thing to have. My heart goes out to her.

[SuzE-Q]

Hope her MRI and doctor's appointment went well, ANN!

Is she on any MS treatment at the moment?

Such a devastating thing what PML can do. I honestly don't know if I'm ballsy enough to take the risk of it.

[stillstANNding]

Her husband did not reply to my text on Tuesday. Will repeat today.

I am risk adverse. I have worried about J amd PML since the day she started Tysabri but it did help her.

ANN

[stillstANNding]

I texted w her husband tonight. Their Tue Neuro appt was cancelled because she wasn't still enough during the MRI to get much info from it. Instead, she has another MRI scheduled this coming week.

Am I the only one that thinks this should be treated like more of an emergency? I beleve that she hasn't seen any health care professional since 12/22.

ANN

[agate]

Not in over a MONTH? That seems very wrong to me.

[Earth Mother 2 Angels]

((((((Ann)))))) ~

I agree with you that your friend should be followed by a neuro, keeping tabs on her condition and any changes which occur. I also wonder whether she would benefit from some kind of therapy, although I'm not sure what kind. Occupational therapy, memory retraining ... I don't know anything about PML. Would the kind of therapy given to stroke patients or dementia patients be helpful to her?

And is she safe in her home alone? That should be a major consideration by her physicians/specialists.

It seems to me that she needs someone to advocate for her. Is her husband up to that role?

Sending healing prayers for her, and strength for you.

Love & Light,

Rose

[SalpalSally]

I think DD is having reaction To herAubagli
She has the flu 24 hr day.
i want her t t off of it!