New Speech Generating Device Law Passed

Common sense has prevailed.  At least for the next few years. Hopefully the regulations can catch up with the technology before this law expires.

From the Tobii website:

On the evening of July 30, 2015, President Obama officially signed The Steve Gleason Act.  The new law helps protects patient access to medically necessary Speech Generating Devices (SGDs) for individuals with communication disabilities, including ALS, Cerebral Palsy, spinal cord injuries, and Rett Syndrome.  Specifically, the new law will remove SGDs from the Medicare Durable Medical Equipment (DME) payment category as a “Capped Rental” and provide coverage of eye-tracking technology for patients who rely on this method to access and operate covered SGDs. These amendments are effective beginning October 1, 2015 through October 1, 2018.

The passage of The Steve Gleason Act is a monumental step for Medicare patients who rely on assistive technology to communicate with their loved ones and caregivers. The reform serves as acknowledgement to the community of the equal importance of the right to be heard. The presidential signing also comes just a day after the Centers for Medicare and Medicaid Services (CMS) updated their coverage policy for speech generating devices.

Tobii Update

Ashleigh has been working hard with her Tobii Eyegaze system. We have been working with Sherry at The Perlman Center and she has been so pleased with Ashleigh’s progress and her determination.

We have been experimenting with using the eyegaze system and then using a switch to make her selection.  On some days that works out better than the eyegaze selection.  On the Tobii you can set the eyegaze selection option to dwell or blink.  Ashleigh usually does better with the blink option.

One thing we have found is that some days things are easier than other days.  The good thing about the Tobii is that it is so flexible you can adjust to how the person is doing that day.

In the same vein, our speech therapist also had her try scanning recently to see if that would work.  Ashleigh’s cognitive abilities are good so scanning does work pretty good.  It can be a little slower so we will have to see what works best.  We created two groups of pages, one customized for eyegaze and the other customized for scanning. I think it may be very beneficial with the keyboard pages where there are a lot of buttons on the screen which are more difficult for Ashleigh.

Working with the Tobii

Here is Ashleigh working on her Tobii communication device.  There are some apps included that help the person work on their targeting and accuracy.

On the video it shows that she has to target the person’s face on the screen with her eyes and if she does it then the person gets hit with a pie.  She was doing great and really was hitting the targets quickly.  You may see some lights flash at the bottom of the screen, those are the two cameras that pick up your eye movements.

My wife and I have tried this and it is not as easy as it looks.  It takes a lot of concentration and focus.

Breakthrough Seizures

October turned out to be a very difficult month.  Ashleigh had seizures on three Thursdays in a row in October after 10+ years of no seizures.

We think we identified the culprit as the drug Provigil.  We were just doing a trial of the drug and we think it caused the seizures. We tried to do everything right by checking with the epileptologist before we started the drug but it definitely did not work out.

The scariest part is that Ashleigh’s seizures almost always go into status which is so dangerous and scary.  It definitely set Ashleigh back in all aspects but I think things are now under control.  Her medications had to be nearly doubled though. We can just hope that these are the last seizures for a long, long time.102114 246 102114 247

Tobii Eye Gaze Device Received

After testing a wide range of equipment and access methods the therapists decided the Tobii Eyegaze I15 would be the best choice for Ashleigh’s communication device.

With the previous devices we have tried we were always fighting the fact that her vision was best on the lower left while her motor is best on the right and bigger movements can fatigue her easily.  The eyegaze system removed this major obstacle.

We just received the Tobii and have a series of appointments with Sherry at The Perlman Center to work on customizing the device.  Ashleigh is very excited about it.

Speak Out For Those Who Cannot Speak For Themselves

Medicare is implementing requirements that will put burdensome restrictions on people with ALS, brain injuries, and other debilitating impairments seeking to acquire and use Speech Generating Devices from Medicare. Speech Generating Devices (SGD) are computers that can take the user input and vocalize the output for those unable to vocalize themselves. We are asking that you contact your congressperson to support reversing the changes outlined below.

We learned about this because I am afraid my daughter is one of the many people being directly affected by this new policy by Medicare. Ashleigh met with therapists who specialize in Augmentative and Alternative Communication. Over a number of sessions they tested various devices before settling on the Tobii Eye Gaze System. The Eye Gaze systems allow users to control the SGD computer with only their eyes. The therapists were very excited at how well she did and she was excited as well. We have tried numerous devices over the years and this was the first device that seemed like it was going to be able to work given her physical limitations since her brain injury.  Continue reading

Eye Gaze Communication Device

Ashleigh’s OT told us about a computer system a person at her school is using that uses eye gaze for selecting items on the screen.

We wanted to learn more so we went for an evaluation at The Perlman Center, a part of Cincinnati Childrens Hospital.  They have a great augmentative communication department there.

We have been having sessions with a Speech Therapist and OT who have been working with different devices and different access methods to identify the best fit.

Ash tried a couple of communication devices that use eye gaze technology to make the selections.  It is very cool and may just be the thing to overcome the issues she has had in the past using a device.  The eye gaze computer from Tobii seems to work  the best so far but we have some other things to test.  Check out Tobii website for more.

Double the Fun

IMG_6578 Celeste’s twin girls are the latest additions to the family.  Ashleigh loves babies and as you can see she now has both of her arms full with her little cousins.  The girls, Ava and Isabel were born early and were so tiny it was scary.   They had a little longer stay in the hospital to gain some weight but they seem to be catching right up.  Ashleigh has proven to be the champ at getting them to sleep as they find it so comfy in her arms. Continue reading

Rocking Out

Here are a few pictures of Ash playing her keyboard with her little cousins.  Little Natalie likes for her and Ash to play along with the songs in the keyboard’s memory.  Even better is to put the keyboard into sound effects mode and make funny sounds with it.  Paige is more of a purist and likes the piano mode.

Ash enjoys it all and is very patient letting the kids choose what they like.

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Aquatic Therapy

Ashleigh did a few months of aquatic therapy recently.  She really enjoys the water and would probably go every day if we could. Below are a couple of videos we shot:

We have been going to the Drake Center in Cincinnati and they really have a great set-up with their pool.  At one end of the pool the floor can be raised level with the surrounding floor so that patients can be wheeled out in a shower wheelchair and then the floor lowered to the desired depth.

The water is in the 96 degree range and the air temperature in the entire pool area and changing rooms is very warm as well.  Ashleigh was so relaxed after her swim as it really helped with her high tone.  We went to a local Y for a while and while the pool area was warm the dressings rooms were freezing.  It was so bad that our PT said it was not worth the increase in tone she was getting and we should stop.  At the Drake she stays nice and loose for hours.

Chiropractic Treatments

We received an email from a visitor to our website, Sonja,  about a treatment her daughter, Lindsay,  was getting from a chiropractor.  She said her daughter has made some significant improvements from her Maximized Living practitioner.  We spoke with her doctor and ended up finding someone near us, Dr. Ryan Berlin at Baker Chiropractic in West Chester, OH.

Dr. Berlin is a great person, very kind and caring.  Believe me it was not easy to stand by as he did the manipulations the first few times.  We have not seen as big of improvements yet that Lindsay has but we have seen much better breathing and better relaxation and less tone after the treatments.  We are going three days a week.  Below are a couple videos from a session:

You can look at http://maximizedliving.com/ to learn more and to find someone in your area if you are interested.

Voicing

Ashleigh continues to do some voicing.  In fact, it is a little better overall as her breath support has improved a little.  She also continues to have periods where she will typically wake up and be able to voice very strong for a few minutes.  Right before Christmas she was able to speak with one of her friends that lasted for five minutes or so and then she called her aunt and uncle and kept going for another five minutes. Continue reading

KFO Brace

Ted from Hanger Prosthetics and Orthotics in Fairfield, OH did another great job on a brace for Ashleigh that is a big help in her recovery from TBI.  The new brace includes control of the knee on her weakened left side and has made walking with her roll-ater easier.  Ted watched Ashleigh walk in his clinic and then casted her for the brace. Ted suggested Ashleigh get something besides just boring white and he handed us a book that had colors and patterns of braces you can get.  We looked at butterflies and the U.S. flag when Ted said he knew what Ashleigh wanted.  He paged back in the book to one called tattoo.  It was very cool because Ash with all of her artistic talent really appreciated the style.  Check out the pictures below. Continue reading

Thyroid Deficiency

My wife has been worried for some time that Ashleigh may have some thyroid issues as a result of her TBI.  She had a battery of blood tests but the results came back within the normal range.  It was not until months later when she read more about the thyroid tests that we found out that you may need to test for a few other factors to get a more detailed answer.  The doctor added the Free T3 and Free T4 tests.  Ashleigh did show a problem with the Free T3 and Free T4 tests and has started on a low dose of Armour Thyroid medication.  Remember that you know yourself or the TBI survivor in your family best, so if you have a concern be persistent.

I pasted some details below from the About.com page on thyroids.  There is a lot more info out there on the Web and from your doctor if you suspect any thyroid issues. Continue reading

New Records

I don’t want to jinx anything but Ashleigh has been on a roll lately in her therapies.  She has been walking across our living room floor with the help of a roll-ater.  When she started a few years ago she could do maybe three trips.  In the past month or two she has been breaking records like crazy.  She has now done 14 trips as her current record.  She could probably do more but the 14 takes us over time in her therapy session. Continue reading

Emergency Supplies

If you are like us you have a collection of medicines and supplies that you take with you wherever you go.  Ours includes a suction machine, oxygen tank, anti-seizure emergency meds, pulse ox reader, inhaler, nebulizer, oral swabs, and various eye drops . On top of that we have extra clothes, gloves, hats, drinks and whatever else we can fit into the bag.

Please take a few minutes and make sure you check all of the medicines for their expiration dates.  We needed to do a breathing treatment recently and found the medicine in the nebulizer bag was expired.  We called the manufacturer who said it was still okay to use but it added more stress to an already stressful situation as Ashleigh was feeling like she couldn’t breathe.

(BTW – We did end up in the ER but they could not find anything and after a couple of hours she felt better and we got to go home)

Harness and Pulley System

Our PT, Julian, set up a trial for us with a fellow PT who teaches at a local university in the Physical Therapy department.  This person with his partner developed a harness and pulley system to use in therapy.  It would help us when Ashleigh walks not have to worry about her falling.  It could also allow us to reduce the number of people we need when Ashleigh walks.

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Cholesterol and Krill Oil

My wife started all of us on Krill Oil a few months ago.  It is easier for Ashleigh to take and seems to have less side effects than the fish oil we had tried in the past.  Ashleigh recently got her blood work done and her cholesterol was significantly down. The Krill Oil was the only change so needless to say we have become fans.  We will be interested in seeing if the positive results continue over the next few months until she gets her labs re-tested.

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Transfer Pivot Disk

We bought a  Transfer Pivot Disk that is great for a person who can do a stand and pivot transfer.  The helper places the disk under the person’s feet and does the stand as usual.  Then, with one of the helper’s feet partially on the disk to act as the brake you can spin the person to align with the wheelchair or bed for the transfer.  We use an extra strip of non-skid to make it safer.

We have had a number of people ask us about the disk so I thought I would post about it.  One hospital we go to for Ashleigh’s scans and CT’s got the info so they could order some for their whole department.  We are going to add it to our webstore or you can email help@tbirecovery.org   There are a few manufacturers out there but below is the info the model we purchased.

SafetySure Transfer Pivot Disc

SafetySure Transfer Pivot Disk

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Shopping Trip and Marines

We were Christmas shopping and we saw a couple of Marines in the mall.  Ashleigh and her Mom asked if she could get her picture made with them.  Very nice guys but they look so young.  It was funny because after we asked for a picture other people were asking them for a picture as well.  I hope it made them feel good and we pray for their safety.

Spiderman Visits

Ashleigh’s cousin’s little boy, Evan, is at our house quite a bit and we all love it.  His birthday was coming up and he decided he wanted a Spiderman suit.  So Ashleigh and I searched online and we ordered the suit for his birthday.  I guess the first few days he wore it non-stop.  His grandmother even got this thing that shoots webs from his wrists to go with the suit.

He has now started to carry the suit with him and he decided to pay Ashleigh a visit in full regalia.  Too cute!

Support Our Troops

Ashleigh and her Mom always make a point of going up and thanking any uniformed service members they see.  I always give Ash a hard time that she is just trying to meet cute guys.

The young lady in the picture below is the daughter of a lady who works for an agency that provides some of Ashleigh’s care.  My wife had told her Mom that Ashleigh is very supportive of the military.  She and my wife then got the two girls together when she was in town on leave.

 

AFO Fitting

Ashleigh saw a different PT for a few visits and that PT suggested bracing for her trunk.  The softer versions they tried did not provide much support so they suggested a hard shell type brace.

We then spoke to our orthotist, Ted, who did a great job on her previous AFO’s and he suggested we get our PT and OT to come to the orthotist’s office so he could see Ashleigh’s body in motion as she walked. Continue reading

Glenn Beck

Ashleigh was very excited when she got to meet Glenn Beck when he came to Columbus with Bill O’Reilly.  She watches Glenn daily and really enjoys him.   It was a crazy day and we had to rush to Columbus and barely made it in time to see him.  She was really tired by the time we made it back home late that night but she said it was worth it.

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