VLOG: USING MY SCOOTER FOR THE FIRST TIME IN PUBLIC | MS | NMO | Blood Test | Chronic Pain.
ฝัง
- เผยแพร่เมื่อ 11 ม.ค. 2023
- This is a bit of a long video (sorry), but if you're interested come with Teresa and I on one of our little adventures. The main point of the video is I'm using my Scooter for the first time, it's not easy coming to terms with worsening mobility issues (and pain) and having to try and accept the body just isn't working properly anymore. Being self conscious is a very big thing for me, but something I've got to work on and try to get over if I'm going to have any kind of independence again.
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🤒 CURRENT SYMPTOMS 🤒
Numbness, Burning, Tingling, Humming, Buzzing, Squeezing, Skin Sensitivity, Altered Sensation, Balance problems, Chest Pain, Muscle Weakness, Stiff Lower Back, Stiff legs, Stiff knees, Blurred Vision, Anxiety, Depression
👣MOBILITY ISSUES👣
Muscle Weakness, Spasticity, Clonus, Abnormal Gait, Tremors, Walking difficulties, Falling.
😷DIAGNOSIS HISTORY😷
▶︎ Transverse Myelitis (2008)
▶︎ Multiple Sclerosis (2013)
▶︎ Optic Neuritis (2019)
▶︎ Neuromyelitis Optica (spectrum disorder) NMOSD (2019)
💊FREQUENT MEDICATION💊
▶︎ Methylprednisolone (IV)
▶︎ Prednisolone (oral)
▶︎ Azathioprine (oral)
💉PROCEDURES💉
▶︎ Multiple MRI Scans
▶︎ Evoked Potentials (2013)
▶︎ Lumbar Puncture - Spinal Tap (Feb 2019)
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Hi Neil. You two are a lovely couple. The scooter does help you out quite a bit. Nice to have that freedom again to go about your day.
Thank you, yes.. it does however make me feel a quite a bit self conscious which is taking some getting used too.
You two are the cutest and best married team!! I just found your TH-cam videos and I’m praying for you!! 🙏🏼🙏🏼You looked very distinguished on your scooter!! Prayers for wellness and I’m happy to see the confidence in your eyes, as you get around on your scooter!! As my friend says to me, “use your cane, because with it, you are able!!” You both bring joy to your viewers…..the support and love and communication is beautiful!! God bless you both. You are both kind hearted souls. I love your smiles!!!🧡🧡
Theresa, prayers to you also.🙏🏼
Healings to both of you. Give yourself grace!! I do know what a challenge and how hard it is when MS progresses(27 years-ish….I know when it hits mobility, it makes simple tasks take forever to complete and I give myself grace.) My husband is my saving grace!!) I subscribed to your channel and thumbs up!!
Blessings to you also Tracey, thank you for such a kind message, and for subscribing. To be honest I’ve got another video that just needs editing and publishing. But I’m lacking the motivation to do it (thanks ms). It’s comments such as yours, and lots of others, that inspire me to keep the channel going. I will try and get the new video done soon. Prayers to you 🦋🙏
@@NeilBradleyMS No rush, no pressure, Neil. You two just recuperate and when you’re ready, on your timeline you can get a video out!!! I understand the fatigue and trying to get motivated . You are a motivated person, it’s just the MS, so take your time with editing.
I did chuckle at, “thanks MS” in your reply comment!!😂 I find myself saying, “This stupid MS…..get the heck out of my life, I tell it to go away, because I have no time for it and no room for it!!” I tell it to take a hike!!😂
Lovely to see you both.
I get people seeing you on a scooter,I got a rollator and was mortified that people saw me using it lol.its giving me so much more freedom.
Pain is horrific when people can't see it.
Take care
Thanks Michelle, so good to hear your rollator is giving you more freedom that you deserve. That’s the thing, when people can’t see the pain it’s so much more difficult for them to understand because you “look” fine. I rarely socialise now because of pain, simply because it’s no fun going out knowing it’s going to be exhausting. As I often say, these four walls are pretty much my prison now. Look after yourself.
You're an amazing couple. So inspiring. The love and strength you have is so wonderful. I pray for you both. God bless.
Dear Gwendolyn, you are such a kind soul, your lovely words touch our hearts. Thank you, may the Lord bless you also dear friend. 🙏
Hi Neil and Teresa! It is so great to see you! I love how you both find the joy in the little things.❤
Hello there Laura, how lovely to hear from you. You are certainly right there, it really is the little things in life that we get the most joy from, like going out for a little bit of breakfast, or spending a bit of time in the garden, listening to the birds is one of my favourite things. Material things quite literally don’t interest me. It Really is great to hear from you, take care and all the best. 💕🙏
Nice to see you both .it's lovely how you both look after each other x
Hello Dena, it’s nice to hear from you also and thank you, for your kind words. I hope everything is okay and you are well, take care and all the best. X
Hi Neil so lovely to see you both. Well done on ventering out in the scooter .......its all about confidence isn it , i was the same the first time i used my crutch , people are so lovely though and kind as they can see that you need help or space etc. Just think of all the freedom and independence it will give you for those rough days when walking is difficult. Im sorry to hear about Teresa's glaucoma diagnosis - but in a way its good that someone actually told you , this could have easily been missed. I think a seperate vlog just about Teresa is a biliant idea. Loved seeinng the Robin , i bet that brightens up your day !!
Take care , love Grace 🙂
Do you know something Grace, that little Robin really does brighten my day.. I really do appreciate the little things in life. Thank you for your kind words, yes it is a confidence thing. I’ve been using a crutch now for so long I’ve forgotten when I started using it, but I do recall feeling embarrassed and self conscious, like yourself. But like you say, people are lovely when they recognise there is a problem. Yes indeed, we are pleased Teresa’s diagnosis has now been recognised, and she’s being treated appropriately, we’ve got five sets of drops which are daily some of which are two hourly. It’s a bit of a regime but if it keeps her vision going then it can only be a good thing. You take care too, sending much love. 🙏
Hi Neil and Teresa. I was tested for MS 3 years ago as I had optic nuritis. This is how I found your channel as I was scared . After a MRI scan and lumbar puncture I was told I have not got it. for the last 2 years I have been taking prednisolone for uveitis in my eye (inflammation back of eye) and macular oedema (fluid in my eye) The steroids have played havoc with my body , however I can go blind . On a high dose of 60mg I found my mental health was being affected, at 1 point I didn't know where I was. I am now down to 5mg reduce slowly . It breaks my heart to see you like this. Take care both of you. xxxx
Hi Jacqueline, thank you for sharing your experience.. I’m sorry to hear your suffering such terrible symptoms with your vision, and I can totally understand how terrifying this is for you. I am however pleased to hear you don’t have an MS diagnosis. 60mg is a very high dose isn’t it, I agree you.. the highest I was on was 40mg started in 2019. I wasn’t meant to be on it for very long, but here I am still on it over three years later. I’m not on 40mg now though, after about a year it was reduced to 25mg and I’ve been on that ever since until recently when I took the decision to slowly reduce it and come off it completely (currently at the time of writing 15mg). I’m not sure if you’ve seen my previous video but I explain in detail why I’m doing it, which is mainly because of the visual side effects.
I can well understand how your mental health was being effect by taking such a high dose as it’s well known for doing this, do you feel you were just told to start taking it at that level and left to deal with it? I’m pleased to here you’re down to 5mg, hopefully your eyes are feeling much better now.
Thank you for your kind words and caring thoughts. Take care. Xxxx
Great to see you bruv and your wife ♥️ I’m so sorry for all the pain you are suffering. You just gotta soldier on and not give up 🦾
Good to hear from you Patrick, how are you doing? Yes I agree with you we’ve just got to soldier on, sometimes it’s very very difficult though and very challenging but I keep trying. I do hope all is well with yourself, take care my friend.
Really loved this video! You and Theresa are so sweet together! You have a lot of the same MS problems that I do, so it's really inspiring to me to watch your videos. I'm sorry to hear that you're in so much pain. 🙏🙏🙏 I loved seeing your Robin!
Hello Suki, lovely to hear from you. Yes I can totally understand how you can relate to me by watching my videos, it really helps knowing your not alone with all your problems doesn’t it, it REALLY helps me too. I hope you’re not suffering with the horrible MS symptoms too much, and that you’re managing fairly ok. Reggie the Robin is great isn’t he, I’m glad I included the footage now as I’ve had a lot of comments regarding him. You take care now. 🙏
The description section was very thorough ❤ thanks 👍
You’re so welcome. 😊
Just to say it's great to see you both back again, take care and looking forward to your next video x
Thanks for that Marcell, it’s lovely to hear from you also. I hope you are well, take care now. xx
Hi N&T from California. Thank you 4 showing Regue & for all this video. I come back & rewatch this from tone to time. I'm trying to adjust to a caregiver coming in. To have the person do housework is one thing. The wirst us their judgement of how I should do more. I hate it & it us unfair, distespectful, does not guve credit to all I do accomplush. I have ben working to stay calm about changes in my eyesight am niw legally blind. Thank God for black screen on my phone & YT!
Cataract surgery is probably in the future. Luckily my brother & doctors are happy with the progress I hsve made. I do not ned anyone to push me. I push myself too much. About 2 months ago I trained myself to drink 2 liters of fluids/day. Not easy when dealing with pain, nausea.
I have a group of people i send email to with my prayer requests. That has been helpful. I see Rheumatologist this week & Neuroligist in July.
Thank you so much for all the work you put into your videos. They are special & meaningful.You both are so very special. I wish you both & me & others, dud not have to suffer so much. I look forward to going home to heaven. Tks 4 reading alm this.
Bless you Shirley, I think you do a wonderful job at writing such a detailed message with such poor eye sight.
I’m so terribly sorry for everything you are going through. It just doesn’t seem fair does it. I do however think it’s lovely that you have your faith whereby you can send prayer requests.
I feel I’ve reached the end of what modern medicine can do for me. It does help me but only seems to take the edge off things. I’ve never really been a religious person, but I now find myself turning my thoughts more and more inward, often sending out a little prayers for help. Sadly my poor health and challenges continue with no let up.
When you said at the end of your message, you look forward to going to heaven. As do I !! I completely understand why you feel like this, because I too want this release.
I hope you don’t mind me saying, but I find one thing that helps me tremendously is TH-cam videos about Near Death Experiences (NDE), this is where people have died and visited heaven just prior to being resuscitated. They then come back and tell their amazing experience on video. These accounts are truly phenomenal, but more importantly they leave me feeling like the suffering in this life won’t have been for nothing. Because there is something truly wonderful waiting for us, in a body no longer wracked with pain and suffering. I do recommend you look these videos up. Blessings to you. Take care. 🦋
Hi Neil and Teresa. It is good to see you both. Hope you had a happy Christmas and new year.
Hello Patty, it’s very nice to hear from you. Yes we did thank you, have a good Christmas And New Year, I hope you did too. All the best, take care. Neil.
Neil! It’s so good to see you and Teresa! How wonderful to hear that Laura and I were some of your fans to inspire you to make this video! We are truly blessed to have met you both! Laura says hello btw! We both love watching your videos and chatting with the two of you! Stay strong Neil. Your fans love you! We will be keeping touch my good friend!
Hi there Paolo and Laura, Teresa and I are super happy that you enjoyed watching the video and we thought it would be nice to give you both a mention. “Hi there” Laura, hope you are ok. As always it’s great to hear from you Paulo, I am currently sat in my man cave otherwise known as my shed at the bottom of the garden answering you on my iPad. I’m trying to keep active by moving around doing a bit in the garden but as you can well imagine for me it’s quite difficult but I keep trying each and every day. To be quite honest I’m not feeling too bad today, but I suppose only time will tell. We’ve not long had a small snow shower, but now the Sun has come out and we have lovely blue skies so the weather simply can’t make its mind up. Teresa and I have a small joke between us and that is, if we wanted to rain then send Neil out into the garden to do some small chores. LOL anyway I’m actually speaking this message into my iPad and it is interpreting what I am saying fairly well So hopefully there are no typos, catch up with you both soon. Take care now and all the best-Neil and Teresa.
HEY Neil, good to hear from you!
I know how you may feel. Myself, I feel embarrassed, ashamed and self conscious about my mobility. I know I needn't but it's
a pride thing. But you two just carry on and keep us informed. Love you brother.
Hi Lee. It’s really difficult dealing with the feelings and emotions that come with having to use an aid isn’t it. I still don’t want to admit defeat but the way I see it is I’m conserving energy when I’ve got a bit of distance to cover. I still don’t listen to myself though 🤦♂️There is something inside me which insists on continuing to walk and struggle, I suppose it’s because walking is something I’ve done all my life until recently (as I’m sure is the case with yourself). I’m currently outside writing this message to you on my iPad sat in my shed, as I’m just trying to do a little bit in the garden. I get so dam frustrated though not be able to take a single step without holding on or a using walking stick. I feel so let down by my body, and I get so angry with myself. Much love you my friend. 🙏
@@NeilBradleyMS Thank you for the reply. I'm using a cane for short distances at the moment. Yep, you pretty much said it all.
Take care you two.
Hi Neil
Happy New Year! I loved seeing you both. You’re so inspiring . I have a scooter just like yours and I completely understand your feelings. After using it a few times I got over the embarrassment . People do treat people in disability scooters kindly.
I’m sending love and prayers to the both of you.
Karen Garruto❤
Thank you Karen, your kind words, love and prayers are very much gratefully received. Oh wow, so we have the same scooter.. that’s pretty cool 😎I’ve only been out in public on my scooter the once (in the video) but I did find people were so kind and considerate. I’ve recently had another blood test and I managed to go on foot, but the last few days my mobility has really plummeted so if nothing changes by this time next month I’ll definitely be using it again.
Sending much love and prayer to you also Karen,
Take care - Neil. xx
Oh Neil! And Tree 🌲! I just got here! That was lovely to see you two for such a long video. Sorry the pain, stiffness and mobility are a problem. I’m going to say one thing. Never be apologetic about using a scooter/buggy/wheelchair! I might be 68 now but I was younger than you when I started using an electric buggy from time to time. I would shop and be in agony at the end and then for days afterwards. I had an op. Ladies thing ;) so wasn’t to walk too much, lift etc. I was going stir crazy in the house so David said we’d go to the supermarket as long as I used their wheelchair and he pushed … Well he did mostly but I also pushed myself a bit too. When we got home..I suddenly realised I wasn’t in agony. Then or for days! It took me some courage to go shopping myself and ASK to use their buggy’s. Tesco, IKEA, shopping malls, you name it! I was suddenly‘normal’. I could drive to a mall…and Christmas or birthday shop without Mr Husband so he didn’t know what gifts I’d bought! I was FREE! I joined Shopmobility that had branches all over and simply booked a buggy! Even for Prince’s Street in Edinburgh! That…was an experience. I found out that a certain exceptionally posh store had lifts - but I couldn’t get out on the next floor due to a huge thingy with men’s shirts all over it just 3ft from the door of the lift! 😱 They we’re most apologetic and helped me. I’ve never been embarrassed by using a buggy. Even in malls where little children stare at me.. and I could see the wheels turning in their heads.. “hmm what’s that lady doing in a pram/buggy?” They were interested. Parents sometimes were very British and said ‘Don’t stare!’ I always replied I didn’t mind and explained that I too couldn’t walk far and needed help! My grandchildren used to laugh if I scooted off ahead, and ran after me. Own it Neil! On days you can walk, and are sure you’re safe…walk. But if you have a small doubt or a lot of pain ..use your buggy - or the shops own ones! Much love to you both ❤️❤️. Oh I loved Reginald the robin! I also noticed?Molly and she is similar to our waif!
Thank you Susan, for sharing your experiences over the years and very wise words. I have come to realise that using the scooter does help me conserve energy. Just like you, I used to force myself to go round the shops because it was an experience I always used to enjoy, and it used to completely and utterly and totally wipe me out. I’d literally get back to the car and felt like I could collapse as I was completely out of energy and strength. I know that going round the hospital I’m not going to bump into anybody I know, but if I was to go round Tesco there is high possibility I’ll bump into a family member or friends and I’m not sure I’m ready for that yet while seated in a scooter, it’s the Neil thing. no doubt in time I will get over this anxiety. I’ll get there eventually, I think my hand will ultimately be force the way I’m spiralling downwards.
Glad you liked my new good buddy, Reggie the Robin.
Take care 💕
@@NeilBradleyMS thanks Neil..and Reg! Much love ❤️
The little bird was so cute 😍
Super happy you liked the footage of Reggie the Robin, I’m soo pleased I included it now as I’ve had a lot of positive feedback about him. Take care.
Excellent video. You did great Neil, I wouldn't have recognised you 😉 Teresa is so lovely and supportive, my husband gives me confidence, I'm a very nervous (wheelchair) driver. So sorry to hear about Teresa's eye problems, never rains etc. I sometimes think I must have really angered the Gods lol. Lots of love to you both xxxxxxxx. Reginald is just gorgeous.
Thanks Dawn, I too think I must have angered the Gods ha ha😆 Sending much love. I hope your chair has arrived by now. xxx
Im having spme medical tests done now. Thought of you & T & this video.
I am sad for all u both have been throug. Really appreciate u both.
Hi Shirley, and thank you for your kind words. I’m please to hear that you’re having some tests, hopefully they will be able to get you a diagnosis. Keep us posted.
Hope all is well on your side, thanks for sharing.
Thank you Maria, we’re not too bad. I hope you also are doing well. Best to you - Neil.
I can definitely relate to needing confidence to go out with a mobility aid. I have recently purchased a wheelchair myself, and even though I realise how much it helps me around the house, I haven't mustered up the courage yet to take it outside.
I can also relate to the urge to go fast :D. (I mightve immediately learned to do a wheelie on my chair myself ;) ).
Really enjoyed this video! Thank you!
Hey there, I’m super happy you enjoyed the video.. thanks for that. Yes, confidence is a big thing if you’re anything like me and had the use of your legs for the majority of your life. Readjusting to mobility aids such as a wheel chair or scooter is massive! I’d definitely practice for that wheelie 😎
Hey Neil, just seen your post
I start my day with pain meds too
both my husband and do. We both have chronic pain from autoimmune diseases. I'm sorry it's that way Neil but I can remember the day I had none 😬🥴 It's so good to hear you both laughing and teasing each other 🙌😊 Those scooters are priceless and I'm jealous ha ha
I've started Prednisone recently and it is helping my Parkinson's in my legs. I'm no longer allowed to drive but I see you are doing great 😃👍
Hello Tory, yes indeed those were the days weren’t today! When we would get up in the morning and didn’t have to reach for the painkillers even before breakfast. As a rule round about 5 am it’s as if somebody flicks a switch and my body turns on the pain, I then spend the next half to an hour to an hour trying to go back to sleep and then eventually just give up and get up. Yes, the scooter is very good and I’m slowly becoming more confident with it so thank you. I’m really pleased to hear the prednisolone is helping you with your Parkinson‘s, that’s really excellent news. Lovely to hear from you, take care and all the best. 🙏👍
Hi Neil, good to see you both.
I hope you get some relief soon from the pain.
Take care of each other.
💕
Thank you so much, and yes we will. ❤️🙏
Neil!!. Lovely to see you. Know what you mean about being self conscious on the scooter. Im like that in the wheelchair. You do get used to it though. Give it a name....makes it feel more part of you😘
Hi Julie, yes I found I got used to it the more I used it. Naming it sounds like a good idea, I like that .. I'll have to have a think. Thanks. 👍🙏
Reggie is a delight. More, Reggie, please......
Isn't he just beautiful .. he did in fact make an appearance yesterday which I filmed on my phone, albeit for about 20 seconds.
Hi Neil, I really enjoyed watching this video and love little Regie at the end. Perhaps not relevant, but I thought you did a really good job editing your video together and it is really nice to see how you have got even better at it progressively. I think it was about a week ago when I was explaining to my partner, Kerry, how I watch all your and Teresa's videos because I personally identify, but also care and simply want to check on how you are both doing. I think you are doing remarkably, no matter the random rubbish life throws, and I hope they get your diagnosis right, whether NMO or MS. You are an example and I only hope that, whatever happens with my MS in the coming years, I can manage it with the same grace and humourthat you do with Teresa. I don't use a scooter, but I know that feeling, being sort of self-conscious through foot drop and banging into things. You worry about what everyone around might think when you want to try your best to keep up appearances like normal. I sincerely hope that both you and the good Teresa had lovely festivities and celebrations for the New Year. I also look forward to hearing from you both over this year. Thank you for all the work you put into your channel. I learn a lot from the example you set.
Hi Steve, thanks for watching the video all the way through to the end, hat is off to you 😉.. and thank you for the compliment with regard to the video editing, I really appreciate that. The editing process takes so long, and on this one believe it or not there were 48 clips to piece together. I enjoy the editing process though, it’s turned into somewhat of a small hobby.
Ahh that’s really nice of you, that you take the time to watch all of our videos, I’m really touched by that. There are a fair few as well now aren’t there, going back to the first one I did if memory serves in 2016.
You might be interested to know, I’m currently responding to your message on my iPad sitting in my shed lol! As bad as my mobility is, I really try hard to continually keep moving, working the muscles etc as I believe this will help in the long run. So I’m doing a bit in the garden, there’s always something to do.
Yes I understand what you are saying, I only use my scooter when I’m unable to do the walk or it’s going to use up too much of my energy. Sometimes to just maintain standing without my back muscles collapsing takes so much energy, my heart rate goes into the 120+ region (my watch monitors me, pretty cool), just standing! So it’s there as a tool, but I still prefer to walk IF I can.
Yes, the self conscious thing, we become super aware of our surrounds don’t we, and the people around us because we don’t want to wobble into them or cause some kind of embarrassing accident. I totally get you.
I’m really touched by your kind words, thank you.
I hope you too had a good Christmas and new year, it’s great to hear from you.
Best to you - Neil.
I MISSED THIS!! HOW DID I MISS IT? I've been watching for you and went and missed you. The disguise is dashing. I'd never have known it was you. I hear you on the pain. I wish I didn't but I hear you! Teresa Hugs and Hugs about your eyes. Glaucoma is treatable. So that is good news. You two are always on my mind. love, Jacquie
Hi Jacquie, as always lovely to hear from you .. and just HOW did you miss this video? LOL. Glad you like to disguise ha ha.
Teresa and I have recently had Covid, Teresa is quite a lot better, but I'm into my 5th week. I've been massively poorly with it. A couple of days after the Covid started my Feet/Ankles and lower legs swelled up with fluid, they're still like it some 5 weeks later. I'm very worried. I'm going for an ECG and a blood test this coming week. I never thought I'd have to deal with worse pain, but I'm now having to. In a morning I just sit on the side of the bed not knowing which way to turn, the pain is so great it stops me from sleeping, I'm up and down all night and I just don't know what to do with myself. In addition literally every joint hurts, as if I've got arthritis but I haven't, I can't even turn over in bed, it's just ridiculous.
Yes, we are treating Teresa's Glaucoma with a set of 5 different eye drops daily, every two hours. It's quite tough going but if it enables her to maintain her vision for as long as possible it's a small price to pay.
Take care, and sending much love - Neil & Teresa. xx
@@NeilBradleyMS Hugs to you both! I hope you can shake the Covid off. We have bodies that simply don't understand. Attack the ILLNESS NOT YOURSELF. Silly immune system. The eye guy suspects glaucoma with me but the numbers jump and drop. Love and warm thoughts for you both. Hang in there. All we can do is try our best. All my love, Jacquie
Hi Neil - love you and Theresa's videos and have been following your adventures for a while! So understand the self consciousness of using mobility aids. Well done you did brilliantly and Theresa was wonderfully supportive. 😊
Thank you so much David, your comment just came through on my iPad whilst I was watching a TH-cam video sat in my shed, some would call it a man cave LOL. I appreciate your kind words. I’m just outside trying to do a little bit of gardening but as usual struggling a lot because simply taking a step if there is nothing to hold on to then I wobble and fall over. Life is not easy that is for sure. Yes indeed, Teresa is absolutely an Angel I really don’t know what I would do without her support, she is my world. I am a very lucky man.
I am super happy to hear that you’ve been watching my videos for quite some time now, I see that you say you understand the self-consciousness thing of using mobility aids. I’d be interested to know what aid you have to use yourself, do you have a scooter or a chair or something similar?
All the best my friend and thank you for your message. Neil.
Hi Neil - thanks for your response. It's Liz by the way - forgot I was signed in on my hubby's account! I use a rollator when on my own but very self conscious and always feel in the way of everyone!! Have yet to try a scooter so interested to see how you managed - you made me feel I could give it a go. Take care both of you.
@@davidwhittle4840 Hi Liz, I am so happy to hear you say that. I'm so pleased that by sharing my experience in the video, gave you the confidence to give your Rollator a go, absolutely fantastic!!
I feel the same way, I always feel like I'm getting in the way of everybody because I'm so slow. The majority of people are so lovely and are very empathic, but you do get the odd one or two that tut and that can be enough to knock my confidence. Maybe this is also the case for you.
The thing with the scooter is, it does all the hard work! A rollater is good when you're still able to walk and you need it for balance or a rest etc and that is great. With a scooter, you just pull a button forwards/backwards etc, it's so easy. Obviously yes there is a element of actually driving it, but it honestly doesn't take very long to get used to. In fact you've just given me an idea, and that is to do another video, more in depth about my scooter and how it works etc. I'm going to give that some serious thought.
Take care.
Lovely to see you both … your both such lovely genuine people .. loved the video ❤x
Hi there Sallie, thank you so much for your kind words I really appreciate them. Super happy you loved the video, I hope all is well with yourself, take care all the best - Neil. 💕
Hi both of you how are things ❤xx
Hi Sallie, we’re not too bad thank you for asking. I hope you are doing well? 💕
Neil, this video came at such a good time for me! My electric wheelchair (a proper one, not the attachment I had) came yesterday & im facing the scary task of trying it outside for the first time soon & im so scared, so I’m looking forward to seeing how it goes fit you with your mobility scooter- I do know they can be hard to navigate so I really hope it went well for you! I’m proud of you for taking this step forward 😊
Hello Georgina, well how about that! I’m so happy to hear that you’ve now taken delivery of your new electric wheelchair. I can however completely understand the fear you will be feeling leading up to giving it a test drive. I completely bottled it the first time I was going to try my scooter, but I persevered and managed to break through the feelings of anxiety. Thank you by the way for your kind words and encouragement, they’re very much needed and appreciated.
I would encourage you to film with your phone on your first trip out, EVEN if you decide not to turn the footage into a video for your channel. Personally, if you do decide to share the experience I very much look forward to seeing it, but I am in no way pressuring you even if it may seem like I am.
I have to say, using my scooter was very good because very soon in doing so I realised I was conserving energy, and from what I know about your health, this will be massively beneficial for you also.
I’m currently writing you this message on my iPad, sat in my shed 😎 I’m continually trying to keep up my strength, by doing little bits in the garden, but I’m getting so despondent as I’m continually feeling myself going down that slippery slope. I can’t even take a single step without wobbling and almost falling over, my vision is also getting worse by what seems to be a daily basis. As a result that dark cloud of depression (which I know you’re familiar with) is becoming a daily battle to fight back.
I wish your very difficult situation at home would somehow resolve itself, and very soon. Know that both mine and Teresa’s thoughts are very much with you.
Take care 🙏😊
@@NeilBradleyMS Hi Neil! Thought I’d reply to two of your comments at once, so here goes!
Firstly- you are an excellent driver, I shouldn’t have been worried about it taking a few days for you to get a hang of the scooter, you looked like a pro as soon as you got on it!
That’s a really good idea about filming my first outing when I have the courage! How did you film while on the scooter? Did you just hold the phone with your non dominant hand or did you put it somewhere or use something to hold it up? (Sorry been a while since I watched this video!)
That’s great news about the scooter helping so much!
& I’m so sorry to hear about your vision & mobility, that’s seriously tough, but where there’s a will, there’s a way, and I know you’ll find a way through this! Have you tried a rollator? I’m not sure if it would be better or worse than crutches, but wondered if it could help at home or in the garden (it may not, just was an idea)
Thanks for your kind thoughts 😊
& with the blanket on the lap in a mobility aid- I completely understand your hesitation, it’s almost feels like it’s going to make us look ‘more disabled’ or ‘older’ doesn’t it, when all it is is a blanket 😂 but I know it can have those connotations sometimes. I’m considering getting some thermals to go under trousers instead, could that work for you, do you think? I hope in time we can get past the connotations & just use a blanket though, as it just a blanket after all 😊
Hi there Georgina, as always lovely to hear from you. I actually read your message about 3 am this morning and it said you only posted it something like 45 minutes earlier, so I’m guessing you were up in the early hours with the usual noisy neighbours perhaps. I’m really sorry you have this to deal with on top of all your health conditions as well.
Thank you also for your kind words and compliments about my scooter driving abilities LOL, I’ve not actually used my scooter since filming the video on that particular day. However in answer to your question, I just had my mobile phone in my hand on the front facing camera so I could try and fit both myself and my wife in whilst using the other hand to drive the scooter. It was kind of difficult because there was a lot of people around as well but somehow I managed it. And of course, with the power of editing we can always cut out the bad bits can’t we, so I don’t really worry too much about capturing video bloopers, I suppose sometimes these could be funny. Yes, I’m really looking forward to hearing about your new electric wheelchair but I do appreciate how difficult it will be going out in it for the first time especially considering your health conditions and also the self-conscious thing.
I’ve never really used a Rollator before, and to be absolutely honest with you I’m not really keen. Once again it’s the self-conscious thing so I would prefer to stick with a walking stick or a crutch. I’ve actually been pushing myself really hard with my own devised physical therapy exercises and I don’t like to say anything too soon but I am starting to feel a little bit stronger, this combined with reducing my prednisolone steroid as well, so yes we’ll have to see how that goes. Something is happening that is for sure, only time will tell.
Well it’s a coincidence that you should mention thermals to keep warm because that’s exactly what Teresa says as well, it’s just me that isn’t really that keen, but common sense tells me I should. I think with time I would probably go with a blanket, having said that I’m kind of looking forward to spring and the warmer weather coming as well especially as I’m sat in my shed speaking this message into my iPad at the moment (trying to do a bit in the garden again) and I’m just looking at my watch and it says it’s 4° outside, and it’s about the same in here as well so pretty damn cold.
Well, I better go and try and do a bit more, as always it’s great to hear from you and I’m sorry if I get a bit carried away with the length of the message, it’s because I just speak them into the iPad (you should give it a try) now instead of type. It’s not perfect but I find it a lot faster than typing messages and my vision isn’t always great these days. I always try and keep up-to-date with your videos and often comment but please don’t worry about always responding as I do know how difficult and time-consuming this can be. You take care Georgina. All the best-Neil. 👍😊
Hi Neil...I hate this wicked evil disease. ...I feel your pain....thinking of you both xx
Thanks Pauline xx
Reggie is too cute 😊 what a little brave little bird
I absolutely love Reggie, I look forward to seeing him every single day. Although just recently he’s becoming quite elusive and not putting in an appearance, today has been one of those days, hopefully he is okay.
So good to see you and your speedy machine. I am so happy you still drive. I am having trouble with my right leg but I must drive because my husband had bypass surgery and he is not allowed to drive yet. We are having our groceries delivered so that helps. We have moved from Seattle to Tulsa,Oklahoma. I do not have a new neurologist yet. I am not on any MS medications at this time. I entered a drug rehab program on the advise of my daughter-in-law who is a nurse. I was taken off several medications and have only needed to get back on one prescription at this time. I actually feel better overall and my mind is clearer.
Thank you for posting this video. I enjoyed seeing you and Teresa. I recognized you even with your disguise. I will pray for your pain and your walking stability. Prayers for Teresa too. She is an amazing lady. Blessings, Kerri Arceo
Thank you for your Prayers Kerri, they are gratefully received. 🙏 So you managed to recognise me despite my disguise then lol, I’ll have to try and improve on it ha ha. Medication really does fog our minds doesn’t it, I accept that it also has a good side which helps but often the side effects are intolerable. I’m in the process of weening off my steroid medication (prednisolone) because of the horrible visual side effects. I’m paying for it though, with increased pain and mobility issues now but I feel I don’t have a choice. I’m glad you’ve been able to reduce yours without too much of a problem. Take care.
@@NeilBradleyMS Thank you Neil, The medications were for a strong pain in my right side that would send me to the emergency room for morphine at times. Every once in a while I had 3 days of IV steroids. I took Lyrica and other drugs on a daily basis. I also experienced stress and anxiety and took medication for this as well. I was seeing a psychiatrist who treated MS patients. When we moved to Oklahoma to be near my husband's son and his family, our daughter-in-law, who is a nurse, took notice of all the drugs. She had me admitted to a rehabilitation facility. I was able to discontinue the meds and realized most of my stress and anxiety were gone due to our new family connections and getting rid of some unhealthy relationships. I am back on Cymbalta for anxiety since my husband's surgery. I have noticed some pain ony right side coming back. I will see my new doctor on the 26th. I feel MS is somewhat active again. I will ask to be referred to a neurologist. Having MS is very unpredictable as you know. I am trying not to imagine the future and take each day as it comes.
Thank you for taking the time to read about what I am experiencing tremendous. You and your 🎂🎂 wife have been an encouragement for me. Blessings, Kerri
Hello Kerri, thank you so much for sharing that information it’s very interesting to read what is going on with you. Quite some time ago I also used to take Lyrica (aka Pregabalin) and I’ve also had the IV steroids periodically over three consecutive days, they used to do me the power of good a number of years ago, but unfortunately now they don’t have the same effect on me. I do hope your visit to the new doctor goes well on the 26th of this month. The future is also something that really scares me, I do the same and take every day as it comes, well to be honest sometimes it’s every hour like at the moment. Not only now have I got mobility and pain issues very significantly, but my vision is also being very impaired by medication. I find that trying to distract myself with something I enjoy really does help take my mind off my health issues, at the moment it’s just trying to do something in the garden but the problem is it soon becomes very apparent how very difficult just taking a single step is. I take morphine every day and I don’t like doing it I tried to stop the pain increases so dramatically I have to continue taking it. I wish I didn’t have to. Such is life. I’m super happy that my channel and videos have been an encouragement to you, that really pleases me and encourages me when I hear comments like this to do more videos and continue doing what I do, so thank you very much for that. Take care Kerri, and all the best.
@@NeilBradleyMS Thank you.
So pleased to see you both again so soon!
Well...my 2 cents worth:) As biological animals we have deep programming to hide our vulnerabilities, our survival depended on it. We grew up in a culture where disablement of any sort was frowned upon and all with less than full health were mostly subject to negative judgement and a diminishment of our worth. No wonder we have issues with mobility aids.
How I see it now it when I am in a wheelchair or my scooter is I am part of changing that old pattern. I feel at ease and don't shrink from being seen anymore. I feel so blinking greatful that I can get out still, I have a smile on my face.( I have had several interactions with kids who are interested in how fast I can go, whether I can do wheelies:)
Whether we like it or not we are ambassadors for all with disability so our sense of self worth being retained matters.
On the other hand Neil, I fully understand you being uncomfortable. I think it is even harder being a male to relax while feeling under scrutiny.
I think that over time you will get more used to it and you will find people will just take you as you are, sitting or on your feet and you will come to own that space. It is all a steep learning curve but we are nothing if not an adaptive species.
That is unsettling news about Teresa's eyes. My Rod had 2 corneal grafts with no problems. Loved seeing wee Reggie of course:)
Sending you both my love and empathy as always xxx
Thank you Willow, as always I really a enjoy reading and appreciate your much valued input. Of course, I agree with every word and with time I’m confident also it will become easier. I suppose my biggest worry at the moment is the visual side effects I’m experiencing (floaters and blurred vision) from the Prednisolone. I almost sure I’m seeing more floaters (which will be permanent) every few days, it’s causing a lot of anxiety, and what with my mobility declining as well it’s becoming more and more difficult to fend off that dark cloud of depression.
Thanks for letting me know about Rod having the Cornea grafts, that’s very reassuring that he had no problem. I’ll make sure I’ll tell Teresa as it’s something we’re both very worried about.
All the best,
Much love ,
Neil.
Its wonderful how much the scooter gives you some independence
Hello Dilliya, yes I completely agree with you it is wonderful just to be able to actually move my body forwards at some reasonable pace, albeit using wheels. I almost feel normal! And to be honest I think I’m getting over the self-conscious thing, and I’m almost looking forward to the next time I use the scooter. It really does help with such positive and constructive comments I’m getting back from people on the channel such as yourself. So thank you very much for that. I hope all is well with yourself. Take care.
thanks for the shout out. drives me crazy that we are running similar paths in similar time. Dana is correct.
Peace, one day at a time!
Tom and Dana O'Brien
Hey Tom, I’m currently sat in my shed answering your comment on my iPad. I’ve been trying to do a bit of something in the garden, being in the house for hours on end drives me mad. I’ll be honest with you though, it’s not easy.. I can’t even take a step without loosing my balance and sometimes my stick just gets in the way. Frustrated to destruction, I’m sure you know how this feels.
Peace my friend.
Hi Neil 👋👋. From Arizona.
Hey there Christine, I hope you are doing ok 👍
I feel for you having this horrific condition but imagine having to deal with it without that lovely lady by your side!
I have tried to imagine, several times in fact. It would be horrifying. I sure am blessed to have Teresa with me. Xx🙏
Lovely to see you both as always ..Catching up with all I follow .. I fractured my fibula early February.Slipped in the garden, icy that morning.fractured...in 4 places ..lower(ankle) in two pieces has been the worst..I escaped having surgery....been a long painful journey..I was getting about the house and hospital appointments on a knee scooter 😅I'm pretty good at it now 😂..Been weight bearing,exercising..Not very good with crutches ( previous fractures to both wrists and no balance) The neurological tremors also hinder 😊But today I put the walking boot back on and grabbed them crutches..I managed walking around the front room.. Fingers crossed I can use them for my next orthopaedic appointment this week ..I love my Robins they visit my fairy garden and bathe in the waterfall.. I do hope all goes well Theresa.. you look a lot brighter Neil ..wishing you both well ..Been a lovely sunny day today hasn't it ..I do miss being in the garden..Hopefully I'll be back out there soon 🍃🌸🌿🍃🌸🌿🍃🌸🌿🍃🌿🌸
Hi there, oh my goodness I'm sorry to hear that you've been in the wars. It's so easy to slip though isn't it.. I remember on New Years Day 2021 I slipped on ice and went flying. I was luckier than you though because I didn't break anything, I did hurt myself though. Lets hope you do make it to your next appointment using your crutches. Your Robins sound delightful, aren't they just the most beautiful birds. I also miss being in the garden, although the lovely sunshine always drawers me outside, but I get frustrated at myself with only being able to do very little. We're starting to see double digits here in the UK so we will definitely be spending more time outside in the coming weeks. Take care now, and I hope your Ankle heals quickly. xx
@Neil Bradley MS Thankyou so much...I'm sure we will all be out in the sunshine soon 🌞🌻🌞
Hey Neil, I won't bother you by asking how are you, I think I know the answer unfortunately... Just wanted to send you and Teresa a big hug! Whenever you'll feel like updating us we'll be here for you. Ciao!
Thank you so much, that’s really kind of you. Sending a 🤗 right back there to you. Take care.
Great video guys really enjoyed Wow never drove on the wrong side of the road before I'm from the US My friend just got a scooter he loves it Praying for us all in Jesus name 🙏
Hey there, thank you very much for your prayers they are gratefully received 🙏 so, your friend has just got a scooter as well then so no doubt they may well be feeling a little self-conscious and anxious as well. I wish your friend luck, and hope they able to use the scooter confidently.
As for wrong side of the road? Not sure what you’re talking about LOL it’s those people over in the USA that drive on the wrong side of the road not here in the UK ha ha.
It’s nice to hear from you, and you take care and please give my best to your friend with the scooter.
Regards, Neil.
Hi Neil. It is easy for me to say but do not be worried about others reactions! I am relatively young at 47 and my neighbours often judge me! Why is he on a scooter! He can walk he doesnt need a scooter etc etc - and yes I can walk but it hurts due to sciatica from my spine. People will always say stuff mate. If using a scooter allows you and the Mrs to go out then use it. Do not stay stuck in at home due to jealous people!
Thank you very much for your kind words of encouragement. Since doing this video, I've used my scooter quite a bit more just when visiting the hospital, and I have become a little more settled with it.
Yes, people can be so judgmental can't they.. especially if you have an invisible illness such as the sciatica you have. I know from experience how intensely debilitating this can be. I often say to my wife, a person doesn't know how lucky they are just to be able to walk properly and without pain.
I'm pleased for you, that you've got yourself a good set of wheels too. In my experience with sciatica (when I was in my 20's, along time ago now) is it did eventually get better, but it took a very long time, probably up to 2 years. I do hope you recover from the sciatica in time.
Once again, thank you for your kind message.
All the best,
Neil.
@@NeilBradleyMS thanks for your reply neil. sciatica is horrible. i have had it since age 18 a building site injury. had an op it wont get better i am now 47 so almost 30 years with it! anyway i just wanted to say what a wonderful wife you have - i didnt mention it on my message but you have a diamond there mate! she looks tough tho i wouldnt want to step out of line with her! remember happy wife=easy life! Just agree with her! LOL. look forward to seeing some more of your trips out. PS - just passed my driving test so i have a big scooter for home but am now looking for a light/self folding/easy folding car boot scooter. - people may have their health but they do not have happy marriages and supporting partners, they probably jealous of you mate!
Hey there, thank you so much for your kind words. Yes, Teresa is my rock, she’s literally an Angel. We’ve been best friends since 1990. When we met, something ‘clicked’ you know how it does with some people. Congrats on passing your driving test. I’ve got a scooter that disassembles, but I’ll be honest it’s not as easy as they make it look in the sales adverts. For starters, the parts are heavy and difficult to lift into the boot. It’s a two person job. Good luck on finding a good scooter. I’ve really enjoyed our chat over the last few days.
I’m meant to also just comment about you having sciatica. Your story is very interesting, but I’m so terribly sorry to hear how it came about what with your accident at a young age. I know how agonising and disabling it can be. I do hope you’re managing the pain ok.
Hi Neil, just want to say that I've recently found you, and have watched quite a few of your videos. Thank you for sharing your story. I really enjoy hearing from Tree, too, and how the 2 of you manage your health problems. It's been awhile since you posted a video, so I hope you both are doing ok and coping ok. I see you have commented on other's comments recently, so I am relieved to see you are doing relatively well and enjoying your scooter. I also want to mention whether you are taking things to build your immunity. We take every day, zinc, sulphur crystals, 5,000 IU D3, and fulvic acid for the last 5 years and have personal stories about this but for privacy reasons don't want to mention here. I was hoping to find an email address to write you directly, but looked through your information and couldn't find anything. The fulvic acid is a high grade quality Shilijit, in a resin form. Again, both of us have personal stories I would love to share with you. Again, thanks for sharing your story and I have (enjoyed) your videos. Thank you. Take care. Bless you both.
Hey there, and thanks for your lovely message. Over the years I’ve tried all sorts of different supplements, strategies, diets and to be honest I’m still no further forward. That isn’t to say I really appreciate your thoughts because I do, but I’ve just lost faith to be honest. I continue to go in a downwards direction, occasionally I’ll feel like I’m making progress like in Jan this year when I was taking myself off prednisolone. Then I got Covid in mid Feb, and honestly I’m still recovering from it (hence no videos). I gave Teresa a bit of a shock as she admitted at a couple of points she was afraid she was going to loose me!! Eek it was pretty horrendous for a while and I lost ALL my mobility, the virus has robbed me of more mobility and I’m in more pain.
Thanks for your interest in our channel and videos. Yes it’s been a while, but only this last week or so we’ve been thinking about doing another video, so watch this space.
You can reach me at neil.bradley@hotmail.com however I always tell people to let me know on here if you send an email, because like everybody, I’m swamped with spam and junk, and the legit emails tend to get lost amongst it all.
Best to you - Neil.
Dear Neil,
I am following you on TH-cam for years and I just want to send you my best wishes. I hope you and your wife are doing well.
Greetings
Greetings to you also, and thank you for you kind thoughts. We aren't doing too badly thank you very much. It is my hope also, that you are doing well too. All the best - Neil & Teresa.
Also, please say hi to Reginald from the Netherlands ❤️
Indeed I will 🦉🦆
Hey Neil! I have been thinking of you and Teresa recently. I hope things are going ok.
Hey there, thanks for the check-in .. I really appreciate it. We're hanging in there, in Feb Teresa and I both caught covid. Teresa was poorly but fought it off better and quicker than I did. I have honestly never been so ill. Just prior to catching Covid I was doing really well, I'd been reducing my Prednisolone, doing lots of Pyhsio every day and was actually feeling better and more mobile than I had in a long time. Then Covid robbed me of it all though. It's taken months to get better. Teresa and I have actually done a video, I've just got to get my finger out, edit it up and publish it. I'm lacking motivation in a big way, but I'm going to do some work on it today. Take care and all the best.
@@NeilBradleyMS thanks for the update. So sorry about the Covid and set backs it caused. Glad that overall you were free better! I hope you can get back to feeling better and more mobile soon!
Hi N & T. Don't know if us your most recent. I will have Brain Lumbar MRI under general anesthesia in a few weeks. I had blood test for Huntingtons Disease a few days ago. The Neuroligist did not say anything about MS. I have a caregiver through an agency. She cones 3 days/ wk & helpful. So maybe I will have a solid diagnosis within 2 months. If it us HD, I will ask for Palliative care & Hospice as soon as possible. I have a brother who's a bitcwhen he can. Close friends have moved out of my area. I'm trying to coordinate manage everything or most of it alone. I may gave to go Assusted Luving . I'm scared yet peaceful yet or just doing stuff a little at a time. I hope you both are keeping cool during hot days. I appreciate you both so much & ur gift if honesty, it means more than u will ever know.
Dear Shirley, I’m so pleased to hear that you’re getting somewhere and well on your way to a solid diagnosis. Apologies, I’m not sure if you mean a brain and lumbar spine MRI scan, or a lumbar puncture. Either way, I do hope that it goes well for you and without a hitch.
It must be extremely difficult, managing and coping with your illness all alone, I think you are doing a spectacular job and being incredibly brave. I do understand how scared you must be, I really do, for me at the moment I have had to go on some new medication to combat a very difficult to cope with symptom of my condition. Teresa and I are going to make a video about it very soon, it has been very challenging and brought with it very dark depressing thoughts for me.
As for the weather, I only wish it had been warm.. at the moment in the UK our summer has been thoroughly miserable. Cool temps, with drizzle and so much wind. We are currently in mid summer, and night time temps are dropping to 9°C, unbelievable.. I’ve never known a summer quite like it.
Well, you take care and I very much look forward to hearing from you soon, hopefully with some good news and a diagnosis.
All the best - Neil & Teresa. 🦋
Hope you are both doing ok Neil &Teresa?! 🙏
Hey there, and yes we are doing ok'ish. Thank you so much for asking. I hope that you are doing ok too?
What a lovely surprize to have a reply and okish is good to hear though often means getting by so wishing you both my best. I am in Canada and thought how amazing an online presence can create true compassion and connection with a total stranger. My Dad was born in Liverpool and though he is no longer with us I always warm to someone from the north or Ireland. You Neil bare a resemblance to an uncle I had and Teresa the warmth my Aunt had. That and finding you as my first MS TH-cam viewing at the start of the pandemic. I too have MS and a little tough as single and live alone and without my Christian faith would be in despair. Manage with some challenges some days more than others. Used rollator to mobilize since 2019.
Truly just pleased to know you are both okish ... look forward to the day you have another video. You are both inspiring and take good care of each other ! Love Kathleen
Hello Kathleen, thank you for your kind words. It’s very interesting to know where and when you discovered our channel. I think a lot of people turned to TH-cam whilst in lock down.
I’m terribly sorry to hear that you’re having to cope with this soul destroying condition all alone, but yes, having your faith to turn to is certainly a comfort. I myself have never really been a religious person, but I feel I’ve now come to the end of what modern medicine can offer me, so I too have found myself turning my mind to a more Spiritual way of thinking. I often think to myself, there better be something waiting for me at the end of this life, after all the pain and suffering I have to endure on an hour by hour basis. I’m quite sure that there is.
I see you mentioned using a rollator, it’s good that you’re keeping safe, your health and well-being is paramount. I simply don’t know how I would cope if ever I broke a bone (or worse) and had to have a stay in hospital. So, I’m massively careful and take absolutely no risks. As you’ve probably seen in the video, I’ve been getting used to my new Scooter .. I have to say it’s rather brilliant. It feels strange to be able to, once again, move at the same speed as everybody else!
We are planning to do another video quite soon, so you’ll have to keep a look out Kathleen.
Take care now - Neil. 🙏
Hi Neal , Are you on a DMT? For your MS
Hi Michelle, yes I’m on a drug called Rituximab which is pretty much identical to Ocrevus.