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Chat: Sally Nielsen

Monday, September 26, 2011

Interviewer: Sally, thank you for talking to us tonight, in our live online chat room.

Sally Nielsen: Thanks for having me tonight, I'm looking forward to the questions.

Interviewer: Now we will go to the questions from our guests.

chrisr asks: I missed your interview my mum has had a stroke and we have been told she is not good what happened to your fiancé?

Sally Nielsen: Sam had 8 strokes on 14th February 2010 and he was give a 5% chance of survival.

threeangles asks: How long has Sam been on his medication, Stilnox?

Sally Nielsen: Sam has been on the medication for 5 months now.

Luke asks: How did you get stillnox if the doctors were against it? Was it prescribed?

Sally Nielsen: Yes it was prescribed for sleeping purposes. We asked the doctor for a couple of months and they said no at first.

Paul asks: How often do you have to administer the stillnox to Sam ?

Sally Nielsen: I administer it 4 times a day and he talks for roughly an hour each time.

John asks: How long do the effects of stillnox last? and do they last longer each time?

Sally Nielsen: It really depends, as there are many variables such as how much he's eaten or if he's overtired, or how much therapy he has had. Sometimes it barely works at all, other times he will talk for 2 hours or so.

Samantha asks: I'm really happy to see your love and dedication sticking by his side and healing him through this all, Its a great to see that still Have the family been supporting you through this time?

Sally Nielsen: Thanks Samantha, we are very blessed to have the support of both sides of our family and could not possibly do it without them. Sometimes it takes an army of people to rally around you to achieve the goals we are trying to reach.

tsubi asks: I watch your story and how long was it before you started seeing results from stilnox?

Sally Nielsen: It took about 7 days of mixing around the dosage to find the right amount to assist Sam to talk. We did see a dramatic change in his facial expressions and a decrease in moaning from day 1. The Stillnox not only helps his facial expressions and speech but it relaxes his muscles and makes for him to do what he's trying to do and also helps us who are helping him.

lucij asks: A true inspiration you are sally. Why has more stroke research not been done to use this drug as an alternative treatment, I mean it has obviously been around for a while?

Sally Nielsen: Unfortunately it's not been supported in Australia thus far and it's extremely disappointing to all of us who have a family member who suffers from a stroke. Hopefully by creating public awareness something will happen to encourage greater research to help others who have suffered from strokes.

simon asks: What sort of medical tests were used to establish an improvement in cognitive function? could this be a temporary improvement?

Sally Nielsen: It very well could be temporary but we hope it's not. To date there has been no conclusive medical evidence to prove this is creating a long term change for Sam, although this is what we are striving for.

chloec asks: Hi Sally, I have a brother who has a brain injury due to a car accident and my parents have been trying hard to get his brain specialist to give him stillnox but have had no success. How did u get it? Did u contact doctor Nel directly? Do you have his contact details?

Sally Nielsen: You are really lucky as you have a brain specialist and we didn't have that. We managed to get the script from Sams treating doctor in hospital and then got in touch with Dr Wally Nel a few months later. His contact details are available online if you search for his name.

DamSteph asks: Sam and Sally you are both truly inspirational. We too are a young couple that have been affected by a brain injury from a brain aneurysm and stroke. Have you notices any side affects from the Stilnox? As it is a sleeping drug, have docs told you why Sam has become more alert, rather than sleepy? Does it help relax his limbs too?

Sally Nielsen: Yes the Stillnox relaxes his muscles and assists him to move more freely. He does not get sleepy from Stillnox, it affects his dormant brain cells by re-igniting them, which causes them to work.

John asks: Has Sam had any side effects at all from the stillnox?

Sally Nielsen: No, he hasn't. Probably the only downside is that he's become very aware of his circumstances and wants to have Stillnox all the time. You have to wait a certain amount of time between doses so it's not possible to have it all the time, this can be frustrating for Sam.

Nick asks: Did Sam have any medical conditions before the accident?

Sally Nielsen: He did, Sam has predisposed medical condition called cystic fibrosis it didn't impact on his life and he was extremely healthy, and he wasn't on any medication for cystic fibrosis at all in fact he was so healthy his doctor would say he was the healthiest CF patient in Queensland.

chris_1959 asks: Evening. I'm Chris. I have a brother with an ABI sustained from a fall 7 years ago and has epileptic seizures. Did or does Sam have any seizures? Thanks

Sally Nielsen: No, Sam has never suffered any seizures to date, although it was a fear after he first suffered his stroke.

kime1988 asks: Do you know if this can be used on a child? Aged four or five?

Sally Nielsen: I am not sure I'd refer you back to your treating medical practitioner or suggest you contact Dr Wally Nel. I do know someone who has treated their son aged 7 with this.

shelbz2011 asks: Is it still hard to deal with whats happened?

Sally Nielsen: No, not at all, time goes on and you can only look forward to the future, life can only get better and we keep smiling.

Shanyn asks: Hi Sally. I watched your story and was so inspired. I had seen that South African doctor on a documentary before and was so surprised that a sleeping pill was able to affect the brain in such a way. I admire your courage and strength, and also that of Sam's. Are you ever frustrated by what's happened, thinking that that one event could have been avoided, or is the strokes that Sam had something that was waiting to happen?

Sally Nielsen: I don't get frustrated, I'm a firm believe if something is meant to happen it will happen and for a reason. Also that there will be something to learn and a positive reaction to it. It was obviously meant to happen otherwise Sam wouldn't have been able to help and touch so many people.

Tsmumm asks: Do you care for Sam 100% - 24hrs a day or do you have other outlets to help you out?

Sally Nielsen: Sadly, I still have to pay a mortgage and have to work, so we do have help while I'm at work.

alana asks: Hi is Sam on any other medication that Stilnox might interfere with?

Sally Nielsen: No, currently Sam is not on any other medication, Stilnox is the only thing he takes. I'm sure it might interfere with some other drugs but fortunately that isn't a cause for worry with us.

Susie asks: Do you know if other stroke victims have tried it with the same effect?

Sally Nielsen: Not in Australia. As far as we are aware Sam is somewhat of an anomoly, however we do know of other cases where people have found improvement, just not to the same extent as Sam.

Damien asks: How did you start the trial - did you engage with Australian doctors first ? How did you get around the nervousness of the doctors?

Sally Nielsen: We had to reassure the doctors that we would take responsibility if something went wrong. It took months of regular persistence and constant discussion with the medical team.

monkey13_25 asks: Next month my husband and I are hosting "Maureen's Dinner To Make A Difference"to raise funds for medical research. I am always interested on hearing stories connected to stroke research. Is the Australian Government now behind the use of Stilnox for severely affected stroke survivors?

Sally Nielsen: No, not to my knowledge. Currently we do not have the public support of any Australian medical team. You are a wonderful person for all the work you do to raise the funds.

Ryan asks: When Sam is chatting to you, on Stillnox, is it the same old Sam you always knew? I imagine you both must have grown up a lot since all of this happened.

Sally Nielsen: Yes we have both matured a lot through this but at the heart of it we're still the same people and Sam is still the same beautiful soul he was prior to his stroke.

Ryan asks: Has Sam been able to articulate what it was like for him to feel trapped inside his body for all that time before you discovered Stillnox?

Sally Nielsen: Yes. Sam regularly speaks about being trapped in his body and always says the ability to communicate is the key to life.

james_ellis asks: I saw the original story on ABC and its a big inspiration...well done and good luck for the future! On the old story it said they were working on a non-drowzy version of the drug...any developments on that?

Sally Nielsen: Thank you so much for your kind words. We have not been updated on the state of the non-drowsy version of the drug but would love to hear anything in regards to this.

Brookie_87 asks: Sally you are an inspiration. I work in a preschool with many children that have various additional needs and when I first seen your story a few months ago it made me think of how much the children we care for are aware of. Do you know if Sam aware of everything that is happening around him when he is not on Stilnox?

Sally Nielsen: Yes, Sam is aware of everything when he is on and off Stilnox. We have to be very careful what we say around him and make sure we always speak to him and not about him, just as you would have to do in a kindergarten. I think you're fantastic to work with those children day in and day out and give them the support they need.

jadeh asks: Is Stillnox a drug that is affordable to most families?

Sally Nielsen: It really depends on how much you are required to take and if you have private medical insurance cover or general insurance. It's not on the PBS list unfortunately. It works out to be about $14 a box and we go through a LOT of them.

Ryan asks: Were you sure Sam was still there, even when it may have looked to some people like he wasn't? How did you know? How did you keep the faith?

Sally Nielsen: I always knew that Sam was in there, it was just a matter of when and how he would be able to come out. It wasn't hard to keep my faith as I knew Sam would always make the right decisions for us and he had already done that by choosing to live.

haroldbyrne asks: How long after the stroke and into his recovery did he start taking Stillnox?

Sally Nielsen: Fifteen months, Sam commenced taking Stillnox and he started talking on the 7th day.

fenton asks: Sally, I realise that dosage has a lot to do with it, but roughly for what period of time do you get your old Sam back after each treatment?

Sally Nielsen: Roughly one hour after each dosage (which is beyond more than I could ever have asked for).

Ryan asks: Sally will you be resuming your blog anytime soon? I have been checking back there regularly since seeing you on Australian Story. Your story has had a huge impact on me. The power of your love is phenomenal.

Sally Nielsen: No I won't be resuming the blog anytime soon as I have a book coming out in February next year.

kel01 asks: Do you accept donations to help you and Sam out? I have searched on the internet but couldn't find anything.

Sally Nielsen: Not at this point in time, but thank you for your kind thoughts.

SteveS asks: Hi Sally, my mum has had a brain injury for 5 yrs. I am her full-time carer like you with Sam. I would desperately like to try Stillnox with her. Can you give me some advice on where to start?

Sally Nielsen: You are an absolute angel for caring for your mum. I would refer you to do an internet search for Dr Wally Nels and get his contact details. Then contact him directly as he's happy to talk to everyone who enquires.

CaptBob asks: Sally I admire your spirit and that of Sam, what can we the general public do to assist?

Sally Nielsen: That's the million dollar question ! It would be wonderful if the greater community could take a minute to support brain injuries within Australia as there isn't anywhere near enough support as there should be. These people sadly suffer in rehab centres that aren't capable of caring for them, they are then sent home with no follow up and it's an absolute shame on Australia.

Interviewer: I am sorry we are out of time, do you have anything else you would like to share before we finish tonight?

Sally Nielsen: I would like to thank everyone for watching our story an incredible amount of people suffer from brain injuries every year and are left to wither away. By watching Sam's story you are showing Australia that it's ok to support people with brain injuries and disabilities as they have a right to be a part of the community. I'm sorry I couldn't answer every single question tonight but I have thoroughly enjoyed the support. Sam would also like to share his gratefulness with you all.

Interviewer: Once again thank you for joining us, and goodnight.

Interviewer: This concludes our chat with Sally Nielsen, Sunday September 25, 2011.

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