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  • Originally posted by cheesecake
    Roger~
    I was there yesterday but had no breathing room. Is Brian at Fairmont or Broadway for therapy? I will be there early Thursday. I will send you an email with more.
    Will you be returning to Baltimore before Brian finishes?
    Hello Cheesecake

    Sorry I missed you last week. We were still trying to get things together.

    Brian is a Fairmont for therapy. He usually starts at 11:00 AM with OT then has PT starting at 1:00 PM with Echo. I haven't made any reservations yet to return to Baltimore but I may because they've been extended another week. I have a list of DIY things that I have to do at our home while everyone else is in Baltimore.

    Roger

    Comment


    • Originally posted by Roger
      A SCI Medical Question!!!!!

      My son Brian just called me from Baltimore with a question about his injury. Brian has a C6-C7 complete SCI. Today for the first time he noticed that he was perspiring below his injury level. Is this at all significant.

      Roger
      I would suggest he call the nurse Pat G at KKI, she can run it past Dr. Sadowsky. It isn't something you generally expect to see.
      Every day I wake up is a good one

      Comment


      • Thanks Cheesecake

        I forwarded the message to Brian.

        Roger

        Comment


        • Brian will be at the Kennedy Krieger Institute until Sept 28. He was extended an extra week. We were hoping that he would be extended since we have the apartment rented until Oct 2. At KKI Brian is using the EasyStand 6000, the RT 300 bike and the EMPI electrical stimulation. We have prescriptions to get all of these items. This will be another battle for me to fight with the insurance company. When I call Blue Shield of California the representative tells me that there are no limits or exclusions in Brian's PPO policy so whatever he has a prescription for Blue Shield will buy. That sounds too simple. Other people in the health care business have told me that Blue Shield won't pay for equipment like the RT 300 bike. I don't know why the Blue Shield representative would tell me that Blue Shield will pay for the equipment if it isn't true. In any event we're getting the equipment and I deal with the Blue Shield.

          When Brian went to KKI he wasn't convinced that this therapy would help him recover function. He kept asking for scientific evidence that showed why the Activity Based Restorative Therapy was beneficial. He said that the explanations of why the ABRT worked were more anecdotal than scientific. His opinion must have changed because he wants to get this equipment to continue the therapy. I'll find out more when my wife, daughter and Brian get home on Sept 29. In the mean time I'm doing some more work on the house and trying to get the equipment so that when they get home we'll have everything. Brian will continue the out patient therapy at St. Josephs Hospital in Phoenix when he gets home. I know that the people at St. Josephs want to know what Brian has been doing in Baltimore and how their therapy compares. When Brian returns from KKI he'll have a PowerPoint presentation with pictures of him showing how to do the exercises and where to put the electrical stimulation pads. I'm sure the therapists at St. Josephs will be interest in this PowerPoint. I think this sharing of information is great. If the therapists at St. Josephs learn anything at all from Brian's therapy at KKI I will be thrilled.

          Something is really bothering me. When Brian was first taken to St. Josephs the first neurologist that I met was visiting from the Miami Project. He was on a six month fellowship at St. Josephs. The NFL player who was hurt a couple of weeks ago was given an experimental procedure developed at the Miami Project that possibly helped him significantly. His blood was chilled to reduce his body temperature to 92F. I believe that this reduced the swelling and minimized further damage to the spinal cord. Why didn't the neurologist I met mention this procedure to us. I asked him what can be done to help Brian.


          Roger

          Comment


          • Roger~ I was at KKI about a week ago and had hoped to see Brian as our times crossed. I was getting some treatment for a bad shoulder/arm. Unfortunately after 13 injections and abad case of shakes, I had my friend drive me home.
            Can you have your wife or Brian email me at work, or call me and maybe I can meet them before he leaves.
            Thanks,
            Cheesecake

            P.S. I have seen the take home folders and pictures, really makes it easy for the patient as well as outside therapists.
            Every day I wake up is a good one

            Comment


            • My wife daughter and Brian returned to Phoenix on Sat Sept 28 from Baltimore. Brian's opinion of the Kennedy Krieger Institute's therapy is mixed. A lot depends on the particular therapist that worked with him. The first two weeks he felt like the PT therapist was good but the last two weeks he worked with a student that he didn't think was good. There seems to be a significant turn over of therapists at KKI. While we were there two of the therapists left. Brian told me that he thinks that the Shepherd Center Day program therapy was better. As time goes by possibly his opinion will temper. I personally believe that he learned somethings and we're in the process now of obtaining an EasyStand 6000 standing frame, an electrical stimulation machine and a RT 300 bike. Brian used this equipment more at KKI than he did at Shepherd. I'm having trouble finding an EasyStand 6000. This model has been replace by the EasyStand Evolv. Brian has tried both pieces of equipment and prefers the EasyStand 6000. A man from Southwest Medical called me today and said he was working on locating an EasyStand 6000. I saw a shower chair on Carecure.org that might be just what we need, www.GoesAnywhere.com. Our bathroom and shower have been a real problem area. We purchased an Active Aid shower/commode chair but it really hasn't worked well for us. Our bathroom and shower enclosure are just too small. If anyone has a similar problem take a look at the GoesAnywhere web site. Like I said this could solve our problem. It's not cheap but I'm getting desperate to find a solution.

              Today, Brian went back to the out patient therapy at St. Joseph's in Phoenix . I don't know if Brian wants to go back to the Neuro Institute for Physical Therapy. The Neuro Institute owner tends to be a high pressure salesman type and this doesn't sit well.

              Roger
              Last edited by Roger; 10-02-2007, 08:56 PM.

              Comment


              • I'm working on getting the equipment for home that we need to continue Brian's rehab. Yesterday. I received a letter from Blue Shield of California denying the RT-300 bike. The Blue Shield letter said:

                "The clinical rationale is that there is no scientific evidence that this cycle has long term benefits. It is considered investigational and not in accord with Blue Shield of California Medical Policy."

                I called Restorative Therapies and told them about the letter. The representative at Restorative Therapies said that it's difficult to get Blue Shield of California to pay for this equipment even when evidence is submitted that countradicts their claims. Judy, at Restorative Therapies is going to file a grievance in an attempt to overturn this denial.
                In the mean time Brian is going to out-patient therapy at St. Josephs three times a week. He uses a RT-300 at St. Josephs. I consider this to be the first step in the process to get Blue Shield to pay for this equipment.

                Roger

                Comment


                • Yesterday, I drove to Albuquerque and purchased an EasyStand 6000 Glider from a Carecure member Sporto. He was no longer using the standing frame and wanted to free up some floor space. Little by little we're getting the home equipment that we need. I paid $800 for the Easy Stand 6000 Glider so I'll submit a claim to Blue Shield and see what they say. They'll probably say what they usually say DENIED. Buying a used EasyStand 6000 was really the only option because the EasyStand 6000 is no longer being manufactured. My son has tried the EasyStand Envolv and the EasyStand 6000 and he prefers the EasyStand 6000. I was happy to locate this equipment within driving distance of Phoenix.

                  The next piece of equipment we need to get is the RT-300 bike.

                  Roger

                  Comment


                  • Roger, I know that Brian's doctor when he was at KKI has been successful in getting another notorius insurance company to pay when it went to the hearing phase. Since she has written much of the research, keep that in mind.
                    Great to know that things are coming together bit by bit.
                    Every day I wake up is a good one

                    Comment


                    • Thanks Cheesecake

                      I'll keep that in mind when I'm talking to the lady who handles insurance issues at restorative therapies. I'm going to start working on the RT-300 tomorrow.

                      Roger

                      Comment


                      • Brian has been using the EasyStand 6000 everyday. We have also been doing at home the electrical stimulation program setup by Dr. Sadowski at the Kennedy Krieger Institute. When Brian completed the program at KKI they gave him a PowerPoint with pictures and instructions on how to apply the electrical stimulation. The pictures are of Brian showing where to place the e-stem pads and all of the setting for the EMPI machine. At night Brian wears a hand split and contracture boots. Twice a week he goes for hand therapy and three times a week he goes to St. Joseph's for out-patient physical therapy.
                        I've been following with great interest the postings on the Carecure.org CURE FORUM concerning Dr. Davies research. I've made a couple of donations to Dr. Davies lab and I hope others will also donate. I'm no expert on spinal cord research but I've listened to Dr. Davies lecture on UTUBE and I believe his research has great promise. Schmeky, a Carecure member recently visited Dr. Davies' lab and posted a couple of reports on what he saw. I encourage everyone to read the thread in the CURE FORUM Stephen Davies Update. After you read the thread please donate to Dr. Davies' lab. For instructions on how to donate see page 14 posting 139 on the Stephen Davies Update thread. I would love to see Dr. Davies and Dr. Young collaborating. I have also donated money to Dr. Young's lab.

                        Roger

                        Comment


                        • Last night at about midnight we got back from our visit to Irvine California. On Wednesday, Brian and I visited the UC Irvine campus. Prior to his accident Brian had applied to the UC Irvine Medical School. We talked to people in the disability office and the medical school admissions office. It started out as a grueling experience but we hung in there and everything worked out better than we ever could have expected.

                          We arrived at the campus at 1:00 pm for a 2:30 pm meeting at the disability office. We had several campus maps and had located parking near the building where the disability office was shown on the map. To make a long story short the disability office had been moved and no one knew where it was moved to. We finally arrived at the office at 2:15 pm after walking and pushing to the opposite side of campus. After our meeting we decided to go to the Registrar's Office for the School of Medicine which was back near where we had parked originally. Well that office was also moved, we never found out where it had been moved to. We ended up in office of the Director of Admissions for the UC Irvine Medical School. We had not intended on going to this office and apologized for barging in on her without an appointment. She interrupted her work and spent more that 30 minutes talking to Brian about the medical school application process. No one could have been more helpful.

                          Wednesday night we had dinner with four other Carecure members. On Thursday the Carecure members Jennifer, Brian, Karen and Susan together with Karen's daughter Mandy, my wife and I all visited Dr. Keirstead's lab. Jennifer and Brian are preparing a report that will be posted on Carecure. Karen and Susan had traveled from Sacramento to visit Dr. Keirstead's lab. We toured the lab and met with Dr. Keirstead for almost 2 hours anyone who meets him I'm sure will conclude that he's a wonderful man. I had suspected as much when he graciously declined the $200,000 donation from Ricky James earlier this year.

                          Roger

                          Comment


                          • Thanks for the update! Good luck to your son, and sorry I couldn't be there for the CC get together!!

                            (KLD)
                            The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

                            Comment


                            • I have been following your sons story. I am so glad he is continiuing with his education!
                              You and your son seem like amazing people! You need to pat yourself on the shoulder, you have done a wonderful job raising your son!
                              Diana

                              Comment


                              • Diana

                                Thanks for the compliment but it has mainly been Brian. I could go on and on with example but it would be a father bragging about his son's accomplishments.

                                Roger
                                Last edited by Roger; 12-16-2007, 09:45 PM.

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