Ocrevus 3 month update.

Hello all and welcome to so many newcomers to this wonderful forum. Today is the 3 month mark of me being on Ocrevus. I am doing well. I have been quiet hereof lately and am probably overdue for an update on how things are going. I have been feeling a little better as to the severity of my exacerbations. Life isn't nearly as uncomfortable as has been for the past few years. Coupled with diet changes, mainly whole foods, low fat and sodium.oh and cant forget the choclate! πŸ˜‚

One of the reasons I have been so quiet here as late is me adjusting to huge lifestyle changes. It is normal for my personality type to withdraw to adjust to big changes. As far as any ongoing side effects, really hadn't experienced anything out of the ordinary after the initial weakness passed a couple weeks after the second infusion. I am awaiting a date for my next infusion early November. It, so far, is the first dmt I have been able to tolerate.

As far as working towards getting myself out of a bluish state I have been stuck in since my DX in 2014 is working to overcome multiple sclerosis. I have been learning to play the harmonica. I am enjoying it. I am starting to hear the magical words from others "hey you getting pretty good at that" that in itself is a a beautiful thing to my ears. I may not hear all that well anymore but still enough to catch that. πŸ˜† I found a video on YouTube. Of a woman playing an arrangement of Lenard Cohen's Hallelujah on the harmonica. I have been playing I second harmonica to that video. A I played it for some friends of mine a few weeks ago and they wished to record it. I am posting a link to my Google Drive file for anyone whom might be interested in watching me play it. It is a HD file so it takes a little bit to load.

drive.google.com/file/d/0B_...

This has been my focus for OMS! That and being able to share here and this forum.

Love and Prayers

Allen

53 Replies

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  • Oh my heavens!! I just listened to your wonderful video!! I grew up listening to my Dad play guitar and harmonica. He had been playing harmonica for years and he was just ok at playing it. You, my new friend, have been given an amazing talent!! I don't know how long you have been playing it, but you are truly fantastic!! Don't ever stop playing!! It seems to have become a wonderful way for you to not be so stressed with your diagnosis. I truly feel gobsmacked at this wonderful gift you have been given. Play on Allen!! Play on!!! Thanks so very much for sharing that video with us!! I feel very blessed to have heard your beautiful music!!!

  • Thank you so much. It is a miracle I can walk or talk, let alone learning to play the harmonica. Which I have been really playing since November. I am a former Comercial (corporate) pilot/flight instructor. On one of my trips through Chicago I picked up a honer house of Blues harmonica. Being a gituar player myself I decided to give it a whirl. I tried it for a few days and threw it in a box cause it was to hard! Well I was going through old boxes and came across It and since my therapist said I needed to find new hobbies to replace the ones I have lost, I figured what the hey. Being unable to play a guitar very well due to irresponsible muscle control in my fingers, I can still breathe. Last November I decided to try learning Christmas tunes to play so I could make people smile. It worked and I have been keeping after it ever since. I have worn out three harmonicas since November. So that kinda gives an idea on how much time I spend practising. Back to my ability to walk or talk at all. Even Dr Farrow has said himself that he believes in miracles. I have some lesions kind of spottedo ermybrain but those are not the big concern. I have the area where the spinal chord and brainstem meet at the bottom of my medulla an 8mm lesion. I am of a bit smaller stature and that area is about 9mm on me. As soon it has been explained to me it's about the size of the individuals pinky in diameter. How I walk and talk, which at one time wasn't very well at all, is by the grace of God. For I shouldn't be able to. There is the real miracle. I can't thank him enough. Again thank you for your kind words.

  • Allen, I am totally with you on the walking and talking. I have a large lesion in the part of the brain called Broca's area. Broca's area controls talking. I had an exacerbation in 2002 while working on my master's degree. I was taking a forensic computer intersession course at the time. Well, my hubby and I were walking around Home Depot when I suddenly lost most of my ability to speak. I also was teaching nursing at the time. My hubby found me sitting on a box just mumbling incoherent words. He got me in the car and took me home. After getting home, I was able to say 4 words, Dad, dog, stick, and s**t. The latter was what came out the most, unfortunately. Our daughter finally convinced her daddy that I needed to go to the hospital. I spent 3 days in the hospital receiving high dose IV steroids. At the time of discharge, I was speaking somewhat better, yet the words sounded very hollow. I was able to explain to my professor well enough why I wasn't in class on Monday night. I was able to finish the intersession, because it was computer work involving typing. I could type but barely speak. Typing is a different neural pathway that was controlled by Broca's area. I spent 6 months in speech therapy. She had me type general things. For instance, I was instructed to type all thing associated with, say a tree. After typing about all things associated with a tree, I had to practice saying the words. This helped greatly with my ability to talk again. I was able to teach the fall sessions with only a little trouble. I still have difficulty with words I'm trying to say. I used to be an eloquent orator. MS has taken that away from me. I am so grateful for the ability I do have. I can laugh at myself when I say something other than the subject we were talking about. Have a wonderful day/evening. Jacque

  • Wow! Allen5280, I can't believe you just recently picked up and started playing the harmonica. What beautiful music 🎢. Thank you! I love that song, and πŸ‘‚ ng and watching you play it brought happy tears to my eyes. Thank you for blessing my evening.

    So happy to hear you continue to feel better. πŸ’•

  • Goodness! My nohobe aito-corrected the word hearing and inserted an ear! Yikes! Anyway, I hope you know what I meant!

  • My phone auto-corrected! I give up! 😝

  • Thank you so much Tutu. And yes gotta love our "smart phones"

  • Gotta love auto-correct!!! LOLOL

  • Maybe you phone has MS too? πŸ˜‚

  • πŸ˜‚πŸ˜‚ You may be right, Becky63!

  • Allen5280, I'm speechless, and I have not stopped speaking of it since. ( Thank you, Jane Austen for your "Miss Bates" character!)

    The harmonica is such an neat instrument! So many different sounds and moods can be coaxed from it in the hands of a talented musician. You've already mastered it in an incredibly short amount of time!

    Carnegie Hall, here comes Allen! We will all be proud to say we knew you when!

    Thanks for sharing your newly found talent. Isn't it amazing what we can learn and accomplish even after the diagnosis? Thanks for proving that we are much more than just some diagnosis.

    Please keep posting about your Ocrevus triumphs and your beautiful music!

    Are you signing autographs yet?

  • Sure thing and If I were ever to become that good, you wouldn't have to say y'all knew me. It would be that you do know me! πŸ˜† I still have a long way to go and alot more to learn. Thank you for the compliment.

    Thoughts and prayers

    Allen

  • Allen5280 WOW! It's 6.30 am here in the uk. What a way to start the morning off. Incredible. Beautiful. You brought me to tears. Happy tears. What a talent, gift you have been blessed with. Keep it up and keep sharing. This will bless so many people. I am speechless. I will have to have chocolate for breakfast. I always eat chocolate 🍫 when I feel the need to celebrate and this is well worth celebrating. A big hug πŸ€— blessings Jimeka ps, good news on the Ocrevus side as well. You have certainly kicked the ms into touch! πŸ¦‹ 🌈 🍾 🍫 πŸ‘

  • Allen5280 my grandson Harry has just listened to you play, he said ' Amazing '

  • Thank you jimeka and thank your Grandson Harry as well. I feel blessed by your kind words. That and being a reason to eat chocolate! Oh and good morning, I however am looking toward my bedroom thinking I hope I can sleep tonight. It's already late, and counting πŸ‘ doesn't seem to be cutting it tonight! I will say that the accompaniment harmonica is much better than I am. It's a level for me to strive towards. Hope you have a blessed day!

  • It all sounds good to me. I also am getting ready to take Ocrev at the end of September then second dose the beginning of October.

  • Very good Allen! Thanks for the serenade. If this is new for you, your are doing well! Play on, for yourself and I found it soothing to my system as well.

  • I appreciate the sentiments more than I can find the words to describe. Thank you

  • Well done Allen5280 ! Keep it up!

  • I'm going to as long as I am blessed with the ability that's for sure. Thank you so much.

  • That was fabulousπŸ˜ƒ! You couldn't have chosen a better song!

  • 😊 Y'all are beginning to make me blush, Thank you.

  • Allen just listened to your music nicely done🎼🎢🎡

  • 😁 thank you

  • Allen5280 what a wonderful job on a beautiful song! Thank you for sharing with us. I used to be a decent pianist and loved to sing (mostly for myself and in church). Essential tremor and MS have taken those from me. You have given me inspiration to find something else to substitute. Also, thank you for the Ocrevus update. I have had my first infusion and am interested in how others are doing.

  • Finding new avenues is certainly restoring the happiness and joy I had lost for life. Thank y'all for your love and support. It saddens me to hear of your losses and I will be remembering ya in my prayers that you find new outlets to fill the void than can be created by lost abilities. I am pleased to be able to share that so far so good on Ocrevus.

    Thoughts and prayers

    Allen

  • Allen5280, thanks so much for the very encouraging update and for sharing your special talent with all of us, I am impressed! I think it is SO important to spend time cultivating things that can bring us joy, challenge, and purpose. I think that you are on a new path to many more positive outcomes and I am pulling for you. Keep taking care of yourself. :-)

  • Thank you and I am praying all is going well for you as well. If remember correctly you had a little difficulty with your infusions and hope and pray all is going well for you as it is for me.

  • Allen5280, thank you, yes, I had infusion reactions both times which were handled, but made for two very long days. After each infusion I was completely wiped out for about a week, but then got back to baseline. The past few days have been quite good - I catch myself doing little things I haven't been able to do in a long time, and my energy seems improved. It's been six weeks since the second infusion, so still early. My doctor feels it takes at least three months to really be able to start to judge effect. He also said that improvements continue to be seen beyond two years. I'm trying not to get my hopes up too much but am cautiously optimistic.

  • Allen that was awesome. You have used your down time well. Hope the new meds continue to do we'll for you. Have a blessed day.

    Donnie

  • Thank you so much Donnie y'all don't realize how much it means to me.

    Thoughts and prayers,

    Allen

  • Blessings to you my friend.

    Donnie

  • Love ! You are very talented!

  • πŸ˜„ thank you so very much!!!

  • Thanks for the update. God's blessings to you.

  • May the Lord keep and bless you as well!!! 😁

  • Allen5280,

    That was very good and uplifting, It gave me goose bumps! Thank you for sharing! Thank you for the update on Ocrevus, I'm glad you are doing better!

  • Thank you so much, that means a lot to me. And so far so good, I plan on keeping the updates coming as time goes by.

  • Wow! That was beautiful! Thank you so much for sharing your talent as well as your experience with Ocrevus. The responses have been very encouraging so I'm praying for the same. Again, thank you and keep playing that harmonica!

  • I have gone through some really dark difficult days which the emotional Rollercoaster MS has brought along with it. I want to share all that I can in hopes it might, just might help someone else through the nightmare we share. I will be praying with you as well.

  • Great way to start off my day hearing you play! Beautiful

    My husband has his first infusion scheduled for Tuesday. Hope he does as well as you are doing!

  • Checking in to see how your husband has done, Ellabee. We hope his infusion went well. And welcome! I've missed many 'newbies' this past month or so as we've been busy here with family, etc. We hope you and your husband visit often. Looking forward to getting the know you better! πŸ’•

  • All went well with his first infusion. He was a little more tired and weak for a couple of days afterwards, but now is fine. He goes in for the second 1/2 of Ocrevus on Tuesday. Glad to have found you here.

  • I had about 7 days of extreme weakness after the 2nd dose but better now. Wish you the best

  • Thanks for the update, Ellabee. And you, too, Pink-1!

  • Great update! Let us know when you host your own YouTube channel πŸŽ‰

  • Thank you kdali and congrats on y'all's new addition to your family. I have been falling behind on my replies as of lately

  • Thank you!

  • Allen5280 just watched your video and it's fabulous! ❀️❀️Hallelujah is one of my all time favorite songs and brings me to tears of joy every time I hear it. Thank you for sharing it and yourself with us. Lynn

  • Thank you CalfeeChick I am glad it touched you. Thoughts and prayers Allen

  • WOW!!! That is amazing. Hallelujah is my favorite song. You play it beautifully.

    Thank you for sharing it, and thank you for the reminder that we need to find replacement hobbies for the things we

    have lost. Prayers and best wishes to you.

  • Thank you Linda3579, ypur kind words are much appreciated. It has kept me from completly looking my grasp on reality at times. I can't thank ya enough for your compliment.

    Thoughts and prayers

    Allen

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