Dealing with MS for 25+ years

[TonyiaR7]

Hello to everyone! I've had had MS for 29 years. I just like to know tsome people are doing with secondary-MS through the years. I recently had a flare up which left me unable to walk very well; ridgidty and more spasms thus more pain. How are others dealin wtht their symptoms? I played oboe but I think I will not be able to continue or work in my garden either. I am a retired engineer; unable to sit or stand long periods of time.

[Fancy1959]

Hello TonyiaRobinson7, it's Fancy1959 welcoming you to this amazing chat room. Boy, do you have a beautiful smile. In response to your post I too have secondary progressive MS. I have spacicity in my leg and pain in my hands and forearms but the Gabapentin high-dose I take makes that pain manageable. Have you gone in for assessment and worked with a physical therapist? They can do wonders and get you started back up on your feet. It is essential that you fight like crazy to get out of and stay out of that wheelchair. Once you become wheelchair-bound your muscles will start to decline and from there it continues downhill. So Tonyia, fight fight fight like you've never fought before in your life. I would imagine the idea of physical therapy up or you have done physical therapy in the past. You need to continue it again quickly before you become wheelchair bound. If your disagree with this or doesn't want you to do it find a different neurologist and get a second opinion quickly. Or the man that's your neurologist right you a script for physical therapy but anyway you have to get back to a physical therapist. I am only a post away if you need to talk. Remember together we are stronger. Please keep in touch and let me know what is going on with your physical therapy and your progression out of your wheelchair. Until we speak again please take care.

[agate in reply to Fancy1959]

TonyiaR7 aRobinson7, I've had SPMS quite a while--diagnosed in 1980 but symptoms came on in a big way in 1978. I'm doing better now than I was then but it's only because I've somehow learned to get along with it. I used to play the piano--gave that up in 1981 because I lacked the arm strength and coordination. Later I learned to play the recorder and did that (not in public though--I just wasn't that good) at home for about 10 years. But I gave that up too about 10 years ago because my hands can't do the fingering (arthritis in my hands). Also, some dental work makes it hard to produce a decent sound. But I still enjoy listening to music. I hope you won't have to give up your oboe playing.

I used to garden too. Since about 1980 my gardening has been limited to indoor plants and a few out on a balcony or patio, in containers. I've learned to pare my life down so as to get along with the MS. Others forge ahead anyway and don't mind paying the price in the form of some bad days spent recovering from overdoing.

When I'm tired, I rest. That has been one of the hardest things I've had to learn--to leave a task undone even if it has to sit there undone for days.

I'm sure you'll be able to find some workarounds for the things you really want to do. I hope I've answered your questions.

[TonyiaR7 in reply to agate]

Yes. You answered my question partially. I am having more difficulty having to stop or slow down playing oboe, played since I was 12, and already gave up playing in orchestras. Then I played more baroque music, chamber groups/solo work, and baroque orchestra. Making reeds is more exhausting than playing the instrument. Oboe/music has always been my friend. And I even majored knee Music And Math, physics in college. I miss them both - the limitations this disease has on my creative side. Finding new things have been hard to do. Thanks for responding and sharing your experience

[TonyiaR7 in reply to agate]

Yes. You answered my question partially. I am having more difficulty having to stop or slow down playing oboe, played since I was 12, and already gave up playing in orchestras. Then I played more baroque music, chamber groups/solo work, and baroque orchestra. Making reeds is more exhausting than playing the instrument. Oboe/music has always been my friend. Especially when rascism was so bad as a child or when my husband had kidney failure.nd I even majored Music along with math in college. I miss them both - the limitations this disease has on my creative side. Finding new things have been hard to do. Thanks for responding and sharing your experience. But keep charging ahead .

[bavery207 in reply to TonyiaR7]

TonyiaR7 I read your post with a sense of kinship even if I am 66 and, have been diagnosed a little less than 2 yrs. ago with PPMS. I used to play piano and in middle/high school I played the oboe. I did not continue with oboe in college, but I continued piano lessons while majoring in math. I have a severe tremor so have had to give up my piano (although we haven't sold it yet), and I was able to teach for 37 years before I had to retire. I don't know that I can give you any advise as I am a relative "newbie", but I have lost my piano and my voice is shot (I also loved to sing), but I haven't lost my determination to fight so I don't lose much more. So as others have said, keep fighting!

[TonyiaR7 in reply to bavery207]

Thank you,

Yes I am slowly my voice to sing; I love to sing, try to imitate my mother who has a beautiful voice even at 83. Music was my passion, is still my passion. I guess I will be listening more. I lost the ability to play oboe so many times. I found nice oboist and musician friends who helped me stay on par. I look at my instruments, piano, son's harp. Many nice memories, esp when my sons, one played oboe with me and the other played the harp. I arranged the music, and despite their complaints about playin together, they gave me comments to incorporate into the arrangement. As a present, they playedit with me in church offertory. Nice memory. I will keep fighting as I have done before. Just getting tired.

Thanks again!

[TonyiaR7 in reply to bavery207]

I am fighting but right now I am tired. Will play a trio sonata on Sunday, Fathers Day, God willing. Finish leading last book club meeting for church this June 2017. And back dealing with this disease which seems as an inconvenience at times. It is so demanding. More apparent being an empty nester. MS is not the auto-immune disease I have to manage. Just tired. Need a break.

[WAshingtongirl in reply to TonyiaR7]

I think you said it perfectly TonyiaR7 - you need a break. It may be time to cut back on commitments.It's hard to say 'no' and feel like you are disappointing others, but you can't be of any help to anyone else if you run yourself into the ground or into a relapse. Praying for you...💕

[Hidden in reply to WAshingtongirl]

I believe you are right. But I feel like a burden when I cut back on commitments. I had to let my book club have some else takeover Monday. I feel quite selfish. My husband said " that I can't even take care of my things" the other day. I know what he was trying to say, but those words hurt. I am use to doing. And this year hasn't been one of doing for others. Just scared about getting off Fentanyl to another opiate that is suppose to work better on my nerve pain. I'm sleep deprived. Loss of appetite. My social calendar is follow up visits. I feel all I do is take care of my disease. I've been diagnosed with Lichen Simplex and managing that disease , another auto-immune disease with no cure has just has been too much. I am tired. I need a vacation. But none can be planned.

I am very blessed. God has provided for all my needs and I have a terrific supportive husbands, adult sons who try to help, supportive church family and friends and now my MSAA community. I need a break from the medical community even though I have caring team. So I am blessed. I couldn't ask for more. I just want time to enjoy myself and be uplifting to others.

Yes last music commitment. That is for sure. No new performances of any type until fall. Take time in my garden . And be nicer to myself and others.

Thank you

Tutu

Tonyia

[Hidden in reply to Hidden]

My name went from TonyiaRobinson7 to OboeGirl. Same person

[TonyiaR7 in reply to Hidden]

I am following your nice, kind decision. Less commitments. Even cancelled one. Broke my heart. But I am grateful.

[WAshingtongirl in reply to TonyiaR7]

Enjoy your garden. Find what you CAN do and enjoy that. Reinventing ourselves is never easy, but I find focusing on what I can do helps lessen the pain or loss of what I can't do anymore. Some days I have to try harder to do that. Enjoy your weekend! 💕

[TonyiaR7 in reply to WAshingtongirl]

I had a wonderful weekend! I hope your weekend was good too! Happy Father's Day to every one who celebrates this holiday and honors their dad.

I prepared and emailed the discussion questions for my church's book club. Stayed out of heat/humidity. Our performance of a Loeillet trio sonata went well; I love playing with my oboe student. Our Music director at church is so accommodating to my needs and talented; he was other musician (piano) for the trio sonata. Celebrated Father's Day with my loving husband and youngest son. What a glorious weekend!

[TonyiaR7 in reply to agate]

I am slowly resigning to house plants and full plants on deck. I have a many perennial garden beds. Two years ago I entered into a garden contest through Philadelphia Horticultural Society. They were quite amazed. Now I can't believe I can hardly maintain a bed in my front yard. Even my house plants of Clivia, orchids, and misc. seems overwhelming at times. Just very down this spring/summer.

[agate in reply to TonyiaR7]

TonyiaR7 , you sound like a very accomplished gardener as well as a musician! My attempts at gardening and music weren't at nearly the level of yours when I was able-bodied but it was hard to realize I could no longer play the piano, and after I'd learned the recorder, I eventually had to realize my fingers weren't up to the fingering, and still later I lost what ability to sing I ever had. Now I can't even carry a tune. It's great that your mother has a beautiful voice still at 83. Maybe I can get my voice back but I doubt it. It was never solo-quality but I held my own in singing groups. I still like listening to music though. Guess we do what we can!

[TonyiaR7 in reply to agate]

You be surprised with your voice. Working with a speech therapist for articulation, projection of voice and breathing can do wonders. My mom even had several voice lessons, - sounds better now than at 75. If not, just hum and listen especially to live concerts when possible. Singing in the shower never goes out of style. As long you enjoy it, that is the most important about music and the arts.

[agate in reply to TonyiaR7]

Yes. One great thing about the Internet is that whenever I'd like to hear a particular piece or song I haven't heard in a while, I can Google search it and find it right there, often in several versions. No more rummaging around in my collection of tapes and CDs or wishing I had a recording of something. It's all right there.

[TonyiaR7 in reply to agate]

I tend to forge ahead, and recouperating a few days. Lately I have been doing less of that method. Too draining and recouperation period is longer than I like , thus miss out on other things. Everything in moderation.

[TonyiaR7 in reply to Fancy1959]

I updated my bio. If it wasn't for Physical, Occupational, Speech therapists , yoga, me being athletic when I was young and much prayed I would have not be in the shape I am in and accomplish so many things like cycling for a mission, gardening (entered into garden contest) and the best - do some sports with my sons - help one son with soccer, throw lacrosse balls. I have neved been in a wheelchair unless we wanted to conserve my energy in a museum or a tour.

But thanks for your advice. I agree with you whole-heartedly. Must keep moving.

[TonyiaR7 in reply to Fancy1959]

Yes, I signed up to work with physiologist in a Medical Wellness Center. 12 sessions analyzing and building a routine for me. Then join a gym with physiologist/personal trainers. I have severe nerve pain. I have tried high dose Neurontin, well I was not able to tolerate more than 400 mg 4x day. Tried lyrica and ended with blurred vision, and cymbalta made me very depressed. They started me on the opiate route which I feel ashamed and regret. So we are going to try to get me off of high does Fentanyl for a different opiate (less medication). I am not looking forward to this. I feel ashamed and embarrassed that I took opiates and didn't try harder with Neurontin. But I was working/driving at the time. Not feeling good about myself. I just suffer from from full body nerve pain.

[WAshingtongirl in reply to TonyiaR7]

I'm sorry you feel ashamed and embarrassed about having to take pain pills, Hidden , but it sounds as though you and your doctors have tried other meds to help you with your pain. I don't suffer with pain like you do. But I know many here do. With a chronic disease like MS, I know we have to treat our symptoms differently than someone with an acute problem would. I don't have an answer for you, but I'm praying your doctors find the best remedy for you, and that you are able to function and live your life with joy rather than regret. We understand...sending you a hug. 💝

[TonyiaR7 in reply to WAshingtongirl]

I needed that hug!

[TonyiaR7 in reply to Fancy1959]

I am doing my best to staying out of wheelchair. Constipation is already bad. (Smile). Plus I love being ambulatory on my two feet. That is why I had a bunionectomy and adressed my meniscus tear/and osteoarthritis in my knee. I didn't exactly get the results I was hoping from the surgeries/PT but better than before. I feel like I have been premature aging for quite a while.

[jimeka]

Hi Tonyia, Fancy is right you do have a beautiful smile, don't let ms rob you of that. It's very frustrating having your life taken away from you physically but it doesn't mean your life cannot find a new direction. Been an engineer you must be very bright so use that brain that God gave you and come up with something that will challenge yourself. CalfeeChick is a great example of this, has you can see from her posting of her crocheting that she does, she blesses so many people with her work. Have you tried a stationary bike, see if you can peddle, Thai chai, Pilates, just a few examples to keep your strength up and they can be done in the privacy of your own home. Let us know how you get on, blessings Jimeka 🦋 🌈

[TonyiaR7 in reply to jimeka]

Do some yoga, some oboe - enjoy teaching - gives a sense of accomplishment. Try to clean up some garden beds. Still active with church youth group. May have to revamp my hand built ceramics. I did try crocheting several times, but doesn't keep my interest (focus). But like doing our church book club. I can do this from my home. Makes me feel good; still learning, interacting with a group of women, enjoying the books.

[erash]

TonyiaR7 Nice to meet you. I believe I also have secondary progressive MS. What it means to me is that each day is an adventure I never know which symptom will show up that day or what new things will challenge me. Glad you've joined Our group

[TonyiaR7 in reply to erash]

I'm glad to join the group. i had rough day at PT today more mental. I was doing very great and then one day had some freak falls . It's like I am starting from scratch. Spirits are low. Yes I know - one day at time.

[TonyiaR7 in reply to erash]

Thank you for the welcome. Sorry I haven't been in touch. But I was doing physical therapy from a bunionectomy and meniscus Tear in my knee.

[Morllyn]

Welcome to the group!

There are many people here who have had MS for decades so we can empathize with you. Many newly diagnosed also.

I hope that you get what you need from us, we are a pretty knowledgeable and fun group.

Nice picture!

[TonyiaR7 in reply to Morllyn]

Thank you!

[greaterexp]

TonyiaR7 , I'm so glad you found us. This chat room has been such a blessing to me and so many others. I can't help with SPMS questions, as I'm relatively new to this adventure, but you'll find lots of support and ideas here.

[Jesmcd2 CommunityAmbassador]

Well lm just going to wave hi from over here, cause they have said it all TonyiaR7 ☺ welcome to the MSAA Community 💐

Jes🌠

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

[Eleyne92]

Good morning, TonyiaR7 , it's a pleasure to meet you.

I'm sorry to hear that your MS is causing you so much discomfort. Hopefully, you and your care team can find some things that relieve some of your pain and spasticity.

Don't give up what gives you joy if at all possible. Even if you have to take breaks or only garden or play your oboe for short periods, find ways to continue doing them. For me, moving, standing, transferring from one sitting place to another, anything physical (within moderation) helps the stiffness and takes my mind off of some discomforts.

Eleyne

[CalfeeChick CommunityAmbassador]

Welcome to the group. They are really great caring MS family. Your life & experiences are impressive for sure. Looking forward to getting to know you better. Lynn #CalfeeChick

[CalfeeChick CommunityAmbassador]

Hello and Welcome!! I'm only a year into this MS journey and learning more everyday Please feel free to comment, question or have a rant. Everyone here is fighting the battle and here for you. I'm Lyn aka Calfeechick 😊

[kdali]

Welcome Tonyia! I'm Kristi, a newbie to MS, so I can't give you the insights you are asking for. I will say your shame over taking opiates makes my heart hurt, and I would love for you to explore just how damaging the pain experience is on the brain, immune system, how it slows recovery, etc. I know people have their reasons for this shame, but I hope you can find acceptance and peace with it...you've got so much else to be stressing out over anyway!

[TonyiaR7 in reply to kdali]

I just feel like legalized drug addict. Scary to possess that medication. But your perspective is absolutely right. My husband says the same thing. At least i'm living, and that is worth much - blessings.

[Hidden]

Hi @OboeGirl, I'm a retired engineer and played the clarinet in school. Just one reed so easier 😀, though I played with a #4 1/2 reed . I hope your day is going well.

[TonyiaR7 in reply to Hidden]

I started on clarinet. Boy! #4 1/2 reed. You must have great embouchure and produced a warm, beautiful sound. 3 to 3 1/2 was good enough for me. But double reeds are a humbling experience. I thought I playing modern oboe was challenging. I tried to play baroque oboe, boy! What an experience. I have seen and felt better other days. But nice to meet another engineer/musician. Do you still play clarinet, since you left school? What type of engineer? Have a nice day!

[Hidden in reply to TonyiaR7]

I degree is in mechanical engineer. I spcialized in aero-thermo egineering working at NASA Glenn research engineer conducting rxperimental and computational research to improve performance and gain physics insight of aircraft gas turbine.engines. I retired Sept 30, 2017. What type of engineer are you and where did you work?

I was in the concert and marching bands in junior high school. I got to be 2nd chair 1st clarinet. After I got braces I was told I couldn't play anymore. Yeah, not true as I found out some years later. I'd also moved overseas to Guam right after Junior High. Why was Baroque oboe harder to play? I hope you have a good week.

Michael