I am trying to just acknowledge this day as a day to be grateful for all the wonderful people that have come into and surrounded our lives since Jess' accident 6 years ago. We have been so lucky to have the people who support Jess in his recovery stay by his side for so many years. John (OT), Tracy (Speech), Joan (acupuncture) and Beth (cranial sacral) have been with us since we came home from the hospital. We are extremely thankful for their devotion and love to our Jess.
We also have three part time caregivers now that are so wonderful and take such good care of Jess. Bryan has been with us a year now. We appreciate him more than he will ever know. We just hired two more very compassionate caregivers, Dora and Maura a couple of months ago. It has been a bit of a struggle to let go but Chris and I can finally feel at ease going to work and getting some things done around the house without keeping one eye on Jess.
Life seems to go on and six years has gone by pretty fast it seems although not without many mountains to climb. We appreciate the extra help but we are still waiting and praying that something will change for the better. Six years ago today was the day our son left his physical life and emerged himself into a dream world where hopefully he is experiencing far more joy than we could ever imagine.
Thanks for checking in and still supporting us with your thoughts!
Thursday, June 17, 2010
Saturday, April 17, 2010
We are in Austin, Texas
Hi everyone,
We are on another adventure to Austin, TX. We had a nice drive down here and we are doing well here so far. It did take us some time to figure out where we were going and how to beat the traffic. We sure forget about traffic. It blows me away how many cars there are in a city. We did go for a two hour walk around Lady Bird Lake, found a Costco and a Whole Foods grocery store. I do like it here. It seems like an artsy city with lots to do. They have festivals every weekend of some sort. The weather is unbelievable. It has been cloudy a lot but warm and a little humid which is great for the dry skin. It was in the high 70's yesterday.
We came here so Jess could try some biofeedback therapy. We met with a neurologist and we both really liked him and the therapists are wonderful. The neurologist, Dr. Heinze went to a seminar with Dr. Brucker (the guru of biofeedback) 20 years ago and about 6 years ago called him to see ask him about his successes with neuromuscular biofeedback. He was impressed with the results so he decided to send two physical therapists to Florida to train with him. It is unusual to meet a neurologist who actually dares to venture off of the strict medical protocol and try alternative therapies.
There are only 3 or 4 Neuromuscular Biofeedback centers in the US. The Brucker Method uses a learning procedure known as operant conditioning, which teaches an individual to access and use existing neural cells in the brain and/or spinal cord for restoration of function. The EMG biofeedback process is used to train alternative undamaged cells of the brain to take over the
tasks of the damaged cells. Candidates it can help are people with physical disabilites resulting from spinal cord injury, head trauma, stroke, cerebral palsy, orthopedic injuries or non-progressive central nervous system disorders.
Unfortunately, Dr. Brucker died two years ago but our two therapists, Bob and Amy trained with him extensively and are continuing his work. I guess his wife is continuing with the Brucker Institute in Miami and there are also therapists doing it in Chicago.
The good news is Jess' muscles are responding. The electrodes pick up very fine measurements of motor signals to several muscle groups and Jess has muscles firing that we can't detect with the naked eye. I guess the brain needs to be reminded they can function. They have tested both of his arms and hands, his neck and shoulders and his trunk so far. Their goal is to get some neck and trunk stability and arm functioning by creating pathways to his brain. Once the pathways are established supposedly the brain never forgets. But it is a "use it or lose it" scenario. So, we will continue to work on the exercises and come back in 6 months to retrain.
The neurologist told us a story of a man who sat motionless in his wheelchair for years and after the biofeedback treatments (not sure how long) he now communicates on a computer and can play video games. We try not to get our hopes too high but this neurologist was the first one we have seen that hasn't been "so honest that it hurt". He actually had ideas to help give Jess a better quality of life and us some hope. I always felt the way to get Jess back is either through a computer, art or music. Wouldn't it be unbelievable if he could communicate on a computer some way. Dr. Heinze also seemed hopeful that Jess could use some sort of laser system to activate a computer with his head or maybe we can get a finger to poke keys on a keyboard. There are so many new ideas being researched in assistive technology. It drives me crazy not knowing there are possibilities out there that I don't know exist. I hope this place will be a good resource for me now.
Sorry for rambling but I thought you might be interested or can spread the word to someone you know that may get good results. Other than our day to day chores and therapies we are busy like always. We hope to check out some music festivals, museurms, parks or maybe drive to the coast this weekend. We sure love this motorhome. It has really changed our lives. We're really glad we pulled the Honda here. Driving in this traffic is a breeze compared to maneuvering around the city in the motorhome.
The RV park is nice. It is surrounded with Oak trees and the birds make it sound like we are on a tropical island. We have all the windows open, I actually get to wear flip flops and Jess' feet are finally warm. Chris is out exploring as we speak. He is trying to find a running route. So, he just got back and said he wants to talk to the manager to see if he can borrow a riding lawnmower and make a "trail" through the nearby Oak Forest! Go figure...he is the trail guy!
Hope you are enjoying your day. It looks like rain here tomorrow. We have two appointments everyday and by the time we get home we are wiped out. Thanks for checking in.
Love,
Pam, Chris & Jess
We are on another adventure to Austin, TX. We had a nice drive down here and we are doing well here so far. It did take us some time to figure out where we were going and how to beat the traffic. We sure forget about traffic. It blows me away how many cars there are in a city. We did go for a two hour walk around Lady Bird Lake, found a Costco and a Whole Foods grocery store. I do like it here. It seems like an artsy city with lots to do. They have festivals every weekend of some sort. The weather is unbelievable. It has been cloudy a lot but warm and a little humid which is great for the dry skin. It was in the high 70's yesterday.
We came here so Jess could try some biofeedback therapy. We met with a neurologist and we both really liked him and the therapists are wonderful. The neurologist, Dr. Heinze went to a seminar with Dr. Brucker (the guru of biofeedback) 20 years ago and about 6 years ago called him to see ask him about his successes with neuromuscular biofeedback. He was impressed with the results so he decided to send two physical therapists to Florida to train with him. It is unusual to meet a neurologist who actually dares to venture off of the strict medical protocol and try alternative therapies.
There are only 3 or 4 Neuromuscular Biofeedback centers in the US. The Brucker Method uses a learning procedure known as operant conditioning, which teaches an individual to access and use existing neural cells in the brain and/or spinal cord for restoration of function. The EMG biofeedback process is used to train alternative undamaged cells of the brain to take over the
tasks of the damaged cells. Candidates it can help are people with physical disabilites resulting from spinal cord injury, head trauma, stroke, cerebral palsy, orthopedic injuries or non-progressive central nervous system disorders.
Unfortunately, Dr. Brucker died two years ago but our two therapists, Bob and Amy trained with him extensively and are continuing his work. I guess his wife is continuing with the Brucker Institute in Miami and there are also therapists doing it in Chicago.
The good news is Jess' muscles are responding. The electrodes pick up very fine measurements of motor signals to several muscle groups and Jess has muscles firing that we can't detect with the naked eye. I guess the brain needs to be reminded they can function. They have tested both of his arms and hands, his neck and shoulders and his trunk so far. Their goal is to get some neck and trunk stability and arm functioning by creating pathways to his brain. Once the pathways are established supposedly the brain never forgets. But it is a "use it or lose it" scenario. So, we will continue to work on the exercises and come back in 6 months to retrain.
The neurologist told us a story of a man who sat motionless in his wheelchair for years and after the biofeedback treatments (not sure how long) he now communicates on a computer and can play video games. We try not to get our hopes too high but this neurologist was the first one we have seen that hasn't been "so honest that it hurt". He actually had ideas to help give Jess a better quality of life and us some hope. I always felt the way to get Jess back is either through a computer, art or music. Wouldn't it be unbelievable if he could communicate on a computer some way. Dr. Heinze also seemed hopeful that Jess could use some sort of laser system to activate a computer with his head or maybe we can get a finger to poke keys on a keyboard. There are so many new ideas being researched in assistive technology. It drives me crazy not knowing there are possibilities out there that I don't know exist. I hope this place will be a good resource for me now.
Sorry for rambling but I thought you might be interested or can spread the word to someone you know that may get good results. Other than our day to day chores and therapies we are busy like always. We hope to check out some music festivals, museurms, parks or maybe drive to the coast this weekend. We sure love this motorhome. It has really changed our lives. We're really glad we pulled the Honda here. Driving in this traffic is a breeze compared to maneuvering around the city in the motorhome.
The RV park is nice. It is surrounded with Oak trees and the birds make it sound like we are on a tropical island. We have all the windows open, I actually get to wear flip flops and Jess' feet are finally warm. Chris is out exploring as we speak. He is trying to find a running route. So, he just got back and said he wants to talk to the manager to see if he can borrow a riding lawnmower and make a "trail" through the nearby Oak Forest! Go figure...he is the trail guy!
Hope you are enjoying your day. It looks like rain here tomorrow. We have two appointments everyday and by the time we get home we are wiped out. Thanks for checking in.
Love,
Pam, Chris & Jess
Friday, March 19, 2010
Is it Spring yet?
We have a lot going on as usual in our household. We have been interviewing for caregivers again. We had 20 calls the first couple of days the ad appeared in the newspaper. Last time we advertised we only received two or three calls so it shows how many people are truly out of work. We have five good candidates. We love our current caregiver, Bryan, but he had to cut back to one day a week this winter. He is working towards his nursing degree and license as an RN and the classes and studying are pretty intense. I am grateful that we have found a couple of good people that seem to want to help us and Jess.
Jess is still struggling with seizures and unfortunately it sets him back each time he has one. We increased his medicine but it comes with ramifications. It takes him quite awhile to get used to the increase. I have made an appointment with a neurologist in Boise that specializes in seizures so I hope he can help us. Our appointment isn't until the end of May. I also made an appointment with a rehab doctor in Twin Falls for the first of April.
We are also looking into going to Austin, TX so Jess can try some. A friend we met in California when we took Jess to the Centre for Neuroskills a few years ago told us about the biofeedback they are doing that has really helped their son who also has a bad brain injury. They also have been using a machine called a Quadriciser. It is pretty interesting and sounds like it has helped many people. Check out the link and the testimonies. Unfortunately, it is very expensive so I told Chris he needs to build one for Jess. If anyone could figure it out, he could.
The amount of avenues we get directed to is endless. Another friend brought me an article about a new trial just starting where they are giving traumatic brain injury survivors progesterone. It seems to really help with their recovery. Unfortunately for Jess, they recommend it be given at the onset of the injury. Hopefully if it does work successfully, it could become a protocol used in the emergency room.
We are all anxious for Spring. Jess and I went for a walk outside last weekend. We could hear the new sounds of birds chirping and the smell of things trying to wake up. It is still cold though, we still have snow on the ground and it's not quite here yet but we are encouraged and know it won't be long.
We all send a hug and a thank you for checking in.
Jess is still struggling with seizures and unfortunately it sets him back each time he has one. We increased his medicine but it comes with ramifications. It takes him quite awhile to get used to the increase. I have made an appointment with a neurologist in Boise that specializes in seizures so I hope he can help us. Our appointment isn't until the end of May. I also made an appointment with a rehab doctor in Twin Falls for the first of April.
We are also looking into going to Austin, TX so Jess can try some. A friend we met in California when we took Jess to the Centre for Neuroskills a few years ago told us about the biofeedback they are doing that has really helped their son who also has a bad brain injury. They also have been using a machine called a Quadriciser. It is pretty interesting and sounds like it has helped many people. Check out the link and the testimonies. Unfortunately, it is very expensive so I told Chris he needs to build one for Jess. If anyone could figure it out, he could.
The amount of avenues we get directed to is endless. Another friend brought me an article about a new trial just starting where they are giving traumatic brain injury survivors progesterone. It seems to really help with their recovery. Unfortunately for Jess, they recommend it be given at the onset of the injury. Hopefully if it does work successfully, it could become a protocol used in the emergency room.
We are all anxious for Spring. Jess and I went for a walk outside last weekend. We could hear the new sounds of birds chirping and the smell of things trying to wake up. It is still cold though, we still have snow on the ground and it's not quite here yet but we are encouraged and know it won't be long.
We all send a hug and a thank you for checking in.
Thursday, February 11, 2010
February 11, 2010
Again, it has been a long time since I have updated Jess' website. I am not sure if anyone even checks it anymore. It has been 5 1/2 years since his accident and he is still not walking and talking as we were so sure he would be doing by now. He just had a bout with pneumonia that immediately followed a seizure. We gave him antibiotics for a week and luckily it seems to have done it's duty. He was having small weird seizures for two days with a fever so we knew something was up. We were very worried and are so thankful in one respect that we could point it to a cause. The exray showed fluid in his left lung.
Jess is still doing all of the therapies and a couple of times this year he has gone up skiing on an adaptable ski sled with his dad and caregiver, Bryan. It seems like he enjoys the thrill of being on snow again. He so loved snowboarding. We're looking forward to watching the Winter Olympics this weekend.
I am still on my research journey of looking for new advancements in ways to help those with brain injuries. It is so complex, expensive and overwhelming. Our next venture may be to take Jess to a rehab facility in Phoenix. His sister Jamie is living there now so we could be close to her and in warm weather (the winters are so long and hard on Jess and I). I think he needs a little change and we need some new ideas. After 5 years the medical world doesn't have much hope in his recovering but what in the heck are we suppose to do with that information! I still hope that through music, art, computers or some passionate person who has that special connection with Jess we can find a sure way of communicating with him.
We are still so thankful for all of those who have not given up on him and for those that keep positive thoughts flowing our way. Chris and I are tired, frustrated, confused and so sad a lot of the time to be honest. We did not get to enjoy all of those fun years of watching him grow up into that awesome guy who had so many dreams and plans for his future. But most of the time we are ok and just thankful that he is our awesome son and that we are able love him more than anyone could imagine. Life seems to give all of us different challenges and I guess it's how we deal with them that matters.
Thanks for checking in and we wish all of you a better 2010!
Jess is still doing all of the therapies and a couple of times this year he has gone up skiing on an adaptable ski sled with his dad and caregiver, Bryan. It seems like he enjoys the thrill of being on snow again. He so loved snowboarding. We're looking forward to watching the Winter Olympics this weekend.
I am still on my research journey of looking for new advancements in ways to help those with brain injuries. It is so complex, expensive and overwhelming. Our next venture may be to take Jess to a rehab facility in Phoenix. His sister Jamie is living there now so we could be close to her and in warm weather (the winters are so long and hard on Jess and I). I think he needs a little change and we need some new ideas. After 5 years the medical world doesn't have much hope in his recovering but what in the heck are we suppose to do with that information! I still hope that through music, art, computers or some passionate person who has that special connection with Jess we can find a sure way of communicating with him.
We are still so thankful for all of those who have not given up on him and for those that keep positive thoughts flowing our way. Chris and I are tired, frustrated, confused and so sad a lot of the time to be honest. We did not get to enjoy all of those fun years of watching him grow up into that awesome guy who had so many dreams and plans for his future. But most of the time we are ok and just thankful that he is our awesome son and that we are able love him more than anyone could imagine. Life seems to give all of us different challenges and I guess it's how we deal with them that matters.
Thanks for checking in and we wish all of you a better 2010!
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