We all have stories that sound like this, “I was officially diagnosed on __________ (date), but looking back now, I had Parkinson’s symptoms for __________ (years) before.” Because there are no definitive tests that can easily diagnose the disease, it takes a whole lot of confusion, guessing, medical appointments, and trial medication regimens. Furthermore, Parkinson’s can be the last thing Neurologists are looking for, especially in my case. I was 32 years old when I had my official diagnosis but 29 when I had noticed my first Parkinson’s symptoms.
You know we have those moments that you will always remember what you were doing or where you were when you found out the news about something impactful? Mine was when Princess Diana died, when the twin towers fell on 9/11, and interestingly enough, the first time, I noticed Parkinson’s symptoms.
Impactful moments
I can remember the exact place I was. I had just finished working out at the gym, and I was driving down Lake Forest Road in Orange County, California. The windows were down in my blue Honda Civic, and my sunroof open as a warm breeze tumbled around me. I pulled up to a stoplight and noted that the pinky on my left hand was cramping. I could relax my hand and extend my fingers, but the moment I stopped focusing on the cramp, my pinky would curl back into an almost painful way. So I did, which most Parkies do, assumed that it was due to an injury or a strain of some sort, and it would work itself out.
Months went by, and the pinky on my left hand had now moved into my wrist, curling it down into a ball. I was starting tripping on my left foot because my toes were rigid. I noticed that I had lost the swing of my arm on the left side when I walked. This was when I knew, without a doubt, that it was something more sinister.
The years following were full of MRIs, CT scans, bloodwork, and medication trials. You have to remember that DatTscans were not very popular at this time. In most cases, the results of these scans show that Dopamine production is deficient, not a firm diagnosis of Parkinson’s disease.
Receiving the diagnosis
I finally got my diagnosis in March of 2010. When they recorded my Sinemet challenge, I would go into the office completely off my medications. They would do the regular movements to get a baseline, and then they would give you Sinemet (Carbidopa/Levodopa) and reassess my PD side effects. The difference in my movement and my spirit had completely changed. The good thing is that I felt like myself again, but the bad thing was that I improved when I was given medications for Parkinson’s disease, which meant I had an official diagnosis of PD.
For a trip down memory lane, you can view my diagnosis videos here:
For my readers, do you remember your first symptom of Parkinson’s, or were you completely blind-sided when your Neurologist gave you the diagnosis? I’m looking forward to hearing your story.
Sorry to be late to your blog. I am a retired family doctor and was diagnosed with PD on my recent 71st birthday. I had been referred to the neurologist and had expected to be leaving with a script for a beta blocker for essential tremor. I got Sinemet instead. In retrospect, I was a walking textbook of non motor symptoms for several years, including bouts of depression, chronic bowel problems resulting in a bowel obstruction and surgery, and a shoulder that didn’t swing, attributable to years of squash, the sport not the vegetable.
I consider myself pretty fortunate right now. It has not affected my squash, or piano playing.
I will continue to follow your website religiously. Thanks.
Hello Mark,
It’s nice to meet you! Thanks for sharing your story!
Wow, your video gave me chills. I was transported to the office of my first neurologist, who I’d been sent to see at age 46, after I’d gone to my GP about a “funny feeling” in my left hand. Also, my husband had noticed my arms were not swinging on our daily walks. After the very same assessments, I heard the shocking words: “You have Parkinsons “. It’s been a journey since then; after sixteen years, I take a LOT of medications. I am very thankful they still work, and allow me to participate in a boxing-based fitness program.
Shaknbake,
You were diagnosed at 46… isn’t that shocking? And now you’ve been dealing with it for 16 years… Good for you still putting on those boxing gloves and kicking PD’s butt! Well done! Thanks for sharing!
We had trouble getting an official diagnosis for my husband. WE were pretty sure that is what he had, but no doctor wanted to say that he did. we went to many places and doctors to get someone to listen. His first sign was lost of smell, but we didn’t put 2 and 2 together then, thinking is was just from his job or something from VietNam. The first sign that made me think oh no… i wonder if this is early parkinsons was when he kept getting choked when eating. when we would try to get doctors to listen to us, one said ” why on earth would you want him to have a diagnosis of parkinsons? I said we don’t WANT it, but we DO want to face reality and know what we are dealing with.” Another neurologist, as she was eating DRY oatmeal with her fngers a piece at a time, told us he doesn’t have parkinson’s, he just has a vitamin B deficiency.. Ive seen it time and again…. ” WHAT?? we got up and left that office… So, when we FINALLY got an official diagnosis, we were relieved.. Time to fight this monster !
Hi Toni,
It sounds like you two are a power couple ready to attack the monster Parkinson’s head-on! It appears like you’ve had a few duds for Neurologists. You’ve got to be your own advocate when you are not getting the care that you need. Cheers to you guys and keep on fighting!
It is so funny this this should come up right now…I am in the process of switching neurologists, and have been trying to create a timeline of symptoms, tests , diagnosis etc. I was 49 when I first started noticing oddities cropping up. My first sign was stiffness in my neck, for which i had physio once a week for nearly a year. I also had pain and stiffness in my left arm and shoulder……..in comes acupuncture, massage and chiropractic treatments…thank god for comprehensive benefits! None of these made a jot of difference
Then I noticed a muscle tic in my let thigh, and a very fine tremor in my left hand…but this only appeared when I was tired or stressed. The fact that I had taken to napping in my car , like a homeless person, at lunchtime just to make it through the afternoon didnt’ raise any red flags at the time.
Did I mention that I was a nurse, and worked in a busy health clinic packed with health care professionals of all shapes and sizes?!
I consulted with DR Google and to my horror saw that I fitted quite snugly in the Parkinson’s descriptions. OH NO YOU D”INT!!
Long story short…I eventually went to my GP regarding the tremor…and the speech slurring, and the microscopic writing, and the T-rex arms, and the slow gait…..comfortably wrapped up in my blanket of denial. Not a chance I had Parkinson’s…that was for old people…old men!
He promptly sent me for an MRI, to rule out a brain tumour. I got a phone call at work to tell me I had to go for another MRI as it looked like I might in fact have MS. “Yay..oops…did I say that out loud?? Not Parkinson’s but MS….much easier to tell people “…that was my immediate reaction… don’t ask me why.
A few more tests later and I was in a neurologists waiting room trying to convince my husband that I really didn’t need to be there as I had my diagnosis…and was terrified to hear anything else. The appointment took place in a teeny cramped office. The neurologist sat down and said, “you don’t have MS, you have Parkinson’s”…without opening my chart or looking at my scans. “no, no. are you sure there isn’t a brain tumour in there…they can cause the symptoms”. “No ” she said “when you walked in here you didn’t swing your arms”… I was flabbergasted….did I mention that you couldn’t swing a cat in her office, or that it was -30C outside so I was carrying my winter parka (pun intended LOL) and my handbag.
This was literally my worst nightmare…a disease I would not wish upon my worst enemy
I left her office distraught and still in denial…”she’s a neurosurgeon..she doesn’t know what she’s talking about” I muttered all the way home.
I wasn’t offered a sinemet trial, and continued on for a few months. A few months later, at a follow up appointment I asked for a second opinion, after being told “start running, become a jock…that will cure you”.
Onward over 9 months later I was seen by a very nice movement disorder specialist who gently held my hands, and told me that yes I had PD..at 50, but that he would take care of me. I initially resisted levodopa….I didn’t want to become a PD Dancer…but eventually relented, and Lo and Behold got my life back!
Lost my job, but got my life back.
Truth be told, my workplace sending me off on long term disability was that best thing that could have happened..And several counselling sessions later I could see that.
7 years on, I am fit and well, living a good life with my Perky friend.I travel, and do the things that i might have otherwise put off. I have to thank my husband and sons for always treating me as normally as possible, and for the support of my family/friends.
I think the hardest part of being diagnosed was telling people…anybody. and the guilt felt when they reacted..usually with shock and often with tears. Its still the one disease I wouldn’t wish upon my worst enemy, but as I tell everyone…I’m not dying..I just shake. And I see a shaky old lady still puttering around in my future.
The End of Chapter I of Me and PD! Thank you for bearing with me..if you made it all the way to the end!
Jackie Carroll
Hello Jackie,
Wow! What an expedition you’ve been on, but good for you to know your body. Even though you were in denial, you’ve found out that the cruel joke of Parkinson’s is that you don’t have to be an old man to get it! And toot toot for seeking out normalcy amongst the mental journey you’ve had to endure. Thank you for sharing your story. I know many of my readers will appreciate your strenghth. Wishing you all the best!
Hello Allison from the UK,
I am 48 and yet to have a confirmed diagnosis of Parkinson’s. I went to my doctor in July 2020 with pins and needles in my right hand and arm, she referred me to a neurologist just in case. In the meantime I went to a Chiropractor as I was having problems with my left thigh, he checked my arm and said he thought I had a trapped nerve. After his treatment my hand and arm felt instantly better – job done! My left thigh issue turned out to be mild osteoarthritis. My fine motor skills in my right hand weren’t great and writing was becoming tricky. I had a hospital appointment in March 2021 and the neurologist suspected a trapped nerve and sent me for a nerve conduction test, my friend noticed my arm wasn’t swinging and I said that was because of my trapped nerve. Naively, it didn’t occur to me it would be anything else, you know what is coming. The nerve test was normal so I had an appointment with the neurologist on 21st May ( that date is etched in my brain). I went to the hospital on my own not giving it any thought, not googling symptoms as I just never thought of it.
I will never forgot the 21st May 2021. The neurologist asked me to walk up and down, close my eyes and move my arms up and down, he asked me to write a few sentences and the silence was horrible. He just looked at me and said ‘I think it is Parkinson’s’. Err What? Are you sure? Could it be anything else?’ I asked. No he said – did you not think of that? Err No! To say I was shocked is an understatement, I just wanted to run out of the hospital. He gave me a leaflet and said he would arrange an MRI scan and a DAT scan and told me not to google anything. I did google symptoms when I got home and the arm not swinging and the lack of movement were give aways. As of yet I am not experiencing any other symptoms that I know of.
I had an MRI scan in July and have waited 8 weeks to get the results, I have had them today and as expected the results are normal. I ring the hospital about a DAT scan and all they can tell me is that there is a waiting list and it will take ‘ages’. I obviously am in limbo, I have contacted the hospital several times to chase scans. The Parkinson’s nurses have been in touch and have suggested taking a small dose of Levodopa (62.5mg) three times a day, I am waiting for the prescription. I am a little apprehensive about starting medication. I would appreciate your thoughts Allison and your followers. In watching your videos the difference is unreal.
On a more positive note in googling I found you Allison, I have read your book and you are an inspiration as my initial thoughts that day in May were Parkinson’s – I am too young (not a word associated with 48 these days) and I realise how naive and ignorant I was. I haven’t ‘come out’ yet as I am waiting for the official diagnosis. I have great support from my family and a couple of close friends.
And of course every ache and pain I am thinking – is this Parkinson’s? Or is this my age? I am getting pins and needles in my right foot and my left hand and it scares me. I am trying to take each day as it comes and be positive. Sorry for the really long post and thank you to you all for being a supportive community.
Betty
Hello Betty,
Whoa! What a journey you’ve been on. I am interested to see if starting Levodopa will help you. Because you’re right, you’ve been stuck in Limbo. What helped me get the diagnosis was doing a trial of Sinemet, as you see in my videos. That showed that the medication was treating the Domaine deficiency which was Parkinson’s. Keep pushing for that DAT scan. The more information you get, the easier it will be to get your diagnosis and the right treatment. I wish you well in your health adventures and I am happy to have met you! Thank you for sharing your story!
hello Betty,
I was 49 when I first started to notice symptoms of PD, and like you thought “no way, I’m too young!”. I struggled with the diagnosis, and with starting the medication. But a great pharmacist told me not to be afraid of what the meds might do in the future if they control your symptoms and give you your quality of life back now. I cannot say that I am totally at peace with my diagnosis, but we had a little chat, Parkinson’s and I, and I told it that I know its here to stay, but that the house rules are that it stays in its room and behaves itself. And we are getting along pretty well 7 year later. I have had to learn about the new Me, and give myself permission to listen to my body and what it needs- be that an afternoon nap or a last minute bail out on a visit/dinner etc. Whatever your diagnosis turns out to be, you will find your way around in your new reality. Dont ever be afraid to reach out for support or help. We are here when you need us
Jackie
Thank you Jackie and Allison, your replies really help. I like your thoughts on medication Jackie. I will be back when I’ve had the DAT scan. Thanks again x
No arm swing in 8th grade. Dopamine fluctuations 1995. Tremors ànd frequent urination 2011. Mystery stomach pains 2001…. pd is said to start in the gut.. hand cramps 2000. Anxiety all my life.
Those videos definitely hit home
I WAS HAVING PHYSIOTHERAPY FOR SIX MONTHS ON MY RIGHT ARM WHICH WAS CRAMPING WHEN I WROTE, WITH PAIN GOING UP TO THE SHOULDER. MY ARM DID NOT SWING WHEN I WALKED AND WOULD END UP CLENCHED ACROSS MY CHEST. FINALLY I ASKED MY GP ” COULD IT HAVE ANYTHING TO DO WITH PARKINSON’S?” HE WAS SURPRISED TO HEAR THAT MY OLDER SISTER HAD PD BUT HER SYMPTOMS WERE THE OPPOSITE OF MINE. SHE HAD BAD TREMORS AND FALLS. I HAD RIGIDITY. THE NEUROLOGIST CONFIRMED MY PD BUT I DEFERRED STARTING MEDICATION FOR A YEAR. I STARTED EXERCISING, WALKING , EATING LOTS OF FRUIT AND VEGETABLES ETC. WHEN THE PD PROGRESSED DESPITE MY EFFORTS I STARTED MEDICATION. TOGETHER MY NEUROLOGIST AND I DISCUSS THE OPTIONS AND AGREE ON THE DOSAGE ETC. I HAVE TAKEN PART IN CLINICAL TRIALS , RESEARCH ETC AND HAVE DONATED MY BRAIN FOR RESEARCH WHEN I NO LONGER NEED IT.
IAM NOW 79,A PROUD GREAT GRANDMOTHER OF 5 AND I STILL MANAGE TO GET DOWN ON THE FLOOR TO PLAY AND MORE IMPORTANT I CAN GET UP AGAIN.
Hello June,
Thank you for participating in a clinical trial! It is so awesome that you have taken your experience with Parkinson’s and found a way to help others with the information you can provide! Bravo!
It was during my older son’s wedding that I noticed the fern of my wrist corsage quivering. I couldn’ t make it stop. A visit to a neurologist showed nothing.. I didn’t have enough symptoms to make a diagnosis he said.That was December 2005.
Flash forward to February 2007.. I walked with a dragging left foot,. I fell flat on my face while hiking with no visible cause. My left arm did not swing. My handwriting was so small. I could have written code on the head of a pin. At 58, I knewI had Parkinson’s and the neurologist confirmed the diagnosis.
I’ll always remember that day.
Thank you for reminding me to live in the present and enjoy the little things – like fro yo!
Hello Ruth,
You seemed to have classic symptoms. It can be frustrating when you can tell something isn’t right, but they can’t see anything. Thanks for sharing!
Wow, Allison, I can’t believe you have video of this. The difference is dramatic. Even so, I wanted to cry knowing that your diagnosis was coming after that test. Tomorrow is the 5 year anniversary of my diagnosis. It is emotional for me every year. I am doing so much better now than I was then but it is still tough to think about that day. Swear I have some PTSD from it.
You look amazing all these years later. (Is it all the hard work, the fro yo running through your veins, or both?)
Hi Lauren,
I would say a little of both! Ha!
My husband noticed his leg tremoring while he practiced piano for my daughter’s wedding March 2015.
April 16 he had a heart attack. In his room his leg was flopping around on the bed. Surgeon dismissed it.
Primary Dr saw him two weeks later and sent him to Neuro. So was a year and a half from piano incident before he was diagnosed.
Hello Sheryll,
Your husband has been through a lot. Hope he has found some resolve.
Wow – your experience as a newbie was remarkably similar to mine. I know that all Parkie’s have their own individual responses to various stimuli, but in this area Allison you and I are two peas in a pod!
Hello Bob,
I’ve never been a pea in a pod before. Sounds comfy!
I recall a loss of smell was very evident but I never thought about PD at that juncture. I later noticed a tremor in my left arm which was a clear indicator something was amiss. I kept a normal routine for quiet a while, which included international training. I made it fine. I ingested a lot of antioxidants to include Moringa and exercised at an insane pace. Things went along well. I finally saw a neurologist after family and my GP pushed me in that direction. A workup ended up with a probable PD diagnosis early 2020 and Sinemet worked quickly on the cessation of the tremor, which was a big indicator. Anyway things moved along at a normal pace as far as the motor movements, but the non-motor issues were the big challenge. Finding a RSB gym with dedicated trainers was tremendously helpful.
I can say that the Perky Parkie Blog was by far the most important and reassuring resource that I found. And you Allison are a Rock Star. I never met anyone more generous with time and information and a willingness to help. Plato once said that we should learn from travelers on a road that we have not yet trod. You are that traveler who has walked that road and shared your experiences for the sole reason to help your fellow citizens. Thank you Allison. You are someone very special and altruistic from the heart. God bless. Keep on keeping on.
Awwwww, thank you, Wayne. I like the quote from Plato… it’s a good way to look at life. Thank you for making my day!
I was completely blindsided. I am 65 and have had an essential tremor for 30+ years and was taking medicine for it. At some point I noticed it getting worse and complained to my GP. She said perhaps this was a side-effect from too much synthroid and cut my dosage. (I had my thyroid removed when I was in my 30’s due to thyroid cancer.) Six months passed and tremor was just as bad. GP asked if I had ever seen a neurologist and I said no so she gave me a referral. It took 6 months to get in.
I went by myself to the neurologist because I didn’t expect anything significant. Nothing that a pill won’t take care of. Neurologist asked me to do a series of activities. I could tell I was failing, but didn’t think much of it. She asked me to walk down the hall and back. Then she asked if she could have some students watch me walk and I said “Sure.” I didn’t know what they were looking for, but happy to help! We got back in the room and she said “You have Parkinson’s. Fill this prescription and come back to see my nurse-practitioner in a month. And you probably should buy a cane.” Then she walked out. I was alone and cried my whole way home. I called my husband and he rushed home to be with me.
I did not go back. I did a lot of research, a lot of crying, and signed up to see a movement disorder specialist. It took a year to get in due to waiting list and Covid. But I am taking carbidopa/levodopa and have no plans to buy a cane any time soon.
I enjoy reading your blog and watched your diagnosis videos. Thanks so much for sharing. Your attitude is amazing, and inspirational!
Hello Katie,
Wow! Yes, I would say your Neurologist didn’t have a very good bedside manner. Maybe he/she could have been a little bit more patient and educational for you. Hopefully, the movement disorder specialist you saw was more understanding. Thank you for reading my blog. Hope you found it helpful!
I remember a trainer telling me it was weird I didn’t pump my right arm when I ran. I was 39. 6 years later I was diagnosed.
I went from speaking to my GP in the morning to seeing a neurologist the same day who diagnosed, this was confirmed by a movement disorder specialist 1-2 weeks later. It was unexpected to put it mildly.
After 2 years of being diagnosed we’re discussing whether to start medication, I’m really undecided but looking at that 2nd video maybe I should be more open! This would likely be a dopamine agonist to start. btw – i was completely unaware they give Ldopa diagnostically …
Hello Matt,
You do remember a specific moment that you noticed that something was off. Don’t be afraid of the medications. They really dropped Parkinson’s on your lap. Happy to hear that my blog offered you some insight!
Btw – as an update i started neupro last week. Not at a working dosage yet but can feel some rigidity fading.
Please continue posting this is a fountain of knowledge for me.
That’s Great news!! Hopefully it only gets better.
Noticed about 3 years before diagnosed that my right arm did not swing when I walked. When I finally went in was having trouble with my right leg dragging. That was 13 years ago when I was 54, then 8 years ago had DBS implanted. For the most part doing good,but have wearing off times. Good luck to you. Was interesting to hear about rechargeable batteries. Thank you for sharing.
Hello Carla,
The rechargeable has been great for me so far, but it does require some upkeep!
Weirdly enough I’m looking forward to my own DaTscan in October to aid research for P.P.M.I. (Parkinson’s Progressive Marker Initiative.) As you point out, P.D. diagnosis is not a crystal clear operation. Hopefully this will help.
Hi Dad,
I am very proud of you to put yourself into a Parkinson’s research trial! The more knowledge we can gain, the closer we are to a cure! Plus I get to see you soon!
Hi Allison,
My beautiful sister has PD and she was diagnosed at 56. She is going to be 60 in October. Can you tell me if you have tremors or bradykenisia? It sounds like the latter? She is struggling a lot and I just wondered and may have some follow-up questions based on your response. I am a faithful reader of your BLOG and am grateful you are sharing your story, but sorry you have a story like this one to share. Either way…I hope you know you are appreciated! (and I share your FROYO Addition…I totally get it!).
Joy
Hello Joy,
Yes, I don’t have a tremor, I am a rigidity, slowness of movement, topped off with a touch of dyskinesia kind of girl. Thanks for reading my blog.
The first thing I noticed was that
my feet were very hot when I wore closed-toed shoes. It turned out that it was being caused by my toes curling and the joints of my toes were pressing against the top of my shoes. This was at least 2 years before I was diagnosed.
Hi Judy,
I haven’t heard about hot feet before, but it makes sense. Thanks for sharing!
No one including my doctors put two and two together. Right hand shaking. No sense of smell. Constipation. Mood changes. Short term memory issues. Walking slumped over. Probably started in my 30’s but not finally diagnosed until my 60’s.
My husband noticed he couldn’t smell 2 years before his one arm didn’t swing when walking. Getting the diagnosis was very hard to hear. I think my husband knew in the back of his mind that he had it, but I was in big time denial. I’m very glad his medication is working but we’re starting to notice a lot of off times.
Thank you for your blog, it’s very helpful and I appreciate your humor.
Hi Alli. My clearest remembrance of Sharon’s first symptom of PD was watching her walk down the street in front of our home in Lake Forest, and her right arm I believe, was not swinging.
Hope you’re doing well.
Hello Jerry,
It’s kind of weird the things that we remember. Miss you and hope you’re well!