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Linda Ronstadt and PD affecting her voice
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Wow Jean. Your reply is so relatable. I share exactly the same symptoms and feelings.
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Mike p. We r all in this together…
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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!
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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!)
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Tina, no need to worry about wordiness, we are all here to share experiences.
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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.
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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
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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.
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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
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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.”
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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!!!
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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.
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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. -
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.
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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 🙂
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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.
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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…
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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!
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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
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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?
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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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