We are hoping to have a electrode system when we can find the company that makes them which may be helpful .
Sincerely
Ann Carter

Many thanks

Hope to hear from you very soon

Several major hospitals refused to accept her, citing lack of further treatment and that she would most likely not survive transport. My 21 year old nephew, her next of kin, was asked to consider termination of life support; something my sister was asked numerous times over the course of three days.

Through blinking, she responded affirmatively each time. Her choice is one I honor and will never judge as persons who’ve not embodied this rarity do not possess that right.

Her life support was terminated at 4:30 p.m. on March 21, Good Friday. Despite depictions in Lifetime movies, death does not come swiftly. She held on to life until 10:00 p.m. Easter Sunday night, such is what happens when seemingly strong and healthy people are struck down in what should be the prime of life.

I will remain haunted by her tears and the look in her eyes, the depth of fear she felt is unfathomable. That final week of her life was the first time in seven years we’d connected beyond random phone calls and emails. The pain and joy of reconciling a past in a present that yielded a very limited future is indelibly etched upon my being, as well it should be.

Several people on the morning of March 21 tried unsuccessfully to rouse her from rest. I remembered a photo tucked in my wallet for 20+ years and recited it’s history as I held it in front of my sister’s face: “Pat, look, this was mother’s favorite picture of us, taken in April, 1969. You got to choose the dresses, mother said it was probably the last time we ever smiled together.”

My sister with every fiber of her being opened her eyes wider than I have ever seen. Streaming tears notwithstanding, I know we smiled together on that day too.

Now she smiles over me, her son, his son, and my daughter. And that is the picture I choose to remember.

My father, who is a LIS patient, has now been given
a medicin called Zolpidem every day since January 1, 2008.
He confirms that the following has improved after
taking the medicin:

- he has much better control of his tongue and feel
that it is much easier to swollow.
- he has much more control of his eyes and view to
both sides
- he feels more alert
- he sais it’s easier to communicate, that he feels
more alert in his head too
- he has no longer headackes
- we can now move is arms much more than before
and also he feels that his body is more moveable

He got his stroke for approx. 1 year and lung infections have almost been there all the time, but
after taking Zolpidem he did not get a lung infection for almost 1,5 months. We think this is so, because he has much better control when swollowing.

I really recommend this medicin.

After all, do you have anything to loose in trying?

She was a total locked in Syndrome, but after 2 years of intense neuro- reabilitation therapy in Austria and Germany, now she is incomplete locked in syndrome.
She learned to move again the lips, and to speech with a fenestrated tracheostomy cannula, but she can’t swallow, she need to be suction during the day.
But during these 3 years she had a great motor recovery, she learned to move again the paralyzide side both leg and arm, and learned again to have a good trunk control stability.
Brain stem stroke need from 3 to 5 years to recover and lot of intense therapy every day ( 5-6 hours per day).
she is happy to be still alive and has a strong willingness to improve her condition.
It’s not easy to fight every day with the risk to develope lung infection, but with good knowledge of some protocol for dysphagic patient (like good mouth igiene, and proper suction tecnique) you can avoid this risk ,and live as long as possible to make every day improvement!!!
It’s only a very long and risky journey that they can get over with people that support and take care of them every day!

Wendy