Clinic update

Hello...Tasha's friend Julie in Minnesota here to update everybody!

Bottom line from the last clinic: Tasha is not going to get a tracheotomy at this time.

The benefits of the trach w/ventilation are portability and back-up for electrical problems. But the trach is invasive, and at this point, she is not ready for it. Tasha explained to the doctor what was important to her in terms of quality of life right now. He said that he expects in 6 months time she will not have the same abilities as today. So she will likely need to re-visit the trach in 6 months. Perhaps at that time she will re-define her ideal quality of life. For now, they will continue to use the bi-pap machine. Currently, she is using it from 12-14 hours per day.

After clinic, they learned from the respiratory therapist that a sip-and-puff machine might be an option for Tasha. Typically they don't use this with ALS patients, but Tasha has strong mouth muscles. Basically it is a machine that will attach to her wheelchair. As needed, she can bite down onto the tube to receive oxygen. She has an appointment on Friday where they hope to learn more about this.

Also on Friday, they will discuss the Eye Gaze machine. Her doctor had recommended getting this machine a couple of months ago. http://www.eyegaze.com/content/assistive-technology Tasha was able to try it at a "Meet the expert" event recently. She said it was difficult for her to use and she tired from it quickly. Tana had an easier time. It is trained specifically to your eyes and they believe she had a harder time because of her glasses and astigmatism. She said it will definitely take time to adjust to this. A great feature is the ability to record your own voice. They are going to get a microphone soon and start recording as many words/phrases as they can think of to use in place of the robotic voice. Unfortunately, after insurance, the Eye Gaze will cost around $2,000.

They will be getting a Hoyer Lift next week. They've been avoiding this as long as possible, but the new transfer board they got at the clinic just didn't work for them. The lift will be used to get Tasha out of bed and into her wheelchair. They are also getting harnesses for her wheelchair in the van. If the van is stopped suddenly, Tasha ends up folded forward and can't straighten upright by herself.

In the last couple of weeks her hands and legs have gotten worse. She is having difficulty dialing her cell phone now.

A few weeks ago they started an approval process to get state-funded caregiver aid. She has been medically approved for aid, which will provide a certain number of hours per week as well as 30 days of respite care per year. Now they are waiting to see if they meet the financial requirements to receive the state aid.

I've been assigned to update Tasha's blog from now on. I hope to post a little something weekly, as I know everyone is anxious to hear any news. Thanks for checking in!