Imagine being at war in the midst of battle without being aware of what was going on around you. Imagine having the desire to serve your country and help your fellow soldiers but you needed an aid to walk. This has been a problem for British soldier Craig  Lundberg for the past three years.  Craig Lundberg lost his vision after he was struck by a rocket propelled grenade in 2007.  

After his incident Corporal Craig Lundberg was the first to get his hands or should I say tongue on a new device called Brainport. You can say that he was a pioneer in using this device. Brainport allows him to see images from his goggles which are then translated with a simulation pattern to his tongue and converted into signals that can be understood by his brain. People who are visually impaired will learn to use this device by recognizing patterns, movement and also high contrast objects. What concerns me is what happens if this particular soldier gets the device damaged while on a mission? Does the device have some sort of backup software and is it durable enough to withstand the different environments and situations a soldier has to deal with in the time of war?

According to Lundberg he says that the device feels like “licking a nine volt battery” or “like popping candy”. This device has a great potential to change the lives of many people if released to the public. This device could help those who are visually impaired see their loved ones which could be an enormous advancement in life of people affected by this disability. Lundberg says “ One of the things it has allowed me to do is pick up objects straight away, I can reach out and pick them up when before I would be fumbling around to feel for them”. The value of this simple action is taken for granted by so many people. You can tell that life is a lot more easier for Lundberg and his family ….even more so than before. There has to be some feeling of relief within him that now he has the ability to do more things for himself as well as others.

Currently this revolutionary device being used is only a prototype according to Disability and Health News. hopefully the British army will find answers to these problems before it is used by other visually impaired soldiers.The neuropsychologist supervising this trial Maurice Pitito says that “ It’s a concept in which you replace a sense that was lost by another one.” Brainport can allow people who are visually impaired walk around without a cane. It gives them the opportunity to navigate obstacles and even the opportunity to read signs. It also allows them to get a feeling of the world from their tongue and that gives them a sense of seeing. Most people do not understand that you do not only see with your eyes but you see with your brain.

SCRN has written many articles about issues in Europe as the disabled were removed from airplanes because the pilot didn’t want them on board to taxi drivers refusing to take people in wheelchairs because it took to long to get them into the car. It is good that governments realize that the disabled should be treated no differently than the able bodied and should not get substandard service or be charged extra because of their injury or medical condition. It will be interesting to see how the advertisement blitz works and whether workers will actually take it to heart that they need to help those that cannot help themselves. It is not clear who will be doing the enforcement of the law, but they better have plenty of officers around to make sure things are working properly. People are creatures of habit and will not do more work or do things that they do not want to unless they are forced to. Secret officers should try to get on mass transit to make sure it is working properly and if not there needs to be stiff fines to be paid. Once a few workers get hit with big fines it will go through the grape vine that they have to follow the law or else. 

The disabled are usually at the bottom of the poor, unable to pay for good medical care or housing. At least there are government programs in the United States to make sure that the disabled can take care of themselves and their families. Without these safety nets, the disabled have no way of working to take care of themselves or to pay for needed medical care or drugs. The government of Haiti will need to think about how they are going to care for people that cannot care for themselves. Just thowing the disabled to the wolves and forgetting about them is not the way to do this. Add the pubic stigma of being disabled and you have a recipe for disaster. With no government help and most companies refusing to hire the disabled and you have a group that is guaranteed to starve to death on an island that they have no way of getting off of. The United Nations has a significant group on the ground in Haiti that is used for peacekeeping but can and should be used to help the disabled. There should never be a group that is so shunned that they are allowed to starve to death with no medical help and no one cares. Especially where these people are disabled because they were the victim of a natural disaster, they did not create their problem, they are just trying to live through it. There must be rehab programs put in place to help the newly disabled to get the most out of their situation and to train them for jobs that they can do. Everyone wants to be useful and to work and take care of themselves and their family.

If you are in a similar situation…here are some tips that may help you:

- www.caregiver.com
- www.nfca.com (National Family Caregivers Association)
- www.pulseamerica.org
- www.npaf.org (National Patient Advocate Foundation)
- http://www.accessiblesociety.org/topics/ada/olmsteadoverview.htm (Olmstead Act)

Remember…”to fight for your beliefs; you must believe in your fights”. I not only feel it’s worth fighting for my husband but that on some level Greg and I feel that we are fighting for you…the reader.

Again, thank you for your continued support.

The Roaring Mouse

We’re sure that many of you have gone through an experience at the hospital where it was just so unbelievable exasperating that you didn’t know what to do first. The letter below that I wrote to a hospital that Greg stayed at; I stumbled into the other day and was able to relive it just like it was yesterday. The only exception was that I was actually able to laugh at the insanity of it and still able to say I wouldn’t have done anything differently. Please free to comment..Maybe you have suggestions…Or Maybe you want to share..in either case enjoy. (Please note all names have changed and or titles used to protect the nature of situation.)

September , 2007

Hospital in Florida

Attention: Administration

Subject: What an SCI person goes through during an emergency at North Broward Med. Ctr.

Ann at the Director of Nursing’s office, asked for a notation on our (Greg’s and my) experiences as a result of our current visit to the hospital after speaking this evening. I will be hand delivering it to her tomorrow morning. Below is our story. (Greg is an SCI at T-5 paralyzed from the stomach down.)

History:
Saturday , 9/1 at 1am: I am helping Greg into bed when he falls backward in bed (something he’s done before). But this time he must have gotten a nasty spasm at the same time because he suddenly feels pain so badly he sees white and his teeth hurt. He has a mild toe infection that is healing and a burn that is healing.

Sunday, 9/2 afternoon: Greg has limited use of his right arm and lost all tactile sensation from the top of the right side of his head down to the fingertips of his right hand. We can’t get a hold of any of his doctors. We call a friend who had an issue with spinal cord years ago and she directs us to go to the hospital. We get coverage for our daughter, pack all of Greg’s needs including his commode (prior experience has taught us that hospitals in Broward County don’t come with drop arm commodes) and we get to the hospital at 6pm.

Monday, 9/3 12:30am: Dr. Abbott finally sees Greg and takes a cat scan at around 12 midnight. We explain that Greg was about to meet with the neurosurgeon for possible fluid in the spinal column. We also ask for an air mattress for Greg. The doctor comes back later in the morning to tell us that nothing is wrong with him. I ask him what am I supposed to do – this doesn’t make sense. Dr. Abbott tells us that it is probably a latent side effect of the accident. But (I say) there is something wrong. The doctor asks what I expect him to do and I tell him to admit Greg. The doctor says that there is nothing wrong with Greg but he can admit him to a nursing home if I wish. So angry I’m holding back tears I get the ambulance (as Greg is still recovering from meds for the catscan) to take Greg back home. Greg never left the gurney. It is 6am.

Monday 9/3 4pm: We are back at the hospital after speaking with the on-call doctor to Greg’s IM, receiving a message via the nursing agency from one of Greg’s doctors and the nurse who came by to get Greg back to the hospital. We not only tell the hospital this but that we want Greg admitted as well (in the meantime we are prepared to pull the liability card). This time the hospital admits us but sends us to a different section in the ER department. Things seem to move more quickly and a new doctor (Dr. Bob) sees us. We tell him all the important details from the night before and ask for the air mattress. Different tests are done. We continue to ask for Greg’s neurosurgeon. At 10pm Greg is admitted as a stroke case onto the 6th floor with a room outside of the nurse’s station.

Tuesday 9/4: Greg is in tremendous amounts of pain. His spasms are so bad he’s hiccuping. Slight touch sends him into fits of pain. He still doesn’t have an air mattress. Light tests are done and we hear that his neurosurgeon is on the case. (We presume that this is because the physiatrist (Greg’s) has notified the neurosurgeon.) Nurses are refusing to give him his medications, bowel program or listen to his directed requests on how to move him. The nurse this day is George (who is pulling an extra shift) and we are grateful as he has worked with Greg before and his work is excellent!

Wednesday 9/5: I call Greg before visiting him and find out that a nurse refused to stop touching him after he asked her to 3 times. I call the head nurse and tell her that that nurse BiBi is no longer allowed around Greg. When I arrive at the hospital I find that medications, bowel program, burn and foot issues are not being handled properly. I end up training the nurse on how to do digital stimulation on Greg. No one is checking for wounds. No air mattress. …I in the meantime get the MRIs from Stand-up MRI and deliver them to the neurosurgeon’s office. He happens to be there. He’s very angry with Greg’s insurance company. The surgery Greg needs according to insurance is elective…but in reality it’s life threatening as he’ll be a permanent quad if he doesn’t have the surgery. I call my very knowledgeable friends who give me ideas and contacts. At 4pm I’m waiting for a call from an attorney. I also keep the neurologist and neurosurgeon up to date…while going after the nurses to do their job. 4:55pm – The neurosurgeon contacts me and tells me that he and the neurologist are going to do the surgery under the "emergency issue" bypassing the elective requirements. Greg’s surgery will be Friday. Bowel program is done…but I had to guide and teach. Nurses have to be reminded of Greg’s paralysis and lack of right arm use. The physiatrist stops by to see Greg and visit his nurses as well.(I might have the wrong date for the physiatrist but am fairly confident with this one.)

Thursday 9/6: Medications are still not getting to him on time. He finally gets the air mattress. He has not been inspected for wounds, his foot and burns have not been addressed. I am again teaching nurses how to do Greg’s bowel program. The social worker, introduces herself and I tell her what Greg has been going through. She brings the charge nurse over and follows that up with a call to the Nurse Manager who upon learning of the situation informs me that she is going to follow through.

Friday 9/7: I get to the hospital at about 8:30a. I find that Greg was given his meds an hour late and he’s extremely uncomfortable. He tells me that at 6:30a he was screaming in pain so badly that a nurse came in, looked at him, and left closing the door behind her. As he finishes he also tells me he needs to sit up as he’s uncomfortable. His spasms come. I am holding onto the back side of his knee to prevent his spasms from getting worse. He is screaming in pain! His room is outside the nurses station. 20 minutes later a PCA wanders in and I ask if they hear the screaming. She states no she hasn’t and I ask her if she thinks getting a nurse would be a good idea. (Yes..I’m still holding Greg’s knee. 5 minutes pass and I have Greg ring the nurse button. Someone else comes in and we tell them we need a nurse now to get Greg up. 5 minutes passes and I have Greg hit the button again. A nurse comes in and I tell her that we need help now. She goes into the hallway and asks for help. Finally she comes back in with someone. I’m beyond livid. I start giving out commands on how to help Greg so he stops screaming in pain. (I don’t think I need to state the looks on Greg’s or my face.) He goes to surgery at 10:30am. I find out surgery didn’t start until 12:30pm. The surgeon comes out after 4 and tells me the surgery was a success and that he was pleased. I stay with Greg until he’s on the MICU unit. Belongings, commode and MRI films are brought to the unit as well by the social worker.

Saturday 9/8: Greg is recovering. I’m still asking about his burns, foot and bowel program to the male nurse. We get the strong impression that he doesn’t want to do Greg’s bowel program. At 2 we start actively asking for it to be done. At 4pm everything is finally done and I discover to my horror that Greg has a 3 inch level 1 wound. The nurse states that they don’t come over night. I tell him that since Greg’s accident there has not been a wound on my watch and that he didn’t come in with one. His burns are treated with items I brought from home.

Sunday 9/9: As I arrive (around 11am) I find that they have moved Greg from MICU to the 3rd floor (Room 332) before he has met the requirement of sitting up 90degrees. I start leaving messages with doctors. When I get to Greg’s new room I find his MRIs are missing and that they forgot to get him his lunch. I get his lunch for him after meeting with the neurosurgeon who tells us how the rest of the stay will go and that he would rather see Greg out of the hospital under my care. I also inquire if there are any other hospitals we should try for the next emergency. We are recommended two others. (The point is not which hospitals – but that we even had this conversation!!!) During the afternoon a hotshot x-ray tech (male with a slovak accent), who comes to take an x-ray, is angry with me for reacting to Greg’s screams of pain and trying to teach the tech how to move Greg properly. Greg tells him that considering he’s been hurt several times, I (Laura) have every right to do what I am doing. The x-ray tech comes back again later in the day to redo them and balks when Greg and I come up with another way to maneuver Greg. And, what do you know…Greg had no pain! Day nurses have trouble giving Greg’s meds properly. They also want to draw blood and the neurosurgeon has informed Greg that it is not necessary as temperature fluctuation will be normal for Greg after surgery. Greg refuses the blood drawing. Night shift comes and they (according to Greg) were perfect – he never had to ask for anything. We note his MRIs are missing and I inquire as to their retrieval. It will be looked into according to the Nursing Manager.

Monday, 9/10: 8am to about 11am. I am still at home. Greg has called me for the following reasons: His breakfast was interrupted about 10 times. At that time a nurse comes with a student to do his bowel program and gets upset when Greg asks for another 5 minutes to finish his breakfast. The nurse becomes upset and comes back about 20 minutes later to try again. He also informs me that he’s not being turned properly or that he’s receiving his medications properly. When the nurse returns to do his bowel program she argues with him as to the procedure stating that it is to be enema and the bowel will come out on it’s own. Greg states that the enema is a “just in case” and that instead he is to receive digital stimulation. The nurse claims it can’t be done that way as Greg will explode. Greg explains that this is not the case and the nurse goes away. Greg calls me in frustration. I call the neurosurgeon and leave message as well as Dr. Bob. Both doctor’s secretary’s inform me that they’ll visit Greg at lunchtime but Dr. Bob’s also states that the directions are as Greg is giving them. I call the charge nurse (Melissa) and explain the situation. I then give her detailed instructions on how the bowel program works. She explains that this is not what Dr. Bob wrote down. (His office explained the contrary.) Greg later informs me that the bowel program is done with the enema somewhat to his instructions but they do not tell him what came out so we can make sure things are working properly.

Greg then calls me with this laugh: the podiatrist comes to visit Greg. Greg explains to her that he’s been told that she doesn’t exist. The doctor explains otherwise. At that moment two nurses come in. The doctor turns to them and asks if there are any podiatrists. The nurses state no. The doctor tells them that she is a podiatrist. The nurses ask how she got in. Doctor: “the same way other doctors get in – with a consult!” The nurses mused that it must be something unusual. The doctor states that it isn’t in fact they come to the hospital 6 days a week. Greg’s foot is treated.

I then arrive at about 1pm: (Background: when this began, the neurosurgeon didn’t think it was a good idea for Greg’s to miss our daughter’s first birthday so suggests that we talk to personnel about arrangements for it’s occurrence. The social worker was excellent in making this occur!) I see a patient advocate and tell her that we need to “talk.” Before bringing our daughter upstairs, I run up to check up on Greg. Pain is written on his face. Greg brings me up to date. Dr. Bob came by and spoke with the nurses. The neurosurgeon had a ½ hour “chat” with the nurses and how his medication is to work. The neurosurgeon came in, saw Greg and shrugged his shoulders at frustration with the day nurses. The neurosurgeon even went so far as to change one of Greg’s meds to a patch so it is one less for the nurses to dose. (We learned later that the doctor was written up for this.) Greg himself is laying semi-flat, not on pillows for support and has a box of powder on his genitals. Greg said it was their idea of turning him – with pain of course! He also tells me that after the neurosurgeon left he heard 3 nurses talking in the room next to his complaining about him and the neurosurgeon. Greg is still in pain and has not been able to catch up with himself to relax and reduce the pain he is feeling. He also explains that lunch was unrecognizable and the therapist who had come by to visit Greg went and got him a new lunch to help him feel a bit better. (She’s wonderful!) (Greg was supposed to be calm and set for the party.) I’m up to my eyeballs in anger. I walk out to nurse Cecil and in a very clear and direct tone tell her that Greg is not to be disturbed by anyone and that if anyone has a problem with it…they are to see me. I stall the party for one hour to accommodate Greg’s needs and pain. I also place a call to the patient advocate asking to meet with the nursing director – call not returned. A friend and myself manage to pull off the party for the sake of our daughter and Greg. After our friend leaves…about 4 pm…I clean things up and help Greg acquire his next set of needs. He and I are finding it difficult to calm down. I seek out a social worker asking for the Director of Nursing. She tells me the unit is having an off day. I don’t buy it and in the meantime she introduces me to David (another patient advocate) to help me bring some party items to the car. Realizing who he is, I tell him all that has been noted thus far. He tells me that perhaps a meeting with the nursing managers from the 3rd and 6th floors should meet with us and that it might happen tomorrow. He is attentive and before I leave for the day, helps me to get a nurse to clean Greg’s genitals, get him turned and medicated properly. He also helps to resolve an issue of a blood drawing. As no doctors ordered it, Greg again refuses it. (I see no problem with this.) He also gives me the number to contact the Director of Nursing. I leave at 4:45p. I call Greg at 6 to see if his needs are met. He weakly tells me they are. When the evening shift comes on he tells me things are good again and he’s going to try and sleep.

Highlights:
Lack of appropriate bedding for wound prevention
Lack of intervention upon first entry to ER
Lack of good nursing care wherein medications, appropriate treatments (including bowel and turning back/forth) and courtesies are given
Lack of consistent work policies
Lack of training on digital stimulation procedures
(Lack of consideration for those paralyzed and unable to reach the phone, call bell and medication handle/pump. I was always putting it where he could reach them. This was every day with the exception of the MICU unit.)

Personal Note:
I am not a nurse! Why am I training the nurses? They went to school for nursing -I didn’t. They are supposed to know more then me. Why am I writing this four page dissertation from 10 – 11pm Monday night? Why did Greg and I have to endure this fiasco?

Conclusion:
I strongly suggest that all units who work with the spinal cord injured go through an inservice as to how to work with SCI patients and appropriately attend to their needs. Perhaps having them spend a day as one…it might further enhance the process. A side note: teach them to clearly understand these simple concepts that by meeting simple needs of the SCI, you are making life easier and less stressful for them (and their caregivers!)!

Respectfully submitted,

Laura A. George
Florida
 

We are writing this to you while on the road – literally! We are currently in the process of relocating our family and our company to Georgia. We are doing this to be closer to a family support system and because we still do not have access to shelter from a hurricane. Yes – this is the perfect storm.

Even though we are registered in Broward county for shelter – that registration does not transfer anywhere else in the state of Florida. We did call our governmental representatives and there is no shelter for us while on the road if we get caught in the storm. We expect to be in Georgia by tonight – Monday.

If you are caught without a safe haven to access during Faye’s visit please write to webmaster@spinalcordresources.com. We will be monitoring this closely and do have resources on standby that can help you. Please remember to stock up on your medical supplies in addition to the other supplies you are advised to collect on the news. Although Faye is only expected to be a Category 1, have supplies on hand should storm increase in intensity. Better to be called a fool, then to feel foolish for not being prepared!

As for Spinal Cord Resources Network, we will still be working actively in Florida and will be adding Georgia to our repertoire. There are also some exciting upcoming connections that we will be announcing soon that will have be available for you as well.

Stay well, keep safe and G-d bless!

Laura George
Vice President
Spinal Cord Resources Network