The Early Signs of Parkinson’s That My Sister Experienced

Jo Gambosi avatar

by Jo Gambosi |

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We encounter signs almost every day of our lives. Traffic lights tell us when to stop or go, and road signs tell us which exit to take. Turn signals (when used) let us know if the car in front of us is turning left or right. Dark clouds in the sky indicate an impending thunderstorm.

But are there early signs of Parkinson’s disease (PD)?

My sister, Bev, wasn’t diagnosed with PD until 2017, though she’d been exhibiting physical signs for eight years that no one, including healthcare providers, had attributed to Parkinson’s.

She told me that while working as a nurse, and then as an echocardiography technician, she experienced the shaking of her head and left hand. Bev also had some issues with dizziness, balance, and walking.

“My patients were asking me if something was wrong because my head was shaking, and they thought I was seeing something wrong on their echocardiogram,” she said. “I never realized that my head was shaking at the time. My doctor at first thought it was just due to my aging.”

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The Parkinson’s Foundation has shared 10 early signs of PD, including tremor, small handwriting, and loss of smell.

While younger people with early-onset PD may have some of the same signs and symptoms as older individuals, the onset may look different, so their issues may not be attributed to PD.

The American Parkinson Disease Association notes that, “Because the majority of people who get Parkinson’s disease are over the age of 60, the disease is often overlooked in younger people, leading many to go undiagnosed or misdiagnosed for extended periods of time.”

My sister was finally referred to a neurologist at the Cleveland Clinic Center for Neurological Restoration in Ohio, as her symptoms slowly but consistently progressed. After multiple tests, including an MRI, cognitive testing, and a movement and balance analysis, she was diagnosed with PD.

One of Bev’s early signs was weakness in her left hand, which she attributed to carpal tunnel syndrome. She regularly conducted echocardiograms and electrocardiograms, which required a lot of constant hand movement. She did not have stiffness or balance issues initially, but she did have a slight head tremor.

As Bev’s PD progressed, she noticed that her writing was changing. She now has stage 3 PD and said, “Sometimes I can’t read my own writing. I feel like it looks like chicken scratch!”

Abnormally small or cramped handwriting is known as micrographia. This sometimes appears as an early sign of PD, but not everyone with PD will develop it.

Bev also has issues with balance and leg weakness, and because of these, she does fall. She goes to physical therapy for strengthening and takes a falls prevention class offered in her community.

Bev always had a softer voice than me. After all, I was the younger sister and wanted to be heard! However, her voice has become increasingly low-pitched and she sometimes slurs a bit.

Bev also has problems with her sense of smell. She said, “I can’t smell much of anything anymore.” There could be a strong odor, like that of an onion, and she won’t smell it.

Bev also has cognitive issues, mostly related to her short-term memory.

Experiencing one of these signs doesn’t automatically mean someone has Parkinson’s, but the issue should still be brought to a healthcare provider’s attention.

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Currently, there is no specific lab or imaging test that can detect PD. However, a test called DaTscan can assess dopamine levels in the brain and help indicate if a person might have Parkinson’s. This imaging test is similar to a CT scan, and involves injecting a drug into the bloodstream. Johns Hopkins Medicine notes that, “The drug binds to dopamine transmitters in the brain, showing where in the brain dopaminergic neurons are. (Dopaminergic neurons are the source of dopamine in the brain; a loss of dopamine is what leads to Parkinson’s.)”

The DaTscan can help your doctor confirm a diagnosis or rule out a disorder similar to Parkinson’s.

If you have Parkinson’s, what early signs did you experience? Let me know in the comments below.

***

Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

Comments

Mary Klein avatar

Mary Klein

My hubby experienced a loss of smell several years before his left-hand tremor began. I recognized this as a warning sign that something was amiss. I was also aware that it was a flag for PD but hoped that it was not in his case. He experiences slower movements, some mild brain fog (finding the right word), some mild balance issues when standing still especially (wants to lean backwards). He is three years into his hand tremor but still not on any meds as it has progressed slowly and not constant. Two hints a friend of ours gave us that some may find helpful. When standing and feeling like you are falling backwards, place one foot back and you will be much more in balance and stable. Also, some people can end up with carpal tunnel syndrome from the constant tremor. Wearing a wrist brace can help prevent or alleviate this.

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Thomas Rutschman avatar

Thomas Rutschman

I have had Parkinson's for ten years now. I probably had it a number of years before it was diagnosed--I simply thought that "if this is what getting old feels like, then I'm old..." People noticed my poker face (lack of expression in my look) and the fact that I didn't swing one of my arms as I walked. And I felt stiffness. My students noticed my voice getting softer. My writing became so small I could hardly read what I had written. And I started to lose some of my sense of smell. And I needed a nap once I got home from school. I mentioned all this to my brother who is a doctor and he acknowledged that he had seen my poker face, but hadn't connected it with Parkinson's. He encouraged me to check it out and the neurologist confirmed that I had "Parkinsonism". My mother had Multiple Systems Atrophy and some in her family also came down with Parkinson's. So in our case, it is genetic I would think.

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maureen barker avatar

maureen barker

Being a very active person I became concerned when I started falling forward, bang, crash flat on the ground, no warning whatsoever, along with that my writing became vey small, having previously been proud of my large and clear script. So the old saying “ pride goeth before a fall” was never more true. Since I-was waiting for a spinal fusion I thought Thai was part of the deal. As for the writing perhaps old age! Despite seeing my family dr and the back surgeon I moved on, falling, falling. I went to the computer to see what Dr Google had to say, and sure enough Parkinsonswas one of the diseases. Off to family doctor I
suggested I may have P.D. No, no, no, was his reply, my reply to that was please may I have a reference to a neurologist which he kindly sent.
Realizing that P.D. is often difficult to diagnose I want anyone out there not to give up if you feel something is wrong, keep pushing and make notes, be confident and diplomatic, I wish I had been wrong but at least now I am in the know.
Behind every Parkinsons patient there are great doctors and GREAT Parkinsons
Society’s. You are never alone!
Maureen

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Chris Williams avatar

Chris Williams

Sadly this story is all too common. I struggled for nearly 3 years before I was diagnosed (following a DATScan).
I had classic Parkinson's signs - weak legs pulling to the left when walking; severe difficulty walking; weak left arm and lack of control of fingers; severe stiffness in limbs, tremor in hands and one thumb - but no my neurologist insisted I did not have Parkinson's. I remember telling him that I was sure it was Parkinson's but no I had to carry on for another 9 months without support. I felt isolated and abandoned,
I am not alone in this experience. I simply do not understand why given the most obvious of symptoms why neurologists cannot make the diagnosis.

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Catherine Mcneill avatar

Catherine Mcneill

My right shoulder had dropped and I couldn’t keep a bra strap up or keep my handbag on my shoulder either. I have had cubital and carpal tunnel surgery but I still struggled with dexterity - hand writing was awful and unreadable, I couldn’t whisk an egg either and struggled to pick things up. When wearing flip flops my right foot just didn’t seem to flip flop like my left. I was also very tired for no reason and use to feel different but couldn’t put my finger on the reason why

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Sandy avatar

Sandy

My husband has PD and his most pressing complaint is severe Debilitating fatigue throughout the the day . He described this is as facial , around eyes . BP ok -does shuffle, soft voice but no Dr seems to understand the worst fatigue that impacts his daily life. Any suggestions ? Studies ? He’s on meds that can cause fatigue but this is out of control . As a nurse , I’ve researched ..

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Alan Tobey avatar

Alan Tobey

Although I have no quantitative evidence, I have a credible scenario to believe my PD was not idiocratic (arising for no known reason). Briefly: for at least a decade I experienced gluten intolerance, but not Celiac disease, which was not diagnosed by multiple medical experts.

More specifically, I was intolerant of gliadin, one of the two main peptides composing the gluten molecule — eventually verified by a simple blood test. People like me — with ancestors from northern European coasts and islands — are more likely to have a variant of the main antigen-presenting molecules in their antigen-presenting T cells, whose task it is to gather up suspicious protein fragments for inspection by killer T cells. The variant form is large enough to grab larger than-normal peptides, among them gliadin. Normally these may not trigger any alarm; but if you have a significant dangerous infection (mine was shingles) that arouses the immune system the two can be considered parts of the same whole, and trigger standard immune reactions. In my particular case, I would get more and more spacey and inflamed as each day wore on (and I had eaten wheat usually at two meals). The feeling is IDENTICAL to the onset of a flu-type infection. And all symptoms disappeared if I stopped eating wheat.

But here’s the final connection: the gliadin antibody molecule that my system had been producing to fight the gliadin antigen. That antibody also cross-reacts with other immune system components to advance a condition called cerebellar ataxia, which is best understood as the consistent flu-like reaction triggered and sustained by ingestion of wheat. When I suddenly shifted to a wheat-free diet, my immune system continued to pump out gliadin antibody that accumulated, leading to symptoms identical to some usually associated with Parkinson’s. And those symptoms arose full-formed, not gradually: within two weeks I began to experience bradykinesia, resting tremor and imbalance difficulties which remained for years — not very different from the onset of PD symptoms from known toxic chemicals. Now, 12 years later, my symptoms have “matured” to include mist of the familiar non-motor conditions of the full-blown PD complex.

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Robin King avatar

Robin King

My husband who was diagnosed 4 weeks ago has had many years of numbness and tingling in his face . I was wondering if this could have also been an early sign ofPD?

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Elizabeth s bland avatar

Elizabeth s bland

I've been having shakiness in my right hand/arm ever since January of 2009. I used to be able to write w my right hand, but not since the shaking started. I also have balance issues. Both of my grandparents on my mom's side had Parkinson's disease really bad. My mom has it now.

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Sandra pryor avatar

Sandra pryor

I have head tremors, weakness in my legs
And sometimes hand shaking. I am a 77 year old lady with terminal cancer.

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Robert Healey avatar

Robert Healey

Coughing and being unable to breath was a big one for me. Also my hand writing had become unreadable to the point it was embarrassing. I now have a paused gait which results in many falls.

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JASON PRYTHERCH avatar

JASON PRYTHERCH

Interesting report. I myself struggle sometimes while Swimming, the loss of sensation in my right arm,, I first noticed this before Covid stopped me swimming inthe local pool. I Manage, was always a keen swimmer, til Covid. Also my Writing sometimes resembles Spidercrawl. Hope this helpful.

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Kathy Bertwell avatar

Kathy Bertwell

I had the D AT scan 3 weeks ago, it did show early PD. I have tremors on the left side, chicken scratch penmanship, tremors left side. I also thought I had carpal tunnel. I'm attending physical therapy for gait. Help with fall prevention and steady my ability to walk, which I can not do at this time. I'm rescheduled for Da Scan and 5 MRI in another year. I see a Cardiologist for rapid heart beat, Neurologist for advance MS and early PD, Ortheopedist for all the broken bones caused by the above, Pain Management for the above, and Physical Therapy twice a week. My wish is that all these different departments and doctors would get together and come up with one answer and reduce my meds from 25 per day to a easier more manageable number. I forgot I have a Endocrinologist who gets his hand in the pie every 6 months.

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BARBARA AK PORTER avatar

BARBARA AK PORTER

Both my husband and my son were diagnosed with young onset PD- 37 & 27 respectively. Yet their early symptoms were quite different. My husband's PD initially displayed tremor & shoulder lock that graduated to cognitive changes including hallucinations. My son's PD has dystonia as it's defining symptom. Ten years into the disease, progression now includes both sides, disturbed speech and more. Same family, different mutations.

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Kim S avatar

Kim S

I still don't have a diagnosis after 6 years but I'm in my 30's so they keep using that as an excuse to ignore my symptoms. I started having uncontrollable seizures six years ago. Since then my balance has declined (my left eye vision keeps getting worse so I often injure my left foot/leg since my depth perception is do horrible (I've seen opthamologists and have special glasses that don't help much). But I have the same thing where my handwriting keeps getting worse and smaller. I can't remember regular words for things or I'll spell familiar words completely wrong. Everyone thinks I just ignore them, as if I'm intentionally forgetting everything. The neurologist thought I had MS but I only have one lesion on my cervical spine so didn't meet the full diagnostic criteria. My hands shake a lot but only when I'm trying to do stuff, not when I'm resting(I'll have occasional twitches but not the constant shaking). I spend as much time as I can painting and doing photography since I'm scared I won't be able to do it much longer. The neurologist just attributes all my other symptoms to the seizures now (even though that itself is a new symptom..). Another weird thing that happens is it feels as if I can't wake up. I'll sit up in bed and do stretches and still keep nodding off, it's so annoying, there's so much I want to do. I never even got to live my life before my body started failing and now people in their 50's/60's always tell me "you think it's bad now wait until you get older", completely ignorant to the fact that I may not even live that long. Drs literally tell me "at least you don't have cancer", if it's not something super obvious like a tumor or a stroke then they literally don't care. I've heard "come back in six months if it's not better" dozens of times. It feels like I'm just a guinea pig for these random medicines now. The ssri drugs make my seizures worse - I feel like all this stuff has to be relevant somehow, just wish I could get a Dr who cares

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Richard Gresset avatar

Richard Gresset

I was diagnosed with PD late 2013. I started to have minor symptoms 3 or 4 years before. I First noticed that my left hand had small tremors when starting swimming during several seconds. I also had weird smells difficult to describe.
In 2010 I was on vacation in Cape Town with my family and I was the only one to smell a strange odor in one of the
bedroom. In June 2011 I noticed that I had less skill with my hands during a technical training in England. Slowness while screwing compared to others.
At that time i also started to stutter slightly; In 2013 my handwriting changed and became small with difficulties to sign documents. My tremors in my left hand were triggered by emotional and stress.situations. I also started to
walk differently from time to time.
Today symptoms have worsened but II still have confidence in science to find a better treatment or even cure this
awful disease.
Since then

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Thomas Rutschman avatar

Thomas Rutschman

It seems like the unwillingness to diagnose someone with Parkinson's is a common thread. Since it supposedly is irreversible, I guess doctors prefer to hope it is not what it is... The best thing I have done is take Mannitol (a sugar used for diabetic foods, approved by the FDA) which has greatly improved my symptoms. After 10 years I once again swing my arms when I walk, write legibly, can smell and taste again, my facial expression is much improved and more. I realize PD is very different from one person to another and Mannitol might not work for you--but give it a try!! I still take my Levodopa, but nothing I've tried has given this effect before!

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Paul B avatar

Paul B

My first indication was the onset of RBD (REM Behavior Disorder). In normal REM sleep your body is kept largely immobile but with RBD you can move freely. I threw myself out of my bed and yelled or thrashed in my sleep. I had to be careful not to hurt myself or my wife while sleeping. After researching the literature on RBD I found that greater than 80% of people with RBD eventually are diagnosed with a neurodegenerative condition - most frequently PD. I also began to experience issues with balance and had an instance of syncope resulting in a visit to the ER. About a year later I was diagnosed with PD.

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karen steck avatar

karen steck

what you just stated is identical to what my husband is going through

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karen steck avatar

karen steck

keep looking, you will be blessed with the right doctor!

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Colette Houle avatar

Colette Houle

I have been diagnosed with PD three yrs ago. Looking back I remember falling when I worked in my garden and my balance was terrible. My feet would not move like it did with dancing. My dancing was awkward and my feet slow etc

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Susan Hall avatar

Susan Hall

I started having symptoms in my early forties. It took five years to get a diagnosis. There was something in my collection of weird movements that led the neurologist to order a genetic test. Turns out I do have a specific gene mutation that causes this. I have three sisters and we all have a genetic mutation. Interestingly, the gene is recessive, so you would have to have it from both parents. Sister #2 and I have both of the markers, but sisters #3 & #4 only have one of them. This should not produce symptoms, but they do both show less severe symptoms, with less of the movement disorder symptoms and more autonomic nervous system symptoms. These include fatigue, depression, cognitive issues, deregulation of body temperature, excessive sweating, heart rate and blood pressure problems. I have all of it.

During the time before the diagnosis, I would complain to the Doc about the sweating and the fatigue, etc. I did not know whether these symptoms were attributable to Parkinson’s. I was never given a straightforward answer to these questions, and we just moved on to another subject. It was not until I started reading posts from other Parkinson’s patients, that I realized that ALL OF IT is attributable to Parkinson’s!

For a long time, the symptoms stayed the same, but eventually began to progress. This type of Parkinson’s progresses pretty slowly. However, over the last five or so years, a time of intense stress, the symptoms have become more and more prominent. I am about to turn 70, and I’m falling all the time. I cannot just stand in place even for a second. I will just plop right down to the ground. I trip very easily, even on my own feet! Stairs are nearly impossible to go up. Coming down is easier. I can’t walk very far. I have little strength in my thighs any more and the muscles very quickly start to burn.

One of the earlier posts said something about wishing there was one person coordinating medical treatment and I have the same feeling. There is a different doctor for every body part. Case in point: I have a pinched nerve in my neck and severe arthritis in my shoulder, with a different doctor for each - and those body parts are four inches apart! I also have arthritis in my knees and have had cortisone shots for each of these. But I have to remind them of how many shots I’ve had over a given time period! There should be a case manager in a situation like this.

I would be interested to hear from others about their experience with non-motor symptoms as described above. Also, they talked to me about Deep Brain Stimulation, which I doubt I would do at my age. If anyone has had this procedure or is close to someone who has had it, I would love to hear from you.

Thanks.

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Peggy Darcy avatar

Peggy Darcy

Medical mystery for years, till age 50 now 57 yrs old. One doctor saw physical indications that Chromosome Test be done to rule out a different but similar syndrome, and history of anxiety, depression and a LEFT HAND WAIST TO FINGERS ONLY TREMOR. Sent to several Neurological doctor who indicated early on set PD. Also, Chromosome test reviled I am one in Thousand born with XXX Syndrome?! Imagine? I have worked and struggled my whole life, when I was younger in grade school my legs would just give out on me. I thought, I was just clumsy.
Well God Bless Everyone! Mine is not hereditary happened at cell division...I am a miracle to say the least!

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Susan Watkins avatar

Susan Watkins

Sandra you are in my prayers 🙏

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Susan Watkins avatar

Susan Watkins

I was diagnosed with PD Aigust 2019 but had a feeling that the handshake was due to not eating breakfast. Then in December 2018 I was taken to the er in excruciating stomach pain that came on early after I awoke and went to the bathroom. It was diagnosed as an Ileus which is normally caused by a motility issue in the small intestinal tract. After 5 days on the hospital I finally moved my bowel and after an MRI came back clear I went home. I had balance issues that were getting worse especially when I turned quickly on my feet. Then I started getting double vision at night when watching TV and blurry vision when reading...when you have of your left eye turns enough inward to cause the double vision and reading glasses have helped the blurry vision while reading. Then I started to get involuntary movements here and there, a girlfriend of mine noticed them and grew concerned. Long story short I got diagnosed and my neurologist put me on Azilect .05 at first and I have been taking one 1.0mg tablets daily and my overall wellbeing is the best it was since 2005. I still have the eye issues when I am tired or strained my eyes, otherwise with the help of an excellent pt who never dealt with a PD patient, my balance has improved and I am at my best. The last time I saw my Neurologist and Cardiologist they said they would never know I had PD. As a matter of fact my Neurologist said that I should be a poster child for Azilect😊

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Deborah avatar

Deborah

I am here because my father has PD with tremors and forward falls. He also survived a severe brain injury.
Ok I have a rheumatoid factor of 240 IU/ml I have undergone more than one RA x-ray test and other autoimmune disorder tests to no diagnosis. I was diagnosed with cerebral ataxia ten years ago by a neurologist at UCSF. I have seizures from a severe brain injury and the seizures, ataxic gait, and falls are attributed to the injuries.
I will ask my primary doctor for the gliadin antibody test. Thank you very much 😊

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Rita avatar

Rita

How do you take Mannitol?

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Bob Miller avatar

Bob Miller

Looking back, I didn't understand why my voice was so affected. 40 years doing a radio show and over the next 10 years, the voice just deteriorated. It is difficult to speak. Handwriting went to scribble as well. In 2015, I was diagnosed after a nuclear head scan. Tremor is minor but fatigue is everyday. My brother also had PD and died a year ago. The only good thing about PD is I can laugh about it, telling friends I excel in playing the tambourine.

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Marie G avatar

Marie G

Ru taking phenytoin for your seizures???

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Susan Watkins avatar

Susan Watkins

Have they tried Asliect or another MOAB's? I would get a second opinion read my earlier reply explaining my story. From 2005 I had an out patient procedure and from that point forward, I forgot how to even get on the internet never mind manage software tech support right before. 14 years later it has a name....PD...I'm good with it as I have a neurologist that's up to date on PD and doesn't rush appts or push levadopa too early

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Annie avatar

Annie

I was diagnosed with young-onset PD 9 years ago. Symptoms started much earlier. I experienced spradic, severe episodes of fatigue in my 20's, felt like I'd die if I didn't get to sleep immediately- it was exhausting, and I noticed the inability to physically recover quickly after exerting myself despite being an endurance athlete. My typing got really bad as my left hand responded slower than my right, consistently resulting in certain words being misspelled-all the right letters but in the wrong order everytime. Then I noticed my left foot seemed to drag, especially when wearing flip flops. Then my left arm stopped swinging. I only realized how stiff I felt after I got my first dose of dopamine. Had an intermitant twitch in my left thumb occaisionally and eventually a resting tremor in my left hand, but what got me sent to the Mayo Clinic in the end was waking up in the middle of the night to episodes of unexplainable anxiety- something I had never experienced before- dopamine stopped that immediately.

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Lillian.p Michi avatar

Lillian.p Michi

I have many symptoms of p.d.the worst being falling.im now in a wheelchair due to a broken hip from my 1st fall
I have had 2 mris done but other things show up but the Dr says no pd. I disagree at least thereis soething wrong
ething wrong. No idea where to go now.

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Kathy Kelly avatar

Kathy Kelly

I have a friend who had the deep brain stimulation. The tremors stopped but he lost his speech. After a period of time the batteries needed replacing. He had to wait about a month because of COVID & the tremors returned but they went away after the surgery. His speech never returned.

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Kathy Kelly avatar

Kathy Kelly

My husband has Parkinson’s also & he has the debilitating fatigue. He was taking BP meds 2x a day. Recently the doctor reduced it to 1 @ night. He’s much more alert.

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Patricia Getz avatar

Patricia Getz

The comments have been most helpful. I have several symptoms but have had no tests or diagnosis. I will schedule an appointment with a neurologist soon.

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Mary Martel avatar

Mary Martel

I was diagnosed with Extrapyramidial disorder with parkinsonsism like features due to long term use of pycyhiatric drugs. This was approximately 3 and half years ago. I have a softer voice, I have a problem with gait and balance I have out of nowhere feelings that I'm going to fall and then I do. It's like " oh scrap I'm to fall " and then I do. Always backwards! One neurologist believed me, the other acted liked I was crazy. I smell metal alot. My neurologist has no answers, he sent me to the other two. I've had physical therapy twice. She didn't agree with the diagnosis. I can't finish a sentence in one breath. Honestly I'm just scared.

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Darlene Williams avatar

Darlene Williams

I can relate to all these symptoms. Mine are and the same.

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PCollins avatar

PCollins

Hi! Please look on YouTube and their doctor Annette Bosworth… Dr. Boz for short. she found research on the Navy Seals & the seizures they had while deep diving. They were put on a low carb, high healthy fat, moderate protein (I think it was moderate protein). Please stop their seizures yeah

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Joyce Wheeler avatar

Joyce Wheeler

My husband's early symptoms included a little finger twitch but more debilitating was severe anxiety and claustrophobia. After 8 years since diagnosis he has most of the typical symptoms but also strange things like severe dandruff and scaley skin patches. Cognitive issues have gotten more pronounced. He's just 70 years old.

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Shirley Garbett avatar

Shirley Garbett

Hi my husband had Lewy Body dementia but before the memory began to fail for about 4 years age 74 he began to walk very slow and other movements were slow l asked him to go to doctor to see if maybe thyroid problem but nothing was found ,then after the 4 years his memory began to go and all other symptoms of dementia ,and as I believe Parkinson is associated with Lewy Body dementia , sadly he past away last year with covid while in a home .

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tina boggan avatar

tina boggan

kim s , this is going to sound crazy , but i have a sister with a dog , the dog started to have seizures, i poured through the mediccal books , long story short, i told my sister to give the dog peanut butter every day , the seizures dropped ...the dog was having several a day , it went to one every couple of weeks....sometimes our body tells us that we need to stop taking something , or to eat something that has stuff we are missing ...one of the guys that commented above yours was very deep, but right on the money, my advice , see an allergenist, then have your blood tested for vitamin def. , Ihope you find a good doctor

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Will avatar

Will

The reason is simple, but problematic of many professions that require diagnosis. Ever since I was 19 I worked in IT. My 2 main strengths were my ability to quickly and correctly diagnosis (even over the phone), and setting out a work flow that allowed my team to do the same while handling large work loads. Without both of these in place, correct first time diagnosis is hard to achieve. Even in a clinic, or hospital setting doctors are pretty autonomous in how they preform thier diagnostic duties. There are guidelines and policies, but ultimately it's up to the individual doctor if they follow them or not. I have noticed over the years each medical specialty has it's problematic stereotypical habits. Neurologist in particular, I have noticed tend to diagnosis based on thier past patient outcomes. This was something I strictly prohibited within my IT support teams. The reason being, that it provides a false sense of being accurate. When in fact I had repeatedly demonstrated that relying on past cases to diagnosis future cases netted only about a 60% first time correct diagnosis. While on the other hand, treating each case individually and following a good repeatable diagnostic routine increased first time correct diagnosis into the low 90% range. Once I would demonstrate this to the team, and management there was little resistance in gaining support to put the policy in place.

In a medical clinic setting, high patient throughput is required to maintain the business side of providing health-care. Office consults are not well reimbursed by insurance companies. Hence the very human problem of the doctor viewing thier current case threw then lense of thier previous cases as a primary tool in initial diagnosis. It's quick, but highly faulty, and causes patients to have to push for better individual attention to thier problem. Not the previous 50 cases.

I have been going through this my self. So far it appears I may have early on-set Parkinson's, motor symptoms, none motor symptoms, significant positive improvement with Sinamet, a Dat scan with reduced dopamine uptake, and countless negative tests to rule out other health issues. Yet I have encountered a high resistance to make the diagnosis throughout the process. With several doctors saying Parkinson's is likely, but not it. Which is self contradictory. Which by it's self would be amusing, if this was not related to a serious topic. I have had to push for the doctors to not stop attempting to figure it out. Difficult cases cost more money to the clinic then they are reimbursed for.

The biggest problem is, that early on-set is far less common then age related Parkinson's, and my case (first on-set @ age 33, current age 44) is being viewed through the lense of age related Pakinson's. Since this is the majority of the cases the movement disorder neurologists tend to encounter most often. The symptoms of which present differently in respect to which ones present early on, and often in the order and severity they occur. For example, how the classic tremor symotom presents between the two. In age related Parkinson's the resting tremor most often is the first to be noticed, and the most severe. As the condition progresses an intention tremor will begin to present as well. In early on-set Parkinson's it is most often the opposite, intention tremor followed by resting tremor as it progresses. Yet this gets overlooked, and the early presence of the intention tremor gets used as a "reason" to not suspect Parkinson's inspite of all the research to contrary.

Attempting to break one's doctor of the habit of diagnosis by previous cases is a diplomatically difficult task. I have had to switch to a different movement disorder neurologist due to my first having made the declarative statement, "it can NOT be early Parkinson's." Emphasis was his very early on. Yet was unable to articulate why, other then to cite my age. From that point forward he jumped through every hoop, and contortions he could to keep from having to back track on that statement. It became glaringly obvious that ego, and fear of admitting that his earlier declaration may be wrong was preventing any diagnosis from occurring. One of Parkinson's or any other at all. Leaving my best option to change doctors.

My current movement disorder neurologists has somewhat viewed me through the lense of her previous cases, but is actually going through a full diagnostic process. Which is all I have wanted in the first place. In the short term I do not care what it is called. As we know what has improved the most troubling symptoms, carbidopa/levidopa. In the long term we do need to identify the cause so I can better plan my future. Both in knowing what to expect, and how to plan for my future care.

The sad part is, that I was not the one who started this. I had been brushing the symptoms off for years. I don't need, or want this. It was only when I went to the ER for a visual disturbance, and slurred speech that they brought up the tremor, face masking, lack of arm swing, and gait problems. After an over night stay the visual disturbance and slurred speech cause was undetermined, but had abated. They then pressed me to follow up on the other issues. Then were expecting me to just drop it as if the symotoms were no longer happening once the declaration I mentioned earlier was made.

So don't be afraid to switch doctors if they are not pursuing a good diagnostic process. It can be mentally, and emotionally taxing at times but worth the effort. Enlist the help of a spouse, child, good friend, or even request the assistance of a patient advocate if you need additional support. It's not a sign of weakness. It shows them you are taking your health seriously. I unfortunately have to travel 81 miles to see my current movement disorder specialist, but that's due to a lack of specialist in my area. I hope you or your loved one gets the care they deserve!

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Will avatar

Will

I have been a firm believer that when a person has multiple health issues there needs to be a doctor assigned to coordinate care. Including the coordination of medications. Technically this is supposed to be the responsibility of your PCP, but the darkside of the rise of managed care prevents this. The PCP became the doctor who would do the referral, and then step aside. Very often the only communication between one's PCP and specialist happens in the form of reading the notes each enters into your medical record. These are often truncated, and insufficient. At one time I had a PCP who would call or email my specialists after every follow up with my PCP. It annoyed the hell out of them, but I thought it was great. I felt confident that my PCP had a much better understanding of the current state of my health, and treatment plan. He was best doctor have had so far!

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Allen avatar

Allen

Sounds like he'd benefit from modafinil (provigil). I have taken it daily for shift-worker sleeping disorder for years and it has changed my life.

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Anne Dodge avatar

Anne Dodge

I use mannitol in my coffee or tea. It helps tremors. I noticed tremors long before my gp. Turns out I had severe lymes and pd...lyme mimics pd. I have both...tremors showed up after extreme stressful events in life.

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Donna Hill avatar

Donna Hill

Have you shopped for a neurologist who specializes in these conditions? If you had unctrolled seizures, I'd suspect they did aneurologic workup. I have similar symptoms to what people are describing here, but different reasons (etologies). I hope you can find someone who will do a thorough workup and give you the correct diagnosis. I understand the feeling of when people diminish what you're going through in an attempt to make you feel better about it.

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Lee avatar

Lee

Hello, I believe I’ve been suffering symptoms of Parkinson’s since Sept. 2020: I slur, I have right hand and finger tremors, shaking of head, my left leg gives up, I have loss of taste and smell. I’ve suffered from short term memory loss for over 10 yrs. I’m a Veteran, so I have the opportunity to see civilian physicians if needed; but both parties refuse testing for Parkinsons. Doctors believe my symptoms are from depression and stress.…. Stuck

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Pauline Kaminski avatar

Pauline Kaminski

My story is about the same as everyone else's ......but sadly my husband just gave up on the whole thing ...what I mean about giving up is .....he would not eat , take a shower, shave , go to the bathroom.....just gave up......😞.....he passed away in front of me on June 25th 2020 at the young age of 61......we were married for 43 yrs ...my best friend .....so if there is anyone out there that feels like giving up ....DON'T !!!....because it don't only effect you it also effects the ones that love you ......
.

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Sarah velander avatar

Sarah velander

So sorry to hear about your situation. I think some treatments with nutrients might help greatly..... Also there is a bean called macuna that has high levels of dopamine. My father relyied only pharmaceuticals and I feel there must be other more natural ways to support this condition from worsening ??

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White avatar

White

My dad has symptoms of Parkinson's disease he is taking levodopa but the drug is no longer effective what do I do please help out because he can't work anymore

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Anne Lynch avatar

Anne Lynch

Who recommended azilect. My husband is on pregabalin and sinemet. Neither no good.

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Sandra avatar

Sandra

I have had the symptoms for pD for 4 years my gp suspected PD and after waiting months to see a neurologist I took a list of my symptoms which he didn't look at and said I haven't got parkinsons he kept referring to my medical notes and saying it was anxiety and due to a inhaler my gp confirmed this was not the case and I asked why I was bumping Ito furniture and losing balance shaking left hand and slow movement when walking then he said it cos I smoke (6) cigarettes a day! I don't know how long this will continue with him but I feel as though he dosnt believe what iv told himof what I'm experiencing its so frustrating I feel abandoned

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Jaykumar C Patel avatar

Jaykumar C Patel

There is a group of neurologists at Mass. General Hosp, who have done work on autoimmune cerebellar antibody syndrome associated with thyroid autoimmunity. Please look it up at Pubmed.

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Sheila G avatar

Sheila G

I have a family history of Parkinsons on my dad's side. I have seizures, the unintentional tremor in my left hand and mild in my right hand, fatigue, balance issues, difficulty going down stairs. I also feel dizzy when changing positions in bed like I am going to pass out. My neurologist said that I do not have Parkinsons even though I have told him of my family history, he also put me on a medication for the tremors and said that they will never go away. I might discuss with him the DaTscan.

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Phyllis Henthorn avatar

Phyllis Henthorn

I have several of the symptoms aforementioned by others. I have asked my primary care physician if I could have PD. His answer was NO, you have essential tremors. He referred me to a neurologist due to my concerns and he concurs with that diagnosis. No further tests were suggested. My body feels much in a quiver most of time. Phyllis

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Susan Watkins avatar

Susan Watkins

My doctor prescribed NuVigil to me. I take 1/2 of 150 mgs because the 50mg tablets didn't do the trick. No more falling asleep after being only awake for 3 to 4 hours and it helped afternoon sleepiness.

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Kathryn Pigloski avatar

Kathryn Pigloski

I have so many symptoms and my grandmother had PD. But of course the Drs all say Im too young. Im 36. Im not sure what to do anymore.

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Mae avatar

Mae

My mom who is 73 has exactly the same symptom. From discussion with her PD doctors, this doesn’t appear to be a common symptom. When she gets it, she ends up rubbing her face and hopes her medication starts to respond.

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Maxine Carter avatar

Maxine Carter

My late husband for years before being diagnosed used to jerk terribly while asleep, then literally jump out of bed.Then we noticed he couldn't stop drooling out of one side of his mouth.A visit to the hospital diagnosed parkinsons, then gradually all the other symptoms, trembling hand,stooped walking etc.

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John R. parker avatar

John R. parker

Greetings,

I am a 73 year old male with Pd and diagnosed 13 years ago. My Parkinson’s began with a slight tremor to my left thumb.
I mentioned this to my GP and he asked me to walk down the hall and do the usual tapping drills with fingers and feet. He then said I think you are in the Early stages of PD. Long story short, I made an appointment with a neurologist and he agreed with my GP. I did not take medicine for 3 years although the tremors in my left hand were getting much more pronounced. One thing that I did was a daily trip to the gym alternating days with the treadmill and resistance training. This worked extremely well and had little to advancement in symptoms for a number of years. Finally the tremor moved to the right of my body and felt it was time to look into medication. The meds did help, but had to be carful as I would become sick to my stomach. That was when I decided to earnestly look into finding the best DBS neurosurgeon and that surgery was completed in November 2019. So far so good, very little tremor, but best of all no PD meds. The Neurosurgeon has pointed out that this is highly unusual (no meds}. Would I do it again? Absolutely I would.

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Deb avatar

Deb

I’ve been taking heavy duty psych meds since 2001. I attributed she involuntary shaking of my thumb to Tartive Diskinesia. However, over the last 6 months, my entire hand shakes at times and my handwriting is abysmal. The short term memory is definitely an issue as well. Not sure if this is medicine related or if I’m in the early stages of PD. I guess it’s time to tell the doctor.

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Regina avatar

Regina

Please, watch Dr.Eric Berg YT VIDEOS on Parkinson. Wish you good health.

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Liz avatar

Liz

Where do you get your mannitol from. There’s one advertised from France but want to make sure I get to authentic stuff.. also how do you convince your doctor to give it to you or let you have it..

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Richard Taylor avatar

Richard Taylor

I had noticed my right hand and arm shaking, and then I lost my ability to write. Also they did nerve conduction study on my arms. But it was for carpal tunnel syndrome. The tech said that I was shaking my hand, and when she put the needle in the nerve it sounded like a heartbeat. Finally a neurologist confirmed that I had Parkinson syndrome.

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Elizabeth Ann Rickman avatar

Elizabeth Ann Rickman

My 11 year old granddaughter, Aniyah has a form of Parkinson's disease Called Dopa-Responsive-Dystonia. It is very, very rare.My daughter and Aniyah's dad are both carriers. This is z gene mutation of Gch1. I have never heard of both parents being carriers. This was found out because they all had their genes tested. Aniyah can hardly talk, can't walk. She can't do ANYTHING for herself. She is now on Levadopa/Cardopa. It is a miracle medicine. Just about the only thing she can't do now us walk. Her mobility is so much better. She is a very brave child. She is truly my Inspiration!!

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Merry avatar

Merry

My dad had the deep brain stimulator, I could see quite a difference. I'm not sure what age he had it, early 60s. My dad was an Agent Orange exposed veteran and the VA recognized his PD as being caused by it. I'm not aware of anyone else in the family who has it. I personally was recently diagnosed with multiple sclerosis at age 45, no telling how long I've had it but a 3+ month long flare that involved dizzy spells (every 3 minutes) and walking difficulties led my newest provider (moved a few states away last summer) to send me for a MRI and then to a neurologist. My last provider, when I asked about the electric shocks when I bent my head down (Lhermitte's sign), said it was "just arthritis"..... I didn't even think to ask about the burning patches on my arms.

Anyway, I just wanted to add that if I needed the deep brain stimulator, as scary as that seems, I'd get it after seeing how much of an improvement I saw my dad have.

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Lisa Graber avatar

Lisa Graber

Hi! My dad had the Deep Brain Stimulation, in Sioux City, IA. His Parkinson was pretty fair progressed, and he did it almost 78. His tremors were so bad, that he had lost so much weight, no matter how many calorie intake he had per day. They didn’t give him much longer to live. He was the first one do it in Sioux City. It was performed by a Dr. in Omaha, NE, and he was the oldest patient that the Dr. performed it on. The first time it didn’t work, but my dad was determined, and he had it done, again 2 months later. It was a wonder success. He did it for his family, because he wanted to have more time with his wife, kids, and especially his grandchildren, who he adored, as they did their pop. It was a huge success, and gave us 6 1/2 more years with him. He was the bravest, and most wonderful man, that will ever know.
If any of you are thinking of doing DBS, I highly suggest it.
I’m dealing with neurological issues of the center nervous system, and have for almost 4yrs. One day I was fine and the next, I wasn’t. I do wonder if it could have something to do with my dad having Parkinson, and my mom have Parkinsonism. I know what everyone means about seeing a Dr. for this and a Dr. for that. They can’t really come up with a diagnosis. I’m called a Zebra, because of this.
I was very fortunate to get into the Mayo Clinic, in Rochester, MN., due to problems progressing to my eyes. I was turned down 4 times, because I didn’t have a diagnosis. I thought that’s what the Mayo Clinic does. With persistence, and help from a dear friend, and son, we emailed a Dr, in Neuro-Ophthalmology and I got a call the next morning, and was accepted in. I went the end of August, and the next week in September. It was a good thing because, no one in the Denver are could figure out what was wrong with my eyes. I have Uveitis Posterior Bilateral, it’s rare, and can go blind. I pray with treatment or surgery that won’t happen. I was also sent to neurology. You see my dad had Parkinson’s and Macular Degeneration, as did his mom, and 2 sisters. I go back 10/6-7, and see the Neuro-Ophthalmologist, and Infectious Disease. I’m being referred to General Internal Medicine, by the Mayo Drs., that I have seen. They believe my issues with my eyes, are connected to all the other issues I have. They also think that my dad’s Parkinson and my mom’s Parkinsonism could have something to do with my issues. With the help of my dear friend, and amazing son, we were persistent, and got in. This is something all my Drs. couldn’t accomplish.
By the way my dad was a stage 4 prostate and bone cancer, and he beat that, but sadly git Parkinson’s. My mom was a 2 times breast cancer survivor, and ended with Parkinsonism. I a breast cancer survivor. I do wonder if the cancer had anything to do with them getting Parkinson’s and Parkinsonism, and my mysterious illness of the Central Nervous System.
I wonder how many out there had cancer or some illness before getting Parkinson’s or Parkinsonism?
My vite to anyone that has Parkinson’s or Parkinsonism to do the Deep Brain Stimulation surgery. It did wonders for my dad. I’m so grateful to have this extra time with this courageous, amazing, brilliant, compassionate, loving, kind, and generous man. I so proud and fortunate to have him as my dad. Live you, Dad, your loving daughter.
Please look into DBS for you, your family, and all your loved ones. It’s a life changer.
I do believe genetics, some disease you may have had, or someone in your family could have had something of the nervous system or neurological.
Everyone of you are in my prayers. Never give up!
Sincerely,
Lisa🤗🙏

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Carol Dooley avatar

Carol Dooley

I don’t know what to suggest about the extreme fatigue. Perhaps frequent rest periods during the day can help. Talk to the neurologist about this also. A change in medication may help. I have had many med changes already in order to improve functioning. Keep as active as you can in the meantime

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Carol Dooley avatar

Carol Dooley

My early signs of Parkinson’s were severe loss of dexterity in my left hand, decreased strength in both hands, left leg drag, severe fatigue and weakness in legs. My lower back was often stiff and I started to lose weight.

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Sue Tumlinson avatar

Sue Tumlinson

When I first noticed my husband shuffling as he walked I was suspicious about Parkinson’s, and when a therapist noticed he wasn’t swinging his arms the correct way walking, I was more worried. He already had a small tremor and noticed a lack of smell and several other symptoms. But when referred to a neurologist in our town he was told “not enough symptoms;
come back in A YEAR. A few months later he saw a Parkinson’s specialist at a teaching hospital and was told the same thing.
Telling someone with a potentially progressive neurological problem to just bide his time for 12 months is not acceptable.
So much of medicine is—good luck advocating for yourself and finding help!! Blessings.

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Larry Jackson avatar

Larry Jackson

I have had PD for 2.5 years. I get testosterone shots every 2 weeks. Does help me.

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Kim Roy avatar

Kim Roy

Simply, nicely put. I like it.

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CHRISTINE CARPENTER avatar

CHRISTINE CARPENTER

My friend was diagnosed with PD 3 years ago and suffers all the symptoms described in all above letters but struggles with chronic dementia. Maybe one/three hours sleep one or two nights, that is all and never sleeps in the day.

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Catherine Atkinson avatar

Catherine Atkinson

Falls and depression came first for me, then memory problems. Have just been told that I had dystonia in my feet with a sign of juvenile PD. I'm 34 years old

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Leah avatar

Leah

I have had this experience whenever I told a specialist that I was fairly confident it was A or B. Typically, I think doctors assume (sometimes correctly) that patients don’t know what they are talking about…Even some of the kindest doctors I have seen can lean this direction. Now, whenever I’m fairly confident something is happening I hint to the doctor about it or frame my thoughts as a question rather than a statement. It’s a bit sad that I have to do that. And I was correct about what was going on initially, by the way ;) some of us are nerds and do a lot of research and I just happened to be correct.

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Joan Koelemay avatar

Joan Koelemay

I also had RBD, diagnosed at 60, as my first symptom (my husband said I never hit him very hard but kicked like a mule). Two years later, I developed orthostatic hypotension and syncope. Two year after that, at age 64, I became urinary catheter-dependent. Now, two years later at age 66, I had a DAT scan after worsening left leg weakness, balance problems, and stiffness made riding and dismounting from my horse suddenly impossible. The scan confirmed what was suspected - I have parkinsonism (Parkinson's or Multi-system Atrophy (MSA) - the DAT scan can't differentiate between the two).

I think it's only human to worry about what symptoms will show up next and when, how quickly my current symptoms will worsen, and how long I will be independent. For a long time I was terrified that I had MSA, since 90% of my symptoms are autonomic - and that may still be true. But all that worry was taking a huge toll on me emotionally. So I had to change the way I think about my condition.

I decided that since there are only symptom-based treatments available for either disease (for now), and my since neurologist probably won't know definitively which one I have for a few more years (or until I die), I have to find a way to let that all of stress go - and simply live my best life possible, as long as possible. To "not borrow trouble" as my husband likes to say. It's not easy, and that's one reason I joined this group. To give support where I can, and find support when needed.

So thank you, everyone, for sharing your stories. We are all on a journey. But I don't feel so alone anymore.

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Dr. Todd Levine, MD avatar

Dr. Todd Levine, MD

Thank you for posting your commentary about the difficulty of diagnosing PD early in the disease process. I am the Chief Medical Officer of CND Life Sciences, and we offer a reliable evidence-based test that requires a small skin biopsy performed in a clinician’s office. You can visit cndlifesciences.com to learn about the science behind Syn-One and how it is being used in clinical care. Parkinson’s News Today covered the Syn-One Test and our NIH award early this year: NIH Grant Supports Syn-One Test for Detecting Parkinson's, Other Disorders Early (parkinsonsnewstoday.com)

Todd Levine, MD, Chief Medical Officer of CND Life Sciences

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Rick Tabakin avatar

Rick Tabakin

I had loss of smell, low voice projection and deteriorating handwriting, but assumed these had to do with aging and other factors. It was only when I started to get tremors in my left leg and arm that my wife was able to convince me to see a doctor. As it turns out I had more symptoms but had not acknowledged them or tied them to PD.

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Dianne Newman avatar

Dianne Newman

Ten months ago, my husband was diagnosed with a neurogenic bladder. He had five liters of fluid taken off of his bladder and was then admitted to the hospital to see if he had any kidney damage. Fast forward and we wanted to know why this had happened. The doctor wasn’t much interested in the why, he just wanted to treat a symptom. From that day forward, my husband now has to self cath. In searching for an answer we started recognizing other symptoms that we really had not paid attention to. He had stooped over posture, slow movement, a stoney face, slight tremor and short term memory loss. After several CT scans, MRI’s, EMG, swallow tests, Myelogram and daTscan, he was finally diagnosed with atypical PD.
My husband was in Vietnam and the doctors believe his exposure to Agent Orange could be the reason why. My advice to anyone experiencing these kind of symptoms is to seek out the best doctors you can find. We traveled 275 miles to see a neurologist and we are so glad that we did. My husband is currently taking Levodopa and it has helped his posture and movement. The reason he was given an atypical diagnosis is because most of his symptoms are early stage, but the neurogenic bladder is a more advanced stage. His glass is always half full, so he remains a positive person.

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Robin King avatar

Robin King

My husband had numbness and tingling in his face for years also vitalago on his face . Went for numerous nerve conduction studies and every doctor said nothing wrong! Finally after years of him not feeling well wen to a neurologist who diagnosed Parkinson’s . Has hand tremors as well! On dopamine agonists now that has helped tremendously

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Beth Smith avatar

Beth Smith

How much Mannitol do you take? What symptoms does it help? Thanks for your help

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Beth Smith avatar

Beth Smith

Any side effects from this medication?

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Beth Briwbe avatar

Beth Briwbe

I put a teaspoon in my one cup of coffee each morning. I think it has help my tremors some. I still have them, but they have not gotten worse, and I went in to stage 3 PD in July. I was diagnosed in 2020 and told them I probably had it a year before, as I had a couple of the symptoms. I thought it was too much thyroid. I am holding my own. Still can drive, cook, do laundry, shop, etc. I just completed a Balance class and not do exercises daily, starting with 30 min on the treadmill, then floor exercises given me in class. But there are lots of exercises on line. Get started. It will help.

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Beth Browne avatar

Beth Browne

I order mine from Amazon. Mannitol Powder. MB (initals on front) It is made in France, packaged in the USA.

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