Update 2/26/2016----
After a great summer and fall with little to no pulling and pain to this day I still feel much better. Before I went to Texas the Botox was doing very little, however in conjunction with diet, exercises from Carrick (Cerebrum health) and injections my head and neck have been VERY straight and I'm still doing stuff normally. The neurologist had a hard time finding certain muscles to inject because some were very quiet on the EMG. I'm still trying to get my finances in order to get back to Texas for another round of treatments.
They explicitly mention dystonia as one of their diseases they work with and their familiarity with deal (at least) with focal dystonias.
I continue with a healthy low carb diet that is gluten free and GMO free. I absolutely do feel a difference when I ingest Gluten by accident as I get a pain that goes down (equally) both sides and the full length of my spine. I must have ingested some while at lunch with a customer yesterday possible light breading on asparagus.
Friday, February 26, 2016
Thursday, May 21, 2015
5/21/2015---UPDATE
Well, it's been a while since I've updated this blog. So far I have been feeling great---to God be the glory! I'm [still] on the low carb lifestyle, exercising and doing my daily therapy routine---about 30-45 minutes per day. I've been able to play my drums, bass and guitar with little to no pain whatsoever. Also, I've gone on bike rides, did housework, played tennis, golfed, etc----all with very, very little pain! Once again, praise God. I will continue to update this blog and pray there are people with dystonia that will read this and will follow the same regiment that God brought through prayer.
Jeremiah 29:11
Jeremiah 29:11
Wednesday, February 11, 2015
Carrick brain center---Dallas,TX
Through prayer, God led me to the Carrick brain center. Over the next few weeks I will go into more detail, but for now I will simply post the emails I sent out during my 8 day stay in the Dallas,TX area:
I would like to update all and thank you for your prayers.... They are working and I can feel them. I thank you all for our concern and since your prayers and thoughts are with me and our family I want to let you know in more detail what is going on.
Day 1---wow, what a long day. From snow blowing the snow away, rushing to work then airport then getting to my room at 1am eastern time I was exhausted before even starting. However, after waking up and walking to the clinic, the first full day at the brain center was exhaustive. However, your texts and emails and prayers gave me a huge boost. All paperwork was done so I walked in, got a tour of the facility and then prepared to be diagnosed through several hours of testing. They did an eye tracking test, balance tests, neurological exams, gait test, hearing, sensitivity and reflexes. Each group of tests would run about an hour each and then you'd go to a cool down area to let the brain relax. There were others in this room and we talked about why we were there, what we hoped to get out of this trip and what phase in therapy they were in. What a great group of people... One with a spinal cord injury and you'd never know by his humor, attitude and kindness. Many others in there with brain injuries, concussions with nasty, prolonged side effects, a woman that suddenly was blind. It was amazing to see their hope and faith expressed in kindness, empathy and genuine laughter. I was floored at their hope and faith.
Any way I went with the doctor to go over what he found and the plan for rehabilitation. He explained everything thoroughly showing where imbalances were in my brain and body. I won't get into too many of those details right now. The plan was to stimulate the weaker parts of the brain and to basically reprogram the bad program that's controlling the bad stuff and put new " code" in its place. The way they do this is simple yet complicated. By stimulating the brain (visually and electronically) repetitively will retain the brain to use the good code in place of the bad code. So around 4pm (yesterday) we were able to start 2 of the 5 daily treatments. First was a tongue stimulator because my left pallet was not functioning. This sends a signal to that part of the brain which controls.... You guessed it, neck muscles along with other Phantom symptoms I've had. Next was a simple treatment.. Keep my head still and follow a dot that scrolls randomly across the screen. Even though simple it's one of the more effective treatments.We finished up around 5pm. At that point I went back to the hotel, ate and then walked to a grocery store to get snacks and such . Talked with my wonderful wife, we prayed and I was existed and went to bed around 7:30 pm central time. End of day one.
________________________________________________________________
Hello all, once again thanks for your prayers and thoughts. Today was the first full day of testing and it feels like like I did not do much but my body is exhausted.
We did all 5 of the rehabilitation techniques. In addition to the other two we did one that was like a 55" ipad where to would fixate on one point and then touch dots that pop up on the screen... Actually it was kind of fun. Then there's the rotation machine that you sit in and it rotates in a way to counter ill effects on the brain... It was weird but each I went through this process my blood pressure dropped and dizziness disappeared. Everyone says this machine helps the most and I can attest to that. Next was feet in water and they send electrical impulses through it... I did not react well to this as my legs felt like led weights and my stomach became upset. Everything else we did 3 times each in 3 separate sessions. The foot in water thing was only done once. I finished up today around 3:15, went back to the room and took a nap. It's amazing how exhausted I was for completing such simple treatments. End of day 2.
_________________________________________________________________
Hello all,
I hope your week went well. It's still too early to see if treatments are working but I do feel a little better in some aspects but unchanged in others. Day three was challenging yet exilerating as well. He pushed me to the limits on all 5 therapies 3x on the third day. I felt good but completely Exhausted in a weird way. The only Way I can describe it is similar to when you wake up from a nap... You feel calm and rested yet your brain and body need to catch up. Anne and Jenna are here and really gave me a great boost. It's so great to see them. They were able to sit through the many sessions and see what's going on. The sessions are getting more intense which is good as it shows there's progress. Today we are meeting with the woman who is blind and her husband please pray for them as well. Their attitude and Outlook is amazing. Thank you all once again for your prayers and concerns.
End of day 3
______________________________________________________________________
Hello all,
Hope you had a great weekend. Went through another day of therapy. Today there was some good news... My left palate that had no activity was now actively flexing and reacting much better. Even though it was still lower than the right side of the palate, it was actually functioning where before it was not. We were able to get therapy sessions stacked and achieved before 3 pm. I was not nearly as tired today and felt real good after the second treatment. It seemed like a fast day as the treatments were back to back. Even though there seems to be improvement we don't know exactly to what extent until the botox injections wear off a bit and I continue with at home therapy as well. Thank again for all your prayers and thoughts.
Tomorrow I have two more therapy sessions and two post / release tests to get an idea of progress.
End of day 4
I would like to update all and thank you for your prayers.... They are working and I can feel them. I thank you all for our concern and since your prayers and thoughts are with me and our family I want to let you know in more detail what is going on.
Day 1---wow, what a long day. From snow blowing the snow away, rushing to work then airport then getting to my room at 1am eastern time I was exhausted before even starting. However, after waking up and walking to the clinic, the first full day at the brain center was exhaustive. However, your texts and emails and prayers gave me a huge boost. All paperwork was done so I walked in, got a tour of the facility and then prepared to be diagnosed through several hours of testing. They did an eye tracking test, balance tests, neurological exams, gait test, hearing, sensitivity and reflexes. Each group of tests would run about an hour each and then you'd go to a cool down area to let the brain relax. There were others in this room and we talked about why we were there, what we hoped to get out of this trip and what phase in therapy they were in. What a great group of people... One with a spinal cord injury and you'd never know by his humor, attitude and kindness. Many others in there with brain injuries, concussions with nasty, prolonged side effects, a woman that suddenly was blind. It was amazing to see their hope and faith expressed in kindness, empathy and genuine laughter. I was floored at their hope and faith.
Any way I went with the doctor to go over what he found and the plan for rehabilitation. He explained everything thoroughly showing where imbalances were in my brain and body. I won't get into too many of those details right now. The plan was to stimulate the weaker parts of the brain and to basically reprogram the bad program that's controlling the bad stuff and put new " code" in its place. The way they do this is simple yet complicated. By stimulating the brain (visually and electronically) repetitively will retain the brain to use the good code in place of the bad code. So around 4pm (yesterday) we were able to start 2 of the 5 daily treatments. First was a tongue stimulator because my left pallet was not functioning. This sends a signal to that part of the brain which controls.... You guessed it, neck muscles along with other Phantom symptoms I've had. Next was a simple treatment.. Keep my head still and follow a dot that scrolls randomly across the screen. Even though simple it's one of the more effective treatments.We finished up around 5pm. At that point I went back to the hotel, ate and then walked to a grocery store to get snacks and such . Talked with my wonderful wife, we prayed and I was existed and went to bed around 7:30 pm central time. End of day one.
________________________________________________________________
Hello all, once again thanks for your prayers and thoughts. Today was the first full day of testing and it feels like like I did not do much but my body is exhausted.
We did all 5 of the rehabilitation techniques. In addition to the other two we did one that was like a 55" ipad where to would fixate on one point and then touch dots that pop up on the screen... Actually it was kind of fun. Then there's the rotation machine that you sit in and it rotates in a way to counter ill effects on the brain... It was weird but each I went through this process my blood pressure dropped and dizziness disappeared. Everyone says this machine helps the most and I can attest to that. Next was feet in water and they send electrical impulses through it... I did not react well to this as my legs felt like led weights and my stomach became upset. Everything else we did 3 times each in 3 separate sessions. The foot in water thing was only done once. I finished up today around 3:15, went back to the room and took a nap. It's amazing how exhausted I was for completing such simple treatments. End of day 2.
_________________________________________________________________
Hello all,
I hope your week went well. It's still too early to see if treatments are working but I do feel a little better in some aspects but unchanged in others. Day three was challenging yet exilerating as well. He pushed me to the limits on all 5 therapies 3x on the third day. I felt good but completely Exhausted in a weird way. The only Way I can describe it is similar to when you wake up from a nap... You feel calm and rested yet your brain and body need to catch up. Anne and Jenna are here and really gave me a great boost. It's so great to see them. They were able to sit through the many sessions and see what's going on. The sessions are getting more intense which is good as it shows there's progress. Today we are meeting with the woman who is blind and her husband please pray for them as well. Their attitude and Outlook is amazing. Thank you all once again for your prayers and concerns.
End of day 3
______________________________________________________________________
Hello all,
Hope you had a great weekend. Went through another day of therapy. Today there was some good news... My left palate that had no activity was now actively flexing and reacting much better. Even though it was still lower than the right side of the palate, it was actually functioning where before it was not. We were able to get therapy sessions stacked and achieved before 3 pm. I was not nearly as tired today and felt real good after the second treatment. It seemed like a fast day as the treatments were back to back. Even though there seems to be improvement we don't know exactly to what extent until the botox injections wear off a bit and I continue with at home therapy as well. Thank again for all your prayers and thoughts.
Tomorrow I have two more therapy sessions and two post / release tests to get an idea of progress.
End of day 4
Tuesday, February 10, 2015
A new beginning?
My wife and I were called to pray like we never did before. We asked our friends and family to pray with us and they did and I believe God is laying down the path toward healing, faith, obedience and mercy.
My previous round of injections (Early October) started to wear off the week before Thanksgiving. I want to back up for a moment---earlier in in late May I decided to go "gluten free" in an effort to lessen the dystonia symptoms. I kept it up for about 5-6 months and felt it did nothing, so I decided to go back on gluten products---Hey, I'm Italian, it was sheer torture--- (Pizza, Bagels, pasta, here I come).
However, I guess my body rejected it because with in a few days of going back on gluten, I was in extreme pain in my neck and shoulder---BOTH SIDES!! That's never happened in the 10 years I had dystonia. I went off the gluten and it a few day the consistent pain magically disappeared and did not return. Now, here's where it gets interesting. As we had people praying for us, God led us to a book called "The Grain brain". It's a neurologist that talks about gluten, grain fed beef and many carbs how they effect the brain and neurological system---to my amazement he mentions dystonia several times---I was like "wow---no way"! I quickly downloaded the book and started this new way of eating immediately. 30 carbs a day, grass fed beef, natural chicken, seafood, cheeses, etc here I come!
I noticed within a few weeks that the pulling and pain became less and less. I've been able to do certain tasks with absolutely no pain whatsoever. We walked in Disney 10-12 miles a day and these was no pain at all---amazing! But there's more----up next the "Carrick brain center".
---Eph 6:10-13 (GW)---10 Finally, receive your power from the Lord and from his mighty strength. 11 Put on all the armor that God supplies. In this way you can take a stand against the devil's strategies. 12 This is not a wrestling match against a human opponent. We are wrestling with rulers, authorities, the powers who govern this world of darkness, and spiritual forces that control evil in the heavenly world. 13 For this reason, take up all the armor that God supplies. Then you will be able to take a stand during these evil days. Once you have overcome all obstacles, you will be able to stand your ground.
My previous round of injections (Early October) started to wear off the week before Thanksgiving. I want to back up for a moment---earlier in in late May I decided to go "gluten free" in an effort to lessen the dystonia symptoms. I kept it up for about 5-6 months and felt it did nothing, so I decided to go back on gluten products---Hey, I'm Italian, it was sheer torture--- (Pizza, Bagels, pasta, here I come).
However, I guess my body rejected it because with in a few days of going back on gluten, I was in extreme pain in my neck and shoulder---BOTH SIDES!! That's never happened in the 10 years I had dystonia. I went off the gluten and it a few day the consistent pain magically disappeared and did not return. Now, here's where it gets interesting. As we had people praying for us, God led us to a book called "The Grain brain". It's a neurologist that talks about gluten, grain fed beef and many carbs how they effect the brain and neurological system---to my amazement he mentions dystonia several times---I was like "wow---no way"! I quickly downloaded the book and started this new way of eating immediately. 30 carbs a day, grass fed beef, natural chicken, seafood, cheeses, etc here I come!
I noticed within a few weeks that the pulling and pain became less and less. I've been able to do certain tasks with absolutely no pain whatsoever. We walked in Disney 10-12 miles a day and these was no pain at all---amazing! But there's more----up next the "Carrick brain center".
---Eph 6:10-13 (GW)---10 Finally, receive your power from the Lord and from his mighty strength. 11 Put on all the armor that God supplies. In this way you can take a stand against the devil's strategies. 12 This is not a wrestling match against a human opponent. We are wrestling with rulers, authorities, the powers who govern this world of darkness, and spiritual forces that control evil in the heavenly world. 13 For this reason, take up all the armor that God supplies. Then you will be able to take a stand during these evil days. Once you have overcome all obstacles, you will be able to stand your ground.
Life as "normal"
I was able to go 19 months without an injection but eventually I had to get injected as I continued with the Bowen therapy. I went from 2006 to late 2010 living a very normal and active life...God is good. I felt great and continued to move forward in life with slight disruptions from dystonia.
However, in late 2010 I had another root canal and a cracked tooth and now my symptoms returned but now my head started pulling to the left instead of the right when I was originally diagnosed. It was like starting all over---the pain, the involuntary pulling, being diagnosed again and new injection points. I was completely deflated yet continued to stay focused on God, family and determined to get well.
However, from 2011 to late 2012 I limped along...some months and injections better than others. Sometimes the spots were injected correctly and sometimes they were off just enough that I was uncomfortable. Then my original neurologist decided to quit and I was referred to another specialist on movements disorders. We limped along over the past few years and had some real rough bouts of dystonia "attacking" with a vengeance! I literally lived minute by minute and was afraid to make any long therm plans, vacations or obligations. However, during these times of trials God called to read his Word daily, draw closer to Jesus and continue to grow in faith and trust in him. I believe that's when things drastically changed.
---James 3:17-18 (GW)---17 However, the wisdom that comes from above is first of all pure. Then it is peaceful, gentle, obedient, filled with mercy and good deeds, impartial, and sincere. 18 A harvest that has God's approval comes from the peace planted by peacemakers.
However, in late 2010 I had another root canal and a cracked tooth and now my symptoms returned but now my head started pulling to the left instead of the right when I was originally diagnosed. It was like starting all over---the pain, the involuntary pulling, being diagnosed again and new injection points. I was completely deflated yet continued to stay focused on God, family and determined to get well.
However, from 2011 to late 2012 I limped along...some months and injections better than others. Sometimes the spots were injected correctly and sometimes they were off just enough that I was uncomfortable. Then my original neurologist decided to quit and I was referred to another specialist on movements disorders. We limped along over the past few years and had some real rough bouts of dystonia "attacking" with a vengeance! I literally lived minute by minute and was afraid to make any long therm plans, vacations or obligations. However, during these times of trials God called to read his Word daily, draw closer to Jesus and continue to grow in faith and trust in him. I believe that's when things drastically changed.
---James 3:17-18 (GW)---17 However, the wisdom that comes from above is first of all pure. Then it is peaceful, gentle, obedient, filled with mercy and good deeds, impartial, and sincere. 18 A harvest that has God's approval comes from the peace planted by peacemakers.
A new hope from an unlikely source----
As I proceeded in my daily quest of feeling the best I could I noticed on a forum someone that has Cervical dystonia and supplemented their injections with a therapy called "Bowen" therapy. I started to ask this person about how she went about it and what were her results. She started by directing me to a website "http://www.bowtech.com/WebsiteProj/Pages/About/Welcome.aspx" and I read up on this "new" type of therapy. I located a practitioner near me (45 minutes away) and set up an appointment.
It was a strange new therapy I never heard of and my wife and I were a little concerned because it was in someone's home that we have no information or referrals regarding her practice. We prayed and felt led to go. We were greeted warmly and got down to questions and my history. We went over the "do's and don'ts" after every treatment then we began the therapy. It lasted for about an hour or so and was totally relaxing, I even fell asleep. It seemed so simple, they roll two muscles, leave you to relax for a few minutes then come back and roll a few more muscles and continue this process. Most of the process is done laying on your stomach then they ask you to roll over and continue while you're on your back. There's also other "pin point" moves they do while you're sitting or standing. BTW, this is NOT chiropractics---not at all. The only way I can describe it is like plucking a guitar string a certain way that sends a signal to the brain and "re-program" the brain and body to work as it should----everything "resets" overnight.
We drove home and took it easy for the rest of the day and had a great night's sleep. I was told that my body would self adjust over the next 5-10 days so take it easy for 48 hrs. Wow, was I sore---a good sore, that is---I guess my body was totally out of whack. We continued with this treatment every other week for 3 rounds.
Bye the end of the 3rd round my wife noticed my head and neck looked almost normal. I was in very little to no pain doing most activities. Wow---thank you Jesus! Amazing----but it did not end there!
---Prov 3:5-8 (GW)---5 Trust the Lord with all your heart, and do not rely on your own understanding. 6 In all your ways acknowledge him, and he will make your paths smooth. 7 Do not consider yourself wise. Fear the Lord, and turn away from evil. 8 {Then} your body will be healed, and your bones will have nourishment.
It was a strange new therapy I never heard of and my wife and I were a little concerned because it was in someone's home that we have no information or referrals regarding her practice. We prayed and felt led to go. We were greeted warmly and got down to questions and my history. We went over the "do's and don'ts" after every treatment then we began the therapy. It lasted for about an hour or so and was totally relaxing, I even fell asleep. It seemed so simple, they roll two muscles, leave you to relax for a few minutes then come back and roll a few more muscles and continue this process. Most of the process is done laying on your stomach then they ask you to roll over and continue while you're on your back. There's also other "pin point" moves they do while you're sitting or standing. BTW, this is NOT chiropractics---not at all. The only way I can describe it is like plucking a guitar string a certain way that sends a signal to the brain and "re-program" the brain and body to work as it should----everything "resets" overnight.
We drove home and took it easy for the rest of the day and had a great night's sleep. I was told that my body would self adjust over the next 5-10 days so take it easy for 48 hrs. Wow, was I sore---a good sore, that is---I guess my body was totally out of whack. We continued with this treatment every other week for 3 rounds.
Bye the end of the 3rd round my wife noticed my head and neck looked almost normal. I was in very little to no pain doing most activities. Wow---thank you Jesus! Amazing----but it did not end there!
---Prov 3:5-8 (GW)---5 Trust the Lord with all your heart, and do not rely on your own understanding. 6 In all your ways acknowledge him, and he will make your paths smooth. 7 Do not consider yourself wise. Fear the Lord, and turn away from evil. 8 {Then} your body will be healed, and your bones will have nourishment.
The next step----Going to the doctor.
The next step----Going to the doctor.
I started at my general practitioner and thank God he knew what I had right away. It's pretty amazing as most practitioners miss this and people with this disorder suffer for years without treatment or answers. Better yet, after the initial diagnosis, we found out that a friend of ours has the same exact disorder. She did all the research, trial and error regarding neurologists and settled on an excellent movements disorder specialist in Philadelphia,PA. I made an immediate appointment and looked forward to getting started.
My wonderful wife came with me, she's such a HUGE support---thank you God for her love, kindness and patience. We entered the doctor's office and she ran me through numerous tests, hooked up the EMG machine and began the injections. I was torquing to the right and down at the time. With in 3 weeks the spasms were worse probably due to being the first injection and the muscles weakening unevenly. After 5 weeks I was able to walk and drive without holding my head or using sensory tricks. Praise God for directing my path and putting great people in my life.
As the months went by I looked forward to the next bout of injections in hopes of getting better and able to do more activities. After my third bout of injections I believe my improvement peaked. I was able to do many things, but my neck was not straight and still experienced pain from time to time that kept me from pushing the limits. However, I could not complain because I was able to do many, many tasks now that I could not do before.
---Jer 29:11-13 (GW)---11 I know the plans that I have for you, declares the Lord. They are plans for peace and not disaster, plans to give you a future filled with hope. 12 Then you will call to me. You will come and pray to me, and I will hear you. 13 When you look for me, you will find me. When you wholeheartedly seek me,
I started at my general practitioner and thank God he knew what I had right away. It's pretty amazing as most practitioners miss this and people with this disorder suffer for years without treatment or answers. Better yet, after the initial diagnosis, we found out that a friend of ours has the same exact disorder. She did all the research, trial and error regarding neurologists and settled on an excellent movements disorder specialist in Philadelphia,PA. I made an immediate appointment and looked forward to getting started.
My wonderful wife came with me, she's such a HUGE support---thank you God for her love, kindness and patience. We entered the doctor's office and she ran me through numerous tests, hooked up the EMG machine and began the injections. I was torquing to the right and down at the time. With in 3 weeks the spasms were worse probably due to being the first injection and the muscles weakening unevenly. After 5 weeks I was able to walk and drive without holding my head or using sensory tricks. Praise God for directing my path and putting great people in my life.
As the months went by I looked forward to the next bout of injections in hopes of getting better and able to do more activities. After my third bout of injections I believe my improvement peaked. I was able to do many things, but my neck was not straight and still experienced pain from time to time that kept me from pushing the limits. However, I could not complain because I was able to do many, many tasks now that I could not do before.
---Jer 29:11-13 (GW)---11 I know the plans that I have for you, declares the Lord. They are plans for peace and not disaster, plans to give you a future filled with hope. 12 Then you will call to me. You will come and pray to me, and I will hear you. 13 When you look for me, you will find me. When you wholeheartedly seek me,
Subscribe to:
Posts (Atom)