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What was your earliest symptom?
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Thank you all. I find comfort in knowing there’s a place I can share my experiences with others that are also dealing with PD. I am going to do my best to remain active and not allow PD to prevent me from doing things I enjoy. I am prepared to accept that I may not be able to do as much as I once did.
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M,
Im glad to hear that you’re determined to fight PD. I know how scary it can be to have to face it. But it sounds like you’re doing all the right things and you have the right attitude. Keep at it!
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Looking back in my mom’s history and having done some research, I would say her first symptom was loss of smell about 12 years ago. Of course that was not even a consideration when it happened – just a weird event that we all laughed about when she could no longer smell unpleasant odors! Now over the past 4 years, she gradually developed a right arm tremor (non-dominant side) which we blamed on benign essential tremor as it is familial, then over the past two years, she has become quite stooped in posture, but we attributed that to her scoliosis, and in the past 6-9 months, foot dystonia, which we blamed on her knee issue which was treated with TKA in July. Needless to say, after general slowing and worsening arm tremor prompted a visit to the primary care physician and a new diagnosis, we can now connect many of these dots from many years prior. At 79 and with many things still left on her bucket list, the rapid presentation of worsening symptoms over the past year has been quite unsettling.
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Sara Beth,
that sounds like a particularly confusing journey. Sometimes I’m still surprised at how complex and unpredictable the human body is. My Dad (diagnosed in 2013) noticed his sense of smell going too. And he always thought it was because he had polyps, which were eventually removed. But the removal made no difference. Years later, he started to notice a tremor in his right foot. And then the symptoms grew to be more developed. As someone who struggles with complicated (autoimmune) symptoms, I know how distressing it can feel to not be able to label what’s happening. I hope you’ve been able to find comfort in discoveries — even when they’re difficult ones.
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Hello my fellow Parkies.
Looking back I think my first symptom was loss of sense of smell. I honestly can’t tell you when this happened but at least 15 years ago. It was something that just seemed to fade away, losing it a bit at a time until now where I can hardly smell anything unless it has a very strong odor, of course the sense of taste has followed along.
Ten years ago, while I was still working, I noticed a tremor in my left cheek and at times my arms would feel so heavy I could not hold them up. I am a carpenter and I mentioned this problem to my GP, that when turning a screw on the job, with a screwdriver I could not complete the task because my arms felt so heavy. He suggested I buy an electric drill.
Five years ago after enduring many PD symptoms, which come and go, I finally convinced my GP to send me to a neurologist. This opened a whole new can of worms. To date I have been to 5 neurologists and 3 of them say I have PD, 2 say I don’t!
Three years ago I finally was prescribed LEVODOPA & CARBIDOPA which has helped with many of my symptoms, though all my symptoms seem to be on a carousel, coming and going, which seems very bazaar to me. Some are mild conditions (tremor in my cheek or left hand) or more severe (achy shoulders, fatigue, constipation, imbalance or jittery feeling inside my whole body). Is this a normal progression with PD, if there is a NORMAL PD progression?
I only see my neurologist once a year because of her schedule so my meds have been handled and manipulated by my GP, who doesn’t know much about PD, and my druggist who is fairly knowledgeable about the disease as he has been working with his best friend who has PD for the last 15 years. I have done lots of research on the disease and both of them are receptive with me when I have input, which I appreciate.
If you have made it this far into this long winded explanation of my condition, thank you.
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I was diagnosed in 2016 at the age of 57 however I knew soemthing wasn’t right about 4- 5 years before this when my stomach started to bloat and I had bouts of constipation which, after having cameras up and down, was incoreectly diagnosed as IBS.
As Managing Director of a large company I had started to feel much less confident when giving presentations and my concentration levels were not as sharp as they were. My handwriting started to get worse in 2015 and my voice had started to soften especially in a crowded environment plus. I also noticed the odd slurred word and had started to feel anxious that something was seriously wrong with me, not helped by some night sweating, and aching legs resulting in a lack of sleep. My best friend had also noticed I wsa a bit slower in my movement.
After researching my symptoms on the internet I was pretty certain that I had PD so went off to my doctor who was adamant that I didn’t have PD as there was no tremor and no obvious signs. I asked to be referred to a neurologist and all the physical tests he carried out were negative though he did notice I didn’t blink much and as I had private health cover, suggested a PETscan. The scan in April 2016 confirmed I had PD.
Immediately following the diagnosis I felt full of fear and anxiety but that soon passed. The neurologist who I continue to see every 6 months is great and keeps me motiavted. I currently have no mobility problems and am playing the best golf of my life. Since diagnosis I take co-careldopa 3 times a day and rasgailine but don’t feel any benefits and to be honest, I wish I hadn’t started. I take a number of supplements and still have no tremor and my smell and taste senses are good. and the only symptoms which really bother me are the slightly masked face, soft voice plus some days I do feel a bit tired especially following some strenuous activity. I also still have the occasional night sweat but some leg stretching before bed keeps the aches away and I now sleep very well.
All in all I’m in prertty good shape but realise it won’t always be this way so try to live everyday to the full.
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Hi stuart
thnx for sharing. Did u get a . PETSCAN or a DaTscan?
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Hi Jean
Sorry yes my mistake, it was a DATscan.
Best
Stuart
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Thnx Stuart for the clarification. I had one too (https://parkinsonsnewstoday.com/2018/12/18/parkinsons-disease-datscan-dopamine-transporter-levodopa-carbidopa-rotigotine-spect-imaging/ )
and was just at a meeting of the sales force who sells DaTscan . Did u have a feeling of relief after the results that you know had a better handle on what was ailing you?
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Duane,
I’m not sure that there is a normal progression. But I can tell you that my Dad (diagnosed in 2013) experienced many of the same symptoms. He first noticed his sense of smell too. From what I’ve been able to understand, it seems like everyone experiences PD a little bit differently. And there was some disagreement among my Dad’s doctors while he was being diagnosed as well. I’ve never heard of symptoms quite being described as if they’re on a carousel. But I do know that my Dad says he has “good days and bad days”. So it seem that they’re not particularly consistent in terms of their intensity. Hopefully, you’ll get some answers soon.
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Stuart,
I find this misdiagnosis part of your post very interesting. My Dad has Ulcerative Colitis and was diagnosed with PD in 2013. And I’ve always suspected that it’s not a coincidence that he has both. So I’ve done some research to see if the gut has been linked to PD, and it turns out that we are 1.7 times more likely to experience PD if we also have IBS (https://www.ncbi.nlm.nih.gov/pubmed/24442494). Have your doctors determined that the IBS diagnosis was totally incorrect?
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Hi Jean
I did feel relief to start with knowing what is was I had but……..then the demons started entering my head, how quickly will it progress, what type of PD did I have? etc
it took me about a year to get my head around everything and seeing my neurologist every 6 months really helps as he’s very positive. Since my diagnosis in 2016 my symptoms haven’t worsened a great deal so I’m hoping it is a slow burner.
Best
Stuart
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Thanks Mary Beth for the reply. It is nice to know I’m not alone with these revolving symptoms.
Hi Stuart I was wondering if your doctor acknowledged night sweats was one of your symptoms? I ask this because I had night sweats really bad about 20 years ago. They were intermittent, but several times a month, for a couple of years. That mystery has never been solved by any of the many doctors I have been to.
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This is for Joe, regarding his sudden crying. Here is a description of my own emotional reactions:
I gradually became aware that sometimes when speaking to a group or a Sunday School class, my voice and throat would suddenly and unexpectedly choke up with emotion, even though I didn’t feel emotional otherwise. I eventually noted that the choking up seemed to be connected to ideas and events that I felt strongly about or that involved successes where “the good guys won.” For example, when I gave a PowerPoint presentation to prospective customers about the company, I got choked up slightly when I covered the many awards I had helped my company to achieve. It meant a lot to me. The company VP liked this “sign of deep concern,” so he invited me to several sales presentations to prospective clients. This was in 2008 or so, and the choking and emotion were not overly intrusive.
As time went on, the emotional impacts increased. I began to notice that when something “good” happened on a TV drama, such as when the hero wins or when the villain is exposed, I would start to sob for about 20 or 30 seconds.
Now, when I talk or read aloud, quite uninvited, all of a sudden, I will choke up and have to stop talking, because I cannot be understood, so firmly does the emotion choke off my voice.
The reaction is unpredictable. Recently my wife and I were watching a biography of economist Walter Williams. The narrator mentioned that Walter was highly influenced by Friedrich Hayek. I started sobbing uncontrollably and the crying lasted for over a minute. My wife was surprised and confused. She didn’t know how to console me. After I regained my composure, I explained that Friedrich Hayek was one of my brother’s favorite economists. Before he became ill, my brother earned a degree in economics and was fond of talking about Hayek and his theories regularly. After my brother succumbed to schizophrenia, I took care of him for many years as he suffered horribly, afraid of assassins, poisoning, bomb attacks, thieves supposedly stealing his ideas, and so on. The unexpected mention of Walter Williams and his interest in Friedrich Hayek brought a rush of memory to me about my brother and how his life, career, and accomplishments were destroyed by his disease. The emotions swept over me and I sobbed.
Needless to say, when this outburst of emotion, half crying, choking, and so on arrives in the middle of my conversation to strangers, and even to acquaintances, I feel like a fool. I want to say, “Hey, I’m not really that worked up about putting Christmas lights on the eaves of the house, it’s just my Parkinson’s brain that thought the idea was extremely moving.” But as I said, the reaction stops me from talking. If I try to talk anyway, my words emerge distorted and drenched with what appears to be uncontrollable sorrow. I usually make a strong effort to stifle down the emotion, but most of the time I simply have to be silent for a minute or two.
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This video demos ways that might help control extreme crying. Give it a try.
https://www.youtube.com/watch?v=gZaFaCyxoiI&list=PLA6OMZ8dRKTiw3fuRVEtP8j5XmBTuKUqY&index=2
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Robert,
Do you find these emotions to be a hinderance? Or do you feel like you’re responding to emotional moments in an appropriate way? Maybe the rest of us just swallow the depth of our emotions.
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Hi Duane
Yes the neurologist confirmed night sweats are a symptom of PD – well in my case it was and still is to varying degrees.
Best
Stuart
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Hi Mary Beth
Despite the doctors saying I had IBS in hindsight I feel it was just a symptom of PD ie bloating and constipation. I had no pain but just felt full and fat though now I hardly notice it.
Best
Stuart
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Stuart- I’m glad you’re feeling like you know what it is now. I can’t imagine that journey was simple.
MB
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Joe and Robert I appreciate you describing your emotions. I was known for controlling my emotions and keeping my head in professional situations when others were losing theirs. The last two years I’ve been staying home because I laugh or cry at the simplest things, sometimes uncontrollably. Going out to the movies is especially bad.
My first symptom was a cogwheel tremor in my left arm when I was 40. After an auto accident from a blackout seizure, a physical therapist found it. I had never noticed it and didn’t even know what it was. About 1 year before that accident I had to pull over on the side of the road as I couldn’t move the left side of my body.
Then small tremors started, intestinal issues, crying spells, seizures and falls. I was forced to retire as I could no longer drive or type, as my left arm shook uncontrollably, but only when typing. Then my gait changed and I had to use a walker at 55. I did a lot of physical therapy and was able to eventually stop using walking aids.
The whole time I was seeing a neurologist along with multiple other doctors. It wasn’t until my current neurologist asked me to walk across the room and saw me walk without an arm swing that she diagnosed PD.
I was shocked and angry, but I accepted it when I realized it explained why I was having hallucinations, losing my singing voice and my talking voice got hoarse and stopped.
Now I’m on a dopamine agonist which has controlled the hallucinations and tremors. My gait is still extremely slow and I have extreme osteoporosis so I’m really trying hard not to fall. I was first diagnosed with bone loss when I had that accident which seemed at the start of my PD. I’m 62 now so that would be 20+ years since my first symptoms. Not exactly early onset I think since it’s been a very long and slow journey for me
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Roy’s first step toward a diagnosis of PD was twice fainting from Orthostatic Hypotension. He worked at a home hardware store and had been experiencing lightheadedness and dizziness when he stood up and moved quickly at work, or when he bent over to pick up product from the floor. For years, he had been running a machine to place product on upper shelves. He began feeling anxious and woozy about using this machine. He was noticing his arm strength, especially on his left side, would give out on him. Then, after bending over one night to flush the toilet, he fell right back and passed out. He jumped right back up, walked into the bedroom and passed out again, hitting his head on the floor again. After an OH diagnosis, I began an internet search, along with one of Roy’s sons, as we didn’t know much about it. Individually, we ended up researching PD. We both came to the conclusion that Roy was experiencing many symptoms of PD. He had the left side weakness, leg cramps, head forward gait, slight drag on the left leg, quiet voice volume, shaking when using heavier tools, lack of a smile, and arms (esp. the left) that stay stationary when walking. He also had dreams that were so real to him that he would yell, punch, grab and even fall out of bed while he re-enacted his dream in our bed. These had been going on for 15+ years. His son and I then began asking his PPC to look at PD and he referred us to a wonderful neurologist that diagnosed him. The whole process of diagnosis took 4 years because a bout with cancer of the tonsil took front seat for about 2 years.
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Roy,
That sounds like a terrifying journey. Once you started to understand your symptoms, were you able to do things to help alleviate them?
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