I am 54 years old and I was diagnosed with PD in July 2022. (DAT scan to confirm)
My tremors, tiredness and blurred and double vision and headaches started back in 2017. I saw a neurologist who dismissed my concerns about PD back in 2017.
I am now seeing an excellent consultant on a regular basis, both private and through the NHS, as my GP dismissed my concerns regarding PD, as well, last May 2022. I began to have an internal tremor which never goes away as well as REM sleep disorder.
There is very little information on the internal tremor and I wonder whether anyone on the forum suffers from an internal tremor (mainly jaw, head and torso)? And also whether they find it debilitating?
I am off work at the moment as my symptoms get in the way of my daily routine.
fatigue, exhaustion and day time sleepiness
cramping of my feet and legs
anxiety which leads tremor and pain
Are these normal?
I also wanted to ask about anxiety. I found that the most simplest of tasks that requires confrontation, a challenge or a request, even opening my laptop can exacerbate my symptoms. Do other people experience this?
I worry about my capacity to do my highly pressurised job (leadership in a school) and whether ill health retirement is the best avenue for me. The way my symptoms are going, I struggle to keep awake for the whole day and go to bed at 8.00pm. I would also say that any long days lead to me having a couple ‘off’ days were I don’t leave the bedroom.
I am 54, and face the prospect of ill health retirement. I would be interested to hear from others who have faced the same dilemma and soon after their diagnosis.
Finally, my medications are Sinemet 25/100mg x 3 daily, Mirtazapine 30mg evening, Rasagaline 1mg (morning) and Half Sinemet 25/100mg slow release evening.
My consultant initially prescribed Requip XL but this caused sleep attacks and severe sleep and did not agree with me.
I would be grateful for the chat about the challenges that I and others face.
I would also be grateful to know whether anyone has had an onslaught of new symptoms happen over a short period of time.
Please allow us a moment to welcome you to our forum community. It’s a lovely group of people who always have some wisdom to share, some of whom are bound to introduce themselves soon. We also have a free and confidential helpline staffed with advisers who can help with everything from medication questions to finding local support, and that’s just the tip of the iceberg. You can reach them at 0808 800 0303, so please do reach out if you have any questions unaddressed here.
All our best,
The first thing we learn is “everyone is different in what they experience”
That’s not a lot of help but is seems to be true.
The first thing my neurologist suggested to me was “Join the UK PD forum”. I am in Tasmania on the other side of the world so this forum is highly respected. Sharing with others experiencing PD is definitely a good thing to.
I have been on the PD journey for 5 years now and can comment on some of your questions.
fatigue, exhaustion and day time sleepiness - Yes, I also experience them but at least I am at an age where an afternoon nap is permitted.
heavy legs, cramping of my feet and legs - I find that magnesium tablets help considerably with the cramping.
anxiety which leads tremor and pain - any sort of stress makes my tremor take off. When driving, the tremor starts when I get to heavy traffic etc. Fortunately, I live in a rural area and heavy traffic is rare!
Even thinking about the tremor makes it worse.
dizziness - I suffer for dizziness and nausea a lot. My neurologist suspected postural Hypotension and she was right. My BP can drop by as much as 37 when I change from lying down to standing. It gets worst in the afternoon and during hot weather. I now do all the hard work in the mornings and have regular ‘nanna naps’ to give me a second wind in the afternoon and evening.
To check for Hypotension, I took my BP lying down and then 30 seconds after standing up. This was done 3 times a day and the results were obvious. PD often causes or at least aggravates postural Hypotension.
My meds are similar to yours but I will soon be starting something to hopefully give me a better nights sleep.
Hi Griff81 I would echo jimdownunder’s post, everyone has their own unique experience, it’s not a one size fits all. In a very similar position to yourself would be happy to PM and share thoughts, coping strategies if you are interested. Take care of yourself
Thanks for reaching out.
I lived in Tasmania for 6 years and worked at Hutchins School in 90s.
I have found memories of my time in Hobart especially the fishing and scenery.
I will talk to my consultant about Hypotension. I tend to have naps in the afternoon also.
Any way. Happy to keep in touch as a fellow aussie now living in the UK.
Hi Griff81, I have internal tremor (waist up) usually when my medication wears off. I also have all of the other symptoms you listed except double vision. I was diagnosed at age 55. I was able to leave a stressful job and spent many years exercising and doing the things I enjoyed. I started Sinemet a year after diagnosis and over the 11 plus years it has been increased to 800-1000mg per day. I am still doing fairly well but the medication makes me sleepy during the day. I am having trouble pushing myself to exercise regularly. I seem to have lost the fight but still manage to do the day to day chores of living. My husband has atypical parkinsonism and I am able to help him as he is more disabled than I am. My advice, for what it’s worth, is to minimize stress in your life, exercise as long as you can, and micro-manage medication to reduce or eliminate symptoms. It sounds like you are happy with your neurologist so hopefully he/she can help with the medication part. Kind regards, Iris
Firstly, I’m so sorry to read how badly your symptoms already are.
I suppose I’m incredibly lucky that although I was diagnosed in 2020, so about two and a half years ago, and it probably started about a year before that, my PD seems to be progressing slowly at the moment.
I am not on medication, I refuse to until I have no choice, however I do know that my exercising, gym, cycling, walking 5 times a week does definitely help to keeping it at bay.
"There is very little information on the internal tremor and I wonder whether anyone on the forum suffers from an internal tremor (mainly jaw, head and torso)? "
That sounds like dystonia. I have botox injections into the muscles of my neck and by my ears, and that makes an enormous difference. Perhaps let your neuro check on it.
Of the other symptoms you listed, I do also experience
fatigue, exhaustion and day time sleepiness*
My neuro told me that the fatigue & exhaustion are a result of the muscles now having to ‘work’extra hard’ to do the same things as a result of the PD.
The heavy legs, are in my case what I call a lazy leg, where every now and again I semi-stumble as if I have kicked something. You know the feeling, as you are walking your foot kicks against a bump in the road etc.
Yea definitely, that is one symptom I feel creeping up on me more lately. But again I know the reason, so must just accept it.
I hope that helps a bit.
Hi Grif and welcome to the group
I was about your age when I first noticed symptoms but it wasn’t confirmed as PD for several years - firstly they treated me for dystonia and I ended up being injected everywhere even into my vocal chords.
None of this worked and about 9 years ago I saw a lovely neurologist who confirmed that it was PD and started me on the relevant drug treatment - Madopar and Sinemet together with Neupro patches, they worked then a DAT scan confirmed the diagnosis.
Everyone with PD is an indiviual and there’s no one size fits all, but that said I share every one of the symptoms you’re encountering, particularly the internal tremor which seems to control my whole body when I’m anxious
I tend to shout out in my sleep and have vivid dreams which often wake me up
I found the fatigue quite difficult to manage but having left work it’s now a lot easier.
My legs feel heavy and the night time cramps are painful - I take magnesium tablets which seem to help and also have a magnesium spray which is good - have you tried a weighted blanket - I love mine
I can empathise with you on lots of things - I had to leave my job which was very highly pressurised - I worked as a senior manager in social work for child protection travelling all over the country and racing around like a headless chicken, I hated the prospect of ill health retirement but actually it’s not that bad and it certainly helps with the anxiety.
I hope this has helped a little and given you more clarity for the road ahead, try and pace yourself as much as possible and always think positive - Parkinson’s will never define us it’s just one of the hurdles we encompass on our path through life
Take care my friend catch up with you again sometime
Thank you for providing with some details about how you have managed with the condition and how it has impacted on you. Your advice has been helpful.
Hello, I was diagnosed in December 2022 after suffering symptoms for a couple of years. I am a headteacher and my neurologist very quickly expressed concern about the impact of stress on my symptoms. I wanted to try the medication before making a decision about my future though. I think I naively thought it would fix everything. It didn’t and I now accept that continuing to work is undermining my treatment. I have started the process for ill health retirement and am no longer working. I feel so much better without the stress and demands on my time. It has been a very difficult decision but I’m sure that it is the right one.
Please feel free to contact me as a fellow headteacher.
I have currently been off sick since November.
Regarding your cramps, try eating a banana every day.
They are rich in Potassium amongst other vitamins and are one of the most nutritious foods in the world.
I m a Scuba Dive Master and make my students eat a banana everyday to help avoid cramps.
You will also notice that a lot of tennis players during the breaks have a bite of a banana.
Most people believe that a lack of salt causes cramps, that is not true. In most cases it is a lack of Potassium .
Of course magnesium does help as well