Trying to find ????

Trying to find ????

I'm pretty much new to this site I've been fighting M.S. for many yrs now. My biggest problem now is my walking. When I do go out I use a cane but lately even that's dragging me down. I'm falling over my cane now. It's like my legs just don't want to keep me up. I got a new scooter about 3 or 4 months ago. I've yet to use it. I guess I'm afraid of people seeing me on it. I guess I'd call it pride. So I don't really go out much

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  • Hello tom, I wouldn't worry about what others think do ur thing and most importantly be SAFE, if that means using a scooter so be it. GOOD LUCK in the future!

  • Thanks JB I appreciate the advice. I really do. I guess it's like a little battle I'm having with myself as far as what people think. I need to find a way to just surrender to things that bother me. I know if I can leave my apt just once with scooter things will fall into place. Thanks again. Hope to talk again. It really does help to share with others. Have a great day

  • Hi Tom, I was like you but there is so much out there that you are missing. It took this site for me to realise I am normal, but I have ms. Remember God doesn't give you anymore than you can handle, and there are many more out there that has a lot more to handle than us. I too am now finding walking with a cane a challenge but I got a 4 wheeled Walker and it gives me so much more confidence. I tried a 3 wheeled one put they can tip over. I can walk further, and it folds up to go in the car. If you have got a scooter, please get out there and use it. I am hoping to get one so that I can take my dog for a run. I have a trike but it's getting harder to peddle. I personalised my trike with a number plate, 'Freedom' people were so busy looking at that they forgot about me. Plus getting out there, the fresh air will make you feel much better. Blessings Jimeka 🌈

  • Thanks jimeka I hope I'm saying your name right. I'm really hoping joining this site works for me the way its working for you. I get so mad at myself sometimes because I do stay in to much. I feel like I've lost alot of friends do to shutting myself in my apt. Thank god for facebook at least I can keep up on things. I'm so happy that I received a few replys from my post last night. It gives me more reasons to stick with this site and really try to get to know people on here. Thanks again jimeka hope to talk more keep smiling

  • Hi Tom, I have read all the replies you have got so let us all know how your first outing goes. Remember, we are all routing and praying for you, and as you said to me, keep smiling. Enjoy, Jimeka.

  • I agree. I had a debate with myself about this type of thing. I could feel ashamed and isolate myself or I could accept myself. I chose the latter and decided who cares what others think, life is too short!

  • Hi tombouy46 welcome to our wonderful chat. Even if it's for the Monster they call MS.

    Well, bad legs, bad! :) l think we all go through that at one time or another. Sometimes they come "walking" back, other times they don't. And lm sorry your's arnt.

    Living with this has taught me at least 2 things.... 1 wake-up and be prepared for what ms is going to throw at me for the day, and 2 LIVE as if it's my last.

    It doesn't matter what other's think, and if they ask, tell them. We arnt contagious. And ppl are not informed enough, so use the opportunity. You might be surprised :)

    Hang in there Tom and Live YOUR Life! Not there's :) Welcome again

  • Hi jes I'm happy I decided last night to send the post I received a few responses and that makes it much easier for me to continue chatting. And yes I do have to stop worrying or thinking that people are talking about me and scooter. I live in an apt bldg and they all see how much I struggle walking around the bldg. I'm sure it would not shock anyone to see me riding my scooter. I want to thank you and the others for making me feel welcome. That's so huge for me. Thanks again and hope to talk again

  • Hi tombouy46 lm so very happy that you decided to post also :)

    You will find here that we are very supportive and friendly, we also talk about pretty much anything and everything here. But most of all give each other Support :) We are all in this TOGETHER and we get it. If one person doesn't have the answers someone else might.

    Ps... This is also a very safe place to vent ;)

    Please let us know how you make out with your scooter :)

  • Good morning, tombouy46. I am happy you found us and hope you find us a fun and caring bunch of people you'll soon come to know as friends.

    I understand the walking and pride issues. I struggle with them too.

    I wear a heavy-duty AFO on one leg, and a lighter one on the other foot. Being a guy, you probably don't understand 'pretty shoe envy.' My self-esteem gets dinged a little more each time I lace up my not-so-pretty shoes. But then I remember that I can still walk, and for as long as I am able to do so, I choose to focus on my thankfulness for that instead of how I look or how I lumber (ungracefully) down the street.

    I have forearm crutches. Lately I've used only one, but as you described above, it is getting harder to pull myself along these days. My left leg, my stronger one, has weakened considerably this past year. I dread going back to both forearm crutches, but I believe I'll have to soon. What I really want is a grocery cart! 😉

    Please don't allow your pride, or embarrassment, your not wanting to draw attention to yourself, or whatever you want to call it, keep you from getting outside and enjoying life beyond the confines of your home. As long as you are able to do so, get out! I feel that even a walk outdoors lifts my spirits. And I've found that most people smile or say hello back when you take the initiative to say hello or smile at them first.

    Welcome!💕

  • Hi tutu I'm syked I went ahead and posted last night the replys I've received back are so awesome. Really gives me the arms open feeling. It must be kind of tough walking with those type of crutches by listening to you and other folks on this site about useing the scooter your giving me more confidence to just get on it and maybe go down to the mailboxes. That way the initial shock will be over with. And should get easier thank you so much. Hope to talk again. Keep smiling

  • I'm so happy you are encouraged to get out. Your mailbox is a great start! Don't be afraid of questions or stares. Just smile, wave, and as I think Jes said, look at it as a great opportunity to share about MS.

    Anxious to hear how it goes! 💕

  • Tutu, A grocery cart! it would be perfect, wouldn't it? feels so stable and safe!

    I actually picked up an old jogging stroller this fall. My idea was to have something to hold on to while walking our little schnoodle (schnauzer/poodle mix) around the neighborhood. I fell last year and broke my wrist while walking him. I don't feel safe, even with my new AFO, walking him anymore. I'm sad to say that I haven't used it. I joke to my husband that I don't want to be "the crazy lady pushing an empty stroller" but I think that IS really why I haven't used it yet. I need to not care what people think or wonder... now if I put a doll in the stroller...that would really give them something to talk about!

  • You made me laugh, Lois52. 😁 Yes, we all might take a second glance if you pushed a doll around in your stroller😉. Then again, I'd better not say anything. I find myself doing and saying things today that I would have laughed at pre-MS.

    Yes, I think we ought to both pick out some brand new shopping carts and take an evening stroll down YOUR neighborhood with them. 😉 But who knows, aside from finding a place to store them, they might become the new best thing...next to jogging strollers, that is!

    Don't jogging strollers only have 3 wheels? It's been a long time since I've seen one. Maybe I'm thinking of the first ones that came out way back when-when my kids were little. But if they do, would they be that stable?

    I say use it! If it's stable, comfortable, and at the correct height for you, it's probably better suited for sidewalks and the road than a walker is. Tell us how it goes! 💕

  • Lois can you strip it down so it doesn't look like a stroller. You will still have the frame, and you could dress it up how you want it. If you make a good job of it, maybe even patent the idea, there are plenty of us on here who could use one. Just food for thought, blessings Jimeka

  • Perhaps a seasonal theme would be fun!

  • Half the time in my neighborhood there's a small dog in the stroller😄

  • A couple came walking down our street with their parrot in one! They loved taking it for walks.

  • Mutter to yourself and that would complete the picture. If the stroller makes you feel stable and safe go for it! If it keeps you moving it's great!

  • Hi Tom, I have been using my walker for 11 yrs now, but I'm still walking. I fell on my face with my cane and decided to try it. It was and still am sometimes embarrassed to be seen with it but "oh well" it is what it is. It's getting hard to put it in my back seat of my car when I go out so I feel very limited as to what I do outside of where I live. I use Ampyra for footdrop, it has been helping me . My Doc wanted me to try Aubagio but I am waiting and watching via this site to start it. So how is the Lemtrada anyway ( did I spell that right?) I wouldn't mind a scooter but I don't know how that would work for me and my Honda and until I move, no way to get it in where I live now. In someways if I used a scooter , I would feel I'm giving up on walking + I'm not ready yet. sometimes I sit on my walker and roll.....Elle 37 yr. veteran

  • Hi elle so happy to hear from you and other members today. It makes it much easier to talk about things when you know the other folks know exactly what your talking about I'm also on the Amprya I've been on it for awhole now. I'm really not impressed with the Lemtrada I went for 5 days straight in July 8 hours a day It's a form of chemo it wipes out your immune system I'm on a 5 yr study trial I go for blood work every month for the next 5 yrs and each yr I have to have the infusions again. It just makes me so dam exhausted all the time. I think what you said about giving up on walking if I use the scooter is so true. I've thought about that many times. Enjoy your day and hope to talk again. Thank you so much for your insight and just being open and honest.

  • Hello there!

    Oh boy do I know what you mean about being embarrassed about using the cane or any other assistive device

    Part of having MS is acceptance, and dealing with our new limitations. Sometimes that's harder for some people than others. I still have alot of issues with this. I too fall often, and use the cane when necessary, but hate the questioning looks that other people give you, i don't feel like expaining. Just wanted to let you know I get it.

  • Hi, Twistedstitches, Hmm, "fall often, and use the cane when necessary. . ." When is it not necessary? I used to facilitate an MS Self-Help group & if a member was hesitant to use an assistive device, my response would be, "You wear glasses to help you see, why not use a cane/walker/scooter/etc.?" I went to a scooter to save my front teeth ~ they cost a lot of money (caps) & I wanted to preserve them. That usually elicited a smile. One thing I try to do is use humor and a positive mental attitude. They usually work for me, right? Not trying to give you a bad time, but there are times we all need a nudge.

    Take care & see how much more secure you will feel using the best device for your needs & don't let others' questioning looks bother you, please. Think falling would elicit more questions (Is she drunk?, Do I go over & help her up?) than using a device. Jist sayin'.

    Bea

  • You are absolutely correct, just being stubborn. Although, I ate my words this week when my legs buckled and gave out from under me. Doing a "Face Plant", in the middle of the hospital was far more embarrassing then using the cane. So lesson learned, and thanks for the kick in the butt.

  • My favorite Aunt was 90 years old and was too proud to use a cane that she really needed. She fell and broke her hip and was never the same. I learned a valuable lesson from her and use any assisted device that I need. My husband and I just celebrated our 50th Wedding Anniversary and I rented a scooter for the first time and toured the 14 acre Polynesian Center on Oahu. I would have missed this beautiful experience without it.

  • Sorry I Vanished For Awhile. I just get so disgusted with the way things have been going. I started that Lemtrada back in July and I haven't felt good since. It's a 5 yr study but I'm done with it. I can't handle the way I've been feeling since starting this med. I haven't told my doc yet. I'm sure they won't be happy. But this is my life the m.s. is bad enough but to go through these treatments and only feel worse. I can't handle it anymore. Is there anyone else out there that's doing the Lemtrada treatments.

  • Well lm glad you found your way back to us tombouy46 . Sorry the Lemtrada was making you feel so sick.😞 I'm not on it, but I'm pretty sure we have friends here that are.

    You really need to tell your Neurologists that your not taking it anymore though. Hopefully you both can come up with a better DMT. ☺

    Are you getting out more? I hope so!

    ~Helpful Hint~ If put an @ in front of the person who your addressing, they will be notified. IE @ jesmcd2 *With No Spaces*

    Jes🌠

  • Want a laughter guys and girls? Today I went to Optomologist . So after my sister and I descided to go to Target. Well their scooters had been stolen but they had this big buggy where adults/children 35-310 lbs can ride. The rider (me) faces forward to the pusher (sister) . Sorta like a baby faces when in a buggy. Well my driver wasn't so good. She pushed me into things, knocked down clothes! Then we went to the facilities. She pushed that thing into the handicapped stall so far it I could hardly get out! And you know with MS it's a emergency NOW! We laughed till we cried. When we were leaving the store, I asked a young dude working there if they were getting scooters again , he didn't know, I told him I just can't come back that the buggy and my driver just were not acceptable. And I noticed that the police had a unit up on stilts in the parking lot (think silo), what was that about? (I'm thinking police did for protecting during holidays???) Nope it was for Black Friday!!!!! I think it is time for a electric wheelchair !!!!

  • Hi, Angie, The visual you described "turned my tickle box over," as my Texan Grandmother would say. Good sense of humor ~ I like it!

    Bea

  • Too funny, AngieRowe! I could picture it all.

    Hmm.. lois52 ... think this might work instead of us walking through your neighborhood with the 2 shopping carts? I get to push first!! 😊

  • Attention Target Shoppers... Be on the look out for 2 crazy ladies running away with a cart, as they are knocking everything over!!!!! :) :D:)

    Behave Tutu and lois52 hahaha

  • We can all relate, Tom! I've needed to use one of those electric carts when shopping a few times, but couldn't quite bring myself to do it. I think, and please forgive me for being so frank, that I associate those carts with very obese people. Even though I'm very small, there was that silly perception. I've used a cane during this, my first relapse, and though I felt strange using it, I knew I'd be safer with it. I think I was less worried about what others thought than I was at looking at myself so differently. Am I disabled?? At my age?? I'm coming to grips with the realities of this and want to enjoy as much of life as I can while I can.

    I think when you use that scooter, it will help you fight depression, which is an unkind enemy to us.

    God bless you on your journeys out into the fresh air. Hang in there. We are cheering you on from our many places on the globe!

  • I use a cane most of the time, but I have a four wheel walker, a scooter and a pair of hiking poles. I use whatever level of help that I need that day. I too was embarrassed when I first starting a cane. Now I don't care what others think. Some people go way out of their way to help me and others hurry to get in front of me. I just go at my own pace and when I get there I get there.

  • Robert, A man after my own heart! So glad you have an arsenal from which to choose. Your positive attitude is admirable, too. Keep it up & don't forget to smile as you know something they don't ~ freedom to choose. Bea

  • I appreciate the post you made and the comments that followed. I am reaching the point that I will need an assistive device before long so the conversation was relevant. It's easy to think I don't care, but not so easy to head out the door with a mobility aid. But I do know that I do not want to be a prisoner in my home (even though I love my home).

    Keep with this site. I have only been here a few weeks but everyone is great!

  • Hi, TomBouy, & welcome to our group. I have PPMS & was dx'd 2/17/89, having leg spasticity as my major symptom. I'm wheelchair-bound, but I used a three-wheeled scooter for years & loved it. My initial reaction to needing something more than the walker was "Wheelchair ~ Aw, Scooter ~ FUN!" When I would use my cute scooter to go to a mall to shop, I was the envy of little boys! They'd grin & I'd smile & tell them "Hi!" Felt I'd made their day. Try to get out there, it's a beautiful world & you need to share yourself in it! Seems your legs are telling you, "Take the scooter out!"

    Bea

  • I am new here too...was diag july 2014 and I too have walking issues and right side weakness...dont use anything to walk though and I still work cleaning houses but it makes for some interesting days... :)

  • Waving to Takersgals welcome to our amazing chat. :) l hope you find it as informative and fun as we do.

    Please jump in at anytime. I think here we all find that it's our "safe" place. I know l do :)

    A place to make awsome friends and l know someone is going to understand where the heck lm coming from.

    I hear ya about the right side weakness, oh how much l love when it hits outta the blue to ugh lol :)

  • tombouy46 have you gone to the mailbox yet, using your scooter of course :)

  • Yes I have. Haven't left the bldg yet though. Lol. It's coming

  • Hey tombouy46 long time no see!☺ How have you been? What have you been up to? Inquiring minds want to know!☺

    J 🌠

  • Good evening Tombouy46 it's Fancy1959 sending you a warm welcome to enter and join our amazing chat room. First i would like you to understand you are surrounded by many individuals who find themselves façing similar or the same challenges you are. Once we enter this chat room we find ourselves surrounded by friends and what we call our extended family. We check our pride at the door, let our hair down, and talk about what is bothering us. With your post, you have generated an amazing 30+ posts. Someone in that number will reply to your post and will give you a suggestion that makes a light bulb go off in your head. You need to understand that there is no shame in you're being attacked by MS. We have no choice in this matter. What we do have a choice in is making sure that everyone knows we are the same person we were before the attack. We set up as straight as we can, we talk as plain as we can, we interact with everyone as much as we can. What is missing is not our fault. It is MS's fault! To hide away because you deem yourself not the same person you were prior to MS attacking you, you allow MS to win.

    That doesn't help you it hurts you. People who look at you strangely or think you're diseased now and are not worthy of your attention. Your true friends will understand and quickly get used to seeing you in your new wheelchair. Why don't you go to your large box store or supermarket and ride around on one of their wheeled shopping carts to get the hang of riding yours. You could even make sure the first few times you go out with the plan of riding in your motorized scooter or one of the stores you take some support with you to make you feel more confident. Family friend, or relative, or perhaps somebody else you know with the MS who also use be great choices to go with you. If you ride with someone else and his scooter next to you it would help you to get over your insecurities about being in your motorized shopping scooter. Personally I love them. They are fun to drive and they sure save your legs. When people see me the first time in one and look at me all aghast and ask me what's wrong I simply tell them I'm sick but I will not let it stop me and I'm still getting around on my own. Instead of people making me feel self-conscious, most of the people I encounter are so proud of me and expressed that to me because I'm still getting out and around by myself. Those people who treat you as disease or don't want to be around you as much because of your MS are not worthy of your time and effort. If they attempt to call themselves your friends understand they really aren't. We are your friends and we would love to have you as part of our extended family. I would like you to remember that together we are stronger. I also want to invite you to become our newest MS Warrior. As an MS Warrior we never give up and we never give in. We simply continue to fight on. So to you Tom I want to tell you to fight on, MS Warrior. Fight on!

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