Think back to when you were diagnosed with Parkinson's. How did you feel? Was the diagnosis given to you sympathetically? Did the doctor provide you with sufficient information? Was it the right information for you at the right time?
Parkinson's Movement will be broadcasting a webinar about the patient experience of diagnosis on 29 November. We feel that the right information given at the right time is important. Many doctors do this naturally. Others do not.
Parkinson's Movement wants to use as much information from patients as they can. We're very interested to get patient narratives on their experience of being diagnosed with Parkinson's. What do you know now that you wished you had known then? what would be your advice to someone newly diagnosed with Parkinson's?
We will be running some polls on the website in the next few days to answer some of these questions that we would really like to hear from any of you who have a story you wish to tell. Either post it as a comment to this message or send me a private message. Any material we use in the webinar will of course be anonymous.
Written by
JonStamford
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I will post here. My experience was not positive. I am an RN and knew something was very wrong. I had uncontrolable tremors for a full year before diagnosis but they would come and go so the doctors did not see them.
It was not until I had a horrific three days where I could not stand without falling, had visual hallucinations and terrible tremors that I went onto one of the onlline sites where you can IM with a specialist who told me I had to see someone immediately that it was either PD or MS. I did find a different Neurologist two hours away who diagnosed me. I no longer had faith in any where I live after going to them and being told it was anxiety, etc...
The doctor who diagnosed me started me on Azilect which made a huge difference in the tremors, but failed to tell me anything about the medication. I did online searches when I was better and found out about all of the contraindications it has, he told me none of this,.
I am at a loss because it does work on the tremors, but does not help with other symptoms and I cannot even take meds for cold or flu symptoms.
Sleep is my biggest issue right now and my doctor has been no help in this area, just brushes it off as part of PD. I am in search of a more caring doctor who specifically takes an interest in PD not just general Neurology.,
I would dearly love to participate I am an SRN (State registered nurse) Have cared for many patients with PD in the past.
My diagnosis was quite abrupt after being told it was all in the mind for ten years.
less than ten minutes with a Neurologist, A letter to my GP who just said you have Parkinsons and Gilberts Syndrome we are trying you out on Madopar. Gilberts syndrome is genetic we cant do anything there.
No info at all. I contacted the local PD group someone sent me out leaflets. other wise I think I would have been left completely in the dark.
I think the best part of it has been finding this site.
I was diagnosed in May, 2003. I started the process in March, 2003. My PCP knew something was wrong with my left hand. He referred me to a rumologist. He said it was not arthritis and was referred to a neurologist. I had an MRI, MRA, EEG, and EKG. The doctor said I looked great on paper. I was given samples of Sinemet. The rigidity improved and was told I have Parkinson's. I was given some information about PD. I knew nothing about PD. I wish I knew more about what I could expect. I was working as a life insurance agent and read about PD. my symptoms of rigidity and fatigue wee not as documented then as know. The more I know what to expect, the better I can understand what's coming.
I was dx August 2010 - I was very active, traveling throughout the year for work for almost ten years - for about a year before the dx I was experiencing tremendous fatigue, trembling in my right hand which has since progressed to my left hand, "dragging" my right foot when I walked briskly, experiencing anxiety in almost all situations, my walk was stilted with right arm hanging, my voice became so soft that it was difficult to carry on a conversation, and the stiffness in my body was enormous. My neurologist dx me immediately, started me on Amantadine and 6 weeks of physical therapy, botox injections in my neck to release the stiffness and pain in neck & shoulders - I have since completed speech therapy and occupational therapy with the addition of modafinil & rasagi'ine mesylate - and I almost feel human most of the time ... my neurologist was and is compassionate and to-the-point, very up-to-date on mediations & therapy for PD .. I stay away from stress as much as possible and actually enjoy life once again! My voice is stronger, my fatigue bearable, and I exercise at least 5x a week ...
Mr. Stamford, I appreciate your interest in finding out valuable information that is helpful for researchers, patients, doctors and caregivers. Before I was diagnosed with PD, I had only vague knowledge of the disorder. I knew nothing about symptoms and signs indicative of PD. Therefore, living in a small town, when I started having resting tremor in my left hand, and taste and smelling problems, along with some leg stiffness and fatigue, I didn’t know what to think. We didn’t have specialists in the town, only a GP. I went to him, and he said benign essential tremor- nothing to worry about. For the next three years, my symptoms got worse, gradually. My hands and feet would go up and down and open and close in gradually more jerky type movements. Holding things, working with tools, etc. became a challenge. My fatigue, at times, was overwhelming. I showed the Doctor my jerky hands and feet and he didn’t comment. Finally, about five years after going through these symptoms, I had times when I would have a terrible time getting up from chairs, I would feel so stiff. Then my balance was off at times and I started falling. I became unsteady walking and couldn’t walk far, without becoming stiff. I started to have times when I would hesitate, before I started walking, and then one time, I was walking my dog, and I stopped and coudn’t start walking again, for some reason, and my dog pulled on the chain to say “let’s go”. I was like frozen. I fell face forward on the pavement, and the bad part about it is that I couldn’t stop myself from falling. I sustained blunt force trauma, a large hematoma, with bleeding, and a mild concussion. Thankfully, I was just about 40 feet from my house. My wife took me to our small town’s ER. They gave me a Cat Scan, EEG, echocardiogram etc. and when I went to my Dr. for a follow-up. he said everything looked good. After this, my daughter thought it best that we move to a bigger city, where she lives, and they have a regional medical center, with many specialists. We moved, and my daughter researched and found me an excellent family practitioner, who I went to. I explained to him my history and showed him my resting tremor and jerky hand and foot movements. He was very understanding and sent me for blood tests etc. After seeing me a couple times, and checking my symptoms out, he told me that he was referring me to a neurologist. The last visit I had with him, I was significantly worse,,with my symptoms. I couldn’t control tremors etc. My Family Doctor called the neurologist on the spot, while I was in his office. He then told me that, in his opinion, I had Parkinson’s Disease, and that I had an appointment to see the neurologist in three days. I went to the neurologist ( who specializes in movement disorders), and he used the protocol, where first they had to rule out other reasons ( such as medicines) for Parkinsonism. He told me I had essential tremor and resting tremor, cogwheel rigidity, and muscle stiffness etc. Within a few weeks, after a trial run of Sinemet, which markedly improved my symptoms, the neurologist told me that I had Parkinson’s Disease. The first few weeks, he said it looked like I had a little Parkinson’s. Then, after a few weeks he had noticed that I had cogwheel rigidity in both arms and, as much as told me, that I was past the beginning stage of PD. He and I discussed all the problems I’d had in the last five or so years, and he agreed that the symptoms I had were PD related, such as freezing episodes, balance problems, tremors, stiffness, trouble getting up from chairs, walking and writing. The neurologist did check all my hospital and medical records for the previous ten years and he said there was an indication of a neurological condition on a brain scan. As far as living with Parkinson’s, therapies, or joining support groups, the neurologist has not said anything about that. He reminds me of a college professor, who observes a great deal, but does not give out a lot of advice or empathy. I know this has been a long reply, but this has been my experience of being diagnosed with PD. I feel that I might be doing better if I had been diagnosed sooner and been put on Sinemet sooner. Sinemet does help. It doesn’t relieve all symptoms, of course, but it sure helps with the tremor and stiffness. I am happy to participate in any follow up studies and forums. I am truly thankful for this support group HealthUnlocked. Com. It has helped me, Mr. Stamford.
I have very poor internet signal , so let me just post my comments here, now, while I can. When I was just dx in May 2018, by a MDS, I was put on Amantadine that day. I must say the following was “hell week” for me. Couldn’t sleep, couldn’t eat, felt stuffed, lost nine pounds that week, anxiety for the first time in my life. I’m a former Army airborne captain. Felt like I was about to “pop!” Couldn’t get this off my mind. Told the doctor who switched me to Mirapex, saying maybe amantadine isn’t for you.
My point to be learned is it is not a good strategy to tell someone this news, and immediately put brain drugs into them before they have had a few days to accept the diagnosis. It is too much! Let the patients level out their emotions a few days, THEN introduce the medications. Is that allowed? Let’s have only one big event at a time, please doctors?
I found that one night I could not remember how to turn over in bed, this was going on for quite a while, then one afternoon, my hubby and I had been playing bowls and sitting out side in the sunshine with a glass of wine my hand and leg were starting to tremor joking I said to hubby by this wine is strong. Went to see GP who sent to see a consultant at QMC he asked me to walk to the door and back again. What you have got you can't die from he said "you have PARKINSON'S" and that was it. When I left his office there was a lady out side and a stand full of Parkinson's leaflets from Parkinson's UK. The lady said that she was diagnosed about 8 years before, she was kind and helpful she gave me lots of leaflets there was also a DVD "Don't look at that she said it will not help you" but me being me did not take her advice, I wish I had as the DVD was about advanced PK I was given a PK Nurse who I see every six months, she is excellent , she a friend, she listens, she advises, and she is an brilliant PK nurse. I was diagnosed in 2010.
The positives: no bradykinesia, I cut my food with a knife, no button difficulties, brush my teeth now w/o needing elect brush, more strength. Getting in and out of bed, turning over is easier. No more constipation. Parkinson's progression stopped. Suppressed all motor and non-motor symptoms...
Entering my 7th year post diagnosis and have not fallen, not once, to the surprise of my neuro. Was seeing neuro every 6th month, last visit he set app one year. He said if needed we could do some changes earlier. He said my condition can change in as little time as one week.
New schedule, now I follow this regimen:
3 x day C/L 50-200 ER : 8 am, 2 pm, 8 pm. Because it is ER, I take with or w/o food.
2 x day (8 am 2g, and 2 pm 2g) Vitacost vitamin B1 (as thiamine HCL) 500mg, easy swallow capsules
B1 Thiamine therapy reference / stop progression, suppress motor and non-motor symptoms:
(Thiamine HCL is oral substitute to injecting B1) 2 x day (morning 2g and at lunch 2g)
Doctor Costantini strategy that I find helpful "thiamine hcl stops the progression forever...".
Parky people say the first five years is your honeymoon stage with Parkinson's. After that, progression more rapid.
I have gone from slow motion to normal motor action since joining the growing number of PwP that have started B1 regimen/protocol. –
Doctor Costantini - “Why is this? Because there is no medicine or drug that is able to affect all of the organs, whereas all of the organs function thanks to Thiamine. An important detail”, adds doctor Costantini, “the Thiamine therapy brings no collateral damage with time”.
Hi Roy. I suspect people ask you this every time, but what is C/L 50-200 ER? Is it some kind of Levodopa? As I see you take it together with B1. There’s no interference between these two, right? Thanks.
GP ignored family history of PD, wrong. You are too young to have PD, wrong. This is a big one. If testing for PD, give a nice big dose of Levodopa/Carbidopa and for a significant time, before saying, yeah you don't have it. Oh, and my favorite, this must be Psychogenic Tremor...because most patients must be nuts, right? UGHHHGHGHG. Oh, one more, if patient is young and working that kinda matters. So your lovely six month check up might not be sufficient for people trying desperately to keep their jobs to feed their family. These patients should go to the front of the line if you ask me. An 18 month wait list to see a neurologist didn't help. Oh, another favorite, you must be depressed...yeah, pretty much every PD patient looks depressed, just for the record. Their facial muscles don't move properly and they are a little slower, this does not equal depression. And, yeah, apathy is real and it is completely different form depression, so figure it out, before you start giving out meds like candy that could make things worse.
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