Lindsey's Update

Wow!  It’s been another whole year!  I hope all of you had a very Merry Christmas and let’s all make it a wonderful new year!  As my mother mentioned, this is the last time we will be updating the CaringBridge website. Therefore, I want to thank all of you, whether I know you or not, for all of your thoughts and prayers in the past 2-½ years. I realize that for you to take the time to stay updated on my progress is a very generous way for you to spend your time. I have learned in the past couple of years that you should remind yourself over and over again of a few phrases:

“Focus on positivity”

“Slowly, but surely”

“Every little bit counts”

It is also very important to see life as a glass half full and getting fuller, rather than one half empty. Everyone can think about the same slogans in everyday life. Whether it is a tiny little deal, or a huge life-changing event. I will continue to remind myself of those phrases forever. Let’s do it together!  May 2010 be very happy and prosperous. Thank you again! 

Lindsey

Lindsey is between therapy programs again, and with economic conditions in Arizona, it is unclear what might be available in the future. We'll develop our own program (of sorts) if necessary. After observing countless brain injury survivors, my impression is that Lindsey's optimism and drive is somewhat rare. I am so thankful for that, as I think attitude is half the battle. She has a long way to go before she could be considered "independent", but when I compare what she is able to do today vs. 2 years ago, what a remarkable difference! She amazes me with the techniques she comes up with to accomplish tasks that she can't manage in a conventional manner.

In the early weeks following Lindsey's injury, her Occupational Therapist at the hospital in Sioux Falls learned of Lindsey's computer skills and sat Lindsey down in front of a computer in one of their labs. At that point, Lindsey's lack of fine motor control would not allow her to be very effective on the keyboard. I remember telling Lisa that it was a goal of mine that Lindsey be able to write the final Caringbridge entry some day. We're two years down the road and Lindsey has expressed a desire to write the final entry of this journal. She'll be doing that soon. For anyone wishing to maintain contact with Lindsey directly, you may contact me at carolrussell5@cox.net and I will relay her contact information to you by permission.

We were recounting the path of events and therapy programs that Lindsey has been through in the past couple years. We all agreed that Lindsey has been provided with what she needed, at just the time she needed it. We naively had big hopes for an intensive day program when she was released from Barrows in November of 2007, but in reality, she would not have been ready for it. Instead, there have been interval steps that have brought her to where she is now. When she came home in November of 2007, we had to assist her in all of her transfers, bathing, grooming, medications, and meals. Today she does all of that on her own. As long as she has a few grab bars, clearance, and reach ability, she does very well on her own. She uses her walker more often, but balance issues still require someone be within "earshot" for safety reasons. It's obvious that her speech is not "normal", but she speaks very intelligently.  Intelligible was not the case two years ago and in all of her communication, Lindsey's personality and sense of humor is still a very real part of everything.  She quite naturally inspires all of the other patients in therapy programs, wherever she goes, to do their best. I really believe that there is going to be a breakthrough soon that will allow her to get to the next level of program that she needs to continue making forward progress.

Much has happened since my last entry. We've added a new member to the family. Natasha White became Ryan's (Lindsey’s brother’s) bride on May 31st.  It was a fun, event-filled few days in the Tahoe/Truckee area.  When Ryan & Natasha became engaged a little over a year ago, Ryan told Lindsey that she must dance with him at his wedding, and so she did. 

Shortly after returning from the wedding, Chris and Lindsey left for West Virginia for Chris's family's family reunion.  And then it was time to hit the rehab trail hard once again. The therapy that Lindsey began at Scottsdale Healthcare Outpatient in May has evolved into a day program similar to the one we had been hoping for when Arizona state budgets came to a screeching halt this past spring. What a blessing it has been! Lindsey has been in therapy from 9AM-3PM, three days a week for most of June and July. The sheer intensity of her being on her feet and in focused activity for that many hours per day has brought about great progress. After next week, the program will decrease somewhat, but we're still hoping for a breakthroughfrom somewhere.  They say it takes a professional basketball player 30,000+ attempts at the free throw line until knowing where the ball has to go becomes second nature, as it is in re-training the brain. Like Lindsey says, "slowly, but surely."

And even though Arizona's summer temps are becoming a bit annoying, Horses Help has opted to do a second session of Hippotherapy this summer. Lindsey rides on Thursday evenings. This past week her instructor had her up on her hands and knees atop steady Nell. She looked like she was training to be a Kentucky Derby jockey! It forces her to use all kinds of muscles and deal with balance issues under the watchful auspices of a handful of volunteer assistants and a capable trainer.

New opportunities for therapy are opening for Lindsey. That is a wonderful thing, but it also means that there will be two more extraordinary therapists that we will not be seeing on a regular basis.

A door has opened for Lindsey to have speech and physical therapy through Scottsdale Healthcare Outpatient Rehab. She began that a couple weeks ago. Next week will also hold an in-take meeting for occupation therapy to be added to the palette, there may be an opportunity for all of that to expand into their neural program, which is probably not unlike the program we were waiting for back in March. More details to come, but in the meantime they are working Lindsey hard twice weekly, and two of the physical therapists working with her are as tall as Lindsey is, a rare occurrence and a great advantage!

In the past year a couple people have suggested that Hippotherapy (hippo=Greek for horse, not a Hippopotamus) could greatly benefit Lindsey.  The timing didn't seem right, but the opportunity has presented itself once again and now it seems to be right.  Out of the blue came Horses Help. It’s a therapeutic riding program designed to help people with impairments.  Everything has fallen into place. In Lindsey's case, the goal, is to build core strength and for the rhythm of the horse's movement to help her compensate for her balance issues. At this point they use no saddle, forcing Lindsey to use her own muscular system to stay atop the horse. There are walkers on both sides for her safety and an instructor to help Lindsey obtain the maximum benefit from the sessions. 

 
Lindsey had a recent follow-up appointment with the Ophthalmologist who follows her double vision issues. When the field of vision in the right eye does not align with the field of vision in the left eye, double vision results. They measure those differences in dioptre. When Lindsey began seeing this physician nearly a year ago the measurement was 5. Today it is 1, a level that most people can compensate for and not a reason for surgical correction. I asked the physician if he felt the improvement was due to natural healing of the brain or if her PRK refractive surgery had impacted the difference. He just shook his head and said it was likely both had contributed to the change, but was astounded at the level of improvement, and dismissed Lindsey from his care unless she develops any problems.

Lindsey is half way through the typical 6-week healing process following PRK eye surgery. This week she had a re-check appointment with the Ophthalmologist who did her surgery. He was pleased with the progress. Her vision tested very well in one eye and fairly good in the eye that has been slower to heal. She is still struggling a bit with close vision, but feels it is due to the healing process and not her double vision.  That has improved markedly since the surgery. The other Ophthalmologist will evaluate the double vision issue next week.  I'm praying that her brain will continue to assimilate those double images into one, and that no further surgeries will be needed down the road.

We find ourselves in somewhat of a holding pattern right now. Lindsey's previous rehab program concluded just prior to Christmas. In comparing notes with other TBI survivors and their families, it seems that there is a rather predictable method of moving through the "system". Lindsey is ready to move to a new level of rehab. One that may make more demands of her, but ultimately moves her closer to independence and proficiency.

Lindsey has experienced double vision since her injury. She used to say that anyone she looked at had "four eyes". Through TBI support groups we've learned that lots of her fellow traumatic brain injury "survivors" have experienced the same condition. Strange as it may sound, Pediatric Ophthalmologists are probably best qualified to treat this condition. The waiting room is always full of kids and toys.

The Pediatric Ophthalmologist who has followed Lindsey for the past 6-8 months says that it's hard enough for even the average individual to keep their field of vision aligned, and even harder when your head gets juggled about.

He has taken a conservative approach, choosing to postpone corrective muscle surgery to align Lindsey's fields of vision until her body has had a chance to stabilize on its own, which it has done, in part. To compensate, she has been fitted with prismatic lenses that have helped the deficits in alignment, but the lenses have never totally eliminated the double vision.

As part of the overall treatment, the doctor suggested that she consider refractive surgery (Lasik or PRK) prior to any muscle alignment surgery and referred us to an Ophthalmologist who does that type of surgery. He, too, has taken a conservative approach, not wanting to approach surgery until Lindsey's body had reached maximum natural healing. In a recent visit he felt Lindsey was ready for surgery. However, Lindsey has an involuntary tremor in one eye. He told Lindsey that she needed to be prepared for the fact that if the tremor did not subside during surgery, then it would have to be aborted.

She went into surgery about 1PM yesterday. When the surgeon came out of the operatory 20 minutes later, I assumed that he was going to tell me that he was unable to do the surgery. Not the case. He came out to tell me that everything had gone amazingly well. The tremor had totally subsided during surgery, as though it did not exist.

The doctor re-checked her this morning and felt that she was exactly as she should be at this stage. He had a medically rational explanation on how the brain assimilates images with lenses vs. without lenses, but feels that the refractive surgery may play a part in Lindsey being able to close the gap on the double vision issue as well.

(Recently) Lindsey asked if she could write a Christmas wish on this site. It made me reflect back to the time when her Occupational Therapist, Lisa, showed Lindsey the computer lab at Sanford Medical Center in SD, weeks after her accident. Lindsey had always been adept on the computer, but at that point in her recovery, she stared at the keyboard, overwhelmed at the possibility of trying to make it work. Lisa was aware that we had established a Caring Bridge website in an attempt to keep people abreast of Lindsey's condition. My comment to Lisa that day was, "it is my goal that someday Lindsey will complete the entries on that website!"

Early this next week we will meet with the people that will likely orchestrate the next step in Lindsey's rehabilitation process. Lindsey has completed (successfully, I think) the many months of rehab designed to make her more effective in home & community. I think of all of the things we had to assist her with when she was discharged from Barrow Neurological Center just over a year ago. Showering, grooming, eating, medications, etc. She does all of that and much more on her own now. The next step in rehab is to get her ready to re-enter the work force. We all know that it’s going to take time. We don't know all that it will entail, but we are approaching it openly and we’re excited about the opportunities that the "next step" will offer.

From Lindsey's computer

Christmas & Thank You Message

I may not know all of you; however, what I have to say is very important! Not only do I want to wish you and your family a very Merry Christmas and Happy New Year, but I also want to say "thank you!” I appreciate those who have prayed for me, thought about me, and encouraged me. I am sure to consistently work hard and continue to progress. In the holiday season, remind yourself to "focus on positivity". I have to say, that is one of the most important things I have ever done. Merry Christmas and thank you again!

Lindsey

Lindsey may not be able to walk without assistance yet, but if you see a tall blonde on a recumbent bike wheeling down the bike path, watch out!

Lindsey's therapy team, and her family have been exploring various ways for Lindsey to "re-enter" life as she knew it pre-injury. We all know she needs above all to be safe, but also to stretch a bit in terms of activities and experiences.

In the past couple weeks, Lindsey has gathered information and done some online research on recumbent bicycles. Chris took that info and found a local bike shop that had a model in stock that he and Lindsey thought might be good for her. The bike seemed stable, safe, and a great way for Lindsey to get added leg strengthening exercise, some cardio, and feel like she's back in the outdoors without someone pushing her in a wheelchair.

Entering year two....... today Lindsey will begin her 8th week of working with Rehab Without Walls. In last week's evaluation conference, each therapy team member related the significant progress they have seen in Lindsey over the weeks, and re-established new goals for the coming weeks. It appears as though we may have received approval to extend that program into late October or early November, which is great news. Lindsey still battles her ataxia when it comes to balance and fine motor issues, but aside from needing help with safe transfers from one place to another, has pretty much taken over responsibility for all of her own grooming (showers, hair, make-up, dental care, dressing, etc.) Admittedly, her hair looks better some days than others.......but she tends to get irritated if anyone tries to help. She's also beginning to return to one of favorite hobbies.....cooking. She pours over recipes and encouraged by being able to once again put together a great meal with minimal assistance. She is spending a fair amount of time on her computer. A research group introduced her to an acrylic overlay for her keyboard which helps compensate for her current lack of fine motor control. Keyboarding is slow for her, but she can certainly maneuver her way around the system. She recently produced a couple flyers on Microsoft Publisher as an assignment in speech therapy and did a great job.

We're also exploring some alternate avenues to get to the bottom of the double vision that Lindsey is still experiencing. I accompanied her to downtown Phoenix last week to a continuing education real estate class she had signed up for, and she is now spending 4 days/week at the apartment in Tempe with Chris and their dogs. But the breaking news in Lindsey's life this week is that on Sept.14th she'll board a plane for her first big trip since her injury. Chris has been working to put together something to give them both a break in this long road, and surprised her with the news this weekend. She admits to some happy tears. They'll spend a week in the Squaw Valley/Lake Tahoe area, a few miles down the road from Ryan, Lindsey's brother. It will not only be fun break and good reunion with Ryan, but will give Lindsey an opportunity to experiment with travel and lodging outside the familiar walls of home.