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    • #13603
      Jean Mellano
      Participant

      Linda Ronstadt lost her ability to sing due to PD.  Has PD affected your voice?

    • #13748
      Lou Hevly
      Participant

      I sing, though as a crow to Linda’s meadowlark. Still, so far PD hasn’t really affected my voice. I’ve had to give up the guitar and clarinet though, because I’ve lost precision.

    • #13749
      Jean Mellano
      Participant

      hi lou

      i am glad you are still singing.  unfortunate you had to give up playing instruments 🙁  i hear what you are saying about precision.  i started to take ukulele lessons and it was so frustrating i quit … i wrote an article about my experience…

       

      https://parkinsonsnewstoday.com/2019/01/29/frustration-parkinsons-fierce-symptoms-treatments/

    • #16829
      Toni Shapiro
      Participant

      I never have been able to sing but I find I  get hoarse often, have lower sounding voice and will start coughing if I speak too long.

    • #16844
      Jean Mellano
      Participant

      hi toni, i was diagnosed in 2015, i feel my voice is starting to be affected , i am always coughing ….  there is a good utube videos for voice training, that i am starting to use.  https://www.youtube.com/watch?v=NHvc9lUJvJ4

    • #16855
      Toni Shapiro
      Participant

      Thank you Jean.  I appreciate your feedback.

    • #17170
      Joe Escobar
      Participant

      As a professional trombonist and vocalist, I have been very concerned about losing my voice and the ability to play. I’m still booking gigs and performing, but I think I have noticed a change in how my voice feels when I sing. I’ve been having a little stutter in my speech where I have to really think about what I’m going to say, or I will repeat a phrase two or three times. That has not been an issue when I’m singing at this point. My trombone playing appears to be affected mostly when I’m improvising in my jazz quartet. Phrases that I have played for years, have become difficult to play now, unless I slow them down. Which is something else I found. I was having trouble signing my name until I realized that if I do it slower, I can sign it just fine. It’s almost like my mind is responding slower. When I play trombone in the orchestra, I don’t really have any issues, and I think it’s because the music is very straightforward and regimented, and you’re just reading a part, where as in jazz improvisation, you’re creating a new melody line on the fly. It’s really frustrating when I watch videos of myself playing a few years ago where I could get around the horn so easily, something that just doesn’t happen anymore. I can still play a decent solo, but I have had to rethink how I improvise.

    • #17227
      Mike P
      Participant

      I’m 46 and was diagnosed 3 years ago and have had symptoms for much longer. My voice is definitely softer. People always ask me to repeat myself and my family tells me I’m too quiet. I can speak louder with conscious effort but feel like I’m being extra loud when it’s actually just right. I coach soccer teams for my kids and shouting to players downfield makes me go hoarse more easily than it used to, especially at the start of the seasons.

      I’ve been considering LSVT Loud training.

    • #17238
      Charles H Levin
      Participant

      Re: Linda .. In a few scant interviews before and during the release of the documentary this year, Linda shares that her diagnosis is actually Progressive Supranuclear Palsy … According to my neurologist, this is a cousin of Parkinson’s and not completely the same thing … in some cases, patients present with elements of dementia, which does not appear to be her problem …

      To Joe Escobar, the trombonist: I’m 68 and played drums professionally for 30 years … 18 for a living … then I walked away from it for 15 years to pursue journalism … I retired young and took up music again (for another 13 years), but by this time I was diagnosed with Essential Tremor, which really complicated my playing (despite that I went back to college for an MFA but I wasn’t exactly excelling in performance … lol) … Neuro Feedback reduced the tremor for some time and docs reaffirmed by diagnosis for more than 10 years … then my “action” tremor changed to “resting” and about a year before that I began developing other PD symptoms but I wasn’t connecting the dots …  slowness of muscle movement and rigidity … playing became much more difficult … In June of this year, I met with a new doc who ordered a DaTScan, and my dopamine levels were clearly impacted … I had quit playing in March before all this and concentrated on managing a band I founded …

      In September, my second opinion docs at Cedars Sinai in LA determined that I have Benign Tremulous Parkinsonism, notable for its extra slow progression (hence, the decade that passed between the first symptom, tremor, which could not be confirmed as PD, and the other symptoms) … I’m not on medicine and could conceivably go for some time (perhaps my whole life) without it … fingers crossed … I do NeuroBoxing (similar to Rock Steady) three times a week and a lot of other exercise routines … cardio, yoga) …

    • #17246
      Gail Dons
      Participant

      I sing in the church choir. During the 6+ years since my diagnosis, my voice has become lower – an alto for many years, I can now easily sing with the tenors – and sometimes even with the bass! The really cool thing is that now I even have a little vibrato! Singing is a good exercise for breathing and voice stamina – and gives one a constructive outlet in which to be LOUD!

    • #17280
      Chris Manning
      Participant

      My voice has definitely become much quieter and more indistinct, to the point where people are finding it difficult to hear what I am saying. A speech therapist has given me exercises that I am supposed to do twice a day (when I remember) and my wife is helping me to speak more loudly and more slowly. I would guess that about one-quarter to one-half of the people in our PD Support Group have similar problems.

    • #17281
      Jo S.
      Participant

      Hi, Charles. I really appreciated reading about your story — thank you. I played piano many years ago but gave it up when I was diagnosed with ET (20 years ago). I never heard of Benign Tremulous Parkinsonism before, so I found this fascinating. I have both a resting and action tremor. Do you still have the action tremor or just the resting tremor? It’s difficult to differentiate between them sometimes — even for my docs — although I see a difference in how the tremors manifest in my hand. If you still have both kinds of tremors, do you see a difference between them as well?

      I don’t think I have BTP (just regular PD) because I have so many other common symptoms in addition to tremor, and I’ve had them for at least 15 years. But, like you, my disease progression has been slow compared to other people. (I was diagnosed in Feb. 2019, and am on C/L, which has helped several symptoms, but it hasn’t helped my tremor a whole lot.) I don’t know if it’s a combination of having always maintained a higher-quality diet (plant-based and mostly organic), avoiding mainstream (chemical-laden) household and personal-care products, and always doing some form of exercise (primarily yoga and walking) or whether I’ve just been lucky. I recently started Rock Steady Boxing and am loving it so far. (I also do yoga, walk, and jump on a rebounder/mini trampoline.) I definitely feel better after my boxing classes and understand why PWP rave about them.

    • #17282
      Jo S.
      Participant

      I was starting to have bad voice problems around the time I was diagnosed (early 2019). My voice was getting hoarse quite a lot and was becoming softer. Even though I normally have a soft speaking voice, I noticed more and more people asking me to repeat what I had just said, and I couldn’t sing on key if you paid me. Recently, I wrapped up several weeks of speech therapy and adjusted my meds (which have already been adjusted several times since my diagnosis), and I’m able to sing quite a bit better than I was previously (but not better than prior to having PD — haha!). One of the side effects (I think) of the meds for me is a cough and more phlegm or post-nasal drip or whatever it’s called, so I sometimes cough quite a bit when I try to talk or sing. Other than that (which doesn’t happen all the time), the speech therapy (along with the meds, I believe) have helped my voice return to relatively “normal.”

    • #17285
      Tina
      Participant

      I have these symptoms as well. Being a singer all my life, I was dismayed to say the least, when I noticed quite suddenly that I had lost my singing voice. After reading Jo’s post, I sense that my loss of some control of my voice is due to the meds, either the dopamine agonist, but more likely the pyromidide or however it’s spelled, since I noticed it shortly after I started taking that med.

      However, I had noticed the developing of the hoarseness of my speaking voice for several years before I was technically diagnosed with PD. I had noticed a loss of wind and control of my diaphragm for 20 years before he diagnosis.

      I have also been recently diagnosed with Myasthenia Gravis as well, which my neurologist says is responsible for my reduced  control of breathing, speaking, singing, swallowing and essential tremors.

      I’m not happy with this second diagnosis for sure, which she says is more of a daily threat to my breathing, but I take it one day at a time, and sometimes hourly. It’s autoimmune she says, so I feel I have some control over it, and could possibly go into remission at some point, as I did with lupus previously. Chin up!

       

    • #17294
      Charles H Levin
      Participant

      Hi Jo S.

      Yes, I now experience both types of tremors, action and resting. I also have a head tremor, which is consistent with ET. I found one medical abstract on BTP after my second opinion. It said that patients with this diagnosis experience both types of tremors.

      As I recall, the study was trying to determine if PD operates on a spectrum, analogous to autism, but in this case suggesting that PD runs the gamut from very rapid progression (such as early onset) all the way down to really slow progressing (in my case, BTP) … But the researchers were unable to draw any concrete conclusion on that question.

      I forgot to say one thing earlier … I’ve never really been a singer, other than in ear training classes in college or for assignments … My voice, so far, has not been impacted and is still robust. In general, there’s been very little impact to my overall quality of life, other than giving up playing music.

      Over the last 20 years, I gravitated to what would be called a Mediterranean diet … about seven years ago, I cut way back on carbs, particularly on my dinner plate …  helped lose a lot of weight … I also do strength training, which is critical for weight loss at this age (68) …

      The one thing that irritates me is that docs will diagnose you with an action tremor and call it ET. I get that. A clinical diagnosis. But no one on the 10 years I was seen every said that action tremors can sometimes be a sign of PD … or volunteered that (and this is my speculation) that the only thing that really confirms if you have ET is the absence of other PD symptoms … I would have liked to have known that …

    • #17295
      Jo S.
      Participant

      The PD spectrum concept is an interesting one, Charles. You are fortunate that your voice is still robust. Yes, it certainly seems that ET would (or should) only be confirmed in the absence of other PD symptoms. In my case, no one ever connected the dots between my tremor and my many other symptoms until my action tremor seemed to morph into a resting tremor. I’m sorry that you also have a head tremor. Oddly enough, my mother had one for several years and then it seemed to disappear. Her head tremor seemed to confirm my familial ET, but the disappearance of her head tremor later on left me baffled.

    • #17296
      Jo S.
      Participant

      Gosh, Tina, you sure have a lot on your plate to deal with! I sincerely hope the conditions you have that can go into remission will do so (and stay there)!

    • #17298
      Bob Glisson
      Participant

      My voice is still reasonably good, but my guitar playing has been compromised, primarily due to my shaking picking hand. I’m still performing at small gigs occasionally, but I’m certainly not what I once was…

    • #17301
      Charles H Levin
      Participant

      Hi Jo S.

      Just re-read your reply … ET diagnosis 20 years ago? And PD this last February? That’s a long time … twice as long as me … what were/are your other PD symptoms and how long ago did they appear …

      Re: Linda’s diagnosis … https://www.cnn.com/2019/12/28/entertainment/linda-ronstadt-anderson-cooper-intv/index.html

    • #17303
      Clyde Frank
      Participant

      I have just completed a voice therapy program entitled “SPEAK OUT  Live with intent” which I found very helpful.  It addresses both concentration, volume, etc. and the cognitive problems facing individuals who have  PD.  This is not an advertisement.  I have experienced the effects of PD (physical, mental, including vocal)  for almost two (2) decades.  I have survived, partially, through repetitive application of the therapeutic exercises given by trained therapists who have helped me regain and maintain solutions to the multiple problems attributed to this disease (normally obtained through prescriptions).

    • #17306
      Tina
      Participant

      Thanks Jo. And I’ve never been a person in favor of meds but I can say they have truly helped with controlling some symptoms of both. My internal med/geriatric MD said it was remarkable I was on so few meds to see such good results so quickly. I trust my neurologist figured it out based on my symptoms and the antibody test for MG. I’m looking forward on getting second opinions from another neurologist when I move to another state in a few months. I’m also looking forward to moving in with my daughter also. It’ll be less stress in some areas but more in others, so I know it’ll be a period of adjustment which will probably increase some symptoms like tremors and confusion. Just got to stay positive. Some of it is just getting old!

    • #17308
      Jo S.
      Participant

      You certainly have the right attitude, Tina! I hope the move goes smoothly and the adjustment period goes quickly.

    • #17309
      Joe Escobar
      Participant

      A little follow up. I just sang and played with a big band a couple of nights ago. My voice was just fine and I received many compliments, and I also played in the trombone section when I was not singing. That went just fine as well, probably because I was just reading parts and not doing any soloing or improvisation. I think the one thing that bothers me the most is the fear if something is going to happen at one of these performances. Another symptom I have had of late is that my emotions seem to be really really amplified. If I see something sad on TV or in a movie, I don’t get teary eyed like I would in the past. Instead, I break into full blown sobbing. Same thing happens at the other end of the spectrum where if something is funny, sometimes I break into uncontrollable laughter. This causes me to be concerned that in the future, if am singing a somewhat emotional song, could it possibly make me break down and not be able to get through it. That would be quite embarrassing. I have always been thought of by my friends and family as sort of a Renaissance Man. I can pretty much a build or fix anything. I build my own computers, classic cars, I autocross one of my cars, work with wood, metal, you name it. Pretty much all of these skills require working with your hands. Although I still have full dexterity in my hands, I find that simple tasks like tying my shoes and buttoning my pants seem to take more concentration, causes a little tremor in my jaw and my left hand seems to respond a little slower. Has anyone found that they are less motivated? Even though I am retiring, I have a lot of hobbies and things to do to keep me busy and active. But I find that sometimes I have to really push myself to get going doing things that I normally find fun to do.

    • #17310
      Jean Mellano
      Participant

      joe,

      thanks for sharing.  i too sometimes worry if PD is going to make me do something stupid and what people will think.  eg;  when i fell and people came running up to me to help me. most people are kind and understand, if they dont, it is their problem, not mine.  i too have problems with using my hands like typing, putting bills into a wallet, putting a card in an envelope etc..  i have found emotions make my symptoms worse and i get anxious, it is a vicious cycle.  i also suffer from lack of motivation and apathy…i used to love to exercise, now i could care less, but force myself to do it since it is so important for PD.   sometimes, i would just like to sit in my favorite chair and watch tv all the time.  keep doing what you are doing and stay active.

    • #17311
      Jo S.
      Participant

      Joe, it sounds like you have so many wonderful hobbies and skills that you are still able to do, and that is quite fortunate indeed. My tremor has made me unable to pursue my former hobbies, and my apathy and general disinterest holds back my exploration of new ones. I hope you’ll find the motivation to continue being the Renaissance Man that your friends and family admire, even if you go at things a little more selectively or slowly. Pushing ourselves — even to do fun things — seems to be the name of the game these days for those of us with PD. It’s not easy sometimes, but we’ve got to keep fighting.

    • #17312
      Mike P
      Participant

      Wow Jean. Your reply is so relatable. I share exactly the same symptoms and feelings.

    • #17313
      Jean Mellano
      Participant

      Mike p.   We r all in this together…

    • #17320
      Tina
      Participant

      Jo S.  I agree about the lack of interest in hobbies. I was always exploring new activities. I finally had to admit this year that I had stopped engaging and recently set goals. I learned to sew at age 5 and had businesses. My eyes and back made it difficult to sit in front of my machine so I gave it up and sold everything.

      I decided recently to buy a new machine for myself as I always said I was going to do for my retired life. Even though I’ve had it two weeks and haven’t read the manual or threaded it yet, I did set it on my table and bought material to make a baby quilt for my first grandchild. I’ve made them for lots of kids and I thought it would be a terrible waste of talent if I didn’t make her one. So my next goal is to make a very simple one before she’s born at the end of April.

      I don’t know if I can really make myself do it, but my daughter had made quilts with me since she was little and I was thinking maybe she would help me.

      I’m ashamed of myself for my declining motivation and yet glad I’ve taken the steps I have to get started. Since I couldn’t make my way through the airport by myself yesterday, I know I should be proud of myself for not giving up entirely.

      These conditions I have are not friendly to me, but I’m trying to stand my personal ground to the greatest degree for as long as I can. I refuse to stay sad for any unreasonable amount of time. I’ve always been a positive minded person and plan to stay  so.  I just turned 62 yesterday and am very happy I made it to that age cognitively alert, as that’s been a long term goal for the last 20 years.

      I’m also glad I found this forum at the recommendation of my RN home visit, since I get out about twice a month now and it’s a long time between the monthly local PD group. I don’t like sharing the level of what I’m going through with my friends, neighbors, family etc yet. So I’m really grateful for this forum and hope my wordiness doesn’t drive other PD people nuts. I’ll keep you posted on the quilt progress if that’s ok.

      Since this page is supposed to be about voice and I found that website for the singing practice, that’s going to be a new hobby for me too. I can’t remember things unless they are right in front of me, so having this forum to visit regularly will remind me of these hobby goals. Thanks!

    • #17322
      Jo S.
      Participant

      Happy slightly belated birthday, Tina! (My b-day is next week.) Getting the new sewing machine is a great first step, and planning to make a baby quilt (possibly with your daughter’s help) is a terrific goal, especially since you have a fairly tight deadline to complete it prior to your first grandchild’s birth. You most definitely should be proud of yourself for not giving up and taking the first steps to get started. Yes, please do keep us posted on your progress!

      There’s no reason to feel ashamed of your lack of motivation. I think most of us have been there (or are still there) — it just goes with the PD territory.

      Singing is wonderful. I joined a singing group a few months ago but found it a little difficult to keep up with the other members. I’m contacting some music therapists locally now to see if any of them would be interested in getting a PD group started. Singing, playing bells or chimes, or drumming all interest me. (Of course, I say that now — but if a group gets going, I have to find the motivation to attend it! Haha!)

      Happy birthday and happy New Year! (May this be the year a cure for PD is discovered and made available!)

    • #17323
      Jean Mellano
      Participant

      Tina, no need to worry about wordiness, we are all here to share experiences.

    • #17337
      Dan
      Participant

      I used to jam with a few local musicians, surf, C&W, blues. Lead &  rhythm guitar. had to give it all up. no motor control, my voice sounds like a cat caught in a lawnmower.

    • #17339
      Charles H Levin
      Participant

      Joe E … Reading back on your first post … I quit playing in March (three months before diagnosis) as playing was becoming more difficult … I didn’t know it at the time, but I was experiencing slowness of muscle movement in my left hand and leg/foot … Controlling my hi-hat pedal had become difficult for at least six months or a year before that .. In some cases, I couldn’t sync it up with my bass drum pedal on the simplest of rhythms … What docs thought was Essential Tremor in my left hand had already complicated things, but this was adding a new level of frustration … patterns that I had learned and felt I could rely on had seemingly disappeared, as if I had never nailed the muscle memory to begin with … When I went for my second opinion, the doctor had me tap my foot, toe to heel, back and forth quickly … the right foot was fine … the left foot could barely do it … at this point, I can’t easily move my left foot in circles for a yoga class …

      However, I had already been handling management and publicity chores for a band I founded, so when I quit in March, I kept doing that full time … it’s fulfilling and I have all the skills necessary to do it well and learn more details of that role … and that band is doing well at its gigs (mostly high-end listening clubs and performing arts centers) …

       

      I can say with some certainty that the boxing really helps … I had gone about three weeks before the holidays hit and I could feel improvements … then we had to miss classes as they were on Xmas day and there was only one class that week … my typing became a little more strained and my gait got a little wobbly again … before the boxing, I would have a slight stumble to the right whenever I walked … with regular classes, that’s not a problem ..

      I am also taking up new hobbies … I start a photography class in  a week … the camera lenses all have image stabilization, so my tremor (which is not that bad) does not interfere … and there’s always tripods … Meanwhile, I’m almost done co-writing a memoir with my teacher, Joe La Barbera, on his two years playing with Bill Evans … so I am busy and always feel energized to get something done the minute I wake up (I think I was born Type A) …

      I have had a few moments where I feel a little confused, but I’m always able to reach some clarity in a few seconds .. sometimes I pick the wrong word when I’m speaking but know it instantly and correct myself … as for emotions, I feel stable … better than the year or so leading up to when I quit … that was a difficult decision and, in hindsight, I think I was growing a bit depressed and withdrawn from friends … if anything, I feel almost relieved now and a bit more open to people …

      No question that this kind of diagnosis really sharpens your bucket list … what you want to do with the remaining good years of health you have left … I plan on traveling a bit more, reading books I never got around to  and staying as healthy as possible …

      Happy New Year …

      cl

       

       

    • #17341
      Tina
      Participant

      Charles, this all sounds so familiar, especially the impact on my musical life and physical control. The part about moving the foot in circles astonished me that this is related to PD. For me it was my left arm. I thought I had a stroke because I could not figure out how to move it in the direction I wanted.

      Having been an athlete in many different sports, I just couldn’t understand how it could of happened, which started about 2 years after an auto accident and a lupus flare. It was also the same time I lost the volume in my voice, which I attributed to being pushed against the steering wheel. The accident happened when I had a seizure and lost consciousness while driving.

      I spent more than 5 years retraining that arm myself with no specific diagnosis or physical therapy, but I did accomplish it to a useful point. To this day though I have to apply thought to that arm before I use it as the tremors are worse there, especially when I’m anxious or meds are wearing off. I can’t trust that arm to hold objects at any time by itself.

      My volume has decreased over the years, and my pitch has been limited this year. Hoarseness has been developing since the accident. Since a few months ago I have been humming or singing just a few words or phrases of a verse, but it’s painful. My neurologist says this is really from the MG as I have trouble swallowing as well. She tested for the antibodies which came up positive, so I’m on meds for that, but it hasn’t helped the voice so far.

      Your other point about the bucket list hits home with me. Since I’ve worked through the initial 5 stages of grief for my former life, I have a renewed appreciation for my life now and what I’m able to presently do, so I’m quickly taking advantage of it.

      I think this condition makes for a heightened awareness of existence, at least of the steps. Looking back I can see it’s been a 20 year journey, of which I didn’t realize where I was really going.  There is comfort in knowing that others can relate; it brings some solace in being able to put a label on some unanswered questions.

      Now that everyone around me, including strangers, can see I have difficulty with things, has become more of a stress reliever for me. I’ve hidden my difficulties from everyone over the last 20 years, even myself sometimes, I think, for many reasons, including my career.

      Accepting assistance and allowing myself the freedom of just existing sometimes, living in the present and being thankful for what I have to enjoy, is my new reality. I’ve always been a very religious person as well, and relied on prayer and meditation with God to help me deal with my issues privately. Especially in the beginning when doctors weren’t so supportive without more definitive answers, but on a more timely basis now.

      This is a condition that calls for reflection, acceptance, and action. It’s preparatory and impetus for living life to the fullest, which is really a good recipe for everyone. I know we’ll all enjoy life here and be supportive as we find answers to our questions others have found.

    • #17342
      Tina
      Participant

      Thanks Jo and Jean. In my “previous life” before PD I was not usually talkative so I’m not sure if it’s the condition or the meds but I think I need to put a lid on it somehow. I’m going to discuss this new “talent” with my neuro this month. I’m sure she’s got a pill for it lol

    • #17344
      Jean Mellano
      Participant

      well said Tina.. “This is a condition that calls for reflection, acceptance, and action. It’s preparatory and impetus for living life to the fullest, which is really a good recipe for everyone.”

    • #17371
      Bob Glisson
      Participant

      You certainly can’t exercise your voice towards preventing vocal loss, if that is your fate. I’m sure no one worked on their voice more than Linda Ronstadt, yet she still ended up losing the ability to sing. PD is unique for everyone, though, and her problem may not be ours. I will say that the louder and more consistent I practice singing, the more it comes back to me. So, my new year’s resolution is to sing everyday, at a pretty good volume.

      Youtube has great, FREE, karaoke channels for you to practice to. Hook up some decent speakers to your laptop, or bluetooth your tablet to a wireless speaker and let it rip!!!

    • #17373
      Joe Escobar
      Participant

       

       

      I really appreciate all the responses to my posts. I feel bad for those of you who have lost so much,

      I sang and played with a big band on 12/28 and did a small New Year’s Eve party on 12/31 with my quartet. My voice was solid, no issues as well as my trombone playing.

      I have decided that it’s just best for me to accept some of the minor symptoms that I have right now as my new normal. I’m adopting a daily exercise/stretch routine as well as a daily practice schedule for my music career. I am pretty much retired as of this month which will make it easier for me to maintain a schedule without having to worry about going to work.

      If anyone is interested in my music, my website is http://www.joe-escobar.com. If anything, it will show you what I do currently, and why I’m so afraid to lose it.

       

    • #17375
      Jean Mellano
      Participant

      Joe, you hit the nail on the head… ‘our new normal”.   Keep doing what you are doing.   Your website is nicely done and although.i am a hard rocker as far as music goes, your work is very good.  Keep at it and don’t let
      pd limit you.

    • #17416
      Karla Burkhart
      Participant

      I, too, am a singer although not of Linda Ronstadt’s level of fame. I have worked very hard, even before I knew I had Parkinson’s, to maintain my voice. Voice therapy plus the help of a good voice teacher has been a life saver to me. I’m just not ready to give up my life.

    • #17438
      Mary Beth Skylis
      Moderator

      Karla, I find that I simply like to sing as well. So, even if there weren’t therapeutic qualities, I believe it has positive effects on me. You shouldn’t be ready to give up on your life! Keep fighting the good fight 🙂

    • #17443
      Tina
      Participant

      Well I just went to my neuro appt today and of course I forgot to ask her what I really wanted to—why I’m so talkative, especially since I have declining breathing, swallowing and vocal control. Oh well.

      What we did discuss was my increased memory issues, apathy and anxiety at the thought of doing financial tasks, despite having several graduate degrees in the field.

      I asked her about exposure to toxins as I had been reading about it and PD. I described my exposure to toxins in my childhood and she said it had a part in my disease development. I had always wondered about us kids running behind the ddt mosquito trucks, painting “polka dots” on for fun with the orange mercurochrome dropper etc, and all the other dumb things we did growing up without tv and playing outside.

      I also had a mouthful of fillings, almost every known childhood disease including scarlet fever, and was always undergoing some new “treatment” along with some horrible fluid to dissolve the multiple coins I was always swallowing for some reason. Hard to believe I tested at genius level considering my terrible health and the poor diet I was raised on in a poor family.

      Anyway she said exposure to toxins is considered causal for PD, and also the history of various autoimmune diseases in me and my family for myasthenia gravis along with the antibodies. She said I probably always had MG since my family doctor thought I had either epilepsy or polio, always having seizures and falling down. Makes sense to me for both diseases.

      I was hoping the MG could go into remission since it’s autoimmune but she said not at my age and this level of progression. I tried to convince her again that maybe I just had MG instead of PD, but she said no. Different symptoms, different tremors. Double whammy.

      So as I’ve said here before, time to hit it out of the park on the bucket list. Right after my dr appt I went and bought the backing material for the baby quilt I’m going to make for my first grandchild. I started my annual shredding of files after preparing for tax season.

      I ordered a new winter coat and gloves for my impending relocation further north. I’m moving into my new “mother in law” apt in my daughter’s new house. She’s going to handle my cooking and  finances.

      I’m still trading a few stocks, for how long I don’t know, but I’ve definitely decreased the amount I trade, and consider it hobby money now. That and sewing are about the only things left I have. I can’t sing anymore, reading drives me nuts and I can’t tolerate keeping up with finance news anymore, as it gives me a headache and makes me anxious. So I decided I’ll just focus on a few stocks I know well.

      I sang my whole life, read the encyclopedia and Bible three times before age 6, so it’s hard for me to accept all this. But I know I have to stay positive and seek to enjoy smaller things. As long as I can stay grateful and try to encourage and listen to others, I’m affording dignity to myself and others.

      Again, I’m sorry for running on, I guess it’s from the pent up emotions this time from feeling like I lost the argument at the neuro appt. At least I have my diagnoses, which I had been seeking for 20 plus years, so that’s a win in that area.

    • #17447
      Jean Mellano
      Participant

      tina, my comments imbedded in caps:

      “Well I just went to my neuro appt today and of course I forgot to ask her what I really wanted to—why I’m so talkative, especially since I have declining breathing, swallowing and vocal control. Oh well. I ALWAYS WRITE A LIST OF QUESTIONS AND I DO REMEMBER TO BRING WITH ME ON MY DR VISIT, BUT I ALWAYS FORGET TO ASK HIM.  I TOO AM HAVING SWALLOWING ISSUES. WENT TO SPEECH THERAPIST WHO SHOWED ME THAT I HAVE A TONGUE TREMOR… WHO WOULD HAVE THOUGHT?

      What we did discuss was my increased memory issues, apathy and anxiety at the thought of doing financial tasks, despite having several graduate degrees in the field. I NEVER HAD ANXIETY OR APATHY PRIOR TO PD.

      I asked her about exposure to toxins as I had been reading about it and PD. I described my exposure to toxins in my childhood and she said it had a part in my disease development. I had always wondered about us kids running behind the ddt mosquito trucks (I REMEMBER DOING THIS, PLUS, I GREW UP ON LONG ISLAND WHICH USED TO BE COVERED WITH POTATO FARMS (HEAVY PESTICIDE CROP), painting “polka dots” on for fun with the orange mercurochrome dropper etc, and all the other dumb things we did growing up without tv and playing outside.

      I also had a mouthful of fillings,(ME TOO) almost every known childhood disease including scarlet fever, and was always undergoing some new “treatment” along with some horrible fluid to dissolve the multiple coins I was always swallowing for some reason. Hard to believe I tested at genius level considering my terrible health and the poor diet I was raised on in a poor family. WHY WE GET PD IS A COMPLETE MYSTERY, I WAS AN ATHLETE AND ATE HEALTHY MOST OF MY ADULT LIFE

      Anyway she said exposure to toxins is considered causal for PD, and also the history of various autoimmune diseases in me and my family for myasthenia gravis along with the antibodies. She said I probably always had MG since my family doctor thought I had either epilepsy or polio, always having seizures and falling down. Makes sense to me for both diseases.

      I was hoping the MG could go into remission since it’s autoimmune but she said not at my age and this level of progression. I tried to convince her again that maybe I just had MG instead of PD, but she said no. Different symptoms, different tremors. Double whammy. HAVE YOU CONSIDERED A DATSCAN:  https://parkinsonsnewstoday.com/2018/12/18/parkinsons-disease-datscan-dopamine-transporter-levodopa-carbidopa-rotigotine-spect-imaging/

      So as I’ve said here before, time to hit it out of the park on the bucket list. Right after my dr appt I went and bought the backing material for the baby quilt I’m going to make for my first grandchild. I started my annual shredding of files after preparing for tax season. CONGRATS ON YOUR FIRST GRANDCHILD!

      I ordered a new winter coat and gloves for my impending relocation further north. I’m moving into my new “mother in law” apt in my daughter’s new house. She’s going to handle my cooking and  finances.GOOD FOR YOU TAKING CHARGE OF YOUR LIFE AND MAKING MAJOR LIFE  DECISIONS

      I’m still trading a few stocks, for how long I don’t know, but I’ve definitely decreased the amount I trade, and consider it hobby money now. BEWARE THE DOPAMINE AGONIST DRUGS ( NEUPRO, ROPINEROLE ETC.) AS A POTENTIAL SIDE EFFECT IS DEVELOPMENT OF OCD TYPE BEHAVIOR SUCH AS GAMBLING) That and sewing are about the only things left I have YOU CAN DEVELOP NEW HOBBIES, I AM GETTING BACK TO ZENTANGLE (DOODLING) AND I PLAY LUMOSITY. I can’t sing anymore, reading drives me nuts and I can’t tolerate keeping up with finance news anymore, as it gives me a headache and makes me anxious. So I decided I’ll just focus on a few stocks I know well. ITS GOOD YOU KNOW WHAT CAUSES YOUR ANXIETY SO YOU CAN TAKE ACTION TO REDUCE OR ELIMINATE IT

      I sang my whole life, read the encyclopedia and Bible three times before age 6, so it’s hard for me to accept all this. I UNDERSTAND, BUT ACCEPTANCE IS KEY FOR YOU TO MOVE FORWARD.  https://slippedawayblog.wordpress.com/2018/02/26/acceptance-gratitude-and-attitude/ But I know I have to stay positive and seek to enjoy smaller things. As long as I can stay grateful and try to encourage and listen to others, I’m affording dignity to myself and others. AMEN

      Again, I’m sorry for running on, I guess it’s from the pent up emotions this time from feeling like I lost the argument at the neuro appt. At least I have my diagnoses, which I had been seeking for 20 plus years, so that’s a win in that area.  HANG IN THERE, YOU ARE NOT ALONE…

    • #17450
      Mary Beth Skylis
      Moderator

      Tina,

      what a hand you’ve been dealt. It sounds like a very confusing and intimidating maze to make sense of. One big idea that jumped out at me is your frustration with reading. I’ve recently taken to listening to audiobooks. You don’t have to do anything fancy to access them. If you have a smart phone, you can download overdrive or libby, connect your library card and rent audiobooks just like you would at the library. I’m not sure if that’s something you’re interested in, but I’ve been looking for ways to keep the twinkle in my Dad’s (diagnosed in 2013) eye. Like Jean said, you’re not alone! Don’t ever apologize for long messages. They’re very meaningful. Thank you for your thoughts!

    • #17555
      Tina
      Participant

      Jean and Mary Beth,

      Thanks for your encouragement. That’s exactly why I come here, and to listen and encourage others. I can’t imagine what life would be without the internet in trying to understand and deal with this condition.

      Unfortunately at the MG site I get the feeling of having to try to constantly push oneself and start fundraising campaigns for MG etc, which I just don’t have the capacity to do. I don’t know if it’s the PD symptoms slowing me down in addition to the MG, or maybe because I may be older than a lot of MGs, but I feel more at home in this forum. I’m very grateful it’s here

    • #17563
      Mary Beth Skylis
      Moderator

      Tina,

      I’m glad to hear from lovely people like yourself. It gives me alot of insight into my Dad’s challenges. He doesn’t ever complain, so sometimes I don’t realize that he is struggling with nausea or other PD symptoms. So, in short, I appreciate you and this place as well. How else are we supposed to understand something as complicated as PD?

    • #17570
      Karla Burkhart
      Participant

      I was beginning to have trouble singing but my neurologist referred me to a speech therapist. After a few sessions with her to improve my breath control among other things, she sent me to a voice teacher for a couple of sessions to follow up. Then I was back to singing. The biggest problem now is heavy fatigue since most rehearsals are evening.

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