I am pleased you got the scooter even as a try out Neil. I bought mine because it had a high supportive reclinable back and adjustable tiller as I have muscle weakness as you have, plus very good suspension. It cost a lot and it doesn't fit in a car of course but it means I can go for a burn just round the local area. After being housebound for so long this feels like freedom. Of course you will feel uncomfortable not being on your feet. It is very challenging especially for those of us with invisible disability. In the end it is choosing the lesser of 2 evils, being stuck inside like a prisoner or having limited freedom. There is no silver lining in this business and I think we shouldn't ask ourselves to be anything other than pissed off. This is just loss upon loss upon loss. The amazing thing is we still keep on living, still keep on loving, still keep on hoping amidst the pain and the sorrow. I think the thing is we need over time to stop comparing ourselves to what we were and what other people can do and consider that our true worth is unaffected, that love is not moved though everything around it may be. That is what we have as a community. We all know intimately how amazingly courageous we all are, how vulnerable we are, how taken to the edge we are. We are learning first hand how extraordinary the human spirit is. In the midst of all this what people see when they listen to you is not what you have lost but what you found and still have in your wonderful marriage. This journey pares us down to the bone, takes us to absolutes. The one thing that will never be taken from you is your love and in the end that must be sufficient. Even the pain you have around not being able to protect, a real pain, is because you have found true love and no illness, nothing can diminish nor damage that. Hold on tight to that. Love to you both💖
Hi Willo, nice to hear from you .. I also considered the more expensive scooters with much more supportive seats and suspension etc, honestly they look amazing and I'd still really like one. The issue we have is as you say they don't fit in the car, I can drive and Teresa doesn't. So we needed something we could take with us in the car that I could ride along side Teresa.. When I've plucked up the confidence to go out in public on it I do intend to give it a try, so watch this space (I'm bound to do a video on it). Yes, it is choosing the lesser of two evils for sure and the thing is Willo I am spending more and more time in the house not wanting to go anywhere because all I can do it sit in the car. I do exactly that Willo, I compare myself to other people all the time.. I'm thinking about the past when I used to walk 3 - 4 miles in my lunch break around the beautiful lake, I envy the people that can do it now and I'm angry with my body because I'm being forced to use wheels in order to continue with the life I loved. It's so hard accepting that the life I once knew is now over. Thanks for your words of wisdom Willow, you can be sure nothing will break the love Teresa and I have for each other no matter how hard life tries. Much love to you.
Non MSers don’t realize what we mean when we say everything takes a huge effort to accomplish. From going potty to eating to getting the mail to groceries. We do NOT want to be a burden to anyone. Never give up my friends! Nice cart Bro! That’s awesome! Stay safe! I hope your wife is better! 🙏🏼
I really resonated with your latest comment Sheridan. I feel exactly the same way, the thought of being a burden worries me terribly. Having said that, my dear wife assures me regularly that there is nothing she wouldn’t do for me, she’s such an Angel. And yes, I agree with you yet again that EVERYTHING takes a huge amount of effort to accomplish. Even a short walk is considerably more difficult and troublesome and uses so much more energy than the average person who is well. Teresa is feeling much better now thank you for asking. Take care.
Hi Neil ..I'm at that stage now ..so angry frustrated 😠 In forced to stay indoors I miss my walks to parks I miss freedom I can only walk fir 10 mins then I'm overwhelmed with stabbing pain my head and eye and loose balance ..I need to get out .. I want to scream I miss driving.. I miss working I miss me.
Ahh, bless you Gitte .. I can COMPLETELY relate to everything you have said here. I miss me too and all the things I used to be able to do. As much as I love my home, it’s becoming my prison. Know that I understand, I really do. I’m very down at the moment, I’m getting worse as the days progress, nothing helps.
So nice to hear from you Neil. Listening to you talk about Teresa made my eyes teary ....and I admire your openness and honesty even when I know it’s tough to do. You’re inspiring just by being you....and.....sorry about the scooter....what a bummer! Teresa, I hope your toe heals quickly and you’re feeling better.
Thanks Karen, I’m going through give the scooter a go probably round Tesco early one morning when nobody is around. I’ve just got to pluck up the courage, not sure when that will be though.
Lol yeah! That’s pretty much what I brought it for, I don’t think there’s any way I could ride it on the pavements. Far too bumpy, my back just wouldn’t take it. In Tesco it’s all smooth floor no bumps😎 Watch this space.
I'm so sorry for your pain and frustration and mobility being limited at this time. Prayers for a remission..you're a strong and kind soul and your wife seems so sweet as well. I'm glad you have each other!
Hi Neil,lovely to see you and Teresa! The progression is real,I'm so glad you did not hurt yourself. New tool to aid you in your mobility. It does take time to get used to them.Phooey,get well both of you!! Good to see your update. Avril
Hi Avril, really nice to hear from you.. I hope this message finds you as well as can be. Yes, it's taking a bit of getting used to.. I've not really found my confidence yet but when I do I expect I'll do a video on it.
New video, yay! You guys are such an awesome couple! I feel bad that I can't go shopping with my mom any more, but I know she doesn't mind getting out on her own and spending some time on herself. We go to lunch once in a while and that wipes me out. Today it was warm out and just 1 minute of leaving the air conditioning car and getting into the house, I felt like I was so out of breath (as if someone were hugging me but it was just from the little walk, so I doubt an MS hug or anything). Just those rare moments of getting out is something I cherish. I can't imagine how frustrating it is to worry about someone you can't be with but on the plus side, she knows you would if you could, and the fact that you're there at home and in others ways, I know she appreciates that. Get yourself a funny bumper sticker for the back of your scooter! :) Do something with it that will get attention to it. I know that sounds stupid, but that way people will see you don't take it too seriously and if they stare, it'll be because of the silly balloon or sticker you've got attached to the scooter and not "oh what's wrong with that guy in the scooter?" Make people smile while you ride around in it and it'll lesson the awkwardness, I think. Hopefully the scooter gets better when your back gets used to it. Also, I love your ironing board cover. Give my love to the lovely wife. Hope her toe heals fast. She could have fallen even if you had been there so don't beat yourself up about it too much. You can take care of her at home with a gentle foot rub. :)
Hey Lisa, thank so much. Like you feel bad not being able to go out with your Mum, I feel the same with Teresa. We would go everywhere together, but this has now had to change. It doesn't just effect me, it effects Teresa as well, but she understands there's nothing that can be done, and I'm sure your Mum does too. The funny bumper sticker sounds like a great idea, I like stuff like that.. I've got to find the confidence to go out on the scooter yet though. I'm working on it, and I'm sure there will be a video when I finally manage it. Teresa reads all the comments, thank you .. you're right I had the same though, even if I was with her and she fell there wouldn't be much I could have done to prevent it.
You gotta get yourself on that scooter and then you can start going everywhere with her again. :) And let her pick out the funny bumper sticker(s) for you, hehe! *waves to Teresa*
Dear Neil, I know exactly what you are talking about! The hardest thing for me was to turn away from driving. You know I was a busdriver before I was retired. Also driving a car is almost impossible for me on some days so most of the times my husband is driving, when he is home. On many days he is driving in the bus company and I am sitting at home, unable to get anywhere. That is definitely a lack of life happiness! But on the other hand I don't want Gosbert to stay home with me all the time. That wouldn't change anything at all, despite he would be bored also ;) I got my wheelchair lately and now trying to get my freedom back. As a new whelchairuser there are so many things to learn with the wheelchair, but it makes so many things easier for us. We can go to the citiy, in the Mall or even to a restaurant for lunch or dinner without too many problems, as far as this place is accessible. It is harder to do the things you used to do, but some are possible again, because you don't spend all your little energy on walking or driving, when the "spoons" are all used up! Let Theresa have a time for herself and you should never feel guilty because of the MS related issues you have! She is loving you! No matter how you look, no matter how you walk or not, no matter whatever! Let her decide when to stay with you and when she is needing to go outside alone. And be sure, there are so many things you can do again with the wheelchair! The most important thing is to see the wheelchair as a helper, not a must. It help you to get around easier. I am getting used to mine now and really like the way I can cover longer distances and go shopping with my girlfriend again, which was impossible before the wheelchair. We are going on a 9 day roundtrip with the bus to Scotland on Sunday and I am going to take the wheelchair with me, although I know I sure can't get to all the places I want to, but I can participate in so many things that would be impossible without the chair. And there are many passengers, besides my husband Gosbert, who really offer warm helping hands! I will tell you more when we are back ! I am thinking of you! Say Hi to Theresa ! All the best for you, Neil! Sincerely Britta
Hi Britta, yes I know where you’re coming fro with regard to having to stay home. Like you with Gosbert I am only happy for Teresa to continue doing what she enjoys. Having said that she missed being with me from her perspective also as we are so used to doing everything together. It’s difficult adjust that is for sure. I’m so pleased you now have your chair to help you get around, and give you some independence back. As for the spoons, yes they get used up pretty quickly especially in this hot weather. Even as I type this message, I’ve got no spoons left, it takes all my strength just to move from room to room. Oh yes the trip to Scotland, I recall you telling me about that. I hope you have a lovely time Britta, and I’m sure the chair will make things much easier for you. Enjoy. Oh and Teresa knows you’ve said Hi as she reads all the messages before I do 😲 Take care. Neil
Neil, I aprechiate so much our little conversations here! Hope you are feling a little better today! I need to get some loads of laundry done before our trip, so this is just a quick reply. Oh, before I forget: try a comfy cushion on your scooter for your backpain, maybe that might help a litttle bit. I will post on instagram about my trip, so if you want to, look there and see my pictures from Scotland. Maybe Nessie is showing up while we are there ;) greetings to you, Teresa! All the best, Britta
Hi Britta, I will try and remember to look in Instagram although I don't really use it that often. I only opened an account to see what all the fuss was about because everybody else seemed to have one. I've used Facebook for about ten years and to me it's almost like a trimmed down version. I'm sure Nessie will get in there on one of your snaps! I hope you have a lovely time, take care.
I’ve missed your videos Neil! And I think you and Theresa are soul mates too :) I’m glad you now have a way to go out although I completely understand what you mean about it still being difficult because of the pain and also because of feeling self conscious :/ I could walk for 19 years (I’m 20 now) without needing a mobility aid and although it’s not as long as you could, I still know what you mean about it feeling really strange & having people’s perceptions of you change :/ But like I said before, it does get easier the more you do it and hopefully you’ll feel a little but more confident on the scooter in that brilliant blue colour than you did in the wheelchair :) & it also gives you some independence back as you can do it yourself :)
Thanks Georgina, yeah its been a little while since I did a video.. but I'm still here :) I know that you have POTS but I'm not entirely sure how it effects your mobilty. I'm thinking it's heart related and that to walk any distance is absolutely exhausting for you, hence the need for mobility aids. I've not quite gathered the confidence yet to give my scooter a go in public, but I'm working on it. Just moving from room to room at the moment is taking up so much energy, it's easier to just stay around the house to be honest. I hope this message finds you well Georgina.
Neil Bradley you’re welcome & I’m glad to hear that :) Yes, pots is heart related so I faint when walking/standing for more than a couple of minutes- some people say it’s like being allergic to gravity. And that’s understandable, there’s no rush :) If you can manage it, I would say it’s helpful to start using it a bit further away from home to start with, I felt more comfortable when there was a smaller chance of seeing people I knew. If that’s the case for you too, maybe a town about 45 minutes away in the car would be easier than one that’s 20 minutes away for example. Or using it in a setting that it’s likely to ‘blend in’ more, so maybe to a doctors or hospital appointment. The other issue of not having the energy is difficult too, but maybe telling yourself you’ll just try to go for a short while would be useful? I wish I could help more, but I think you’re doing better than you think you are :) I’m ok thanks, I hope you’re as well as you can be and that it’s a lower pain day for you
Hi neil glad to see you it's ok to let it go and say what's on your mind and what your going thru No relapse here i remember when i first started watching your videos back when i had my first relapse and found out what i had since then i recovered 95 percent and I'm so grateful that i did thought i would be like that forever let's hope for a cure and soon take care.
Hey there! I so pleased my videos have been helpful to you in some way. I’m guessing you’re Relapsing Remitting MS given that you’ve recovered 95%. That’s brilliant by the way, I’m super pleased you’ve recovered. Keep doing whatever it is your doing. Thank you for writing and letting me know, means a lot. Take care and please pop back anytime.
Neil I will definitely love your videos they really do mean a great deal to me they gave me inspiration to get out of bed and make myself walk had to relearn went numb from the neck down thank you so much for your time making these videos
Wow! I’m so touched that my videos inspired you to keep going, after you had such a devastating MS attack. Numb from the neck down! My goodness, I can only imagine how frightened you must have been. Thank you for letting me know this, comments such as yours inspire me to continue doing my videos, so I thank you. Blessings to you.
Neil it was horrible but i prevailed and fill so blessed to have recovered as much as i have I also stopped eating pork which seems to help as well but thanks for your videos can't wait for the next one nice to not feel alone in this fight we are facing
Your videos are very factual. This I admire. But know this we have to be more creative than ever before. I have a trip from Belfast to Hereford next month. I need all the support I can get
Hello Mike, and thank you for all of your comments. I appreciate every one of them. I can very much appreciate how worried you are about your trip, I would be as well. Have you got somebody that will accompany you?
I am going to try Lions Mane powdered mushroom. I take a ton of vitamins anyways but this one is supposed to help the nervous system. Couldn't hurt me to try.
Hi Renee, I also take a lot of vitamins in the hope that I find something that helps with the symptoms and pain. It absolutely doesn’t hurt to try, and it also helps you feel better I think in the knowing you’re doing all you can to help yourself. Take care.
I'm going through the same thing right now. It is very frustrating because MS or TM takes over your entire life more so than cancer. I know I have both cancer and TM. Life isn't positive all the time its getting back to the normal life or a normal connection to a relationship that consumes your entire heart. We push so hard to get better, strong and doing what we love to do with the one we love the most. But our bodies doesn't match up with our brains. Your feeling what everyone does. My husband and I met in high school been together for 30 yrs. we have decided to find things to do together even if its in the house. Cooking meal and watching a movie, painting pictures, reading together. Get that scooter out and ride while she walks for 30 minutes. I hate ppl staring so I have learned to stare at them until they feel weird just because I'm in a wheelchair. Look into a different seat. I'm so sorry you fell, and your love fell I've been told by survivors and fighters of many years of having TM and my cancer instead of letting them just go on their own figure out how to do it with them on a scheduled day even if your in pain do it because your going to be in pain at home anyways and this way you can be with your love and figure out how to do things together in a disabled way. Your upset and depressed because this damn disease takes away everything you love. Oh how I would love to get in my car open the sun roof pop in a CD and just drive and blast the music and sing a lone just me with no pain or time restraints, walk on the beach sit in the sand and drink Corona's with lime and salt reading a book while my family are swimming or fishing in the ocean. Freedom of motion and activity is different for everyone. I was extremely active until I woke up at 5am with my husband and had no feeling from my belly button down. I was told I would never walk but I am slowly and short distance with a rollator walker. I refuse to stay negative all the time but we all have the right to get got and damn pissed at the situation yell and cuss we earn that right. Then I'm all better and I find something to do even if its washing vegetables at the kitchen table and chopping them up and putting in bags for the refrigerator and freezer. Make it your job to ride your scooter to the mail box or pulling the dishes out and placing them on the counter. Make the best of what you have now because it can be taken away tomorrow. My name is Renee` Burns and I am 47 years old, 10 year bone marrow survivor and 3+ years survivor of TM. I hurt on a level of 4 everyday waking up and it gets worse as the day goes by but I will get dressed put a smile on my face and spend every moment I can with the ones I love to make those memories. You will one day come to terms with your disability and maybe move forward. Stop complaining your life will get worse so while you can do things do it bc one day you want be able to.
Thanks you Reene, this evening I’m feeling pretty rough and I would say the pain level is 7’s going into 8’s. However reading your lovely message has uplifted me somewhat, you are an inspiration dealing with TM and being a cancer survivor. My hat is off to you. I yearn to do all of the things you have written about once again, but cannot. It’s hard not to feel upset as I see my quality of life being destroyed day by day. But I try, I really do. Having to deal with significant pain and weakness every day is taking it toll on me, but I will continue to fight this battle. I am truly blessed to have my amazing wife Teresa, I honestly don’t know what I’d do without her.. she is an Angel in every sense of the word. Thank you for writing a Reene, blessings to you.
I see you as a positive person fighting ms with all you've got showing others how to pull yourself through day by day you are teaching other's they are not alone thank you
You two are certainly a pair - Spiritually as well as accidents! I had a little toe break by running into a vacuum cleaner (!) but kept the foot in a boot for a while, steady, and they mend themselves. I agree with the rest of your followers, Neil, have your wheelchair seller come out & look how to help you. Perhaps different cushioning (thicker & more stable) may help. Bus drivers have special seats that take the bumps of the road rather than the driver taking the bumps. I would like for you to check out a book on Amazon "Stand Up..." by Ken Cruickshank. He has PPMS & has just started Ocrevus (I know you said this drug may not be right for your condition). But his book is not only humorous with much insight but he will soon be taking a trip with his wife to several places in the U.S. He's got a van that's special for his scooter and traveling. He likes going out & won't let the MS get the upper hand in his life. In Kindle the book sells at a very low price. Feel good and feel positive - the both of you! It is precious that you have one another. Some MSers are coping alone. Cheers!
Thanks Zan, Once I’ve built up a little more confidence I’m hoping to take the scooter out. It’s not really the sort that can go on pavements, as it’s a very basic model with no suspension. I brought it primarily so we could take it with us in the boot of the car, so I could perhaps continue going around the super market with Teresa, or just short distances etc. But rather importantly only when I feel I’m not up to using my legs. I don’t want it to be a replacement for my walking. Thanks for the heads up on the book, I’ve just been on to my Amazon app and found it. I’m going to check it out and read the synopsis later on, thanks for that. I realise that some MS’ers have nobody and I often say to Teresa I’m not sure what I’d do without her. And I REALLY mean it, I would be seriously in trouble as she does so much for me. She is a blessing that is for sure and I would love her even if she couldn’t do those things. As always good to hear from you Zan, take care. Neil.
Neil, I know you think think a lot of your videos are negative, but have you ever considered that just maybe you are reaching even just 1 person that lets them know they're not alone? Now days they want to show all this so called reality tv, give me someone who is being as honest as you any day than those fake shows! If I'm friends with someone I want to hear both the good and bad things in their lives not just the good, and if they have more bad than good days then so be it! Best wishes and hugs! Stay strong and keep up the good work!
Thank you, and yes I felt in the past that a lot of my videos are always negative but as you're no doubt aware this is how the condition effects us. You are however correct, so many people do come back to me and say how they're able to relate in a such a big way because that is how they are as well. So, yes it's a lovely feeling knowing that I am able to help them simply by showing how it really is, keeping it real as it were. Best to you - Neil.
I haven't commented on your last few videos Neil, because I didn't feel there was anything I could say that would help you. But having seen this video, I now understand how your MS is progressing. All I can say my friend is that I know what you are going through, because my cp has been on the decline over the last few years. I know where you are when you say about having to make certain decisions, but not accepting them. But I got quite emotional when you spoke about not being with Teresa. It's a big thing for you mate. Some days, tou may be ablde to go out together though.
Hi Dean, and thanks. Yes, not being with Teresa breaks my heart because we've always supported each other over the years and done everything together. We're like two peas in a pod. I'm sorry to hear your CP is also on the decline, I really am.. but I know how you are feeling. Rarely do I even get a good day, all I ever find is I can't do this or I can't do that now. I hate it I really do. Stay well my friend.
Hey Neil, I don't think this heatwave does us MS'ers any favours, so will be interesting to see once the temperature drops if there are any improvements - I so hope you do pick up again, and hopefully your back adjusts to being in the scooter, as at least having it means you can still go out with Teresa on your day trips. It will take time to get used to it (physically and mentally) but I think it will help maintain some much-needed normality for you. Take care Neil, and remember we will all be fighting alongside you.
Thanks Laura, we’re enjoying a much cooler day today albeit it throwing it down with rain. I think I prefer the ☀️, lol but then again the gardens are so dry. Hopefully I’ll find some confidence from somewhere and go out on the scooter, but I’m not sure when that might be. I hope all is well with yourself. Take care.
I’ve not tried that Joyce, how does it help with pain? I’m pretty sure my back muscles are compensating for my poor gait caused by all the muscles in my legs not talking to each other.
Hello there Shanti, absolutely! It’s a real struggle getting down the garden at the moment but I force myself. I consider Cedric one of my main priorities. In fact there are so many birds that wait for their breakfast in the tree. As soon as I appear, it’s funny because I suddenly notice “activity”. I love those little birds and they bring me SO MUCH joy to see them. I also fill the bird bath up every morning with water. Have you ever seen the birds bathing themselves, it’s such a beautiful site.
I do the same thing you do every morning. When they see me they flock around and scold me if I’m late. I have sparrows, wrens, starlings, and robins. I love watching them take their baths everyday. 🤗
Hi Shanti, it was lovely to read your reply.. I too have the same birds as you plus a few more.. I've not seen a Robin for quite some time until this last week I've heard the distinctive "click click" sounds they make. Sure enough, there's a baby Robin around and they are so lovely. To hear you have the same routine as me in the morning really brought a smile, and yes don't you even think about being late!! lol One of the thing I would really love to do is film each different type of bird in my garden and make a RUclips video.
I know how you feel Neil. MS makes me so angry because it affects not only me but also my wife who - touch wood - is fit and healthy. Without her I would be useless. Keep strong. Tomorrow is another day and hopefully better.
Thank you William, and I understand completely. I’m not sure what I’d do without my wife either, she’s my rock. As I type I can barely walk from room to room, I think the hot weather has something to do with it.
You're right Neil, this hot weather is a killer. A shame, I loved the sun. Now I'm like a vampire. Expose me to direct sunlight and I wither away! I hope it's not as bad for you. With luck, the forecast is right and it will be cooler over the weekend. Take care both of you, Will
Hi Will, I think I'm going to join you as a fellow Vampire! Certainly this year I've not been so good in the sun, where as in the past I've been ok. Yes it's going to be cooler this weekend which will be nice. We've not had hot weather like this in the UK for many years. You take care also, and have a nice weekend.
Hi there Jared, it interesting you should say that because sometimes I get a small glimpse of how I used to be able to walk, only for a brief moment. It’s as if for a few seconds my muscles work properly, then very quickly they forget again. Very strange sensation, brings with it a lot of emotion.
Dear Neil, I just wanted to send a message to you asking if you are alright and why you are not posting any more videos. Then I realized that I must have unsubscribed from your videos accidentally some time ago.😕 Now I simply want to drop you a line saying that I am quite relieved to see you in a good spirit. Wish you and your lovely wife all the best. Martin
Hi Martin, yes long time no speak.. ah well not to worry at least you’re back now and you realised what had happened. I expect you’ve got a bit of catching up to do with my videos then when you have the time. I’ve passed on your good wishes to my wife, thank you. All the best to you, great to hear from you as always.
You HAVE to find a scooter you can keep in the car. And any mobility aid that gets you from the door of the flat to the door of the car. Make little short practice runs and Teresa can certainly DRIVE you both. That’s sexy
sorry for spelling your wife's name wrong! I apologize! Maybe you can get extra protection for your back so it is a little stabilized.....ask the seller of the scooter or an orthopedic store worker. My wheelchairseller came to my home and we discussed all the things that are important for me to have in my wheelchair und most of them are installed...and it is bright shiny red color! Almost like a Ferrari ;)
Please go to OT and get properly fitted for a power chair, if not for yourself do it for your wife. You then can ride a bus etc. You may want to look at hand controls to drive with.
Thanks Donna, those are definitely worthwhile considerations but before I do I need to build up my confidence with the new scooter before moving up to any kind of power chair. I’m giving thought also to hand controls, or maybe utilising the UK’s Motorbility scheme. Thanks.
Hi Neil, hope your having a better day, my girlfriend Clair was diagnosed with secondary a year and a half ago and ive watched her slowly get worse over that time Shes been off work since March (part time tesco tills) and is struggling with pain, sleep,and walking.. A month ago she was fitted with a electric pulse (fes) device on her leg , and given a change of medicine, and has now had a month of slowly feeling better.. Please dont give up fella, i know the pain and suffering your going through but maybe there might be some hope in the future with all the medical research going on Clair is going into work for 4 hrs tomorrow and im so proud of her, a month ago she was writing letters saying how she felt she was slowly disappearing... Lets hope you get a nice pick up in the near future too
Hi Jonny, I'm really sorry to hear your girlfriend has been diagnosed with this god forsaken condition, not good at all and it must be heartbreaking watching her decline. I can honestly say I do understand, I'm also struggling a LOT with pain, sleep and walking. In fact at the moment I survive on very little sleep, I grab bits during the day, and my walking is practically non-existent at the moment. Just getting from room to room is very challenging, and then of course you've got to mix in all the pain into all that. I've heard of the device you talk about, I think it could be delivering a drug called Baclofen to ease spacticity and muscle stiffness. I might be wrong of course, but I'm really pleased to hear she's having a slightly better time recently. Long may this continue for her. That's brilliant that Clair feels strong and well enough to go into work, I'm so pleased for you guys. It's a long time since I've been to my office, I miss my work colleages some of which working with for over twenty years. I really do understand where Clair was coming from when she used to write her letters, that is how this condition makes you feel. Everyday we are being robbed of our quality of of life, even now I keep having to tick things off a list I can no longer do, simple things as well. I find it so frustrating, and I'm sure Clair must do also. Thanks for writing Jonny, I really appreciate you contacting me and telling me about yourself and Clair. I really hope she continues to feel much better. Best Regards - Neil.
Neil Bradley, hi Neil, hope your feeling ok this weekend and thanks for your reply, I know it bought a tear to Clair's eyes I know the condition makes you feel like giving up but one thing I always try with Clair is to try different approaches when things get worse. She's about to start a course of acupuncture(for the back pain) which the ms nurse has arranged, I think the first few sessions are free so we will see how we go on and let you know.. The electrical device is called a fes, it sends electrical pulse down the leg which helps with her severe footdrop.. Another option we are looking at and I know this didn't help you to much but with this new government legislation, cannabis oil?.. Yes I can understand your concerns over the scooter, when we now go on day trips we have started using Clair's dad's wheelchair and the transition for her was horrible, like losing your independence, but these are useful aids to help us get around still and venture out.. Regards Jon
Hi Jon, yes the legalisation of Cannibis Oil was brought to my attention by another subscriber only the other day. I’d not heard the news! I’m very interested and I’m going to ask my Dr about it. Apparently however only certain senior Dr’s are allowed to prescribe it, so not sure how that works. I’m really pleased Clair is getting some treatment, and the Fes machine sounds good. Sometimes even just a little respite from the nasty symptoms is all that is needed, I’d be interested to hear how she gets on with the acupuncture. We’re finally having a break from the very hot weather here in the uk, and I’ve been feeling ok, thanks for asking. All the best to you guys, Neil.
I am pleased you got the scooter even as a try out Neil. I bought mine because it had a high supportive reclinable back and adjustable tiller as I have muscle weakness as you have, plus very good suspension. It cost a lot and it doesn't fit in a car of course but it means I can go for a burn just round the local area. After being housebound for so long this feels like freedom.
Of course you will feel uncomfortable not being on your feet. It is very challenging especially for those of us with invisible disability. In the end it is choosing the lesser of 2 evils, being stuck inside like a prisoner or having limited freedom.
There is no silver lining in this business and I think we shouldn't ask ourselves to be anything other than pissed off.
This is just loss upon loss upon loss.
The amazing thing is we still keep on living, still keep on loving, still keep on hoping amidst the pain and the sorrow.
I think the thing is we need over time to stop comparing ourselves to what we were and what other people can do and consider that our true worth is unaffected, that love is not moved though everything around it may be.
That is what we have as a community. We all know intimately how amazingly courageous we all are, how vulnerable we are, how taken to the edge we are. We are learning first hand how extraordinary the human spirit is.
In the midst of all this what people see when they listen to you is not what you have lost but what you found and still have in your wonderful marriage.
This journey pares us down to the bone, takes us to absolutes. The one thing that will never be taken from you is your love and in the end that must be sufficient. Even the pain you have around not being able to protect, a real pain, is because you have found true love and no illness, nothing can diminish nor damage that. Hold on tight to that. Love to you both💖
Hi Willo, nice to hear from you .. I also considered the more expensive scooters with much more supportive seats and suspension etc, honestly they look amazing and I'd still really like one. The issue we have is as you say they don't fit in the car, I can drive and Teresa doesn't. So we needed something we could take with us in the car that I could ride along side Teresa.. When I've plucked up the confidence to go out in public on it I do intend to give it a try, so watch this space (I'm bound to do a video on it). Yes, it is choosing the lesser of two evils for sure and the thing is Willo I am spending more and more time in the house not wanting to go anywhere because all I can do it sit in the car.
I do exactly that Willo, I compare myself to other people all the time.. I'm thinking about the past when I used to walk 3 - 4 miles in my lunch break around the beautiful lake, I envy the people that can do it now and I'm angry with my body because I'm being forced to use wheels in order to continue with the life I loved. It's so hard accepting that the life I once knew is now over.
Thanks for your words of wisdom Willow, you can be sure nothing will break the love Teresa and I have for each other no matter how hard life tries. Much love to you.
Non MSers don’t realize what we mean when we say everything takes a huge effort to accomplish. From going potty to eating to getting the mail to groceries. We do NOT want to be a burden to anyone. Never give up my friends! Nice cart Bro! That’s awesome! Stay safe! I hope your wife is better! 🙏🏼
I really resonated with your latest comment Sheridan. I feel exactly the same way, the thought of being a burden worries me terribly. Having said that, my dear wife assures me regularly that there is nothing she wouldn’t do for me, she’s such an Angel. And yes, I agree with you yet again that EVERYTHING takes a huge amount of effort to accomplish. Even a short walk is considerably more difficult and troublesome and uses so much more energy than the average person who is well. Teresa is feeling much better now thank you for asking. Take care.
Hi Neil ..I'm at that stage now ..so angry frustrated 😠 In forced to stay indoors I miss my walks to parks I miss freedom I can only walk fir 10 mins then I'm overwhelmed with stabbing pain my head and eye and loose balance ..I need to get out .. I want to scream I miss driving.. I miss working I miss me.
Ahh, bless you Gitte .. I can COMPLETELY relate to everything you have said here. I miss me too and all the things I used to be able to do. As much as I love my home, it’s becoming my prison. Know that I understand, I really do. I’m very down at the moment, I’m getting worse as the days progress, nothing helps.
Great to see you both, love your heartfelt honesty Neil.
Thanks Paul, appreciate it my friend.
So nice to hear from you Neil. Listening to you talk about Teresa made my eyes teary ....and I admire your openness and honesty even when I know it’s tough to do. You’re inspiring just by being you....and.....sorry about the scooter....what a bummer! Teresa, I hope your toe heals quickly and you’re feeling better.
Thanks Karen, I’m going through give the scooter a go probably round Tesco early one morning when nobody is around. I’ve just got to pluck up the courage, not sure when that will be though.
Neil Bradley you are courageous! Look at what you’re doing here....tesco pfffffft!
Lol yeah! That’s pretty much what I brought it for, I don’t think there’s any way I could ride it on the pavements. Far too bumpy, my back just wouldn’t take it. In Tesco it’s all smooth floor no bumps😎 Watch this space.
I'm so sorry for your pain and frustration and mobility being limited at this time. Prayers for a remission..you're a strong and kind soul and your wife seems so sweet as well. I'm glad you have each other!
Thank you very much, that's so very kind of you to say so. Blessings to you.
This brought a tear to my eye bud. I can only imagine how hard and frustrating it must be. But you must remain positive, keep being you bud.
Hey! Good to hear from you and thank you that’s very kind. I will do my best. Take care.
Hi Neil,lovely to see you and Teresa! The progression is real,I'm so glad you did not hurt yourself. New tool to aid you in your mobility. It does take time to get used to them.Phooey,get well both of you!! Good to see your update. Avril
Hi Avril, really nice to hear from you.. I hope this message finds you as well as can be. Yes, it's taking a bit of getting used to.. I've not really found my confidence yet but when I do I expect I'll do a video on it.
New video, yay! You guys are such an awesome couple! I feel bad that I can't go shopping with my mom any more, but I know she doesn't mind getting out on her own and spending some time on herself. We go to lunch once in a while and that wipes me out. Today it was warm out and just 1 minute of leaving the air conditioning car and getting into the house, I felt like I was so out of breath (as if someone were hugging me but it was just from the little walk, so I doubt an MS hug or anything). Just those rare moments of getting out is something I cherish.
I can't imagine how frustrating it is to worry about someone you can't be with but on the plus side, she knows you would if you could, and the fact that you're there at home and in others ways, I know she appreciates that.
Get yourself a funny bumper sticker for the back of your scooter! :) Do something with it that will get attention to it. I know that sounds stupid, but that way people will see you don't take it too seriously and if they stare, it'll be because of the silly balloon or sticker you've got attached to the scooter and not "oh what's wrong with that guy in the scooter?" Make people smile while you ride around in it and it'll lesson the awkwardness, I think.
Hopefully the scooter gets better when your back gets used to it. Also, I love your ironing board cover. Give my love to the lovely wife. Hope her toe heals fast. She could have fallen even if you had been there so don't beat yourself up about it too much. You can take care of her at home with a gentle foot rub. :)
Hey Lisa, thank so much.
Like you feel bad not being able to go out with your Mum, I feel the same with Teresa. We would go everywhere together, but this has now had to change. It doesn't just effect me, it effects Teresa as well, but she understands there's nothing that can be done, and I'm sure your Mum does too.
The funny bumper sticker sounds like a great idea, I like stuff like that.. I've got to find the confidence to go out on the scooter yet though. I'm working on it, and I'm sure there will be a video when I finally manage it.
Teresa reads all the comments, thank you .. you're right I had the same though, even if I was with her and she fell there wouldn't be much I could have done to prevent it.
You gotta get yourself on that scooter and then you can start going everywhere with her again. :) And let her pick out the funny bumper sticker(s) for you, hehe! *waves to Teresa*
Dear Neil, I know exactly what you are talking about!
The hardest thing for me was to turn away from driving. You know I was a busdriver before I was retired. Also driving a car is almost impossible for me on some days so most of the times my husband is driving, when he is home. On many days he is driving in the bus company and I am sitting at home, unable to get anywhere. That is definitely a lack of life happiness!
But on the other hand I don't want Gosbert to stay home with me all the time. That wouldn't change anything at all, despite he would be bored also ;)
I got my wheelchair lately and now trying to get my freedom back. As a new whelchairuser there are so many things to learn with the wheelchair, but it makes so many things easier for us. We can go to the citiy, in the Mall or even to a restaurant for lunch or dinner without too many problems, as far as this place is accessible. It is harder to do the things you used to do, but some are possible again, because you don't spend all your little energy on walking or driving, when the "spoons" are all used up!
Let Theresa have a time for herself and you should never feel guilty because of the MS related issues you have! She is loving you! No matter how you look, no matter how you walk or not, no matter whatever!
Let her decide when to stay with you and when she is needing to go outside alone.
And be sure, there are so many things you can do again with the wheelchair! The most important thing is to see the wheelchair as a helper, not a must. It help you to get around easier. I am getting used to mine now and really like the way I can cover longer distances and go shopping with my girlfriend again, which was impossible before the wheelchair.
We are going on a 9 day roundtrip with the bus to Scotland on Sunday and I am going to take the wheelchair with me, although I know I sure can't get to all the places I want to, but I can participate in so many things that would be impossible without the chair. And there are many passengers, besides my husband Gosbert, who really offer warm helping hands!
I will tell you more when we are back ! I am thinking of you! Say Hi to Theresa ! All the best for you, Neil!
Sincerely Britta
Hi Britta, yes I know where you’re coming fro with regard to having to stay home. Like you with Gosbert I am only happy for Teresa to continue doing what she enjoys. Having said that she missed being with me from her perspective also as we are so used to doing everything together. It’s difficult adjust that is for sure.
I’m so pleased you now have your chair to help you get around, and give you some independence back. As for the spoons, yes they get used up pretty quickly especially in this hot weather. Even as I type this message, I’ve got no spoons left, it takes all my strength just to move from room to room.
Oh yes the trip to Scotland, I recall you telling me about that. I hope you have a lovely time Britta, and I’m sure the chair will make things much easier for you. Enjoy.
Oh and Teresa knows you’ve said Hi as she reads all the messages before I do 😲
Take care.
Neil
Neil, I aprechiate so much our little conversations here!
Hope you are feling a little better today!
I need to get some loads of laundry done before our trip, so this is just a quick reply.
Oh, before I forget: try a comfy cushion on your scooter for your backpain, maybe that might help a litttle bit.
I will post on instagram about my trip, so if you want to, look there and see my pictures from Scotland. Maybe Nessie is showing up while we are there ;)
greetings to you, Teresa! All the best, Britta
Hi Britta, I will try and remember to look in Instagram although I don't really use it that often. I only opened an account to see what all the fuss was about because everybody else seemed to have one. I've used Facebook for about ten years and to me it's almost like a trimmed down version.
I'm sure Nessie will get in there on one of your snaps! I hope you have a lovely time, take care.
I’ve missed your videos Neil! And I think you and Theresa are soul mates too :) I’m glad you now have a way to go out although I completely understand what you mean about it still being difficult because of the pain and also because of feeling self conscious :/ I could walk for 19 years (I’m 20 now) without needing a mobility aid and although it’s not as long as you could, I still know what you mean about it feeling really strange & having people’s perceptions of you change :/ But like I said before, it does get easier the more you do it and hopefully you’ll feel a little but more confident on the scooter in that brilliant blue colour than you did in the wheelchair :) & it also gives you some independence back as you can do it yourself :)
Thanks Georgina, yeah its been a little while since I did a video.. but I'm still here :) I know that you have POTS but I'm not entirely sure how it effects your mobilty. I'm thinking it's heart related and that to walk any distance is absolutely exhausting for you, hence the need for mobility aids. I've not quite gathered the confidence yet to give my scooter a go in public, but I'm working on it. Just moving from room to room at the moment is taking up so much energy, it's easier to just stay around the house to be honest. I hope this message finds you well Georgina.
Neil Bradley you’re welcome & I’m glad to hear that :) Yes, pots is heart related so I faint when walking/standing for more than a couple of minutes- some people say it’s like being allergic to gravity.
And that’s understandable, there’s no rush :) If you can manage it, I would say it’s helpful to start using it a bit further away from home to start with, I felt more comfortable when there was a smaller chance of seeing people I knew. If that’s the case for you too, maybe a town about 45 minutes away in the car would be easier than one that’s 20 minutes away for example. Or using it in a setting that it’s likely to ‘blend in’ more, so maybe to a doctors or hospital appointment. The other issue of not having the energy is difficult too, but maybe telling yourself you’ll just try to go for a short while would be useful? I wish I could help more, but I think you’re doing better than you think you are :) I’m ok thanks, I hope you’re as well as you can be and that it’s a lower pain day for you
Thanks Georgina, you really are a great help. 👍
Hi neil glad to see you it's ok to let it go and say what's on your mind and what your going thru No relapse here i remember when i first started watching your videos back when i had my first relapse and found out what i had since then i recovered 95 percent and I'm so grateful that i did thought i would be like that forever let's hope for a cure and soon take care.
Hey there! I so pleased my videos have been helpful to you in some way. I’m guessing you’re Relapsing Remitting MS given that you’ve recovered 95%. That’s brilliant by the way, I’m super pleased you’ve recovered. Keep doing whatever it is your doing. Thank you for writing and letting me know, means a lot. Take care and please pop back anytime.
Neil I will definitely love your videos they really do mean a great deal to me they gave me inspiration to get out of bed and make myself walk had to relearn went numb from the neck down thank you so much for your time making these videos
Wow! I’m so touched that my videos inspired you to keep going, after you had such a devastating MS attack. Numb from the neck down! My goodness, I can only imagine how frightened you must have been. Thank you for letting me know this, comments such as yours inspire me to continue doing my videos, so I thank you. Blessings to you.
Neil it was horrible but i prevailed and fill so blessed to have recovered as much as i have I also stopped eating pork which seems to help as well but thanks for your videos can't wait for the next one nice to not feel alone in this fight we are facing
The scooter looks great, Neil. Keep working on it.
Thanks Jane, I hope you're well.
Truth well told!!
Great to see you ......😃
Thanks Michelle, lovely to hear from you also.
Your videos are very factual. This I admire. But know this we have to be more creative than ever before. I have a trip from Belfast to Hereford next month. I need all the support I can get
Hello Mike, and thank you for all of your comments. I appreciate every one of them. I can very much appreciate how worried you are about your trip, I would be as well. Have you got somebody that will accompany you?
I am going to try Lions Mane powdered mushroom. I take a ton of vitamins anyways but this one is supposed to help the nervous system. Couldn't hurt me to try.
Hi Renee, I also take a lot of vitamins in the hope that I find something that helps with the symptoms and pain. It absolutely doesn’t hurt to try, and it also helps you feel better I think in the knowing you’re doing all you can to help yourself. Take care.
I'm going through the same thing right now. It is very frustrating because MS or TM takes over your entire life more so than cancer. I know I have both cancer and TM. Life isn't positive all the time its getting back to the normal life or a normal connection to a relationship that consumes your entire heart. We push so hard to get better, strong and doing what we love to do with the one we love the most. But our bodies doesn't match up with our brains. Your feeling what everyone does. My husband and I met in high school been together for 30 yrs. we have decided to find things to do together even if its in the house. Cooking meal and watching a movie, painting pictures, reading together. Get that scooter out and ride while she walks for 30 minutes. I hate ppl staring so I have learned to stare at them until they feel weird just because I'm in a wheelchair. Look into a different seat. I'm so sorry you fell, and your love fell I've been told by survivors and fighters of many years of having TM and my cancer instead of letting them just go on their own figure out how to do it with them on a scheduled day even if your in pain do it because your going to be in pain at home anyways and this way you can be with your love and figure out how to do things together in a disabled way. Your upset and depressed because this damn disease takes away everything you love. Oh how I would love to get in my car open the sun roof pop in a CD and just drive and blast the music and sing a lone just me with no pain or time restraints, walk on the beach sit in the sand and drink Corona's with lime and salt reading a book while my family are swimming or fishing in the ocean. Freedom of motion and activity is different for everyone. I was extremely active until I woke up at 5am with my husband and had no feeling from my belly button down. I was told I would never walk but I am slowly and short distance with a rollator walker. I refuse to stay negative all the time but we all have the right to get got and damn pissed at the situation yell and cuss we earn that right. Then I'm all better and I find something to do even if its washing vegetables at the kitchen table and chopping them up and putting in bags for the refrigerator and freezer. Make it your job to ride your scooter to the mail box or pulling the dishes out and placing them on the counter. Make the best of what you have now because it can be taken away tomorrow. My name is Renee` Burns and I am 47 years old, 10 year bone marrow survivor and 3+ years survivor of TM. I hurt on a level of 4 everyday waking up and it gets worse as the day goes by but I will get dressed put a smile on my face and spend every moment I can with the ones I love to make those memories. You will one day come to terms with your disability and maybe move forward. Stop complaining your life will get worse so while you can do things do it bc one day you want be able to.
Thanks you Reene, this evening I’m feeling pretty rough and I would say the pain level is 7’s going into 8’s. However reading your lovely message has uplifted me somewhat, you are an inspiration dealing with TM and being a cancer survivor. My hat is off to you. I yearn to do all of the things you have written about once again, but cannot. It’s hard not to feel upset as I see my quality of life being destroyed day by day. But I try, I really do. Having to deal with significant pain and weakness every day is taking it toll on me, but I will continue to fight this battle. I am truly blessed to have my amazing wife Teresa, I honestly don’t know what I’d do without her.. she is an Angel in every sense of the word. Thank you for writing a Reene, blessings to you.
I see you as a positive person fighting ms with all you've got showing others how to pull yourself through day by day you are teaching other's they are not alone thank you
Thank you very much for your kind words, they are very much appreciated. 🙏
You two are certainly a pair - Spiritually as well as accidents! I had a little toe break by running into a vacuum cleaner (!) but kept the foot in a boot for a while, steady, and they mend themselves.
I agree with the rest of your followers, Neil, have your wheelchair seller come out & look how to help you. Perhaps different cushioning (thicker & more stable) may help. Bus drivers have special seats that take the bumps of the road rather than the driver taking the bumps. I would like for you to check out a book on Amazon "Stand Up..." by Ken Cruickshank. He has PPMS & has just started Ocrevus (I know you said this drug may not be right for your condition). But his book is not only humorous with much insight but he will soon be taking a trip with his wife to several places in the U.S. He's got a van that's special for his scooter and traveling. He likes going out & won't let the MS get the upper hand in his life. In Kindle the book sells at a very low price.
Feel good and feel positive - the both of you! It is precious that you have one another. Some MSers are coping alone. Cheers!
Thanks Zan,
Once I’ve built up a little more confidence I’m hoping to take the scooter out. It’s not really the sort that can go on pavements, as it’s a very basic model with no suspension. I brought it primarily so we could take it with us in the boot of the car, so I could perhaps continue going around the super market with Teresa, or just short distances etc. But rather importantly only when I feel I’m not up to using my legs. I don’t want it to be a replacement for my walking.
Thanks for the heads up on the book, I’ve just been on to my Amazon app and found it. I’m going to check it out and read the synopsis later on, thanks for that.
I realise that some MS’ers have nobody and I often say to Teresa I’m not sure what I’d do without her. And I REALLY mean it, I would be seriously in trouble as she does so much for me. She is a blessing that is for sure and I would love her even if she couldn’t do those things.
As always good to hear from you Zan, take care.
Neil.
Neil, I know you think think a lot of your videos are negative, but have you ever considered that just maybe you are reaching even just 1 person that lets them know they're not alone? Now days they want to show all this so called reality tv, give me someone who is being as honest as you any day than those fake shows! If I'm friends with someone I want to hear both the good and bad things in their lives not just the good, and if they have more bad than good days then so be it! Best wishes and hugs! Stay strong and keep up the good work!
Thank you, and yes I felt in the past that a lot of my videos are always negative but as you're no doubt aware this is how the condition effects us. You are however correct, so many people do come back to me and say how they're able to relate in a such a big way because that is how they are as well. So, yes it's a lovely feeling knowing that I am able to help them simply by showing how it really is, keeping it real as it were. Best to you - Neil.
I haven't commented on your last few videos Neil, because I didn't feel there was anything I could say that would help you.
But having seen this video, I now understand how your MS is progressing. All I can say my friend is that I know what you are going through, because my cp has been on the decline over the last few years. I know where you are when you say about having to make certain decisions, but not accepting them. But I got quite emotional when you spoke about not being with Teresa. It's a big thing for you mate. Some days, tou may be ablde to go out together though.
Hi Dean, and thanks. Yes, not being with Teresa breaks my heart because we've always supported each other over the years and done everything together. We're like two peas in a pod. I'm sorry to hear your CP is also on the decline, I really am.. but I know how you are feeling. Rarely do I even get a good day, all I ever find is I can't do this or I can't do that now. I hate it I really do. Stay well my friend.
Hey Neil, I don't think this heatwave does us MS'ers any favours, so will be interesting to see once the temperature drops if there are any improvements - I so hope you do pick up again, and hopefully your back adjusts to being in the scooter, as at least having it means you can still go out with Teresa on your day trips. It will take time to get used to it (physically and mentally) but I think it will help maintain some much-needed normality for you. Take care Neil, and remember we will all be fighting alongside you.
Thanks Laura, we’re enjoying a much cooler day today albeit it throwing it down with rain. I think I prefer the ☀️, lol but then again the gardens are so dry. Hopefully I’ll find some confidence from somewhere and go out on the scooter, but I’m not sure when that might be. I hope all is well with yourself. Take care.
HI NEIL, I HAVE AN IDEA!!! HAVE YOU EVER TRIED A LIDOCAINE PATCH. IT MIGHT BE PERFECT FOR YOUR PAINFUL BACK
I’ve not tried that Joyce, how does it help with pain? I’m pretty sure my back muscles are compensating for my poor gait caused by all the muscles in my legs not talking to each other.
I’m sorry to hear you are suffering so much. Are you still able to feed Cedric and his family?
Hello there Shanti, absolutely! It’s a real struggle getting down the garden at the moment but I force myself. I consider Cedric one of my main priorities. In fact there are so many birds that wait for their breakfast in the tree. As soon as I appear, it’s funny because I suddenly notice “activity”. I love those little birds and they bring me SO MUCH joy to see them. I also fill the bird bath up every morning with water. Have you ever seen the birds bathing themselves, it’s such a beautiful site.
I do the same thing you do every morning. When they see me they flock around and scold me if I’m late.
I have sparrows, wrens, starlings, and robins.
I love watching them take their baths everyday. 🤗
Hi Shanti, it was lovely to read your reply.. I too have the same birds as you plus a few more.. I've not seen a Robin for quite some time until this last week I've heard the distinctive "click click" sounds they make. Sure enough, there's a baby Robin around and they are so lovely. To hear you have the same routine as me in the morning really brought a smile, and yes don't you even think about being late!! lol One of the thing I would really love to do is film each different type of bird in my garden and make a RUclips video.
Neil Bradley I would love to see that, 🕊😍
I know how you feel Neil. MS makes me so angry because it affects not only me but also my wife who - touch wood - is fit and healthy. Without her I would be useless. Keep strong. Tomorrow is another day and hopefully better.
Thank you William, and I understand completely. I’m not sure what I’d do without my wife either, she’s my rock. As I type I can barely walk from room to room, I think the hot weather has something to do with it.
You're right Neil, this hot weather is a killer. A shame, I loved the sun. Now I'm like a vampire. Expose me to direct sunlight and I wither away! I hope it's not as bad for you. With luck, the forecast is right and it will be cooler over the weekend. Take care both of you, Will
Hi Will, I think I'm going to join you as a fellow Vampire! Certainly this year I've not been so good in the sun, where as in the past I've been ok. Yes it's going to be cooler this weekend which will be nice. We've not had hot weather like this in the UK for many years. You take care also, and have a nice weekend.
It is tough remembering how your body should work but MS has its way of leaching ability away.
Hi there Jared, it interesting you should say that because sometimes I get a small glimpse of how I used to be able to walk, only for a brief moment. It’s as if for a few seconds my muscles work properly, then very quickly they forget again. Very strange sensation, brings with it a lot of emotion.
Thanks Neil for your candid video and post. Although many things about M.S. get on my nerves, the one thing that I wish would, is myelin.
Tell me about it John aha!👍
I can understand where you're coming from. Let's make the best of...
This I can relate to😥
i am going to try it on my burning feet.
Dear Neil, I just wanted to send a message to you asking if you are alright and why you are not posting any more videos. Then I realized that I must have unsubscribed from your videos accidentally some time ago.😕 Now I simply want to drop you a line saying that I am quite relieved to see you in a good spirit. Wish you and your lovely wife all the best. Martin
Hi Martin, yes long time no speak.. ah well not to worry at least you’re back now and you realised what had happened. I expect you’ve got a bit of catching up to do with my videos then when you have the time. I’ve passed on your good wishes to my wife, thank you. All the best to you, great to hear from you as always.
You HAVE to find a scooter you can keep in the car. And any mobility aid that gets you from the door of the flat to the door of the car. Make little short practice runs and Teresa can certainly DRIVE you both. That’s sexy
Thanks Gloria, once I've found my confidence to use the scooter in public it will probably be a little bit more permanent in the boot of the car.
sorry for spelling your wife's name wrong! I apologize!
Maybe you can get extra protection for your back so it is a little stabilized.....ask the seller of the scooter or an orthopedic store worker. My wheelchairseller came to my home and we discussed all the things that are important for me to have in my wheelchair und most of them are installed...and it is bright shiny red color! Almost like a Ferrari ;)
Please go to OT and get properly fitted for a power chair, if not for yourself do it for your wife. You then can ride a bus etc. You may want to look at hand controls to drive with.
Thanks Donna, those are definitely worthwhile considerations but before I do I need to build up my confidence with the new scooter before moving up to any kind of power chair. I’m giving thought also to hand controls, or maybe utilising the UK’s Motorbility scheme. Thanks.
Hi Neil, hope your having a better day, my girlfriend Clair was diagnosed with secondary a year and a half ago and ive watched her slowly get worse over that time
Shes been off work since March (part time tesco tills) and is struggling with pain, sleep,and walking..
A month ago she was fitted with a electric pulse (fes) device on her leg , and given a change of medicine, and has now had a month of slowly feeling better..
Please dont give up fella, i know the pain and suffering your going through but maybe there might be some hope in the future with all the medical research going on
Clair is going into work for 4 hrs tomorrow and im so proud of her, a month ago she was writing letters saying how she felt she was slowly disappearing...
Lets hope you get a nice pick up in the near future too
Hi Jonny,
I'm really sorry to hear your girlfriend has been diagnosed with this god forsaken condition, not good at all and it must be heartbreaking watching her decline. I can honestly say I do understand, I'm also struggling a LOT with pain, sleep and walking. In fact at the moment I survive on very little sleep, I grab bits during the day, and my walking is practically non-existent at the moment. Just getting from room to room is very challenging, and then of course you've got to mix in all the pain into all that.
I've heard of the device you talk about, I think it could be delivering a drug called Baclofen to ease spacticity and muscle stiffness. I might be wrong of course, but I'm really pleased to hear she's having a slightly better time recently. Long may this continue for her.
That's brilliant that Clair feels strong and well enough to go into work, I'm so pleased for you guys. It's a long time since I've been to my office, I miss my work colleages some of which working with for over twenty years.
I really do understand where Clair was coming from when she used to write her letters, that is how this condition makes you feel. Everyday we are being robbed of our quality of of life, even now I keep having to tick things off a list I can no longer do, simple things as well. I find it so frustrating, and I'm sure Clair must do also.
Thanks for writing Jonny, I really appreciate you contacting me and telling me about yourself and Clair. I really hope she continues to feel much better.
Best Regards - Neil.
Neil Bradley, hi Neil, hope your feeling ok this weekend and thanks for your reply, I know it bought a tear to Clair's eyes
I know the condition makes you feel like giving up but one thing I always try with Clair is to try different approaches when things get worse.
She's about to start a course of acupuncture(for the back pain) which the ms nurse has arranged, I think the first few sessions are free so we will see how we go on and let you know..
The electrical device is called a fes, it sends electrical pulse down the leg which helps with her severe footdrop..
Another option we are looking at and I know this didn't help you to much but with this new government legislation, cannabis oil?..
Yes I can understand your concerns over the scooter, when we now go on day trips we have started using Clair's dad's wheelchair and the transition for her was horrible, like losing your independence, but these are useful aids to help us get around still and venture out..
Regards Jon
Hi Jon, yes the legalisation of Cannibis Oil was brought to my attention by another subscriber only the other day. I’d not heard the news! I’m very interested and I’m going to ask my Dr about it. Apparently however only certain senior Dr’s are allowed to prescribe it, so not sure how that works.
I’m really pleased Clair is getting some treatment, and the Fes machine sounds good. Sometimes even just a little respite from the nasty symptoms is all that is needed, I’d be interested to hear how she gets on with the acupuncture.
We’re finally having a break from the very hot weather here in the uk, and I’ve been feeling ok, thanks for asking.
All the best to you guys,
Neil.