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BioMOx Study - Participant Q & A

Some representative experiences of participants in the BioMOx Study

Q1 You recently enrolled into BioMOx - why did you decide to do it?

Mrs LB (healthy relative from an MND family linked to a genetic abnormality): "After watching my mother and grandmother have MND, I had a test which showed that I have a higher-than-normal risk of becoming symptomatic. Therefore I feel it is vital that I help with research as much as I can. This study was something I thought could find pieces to the puzzle."

Mrs GC (healthy volunteer): "I have worked with patients with a variety of neurological conditions for many years and seen the effects of MND on both communication and swallow function. Research in any condition is vital in trying to identify early diagnosis or new treatments and healthy volunteers may be difficult to recruit, particularly when invasive techniques are involved. Also, as I often have to explain such investigations to patients, I thought it would be very useful to experience them myself to give an honest account of what to expect."

Mrs SB: "I value what the NHS has done for me since I was diagnosed with PLS. I felt honoured to be asked to take part in this study. I would do anything to help the medical profession to diagnose and find a cure for this disease."

Mr SP: "I enrolled because I feel we all have a responsibility to assist in defeating MND, so my son or grandchildren do not have to suffer this debilitating illness."

Mrs PB: "To find answers as to why is has happened to me, and to help others."

Mrs ML (healthy volunteer): "I read Dr Martin Turner's article in the MND newsletter, Thumbprint, and wanted to help. I had watched and helped my husband live with MND for 15 months. He had generously donated his brain and spinal cord for research and I felt that taking part in this study was the least that I could do to help other MND patients in the future."

Mr JP: "I consider a programme such as BioMOx is fundamental in its aims and objectives. The basic methodologies described are ideal from my experience to better understand the problems and generate a fix."

Mr RL: "I take part in as much MND research as I can find because it is just about the only thing I can do to help myself and others with the disease. I doubt that a cure will be found in my lifetime but hopefully it will be soon."

Mr MH: "I enrolled into the BioMOx study in the hope of helping others who may be diagnosed with MND, and to help with the research programme looking into finding a cure for this disease."

Q2 Were you worried about anything beforehand?

Mrs LB (healthy relative from an MND family linked to a genetic abnormality): "I was apprehensive about the process but I think that's quite normal. However, all the written information gave me peace of mind to be able to participate fully."

Mrs GC (healthy volunteer): "No. The written information was very clear and accurate."

Mrs SB: "Even though I have been in an MRI scanner many times I was a little nervous of going in it again despite the fact that everything was explained to me in great detail."

Mr SP: "Due to my time working in the health service and the fact that I am the type of person who tends not to worry, the tests did not frighten me at all. Also, there is the fact that this disease makes me feel I am not contributing to society, and by taking part I feel I am rectifying this."

Mrs ML (healthy volunteer): "During his diagnosis period my husband had had both MRI and lumbar puncture tests and said that both were very tolerable so I was sure I could cope OK. I read most of the articles on the BioMOx website and felt very well informed, which always alleviates any fear."

Mr JP: "As with anything of this nature, I was a little apprehensive."

Mr MH: "No, there were no worries about taking part. I had been through MRI scans and lumbar puncture before."

Q3 What was the MRI scan like? What did you have to wear, how noisy was it, and how easy was it to keep still? Did you feel claustrophobic at all?

Mrs LB (healthy relative from an MND family linked to a genetic abnormality): "I had never had an MRI scan prior to this and had no preconceived ideas other than it would be loud. The staff were amazing. I had a little banter with the radiographer which relaxed me. They gave me a blanket as it was cold, and little pillows to make me comfortable. I was totally calm and subsequently made it very easy to keep still. They talked to me the whole time, and spoke to me about all the different scans, piped into my headphones. For the last 15 minute scan I actually fell asleep! I have been known to suffer mild claustrophobia but in all honesty the people doing the scan made the experience something I would happily do again."

Mrs GC (healthy volunteer): "The MRI was fascinating! Quite noisy and the table you lie on vibrates at certain times during the scan but the Radiographer explained everything and warned you whether it was going to be loud, short or long scan and whether or not the table would vibrate. They give you ear plugs to lessen the noise and headphones so that you can hear their instructions. Although there is a mirror above you (to see the team in the next room), I couldn't see them without my glasses on! I kept my eyes closed and breathed slowly throughout the scan and didn't feel claustrophobic at all. The scan took about 50 minutes but it didn't feel it was that long and I had no problem keeping still. I just wore jeans and a t-shirt but they do cover you with a blanket as the room was cool. Ladies, you do need to either take your under-wired bra off or wear a soft cup version!"

Mrs SB: "I made sure that I had no metal in my clothing but forgot about my under-wired bra! As Steve and Dr Turner were preparing the equipment I told them I was nervous. They were very reassuring and told me to press the emergency button if I wanted to come out of the scanner at any time during the scanning. I was a little apprehensive as they fitted the head 'cage' and I was tense when they moved me into the 'tunnel' of the scanner. I needn't have worried. I could see Steve through a mirror and he waved and talked to me after each scan. He explained how long each scan would take, what it would sound like, and whether I would feel any vibration from the table. I closed my eyes during much of the scanning and opened them to reassure myself that the team were still there! The noise wasn't as bad as I had expected and the table vibrations were not unpleasant at all. I didn't find it difficult to keep my head still as I was very comfortable. The whole procedure didn't seem to last long, even though it took 45 minutes."

Mr SP: "The MRI scan was quite warm, quite noisy and shakes you about a little, but you have nothing to fear as you are guided through the whole procedure by staff telling you what's going to happen before it actually occurs. It was quite a long scan (40 minutes) but I found it easy to do. The following method helped me cope with no trouble at all: breathing in a slow and steady rhythm, focusing my eyes on a point directly above, imagining I was out sun-bathing in a grassy field. To remain still for such a long time was simple as your head is totally supported. At no time when in the scanner did I feel claustrophobic. The clothes I wore were T-shirt and jogging bottoms along with trainers secured with Velcro straps. I also had to make sure my pockets were completely empty of any metal items."

Mrs PB: "Not as bad as I had expected because they placed a mirror to enable you to see outside. I was fully clothed except for my bra (because of the metal wire). It was fairly noisy but not excessive. Keeping still was just about manageable. It was only a little bit claustrophobic."

Mrs ML (healthy volunteer): "No doubt about it, the MRI is noisy! But they do give you earplugs and headphones which makes it tolerable. You wear your own clothes so choosing something comfortable helps, preferably without any metal attachments on the upper body; my trouser clips were OK as you are only inserted head first into the tube to about halfway down your body. You are given a headrest to suit your requirements, I needed mine quite high for comfort, and then soft wedges either side to stop you moving your head. I did feel very slightly claustrophobic at first but the mirror fitted overhead makes a great deal of difference and gives you a real sense of 'depth'. Being able to watch the doctors and technicians through the 'window' relieves the boredom and they are in constant contact with you through the headphones. Listening to the radio (during the quieter tests when you can actually hear it) also helps to pass the time. They do ask very often how you're coping and you can call it off at any time but the sense of 'achievement' at having lasted the whole test (about an hour for me) was really worth it."

Mr JP: "As with my previous MRI scan it was noisy, but the sound deadening arrangements were adequate. I was able to wear my normal clothing less anything metallic. Keeping still was somewhat difficult as my phlegm problem kept causing me to partially cough, but apart from that there was no problem. It maybe easier to if the table has some slight raised sides as it is rather narrow. I experienced no claustrophobic problems I have occasionally worked in similar conditions, however the mirror arrangement provided some welcome contact with the outside world as well as the headphone information."

Mr RL: "I have taken part in several MRI scans and have had no problems. You need to wear loose clothing and make sure that you are really really comfortable because you are not supposed to move once the scan starts. The scan takes about an hour and is very noisy but you get ear plugs, head phones and a choice of radio stations – I chose Classic FM. I shut my eyes and try and doze throughout the scan and time passes quite quickly. However, do not fall asleep because the staff need you to respond to questions and instructions such as 'are you OK?, keep your eyes closed' etc."

Mr MH: "Not for me. Having had several before I knew what to expect. However, for first-timers it might be rather daunting, especially going into the tube and remaining quite still for a long period, particularly if one suffers from claustrophobia."

Q4 What was the lumbar puncture like? Did it hurt? Did you have any major side effects afterwards?

Mrs LB (healthy relative from an MND family linked to a genetic abnormality): "I was extremely nervous about the lumbar puncture simply because I have never been brave about needles! Dr Turner talked me through everything and Dr Proudfoot actually did the procedure. The local anaesthetic did sting but was over very quickly. I felt a bit of pushing, but had no tingling in my legs, no bruise on my back, and no headache! If I had to do this again I would prefer to be lying down on my side, rather than sat up."

Mrs GC (healthy volunteer): "The LP was also fine. The local anaesthetic in the skin stung slightly but I honestly didn't feel the actual procedure. I had to stay flat for about half an hour afterwards so either take a book or some music! I had plenty of water to drink for the rest of the day and didn't have a headache or any other side effects. There was a tiny bruise the next day but no discomfort at all."

Mrs SB: "Dr Turner is to be congratulated on his lumbar puncture expertise. I have had many lumbar punctures whilst my illness was being investigated and he goes to the top of the class in my opinion. He explained every stage of the process. It was no more painful than giving blood. I expected to have a headache afterwards but didn't. The site where the needle was inserted was a little sore the next day."

Mr SP: "I think I must have been an awkward patient, as it took several attempts to get me to give away any fluid. This meant that several doses of anaesthetic had to be administered. I can honestly say that, although the doctor informed me that it would sting, I found it to be only a slight discomfort with the first one and the others I hardly felt. The actual needle used for extracting the fluid I could feel only slightly until it was in the correct position, signified by strong pins and needles in my foot. I had no after-effects whatsoever. There is nothing to be worried about with this procedure as the staff take excellent care of you at all times, and are used to doing it."

Mrs ML (healthy volunteer): "After the MRI the lumbar puncture was easy! We were in a small private room in the ward and the Dr Turner was very reassuring and confidence inspiring. His expertise made the whole thing painless. It took about twenty minutes to 'drip' out the required amount of fluid and then you remain in the same position to rest for about an hour afterwards to prevent any 'post LP' headache. The insertion site was a bit sore the next day but no worse than after a normal blood donation and there were no major side effects at all."

Mr JP: "This was my first lumbar puncture and I approached it with a certain degree of apprehension. However it was all explained very well, the most uncomfortable part was injecting the local anaesthetic. The puncture site was a little sore and my back a little stiff for a couple of days afterwards but nothing major."

Mr MH: "The lumbar puncture can be a little uncomfortable initially. However with the local anaesthetic in place there was no pain attached to the procedure. The next day I felt a little light-headed but no headache, and the effect only lasted 24 hours."

Q5 Has it put you off going through it again every six months?

Mrs LB (healthy relative from an MND family linked to a genetic abnormality): I would be willing to do it all again if it might help the research effort.

Mrs GC (healthy volunteer): "As a healthy volunteer I am only required to come on one occasion."

Mrs SB: "Not in the slightest. I actually enjoyed the day!"

Mr SP: "After my first experience I can honestly say that it has in no way put me off coming back in 6 months and going through it all again."

Mrs ML (healthy volunteer): "As a healthy volunteer I am only required to come on one occasion."

Mr JP: "No I am quite happy to do the same procedure again."

Mr RL: "I am very happy to continue the study."

Mr MH: "I will willingly go through the research programme again in six months time. There has to be some cure found for this disease."

Q6 Would you recommend this study to others?

Mrs LB (healthy relative from an MND family linked to a genetic abnormality): I intend to ask as many people in my family and beyond to consider taking part in MND research.

Mrs GC (healthy volunteer): "Definitely. Anyone who either knows someone or works with patients with MND can understand the urgency of finding out more about the disease. The study is very organised and well explained with friendly, professional staff who were very thorough and patient. It was a pleasure to take part."

Mrs SB: "Most definitely, and if the research team need any more volunteers I would be happy to recruit some!"

Mr SP: "I would thoroughly recommend this study to all MND patients, and any healthy volunteers who can help too."

Mrs ML (healthy volunteer): "Yes - without hesitation. If you have been personally affected by MND then being able to help with any research is one way to compensate for the traumatic effect it has had on you. The medical team are very grateful for your donation (which costs you nothing at all) and at least you can feel that you have done something to help others who are so brave when living with MND and hopefully help find a way to eliminate this devastating disease eventually. I would recommend that you have somebody with you, for company, and to drive you home afterwards as it is a very tiring day. I am middle aged, fit and healthy but, although the whole medical team were very caring and thoughtful throughout, I was tired by the end of the process but very satisfied that I had 'done my bit'."

Mr JP: "Yes I would recommend other people to take part in this important study."

Mr RL: "Yes. One of the benefits, to me, of taking part is that you get your own Neurologist for several hours or more and Martin Turner is good company. So, before you get to the hospital, prepare whatever questions you might have about your condition, current research etc."

Mr MH: "I would definitely recommend this study to other people."

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