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    • #16800
      Jean Mellano
      Participant

      I was diagnosed in 2015, poor handwriting, poor fine motor skills, fatigue and bradykinesia were identified then.  Left side affected the most.   Just recently, one or two times a day, my left pinkie shakes depending on the position my hand is in.  also experiencing muscle twitch on inside palm below left pinkie around same time. If you have tremor, did it come on quickly or gradually?

    • #17060
      Curtis Nelson
      Participant

      I  was diagnosed about 3 weeks ago, but we suspected it a few mounts back,mainly because of stumbling and some minor tremor from left hand fingers. Also my wife detecting a different  odor on me. that’s all I have for tremor as of now. Probably have had it for some time however, since I’ve also  been dealing with rem disorder, narcolepsy,restless legs, and posture issues.

    • #17061
      Michael R. Scott
      Participant

      Jean,

      My Father passed a Familar Tremor to me genetically. Of the seven of us, three got this Tremor…. Mine showed up around 50 on my left side and began as a tremor in my left hand…. Later as it got worse,and I began to have periods of numbness and greater tremors and eventually I was diagnosed with Parkingsons at about age 69. I am now 74..

      Jean,

      I had a question but am not sure how to begin this question for discussion…. Has our group ever discussed Mannitol Balance? And, if so where would I find  that discussion?

      Mike Scott

    • #17063
      Paul D Lefebvre
      Participant

      Symptoms of bradykinesia (not known to me as that at the time) got my attention on the racquetball court (a playing opponent thought it peculiar that I didn’t respond to the ball coming at me) and prompted me to get an assessment with the neurology dept of my health care clinic. It was at that assessment that my tremor was spotted and identified as such, and from that time it has grown in prominence. But even now, seven years later, there are lots of times when I don’t have it. When I go into an “off” period I definitely have a tremor, and it shows.

    • #17066
      Jeffery Hill
      Participant

      My tremor started as a flutter in the thumb of my left (dominant) hand about 4.5 years ago.  It progressed steadily to encompass my entire hand, and now manifests itself as a very obvious shaking from my elbow to my finger tips, still on the left side only.  It’s not constant, and it accelerates dramatically in the presence of stress.  Nothing in the legs.  I’m not yet taking levadopa.

    • #17071
      Jo S.
      Participant

      I was diagnosed with essential tremor when I was in my early forties. However, I’ve had symptoms of PD for at least 15-20 years. My PCP noticed at my previous annual exam that my tremor had gotten worse and was occurring even when my hand was at rest, so she recommended that I get screened for PD. I don’t know how long I’ve had both tremors because they overlap and intermingle quite a bit, so it’s difficult to say whether the PD tremor came on gradually or quickly.

    • #17076
      Jean Mellano
      Participant

      curtis, PD, the gift that keeps on giving…..

      michael, you can do a keyword search (on upper right of screen) to search forms for that topic, or start one of your own in alternative treatments forum: https://parkinsonsnewstoday.com/forums/forums/forum/parkinsons-disease-alternative-treatments/

      paul, i never heard of bradykinesia till i got it…my pinkie tremor happens at rest, though there doesnt seem to be any rhyme or reason as to what kicks it off.

      jeffrey, stress usually exacerbates all of my symptoms.  and my left side is affected the most.  thank God it is not my dominant side. and… I am on C/L

      Jo, thanks for your input

    • #17096
      TimR
      Participant

      Mine started on non-dominate left side thumb perhaps 4- 5 yrs ago, I brushed it off as ET, which my older brother and sister have.  Stress of building new home about 2yrs ago seems to have kicked tremors into high gear the way it feels.  Now left side hand only, and if I keep busy and stress low, off periods are minimal.  Take 1/2 azilect tab per day mainly for remote neurodegenerative protection.   Doesn’t make much difference in tremor when I’ve gone off it for one reason or another

    • #17099
      Karla Burkhart
      Participant

      I had a number of problems for years before developing a tremor. It wasn’t until then that Parkinson’s was considered.

    • #17105
      Jean Mellano
      Participant

      tim, thanks for sharing that info about azilect

       

      karla,  yes, tremor is the most visible symptom of pd

    • #17109
      Sharon Fisher
      Participant

      My tremor began in my right hand and progressed rapidly to the left side. Neurologist insisted it was essential tremor for a year. I moved and 2nd neurologist diagnosed PD. I started on carbodevalopa that first year for ET and responded well an indication that it was PD. to begin with. I already had many non-motor symptoms that I didnt know until I started researching after diagnosis.

    • #17111
      Mike P
      Participant

      I only have an internal tremor and it exhausts me. I never knew how to explain it to people until I came across this blog post which described it as:

      I do not have a visible tremor, but I feel an inner tremor. It is difficult to describe, but it’s like electricity inside your body all the time and you can’t get rid of it. You want to just stretch, move, shake it out. But you can’t. There is a constant vibrating electricity inside my body.

      It arrived slowly and I really wish I could evict it some days.

    • #17120
      Jean Mellano
      Participant

      mike, i have also experienced internal tremor and that is a good description you posted. most people have no idea what we go through…

    • #17121
      Jean Mellano
      Participant

      sharon, interesting way to  find out if you have PD.. take the drug for it and if symptoms go away,you have the disease.  the first neuro i went to said that.  unfortunately for me, i seem to be levodopa resistant so i dont get much symptom relief taking C/L. 🙁

      • #17127
        Mike P
        Participant

        Jean- I am trying to determine if I am somewhat levodopa resistant (25-100 twice a day) or if I just have not progressed enough to appreciate it as a miracle drug. The main reason I take this medication is to help me continue to work. I am a computer programmer by trade and it becomes very difficult to type with my right hand as the day progresses when it stiffens up and slows. The CL helps a bit but I’d say it just takes the edge off rather than dramatically improve the bradykinesia and stiffness. My MDS and I had failed experiments with dopamine agonists and amantadine. Azilect doesn’t improve my symptoms at all. I am debating weaning off the CL until my progression is more significant.

    • #17128
      Jean Mellano
      Participant

      hi mike, my story is much like yous..i take (3) 25/100 C/L per day and on 6mg neupro patch.  i am not sure how much it is helping me, i tried amantadine and azilect to no avail.  my keyboarding also sux… sometimes my left fingers hold a key too long or dont even touch it at all, i cant tell anymore.  my bradyk is bad and fatigue is horrible… if you find something that works, lmk.. 🙂

      • #17129
        Mike P
        Participant

        Jean- You may want to consider a mechanical keyboard. It requires much more force but it helps me tremendously giving tactile (and sometimes audible depending on the key switch chosen) feedback as to when a key actuates. This is especially helpful for me and my hand stiffness to signal when I’ve accidentally pressed a key with my rogue hand. I prefer keyboards with the Cherry MX switches of which there are many varieties. Some of my favorites include:

        – Cherry MX Brown: A little quieter than the others and provide a tactile bump when the keys are actuated
        – Cherry MX Blue: Provide both a tactile bump and an audible click when the keys are actuated
        – Cherry MX Green: A stiffer version of the blue

        Cherry MX blues and greens would not be a good choice for a collaborative office environment. The clacking noise can be quite loud similar to the old IBM buckling spring keyboards. I work from home and love my keyboard with Cherry MX Blues. YouTube has a lot of videos reviewing the different key switches. There are many different keyboard manufacturers that use Cherry MX key switches.

        Mechanical keyboards are not cheap but extremely durable. Amazon and keyboard sites sell sampler strips where you can test out each of the different switch types.

        If anyone ever wants to venture down the rabbit hole of mechanical keyboards let me know!

    • #17135
      Jean Mellano
      Participant

      Mike, I am looking into the Cherry MX Blue. i have never heard of them.  do you have a specific recommendation?  I found this one:  https://www.cdw.com/product/CHERRYMX-Board3.0-keyboard-English-US-black/4688975

       

      I used to work for IBM, 15 years until they sold my division to AT&T

      Thank you so much for posting this info..

      • #17136
        Mike P
        Participant

        The keyboard you linked has the brown switches, not the blues. The brown switches are pretty good providing a tactile bump. You may prefer the blues that have a tactile bump and an audible click. A mechanical keyboard is a big investment so I would recommend getting a key switch sampler that allows you to test out each of the different switches and see what you prefer. Amazon sells the sampler for $19 and it makes a great fidget toy after you make a decision. If you decide you like any of the key switches on the sampler I can provide some recommendations for keyboards that use those particular switches.

        Amazon link: WASD 9-Key Cherry MX/Zealio Switch Tester with Keycaps and O-Ring Sampler Kit https://www.amazon.com/dp/B07V4H646W

    • #17139
      Jean Mellano
      Participant

      mike,thank you so much for this… i am ordering the tester u recommended.  stay tuned

    • #17726
      Diane Crosby
      Participant

      I began to recognize a neurological buzzing feeling in the middle of the night and then progressed to left hand side tremor in arm and leg about 4 months later before seeking a diagnosis.  Have been on azilect for 3 years and it seems to work during the day.  Not yet on levadopa and hope to be able to postpone that as long as possible.  Seems from reading postings that everyone is different in terms of identification, symptom progression, pace of decline.  May we all find our path in the process.

       

      • This reply was modified 6 months, 2 weeks ago by Diane Crosby.
    • #17743
      Tina
      Participant

      I was wondering if anyone has had the feeling of being shaken like a rag doll. I could put up with the tremors and headaches until I felt like I was being grabbed by the neck and shaken, while the base of my head felt like I was being kicked.

      Since I’ve been on a dopamine agonist it’s been under control unless I get overly stressed, upset or fatigued. Then I start to shake all over again and am forced to talk myself into calming down.

      I wondered if this shaking all over inside is what some of you were describing as internal tremor.

    • #17744
      Michael R. Scott
      Participant

      Tina,
      Mine began as an essential tremor in my left had and then went to Parkinson’s when it got worse. I have a history of an almost life ending skull fx. and concussion and crush injury on the right side of my head and body some 47 years ago. I was diagnosed about four years ago with PD. I was put on Azelect and carbo/leba at that time. Despite the above drugs, the need for more carbo/leba has increased as time has gone on and the off time tremors have gotten worse. I believe that is pretty typical. I have a numbness that starts in my left little finger that is a trigger for another dose. If I stay with that indicator, I don’t really have off times, other than when I wake up in the morning. Sometimes in the morning it will not start until 8 hours of sleep, sometimes it begins at 6 hours depending on how successful and deep was my sleep.
      Mike Scott

      Mike Scott

    • #17745
      Michael R. Scott
      Participant

      Tina,
      Mine began as an essential tremor in my left had and then went to Parkinson’s when it got worse. I have a history of an almost life ending skull fx. and concussion and crush injury on the right side of my head and body some 47 years ago. I was diagnosed about four years ago with PD. I was put on Azelect and carbo/leba at that time. Despite the above drugs, the need for more carbo/leba has increased as time has gone on and the off time tremors have gotten worse. I believe that is pretty typical. I have a numbness that starts in my left little finger that is a trigger for another dose. If I stay with that indicator, I don’t really have off times, other than when I wake up in the morning. Sometimes in the morning it will not start until 8 hours of sleep, sometimes it begins at 6 hours depending on how successful and deep was my sleep.
      Mike Scott

      Mike Scott

    • #17752
      Mary Beth Skylis
      Moderator

      Tina,

      I don’t have very much knowledge about internal tremors. But what you described sounds eerily similar to what I have heard. My Dad (diagnosed in 2013) tries to keep his stress levels to a minimum because it helps his symptoms overall. Did you start feeling this type of tremor early or did it seem to develop later?

    • #17753
      Tina
      Participant

      Mary Beth It started about 3 years ago. I’ve figured out that I first started having PD symptoms about 22 years ago. I was diagnosed in 2019 after they really got bad and I started  meds which have helped immensely.

      I had horrible migraines and sinus headaches my whole life. I blacked out and fell ever since I was a kid but the drs said my headaches had nothing to do with it. Ice pick headaches deep in the middle of my head and through the temples as well as cluster headaches started 6 years ago followed by 3 retinal detachments. My doctors said they had nothing to do with it, although I had massive pain behind my eyes each time they happened.

      The “boot to the back of the head” headaches started 4 years ago, about the same time the “rag doll” shaking did. I suspected something was going on with my motor control.

      The “sledgehammer on the top of my head” headaches happened right before I was diagnosed with PD. I went to the ER as I thought I might be having a stroke since it runs in my family. My blood pressure “went through the roof” they told me, which was weird as I’ve always had 80/60.

      So I’ve come to the conclusion, at least in my case, that the headaches are a sign of a problem with the “dashboard” in my brain. I’ve always had a long list of medical issues following these headaches my whole life, which I think are really just symptoms and a smaller part of the larger problem, an issue with my brain wiring or something like that.

      My drs have never really figured out my blackouts and falls since I was young, like age 5 at least. They thought I had polio back then. So maybe PD is somehow part of a genetic thing too, since my dad had “the shakes” as it’s called in my family.

      Michael, my mom had some kind of mental problem we thought because she was verbally abusive. I’m the only one that she physically abused, dragging me down the hall by my hair and slamming my head on the ceramic sink in the bathroom. She said she hated washing my long hair which my dad liked. Drs have told me that’s enough to have caused trauma to my brain, so I think it may be a part of it. I’m not the only one with headaches in my family though.

      I first noticed the shakes with my dad when he was about 40. He used to get so emotional, like angry and cry, that I didn’t know what was going on with him. When he was about 70 he started shaking, falling and whatever else and they thought he had ALS. They sent him to Cleveland Clinic and did a nerve biopsy but never figured out what was wrong with him.

      It turns out though that I was diagnosed with Myasthenia Gravis last year so maybe he had that instead of, or in addition to PD, like me. It’s an autoimmune MD disease. My older sister has the same emotional rages like my dad did and falls a lot, and she has autoimmune rheumatic arthritis.

      So I really think a long burn PD condition that’s familial like mine is possible too, not just like M Fox has, which was pronounced from the start. My dad and me both started having symptoms around 40, and it didn’t get bad until 20+ years later. I don’t know when my sister’s symptoms started but she had rheumatoid in her teens. She’s been so emotional the last few years she refuses to talk to anyone in our family, which adds to the stress.  This condition has definitely taken a toll on our family.

      My son, who is now 40, first noticed a twitch in one of his eyes in his 20s. I’ve had the same twitch since my 20s. So I think it’s definitely a slow burn in some families, not just the rapid decline like M Fox had. I’ve never heard anything about his family so I wonder about that. Does anyone here know about that?

    • #17754
      Paul D Lefebvre
      Participant

      Tina, Thank You for sharing your experience here on this forum, as it’s one more story that puts PD in perspective and helps some of us see the condition in a new light. Your description of internal tremors was good for me to hear; I most often include internal tremors when talking about PD, but I’m not aware of hearing others talk about such tremors.

      Your writing at length so cohesively articulates the condition well. You could be called the Metaphor Queen with your descriptiveness. It’s impressive that you can write at such length. Your side story of other affliction is what helps put your PD struggle in perspective.

    • #17757
      Tina
      Participant

      Paul, thanks. I spent decades in the “words” field using various skills in different jobs. I always thought I might write when I retired but I find it so frustrating trying to think and type now. I guess that’s why when I come here and open up my mind it all spills out.

      No one on the outside of this condition really gets it and I don’t have the motivation or energy to try to help them understand it. So I’m grateful for this forum

    • #17758
      Mary Beth Skylis
      Moderator

      Tina,

      I second what Paul said. Thank you so much for sharing your experience. I recognize that it can be very difficult to describe PD to anyone who hasn’t experienced it. But I’m grateful when people try, because it helps me understand what my Dad is going through. Your wordsmith skills show! Maybe one day you should write an audio book.

    • #17759
      Tina
      Participant

      Mary Beth thank you. It’s funny to think about accomplishing something like that when I’m in the middle of moving. Maybe one day I won’t feel consumed like I do now, and I’ll take a shot at it. Never hurts to try to expand one’s life experiences and revisit that bucket list from time to time.

    • #17874
      Garrett McAuliffe
      Participant

      My tremor was my first indications of Parkinson’s. It was 10 years ago that my pinkie started shaking. I was leading a trip for students to Ireland. Of course constipation preceded it for about 10 years earlier.Now 10 years later it is distinctive in my right leg and my right arm. At this moment I am dictating this message because my finger will not do the work! I find stress, stress, stress is the biggest factor as well as the medication of course. I take one and a half tabs over three hours of carbidopa levodopa

      Somebody says that 50% of Parkinson’s is psychological and 50% medication related. I find that to be true. I’m trying to continue to be a college teacher 10 years later. in the middle of most classes I start shaking and I have to plow my way through the rest of the class. I’ll take a class break often and lay down in my office.
      Now I am lying in bedAnd my leg is jumping like crazy. when I stop trying to dictate this it will be better if I lie down and rest.
      I find mindfulness meditation to probably my best bet as well as of course medication. Social events make my stress higher and my symptoms worse! How to live stress-free? not possible.
      But I want to emphasize here is that along with my Tremors there is a buzz of tension or anxiety that comes with being off. Does anyone does experience that physiological buzz or anxiety with the off period?Again I better stop or I’ll be exacerbating my tremors!

    • #17878

      Hi Tina,

      If you have the urge to write but typing is problematic, perhaps you could use one of the dictation aids – Dragon for instance.  Then you could get your thoughts down quickly.   This might be very helpful.

       

       

    • #17879

      My husband first noticed a left-handed tremor about two years ago.  He was not formally diagnosed  until close to a year ago.  His tremor has increased slightly but still very sporadic.  He joined Rock Steady Boxing which has been a great help physically and emotionally.  Still not on any medication but follows/up with the Neurologist every six months.  She will have just returned from a major Parkinson’s Conference when he sees her in June and she is hopeful she will have some new, updated information.  We hope that it is just a matter of time before a new treatment proves to either reverse or stop the progression of the disease.  To live without hope is to give up and this is something we can’t do.

    • #17881
      Tina
      Participant

      Thanks Mary. I do use my ipad and phone to record thoughts as I have a hard time remembering ideas. It’s frustrating always having to correct the app’s typing but it’s still rewarding to feel I’m accomplishing something.

      I think after I get settled in after my move I’ll get serious about it. I figure if I can just work on the table of contents first to outline the work, then I can   focus on a chapter at a time and maybe I’ll actually get it done. We’ll see if I’m really going to be able to do this before more of me is “done” from PD.  Chin up!

    • #17884
      Mary Beth Skylis
      Moderator

      Garrett-

      I’m particular interested in what you said about 50% of Parkinsons being psychological. Do you mean that dealing with the symptoms and changes affects the mind? In what ways has it affected your mental health?

      It sounds, to me, like you’re doing a great job of plowing through the changes.

    • #17885
      Mary Beth Skylis
      Moderator

      Mary,

      It’s great that he doesn’t have to be on medication. I know that the timing of it can be very  tricky. My Dad loves Rock Steady Boxing too. I think any organization that shares a common goal like RSB is pretty cool. Does he have favorite fitness regimens or exercises?

      There always seems to be new information coming out! You’re exactly right about keeping hopes high.

    • #17886
      Mary Beth Skylis
      Moderator

      Tina-

      Where are you moving? And were you able to find a living space that will help manage PD?

    • #17933
      Shannan
      Participant

      Diagnosed at 33, now 39.  Tremor in right leg and foot Dystonia toe curling were some of my first symptoms.  Dystonia is totally annoying and gone to inversion walking on outside of my foot and totally unpredictable.  Tried Botox several times without success.

    • #17968
      Tina
      Participant

      Mary Beth I moved in with my daughter who bought a house with a downstairs “apartment” for me. It’s beautiful and about the same space as my former apartment. There’s a large yard with lots of flowering trees and  birds and it’s very peaceful

      The only problem so far is that it’s on a little “hill” that I can’t descend or ascend so I really can’t go check the mail. The post office won’t bring packages up so I haven’t been able to get my belongings I had shipped.  I’ll have to change my habit of ordering everything too. UPS and Fedex will deliver to my door so I’ll just have to make sure everything goes through them.

      I have long list of things to do which is daunting and I have to “ask permission” first with anything regarding the house. So like any change in life there’s adjustments, positive and negative. I have to revisit my priorities constantly, and there’s both physical and mental activities so it’s a good balance each day.

      So far it’s been costly which is causing anxiety, and I’ve had to buy and prepare food again this first week. I know I have to quickly get assistance in this area, along with change of insurance and medical care, address changes, furniture etc etc.

      My daughter is so swamped at work and doesn’t own a vehicle by choice so it’s going to continue to be a challenge to adjust to a new environment apart from former friends and assistance. But I know it’ll all work out, I just have to do what I can, be patient and supportive of her situation too, and laugh often. Another adventure!

    • #17969
      Michael R. Scott
      Participant

      Dear Tina,

      Sounds like you raised a daughter with love, encouragement and support. And, now when you need help at an age, much younger than you ever imagined, she is there for you. You will get through these new problems and now you have to let her do for you, those things that you did for her, not so long ago… I had a wonderful Grandmother who used to say that “Kindness begets Kindness and Decency begets Decency”…. Now thank your lucky stars, that in having giving so much, you are about to receive so much….. A lot of us here, have been, or are going to be, in your shoes…

      And I for one, have been amazed at what has happened since I gathered my children to explain why their Dad, at 74, who only last year could ski and mtn. bike with them anywhere, now suddenly can not…

      And, how quickly they have stepped forward to try to help me adapt to this damned disease!….

      Mike

    • #17970
      Jo S.
      Participant

      Tina and Michael, your posts brought tears to my eyes. You are so fortunate to have supportive family around you and reaching out to help you. I have a spectacular husband, but we have no children to help. I have a sister and two sweet nieces, but they live quite a distance away, and my mother is deep in dementia right now, which is heartbreaking. We really don’t have family or friends who understand or can assist. You both have much to be grateful for (and I’m a little bit green with envy).

    • #18106
      Tina
      Participant

      Jo S. I feel for you. When I started this “journey” I felt very much alone. I had to adjust and try to open up to others to get some emotional and practical help, despite my hesitation to do so.

      I’ve always been perceived as extremely independent, one who helped others and refused help from others. But I quickly discovered this is a condition that makes the sufferer and caregivers dependent on others for support.

      I started sharing my status with others, making my needs known and accepting whatever helped was offered. I found people are incredibly understanding and supportive of this condition.

      I’m confident you will find this support as well. It just takes reflection and acceptance, and the rest will follow. It’s important to let others “spread the love” as it can quickly become overwhelming for them when they realize the needs are ongoing and progressive. The same goes with caregivers in the family and friends.

    • #18111
      Jo S.
      Participant

      Thank you, Tina. I appreciate your thoughtful words of encouragement.

    • #18135
      Mary Beth Skylis
      Moderator

      Tina, my heart cracked a little upon reading your post. It’s really scary to be vulnerable and tell your loved ones that you have needs too. What if I cause problems by speaking up? But it’s also so vital to quality of life. I’m really glad that you’ve been able to open up to others about your journey. Did it take a long time to feel supported?

    • #18220
      Olivia
      Participant

      My grandma have the same problems.

    • #18230
      Karla Burkhart
      Participant

      I was diagnosed in 2014 but had symptoms for at least 15 years prior. I was told for a long time I had Sjogrens, an autoimmune disease, which included pain and extremely dry eyes/mouth. It wasn’t until a started a tremor in my left hand that Parkinson’s was thought of. It seems that all the symptoms I had been having also fall under the PD list.

    • #18249
      Mary Beth Skylis
      Moderator

      Karla,

      Has your diagnosis since changed? And do they think all of the original symptoms are related to PD?

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