Hey, everyone. This is Donnarae. I was diagnosed 3 days after Christmas, so I'm a newbie. What a ride! Less than two months later, I turned 53. Some days I'm a mess in my head, and definitely off-balance everywhere else. Chairs, and walls...tables, and countertops...any stable surface suffices, when I need steadying. I am also contemplating getting a cane, just to feel more stable when I'm not in my safe place-which at the moment?-is home. At the same time, we are planning our first road trip since the last attempt, in October. We didn't get an hour down the road, then. We turned around, ended up in the ER that morning, and I was diagnosed two months later. I have signed up for the MS Walk in our city next month. Was that a crazy idea??? I haven't even worked up to walking a mile! Yet.
But, I will. Taking Tecfidera. Such scary side effects listed, but am incredibly happy to report they have been very few so far, and I'm so grateful to be able to take this choice. So! All in all, things are going well. I am blessed with an amazing husband, family, and group of supportive coaches and leaders while wrapping my head around what has become a new path. I know this is a gift, and it's enabling me to find my voice while finding my balance. We can always encourage someone! And...someone is waiting for us. Thanks for letting me say "hey!" I'm looking forward to getting to know more about this path, and your journey. I have discovered this so far: When we lock arms with those who care, we can take the next step, together.
Finding my balance.: Hey, everyone... - My MSAA Community
Finding my balance.
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Hello Donnaraet and welcome. Just be careful doing the walk and hopefully everything will be fine. Again hello and welcome 😀
Welcome to the crazy family of MS’rs😜. Always lots going on, good and bad. That’s why we are all here with people that understand and offer help, opinions, and information 👍Great place to vent or post funny things that we all have to share 😉🙏🐾🐩🐶🐕 Ken
I love that, Ken. Thank you! Empathy in the real sense of the word, with others. That's why I'm here. To connect w/people who totally understand this strangeness. I'm sure(?) it will be easier to feel connected as I wrap my head around everything, but the past few months have been a bit isolating. Of my own accord, yes, but I'm happy to be adjusting a little more, now. :)! Glad to have "happened" on this group!
Welcome donnaraet! Keeping a positive attitude and exercising as much as you can will provide you with an extra boost as you learn to live with ms as a part of your new life.
Tracy, that's exactly my plan. I haven't done much in the exercise area to date, but am beginning to understand the mental attitude is huge! Thanks for the welcome, and tips!
Welcome Donnaraet, it's Fancy1959. You have joined our extended family. You have found a safe place full of some of the most compassionate, caring, and kind people I have ever met. Come, and ask questions, voice concerns, or simply speak to others who truly understand what you are going through. The more you write posts and tell us about yourself and answer post the quicker we will get to know you and you will get to know us. There is much we can learn from each other! Take the time right now to find a post from jimeka. She is our birthday club ambassador. You need to make sure you give her your birthday so she can put you down to be in our birthday Club. Then as families are want to do we will rejoice in your special day with you. I can't wait to talk to you more. Please keep in touch and until we speak again, take care. I would like you to remember one thing, that together we are stronger! Fancy!
Hi donnaraet really nice to meet u from cold snowy (again!) UK xxxxx hope the MS Walk goes well my balance isn't brill but is slowly improving with neuro physio starting Tysabri on Thursday this week. Take care xxx
Hi, Janet! It DOES sound cold there! It's been warming up here, actually in the 80's I think, this week. I'm thrilled it's getting a little cooler this coming week. Thanks! I think it will go well. The route area is lovely, so that's a plus.
Glad to hear your balance is improving. It's the strangest thing how I never know what it will be like each day. Or even each time I stand up. Y'all are pros. Champion on!!
I forgot to tell u im a staff nurse here in the UK and provisionally going back to work on 25 hrs per week in the first week in April. I need to go back for my sanity so onwards and upwards! 🤔🤔🤔🤔🤔
Good for you Janetb1968! 25 hours will be perfect amount of time for work. You are lucky. 😀❤️
Thanks BigMar7 im a bit apprehensive but it's got to be done! Everyone who I work with are fab and I got a lot of hugs last Monday when i popped in to see them all......even the doctors lol! 😁😁😁😁 I might even eventually work upto 30hours over 4 days but I'll see how I feel and I promise I won't overdue things xxx
Welcome Donnarae! I would say... if you’re up to it- DO IT! Pace, do not PUSH yourself. Get as far as YOU can.
GODSPEED!
Love that! Thanks! Pace-don't push. Perfect.
I felt I needed to say something. I WISH I could do more. I find it so hard and I PUSH myself TO THE LIMIT (sadly I’m learning I am acquiring them.. not being able to stand up straight just to wash my hands... and do dishes— hahaha... not.). I TOTALLY APPRECIATE YOU GOING FORTH! Do not give up, it’s a FINISH... NOT A RACE. ((Hugz))
Hi Donnarae, welcome to the group. I also have balance problems and I use a cane when I go out. There are balance vests that are available. You need an Rx from your dr. so a physical therapist can see if it will work for you. In my case it didn't at the time, but I'm going to try again as my testing for it was 18 months ago. Good luck and keep us posted.
Hmmm....balance vests. See why this group is so necessary? I'd not at all heard of those vests yet. But, I am certainly looking to get a cane. I'm using one I got as a souvenir years ago. It's come in very handy today! Do you have a particular cane you recommend?
No recommendation. I just picked one up at the local drug store a few years ago, about $20, and it serves its purpose quite well.
i have found that regular yoga thi chi exercise routine has helped ky balance so that i never need a cane anymore,thank you lord
I picked my cane up as a souvenir of lifetime in April of ‘08 at the Crater of Diamonds. We were on our way home from a very important place, for a very important reason with special people of my life... doing something I’d probably not repeat. The “damn stick” as my mom calls it ((why you using that ugly thing...)). Still use it today, even had it stained <i thought they’d do better>>
I’ve only replaced the tip a few times.
Total price.. cane, medallion, tip=less than $20.
Choose a stick that suits YOU, “glam it up” and make it yours. Have fun, Godspeed Use it at the walk.
Love that, Rongway3! Good for you! I actually was trying to do the same...using a souvenir cane from a cruise to Mexico with my sister. The ladies group we were in at the time decided to have our retreat at sea. I brought it with me to find a base/tip?/whatever it's called, today, but did not succeed. I did find a beautiful purple HurryCane, that I love!! :)! I will still use the Mexico one in the house, and keep my eyes open for a way to make it not so loud-and a little shock absorbent. But, yes! Both are special. Purple is my sister's favorite color and one of mine, as well. I loved it the minute I saw it! And...have heard quite a few good reviews, as well. My favorite color is blue, so my husband handed me a dark blue one right away. I quickly told him no, that made me think of my mom-and promptly the tears came. :(....... So ridiculous right there in the store, as my mom's been gone for almost 7 years! smh... But-near the end, she had a dark blue cane. :/ So, no. I won't be having a blue one. The purple makes me smile!!
Hi donnaraet, do the walk if you are able. Even if you only walk half a mile, or whatever, you will have accomplished something. Try a walker/rollator. I can walk much quicker with one, and safer. I have a tendency to be off balance, so I have more confidence with my walker. I also have a wheelchair that is also a walker. That way I can walk, then when tired my usband can push me while I have a rest. Remember, be yourself, don't worry about what others think and enjoy. Blessings Jimeka 🦋 🍫
Thank you! That's probably a good idea! It would definitely be a smoother walk, I think. And the option to rest is tempting, too. Thanks for all the great ideas! And, I love the last line. That, I'm sure, I'll need to remember often. "don't worry about what others think and enjoy."
We are so glad you found us. Though you have a supportive family, we need those who experience what we experience and who can truly understand the physical and emotional roller coaster we ride with MS. This group of fabulous people has been a godsend during the past year since my diagnosis. I know they’ll be just as helpful to you.
I am very grateful for the support from family, but I was floored by the emotional reaction since the diagnosis. smh. I truly believe you guys understand that. Thank you for already making me feel right at home. I appreciate that so much! Feel like I'm finally able to look forward to making and reaching goals I had put on hold months ago. Very aware of differences, now, but know I'm able to step ahead again. Carefully. With very little stress. But, still moving forward. Slowly. With determination.
Hi I’m ssdw1958 glad you came to join us in this world of the
MSers we are a good group here I was diagnosed in 2004 with MS good luck in your MS walk. Canes are a good thing to have. Have a good weekend.
Hello donnaraet ! Nice to meet you.
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donnaraet Well, I would say hi! But everyne already has. 🤣
Hang in there, ask questions, and know it's ok to be scared here.😊🤗 We all have been where you are, and we all have felt those feelings, one way or another.
J🌠
Welcome to the neighborhood! Keep being proactive! There is lots of experience on this site so ask plenty of questions!
Welcome to our happy family, donnaraet . I've nothing else to add to what all the others have said, other than welcome and God bless you as we continue thus journey together.
Ah, I love that welcome, Texandyroe. I write a blog about Plus-Sized Faith, with an MS addition added, now. My "word(s) for the year are grateful...and unstoppable. I often wonder if I've invited challenges by the selection. Then, know we ARE unstoppable. More than conquerors! And, grateful. "In everything give thanks." "All things work together for good" Thanks for the welcome. You have been a blessing to me today!
I use a Trek walking stick👍 It has a cork handle and is adjustable to height with a shock absorber. It collapses to put in suitcase if needed 🤷🏼♂️ Plus it’s a lot more stylish than just a cane🤗 Mine is a dark purple and black, there’s other colors. Just changed the rubber boot as I have had this over twenty years 🙏🙏🐾🐩🐕🐶 Ken
donnaraet Welcome to this wonderful group! I'm Jessie and I look forward to getting to know you. I was diagnosed in 2006 and had to file for disability in 2008 after a bad relapse. I had never heard of MS until my Neuro gave me the diagnosis after all the testing was over and then info on the different meds to make a decision in a couple of weeks when I came back. There are so many now a days which I am so thankful for. I am now on Tecfidera and I am doing well on it so far, with no side effects after the flushing went away in the beginning.
Again, welcome,
Jessie
Hi, Jessie! Thanks for sharing your insight. My husband and I think I was probably misdiagnosed 20 years ago, and have been "blaming" major things on fibromyalgia. But, also mini stroke, vertigo, vision episodes, etc., and when looking back...it all falls right in line with a relapse. And, *that* makes me leery of how much time has actually passed while having MS, already. The dizziness, loss of much color in one eye, and definite balance issues, not to mention-I'm ALWAYS(not really) running to pee!(sorry guys), point to this new path being a new part of life. The big flare up was in Oct. And these symptoms seem here to stay. Some days are better than others, but there is something every day. I am really grateful for Tecfidera, as well! I got flushing a bit, and a little tummy upset, but nothing like what I had read previous to starting. I tell myself it's a party in a pill! The little shaker sound makes me smile, and I shake each just a little before I take it. It's a reminder to enjoy every little thing!
Thanks again for the welcome, Jessie!
Diagnosis and the start of MS are definitely two different things. The more I talk with people here and find information elsewhere, the more I realize I've probably had MS a minimum of 7 years, versus diagnosis last May.
Difficult to pinpoint, but once we realize what's up, hindsight seems 20/20, right? You know your body, for sure! I remember they were going to check me for lupus way back then, but I think they decided against it. In any case, I do wonder if MRI's had been done at the onset, if the past decades would have been different? Our mindset, maybe. And the steps taken to prevent future episodes as much as possible. BUT, we can't get yesterday back, and tomorrow is not yet here. Today, though? Today I plan to do something that matters! Give a smile to someone who needs one. Encourage a friend who is feeling sick or down. Read a bit from a friend who just wrote a book. Write towards my own. So many little things we can do to keep moving forward in a positive way. That's what I have to focus on. Thanks again for your post, melack01!
Have a beautiful day! <3
7 years ago I was diagnosed with Bell's Palsy in the emergency room. But instead of blurry vision I had double vision. I saw a neurologist about a month and a half later. He wasn't thinking Bell's Palsy because of the double vision. I had been given steroids by the emergency room and by the time I saw the neurologist the double vision was gone. He had two possibilities...MS and a brain aneurysm. Insurance wise I could only be tested for one. A catscan for the aneurysm or an MRI for MS. Because my mother died of a brain aneurysm, we went with that. Test results came back...no aneurysm. He made me promise to contact him if the double vision came back.
I probably would have done the same thing. I'm sorry about your mom. :/ I had double vision a couple times, now....pretty sure it was MS. Yours sounds like it to my non-medical mind, as well.
Dizzy is not something I enjoy, even imbalance is preferable. Together? smh. (but not really...since, you know...it's easier to keep it still. )
Hi. I love your positive attitude! I was diagnosed with MS 2015. I always have up days and down days but with good attitude and exercise is the way to go! 😊 I still have off days when I still can't except it but I push through. I wish you the best. Everyday will be a challenge and very different but with a good attitude and support system we can overcome anything.
Thank you, RoseySawyer! I actually like that you mentioned the "off days". Part of my calling is to encourage and uplift others, and I actually am part of a coaching program, now, helping people reach their goals. A founding member, was facilitating a class, meeting people from all over, but... have stepped back from leadership roles the past couple of months, and have been very quiet (hard to believe, right? ;)) That was completely unexpected for me! I LOVE what I do!! I am also a woman of faith, and my HEART stands on a firm foundation. The Solid Rock! My *head*, though, has been very stubborn after my diagnosis, and there are days when that happiness is hard to find. JOY, I have. That's tucked away and will always be a part of who I am. But, happiness seems to wrap around how we feel, and our circumstances, etc. if we let it be. I know these days are just another way I can empathize with others going through life, but feeling like no one else "get it." I keep telling myself it's just another part of my story. I will be back! Every time there's resistance, and we push back, we are building that come-back muscle. Like a ball, the harder we're thrown down, the higher we can bounce back! I'm *determined* to keep going, to stay active, to not isolate here in the house. We were made to be part of something bigger than ourselves. We each have a calling! I am not about to let MS be a reason to drop mine, but a huge reason to have something to say. I am finding my voice, and if I'm able, I intend to use it! :)! THAT we can do! :)! <3 Thank you, Rosey, for your encouraging message! We ARE overcomers!!!
Hi Donnaraet and welcome! This really is a great group of people and we can learn so much from each other. I use a cane a majority of the time. I bought a Hurrycane and really like it. For me it provides more stability than a regular cane without the bulk of a 4 prong cane. If interested, you can look at it on Amazon. When I’m walking a longer distance I use a walker. I find that it gives me more even support than the cane. I wish you all the best!
Good job! Never stop trying no matter how much you may hurt. I am 57 and have known I had MS for over 32 years. Be extremely careful with Tysabri because even though it brought back my ability to walk my neurologist thought I was coming down with PML. I have tried every MS drug on the market, and because this disease has eaten up my brain and spine I have been told many times I should not be able to walk. I get pledges for the MS Walk even though because they moved the walk to another town I won't try walking in it. I walk as far as I possibly can and my wife of 33 years knows when it's time for me to stop. The only thing I can say is learn your limitations and push the envelope so you keep ahead of this disease. I have seen so many changes in what drugs they come out with and for my son who also has it I hope with the stem cell therapy they come out with a cure soon. You seem to be on the right track and thank you for letting me read about your story. Keep moving and do as much of the walk you can without over doing. The best thing I can recommend is cooling vest because it gives me the little extra to keep myself going.
Hi Donnarae!
So much happening at once, right? For me living w MS reminds me of the GPS voice saying "... recalibrating..." to get on course. I feel I am constantly recalibrating my abilities, my expectations, my plans... Not always a pleasure experience.
Also, I also was hesitant about a cane. But it's great to have when needed. I carry a folding cane in my bag that I whip out as needed. They're about $15 on Amazon. It's an arrow in my quiver
Good luck, and Brava!
Cmokon! That's it, exactly!! "recalibrating..." I loved your comment, and REALLY thought I had already responded. Hmmm... In any case, thank you! I saw lots of fun choices on Amazon, so appreciate the suggestion. It was great to get out of the house today, and go look in person, as well. :)!
Welcome donnaraet . So glad you found us. You’ve found a wonderful group of people that not only talks the talk but walks the walk because we live with MS everyday.
I’m also a man of deep faith. Without God I couldn’t do this crazy life. But with him I can do all things.
Welcome and God bless
Donnie
Thank you, lois52! I haven't yet, but did look into an MS gym online that has specific exercises for balance. We have an appointment next month.
donnaraet Welcome to the group. You will find they are very supportive and informative.
Wishing you all the best on your new journey 🍀🍀🍀
Donnarae Welcome to our group! I hope you are taking meclizine for your dizziness and instability. It helps me tremendously when I get dizzy. That was one symptom I had for 40 years, and had no explanation for before my diagnosis of MS at about age 71. It may or may not help you, but it helps me most of the time. There have been times, during an exacerbation, when it did not help, but usually it does. Take heart also, in the fact that some of us have certain symptoms for a while - short or long, then they fade away. Currently, I am back to my normal self, doing mostly what I want to do, with few symptoms and a good amount of energy. That's a big Praise the Lord!
I have been on Tecfidera for 2 years, and for me the nausea and flushing went away after the 1st month. My last MRI showed no new lesions, so I am happy with that. Biogen is very supportive of those who are on their drugs. Take advantage of any of their Events in your area. The have lunches or dinners at nice restaurants all around the country, wherein a Neurologist will come and discuss MS, and sometimes have a drug rep there also, who can answer questions for you.
Welcome! Not crazy if the pace required is generous...and for a MS Walk, I would expect it to be. Will anyone be walking with you? The weather that day may affect you, so keep that in mind, and good luck!
Thank you! I signed up almost right away after I was diagnosed, then started second guessing that decision as the days went on. Now, I'm a little leery, but more excited and determined to use it as a positive thing. My husband will be walking w/me, and hopefully a few friends, as well. Maybe even my sister. We'll see. One month, today to prepare! I have set goals to walk 20-25 min a day, and a complete mile on one of those days. Turtle slow, but I'm grateful to be walking and don't take that for granted, at all! :)!
LOVE your attitude!! My neurologist had told me more than once that Mr strength and determination has helped as much these past 20yrs as any med. I doubt even start using anything til 3 yrs ago.... Keep it up...