Hi my name is Dave and I was diagnosed in2020.
My Parkinson’s is tremor dominate. This is the first time I have reached out.
My main concern is the internal tremors . If I’m stressed or upset the tremors come on strong along with the anxiety. Anxiety is a real problem and hard to control. I have come on here to communicate with others like me. And, hopefully, get some sound advice.
I take the following meds , Stalevo 50, melatonin, mertazapine, and trihexyphenidyl.
Hi Dave,
We just wanted to take a moment to welcome you to the forum. You’re sure to hear from our community members about their experiences with fasciculations, and you can also read previous forum discussions on the topic by having a search on our website . This carer’s guide might be of interest, as well. Please also make use of our kind and supportive advisers, available at our free and confidential helpline at 0808 800 0303. They are highly knowledgeable and ready to help with a range of Parkinson’s-related questions.
We hope these resources can be of some help, and again, we offer our warmest welcome,
Jem
Forum Moderator
Hi Dave, welcome to the forum. I am fairly new as well, my partner only being diagnosed in January but I just wanted to reach out, as I see his anxiety and more stress than was normal and like you his tremors become worse at this stage. It’s obviously a common issue. At the moment I try to take that anxiety away by taking the task away from him or help him to do it.
This maybe no use to you but I just wanted to touch base and say hi.
Jules
Hello Dave
I also suffer from internal tremor which is exacerbated by anxiety. I also have found that my anxiety is out of control especially related to work, cognitive demands and people. I am 54 years old and know how it feels especially the internal tremor.
My GP has got me onto a talking therapy programme/course that has given me so opportunity to reflect on dealing with my anxiety. Although the programme is online and no interaction with a clinician, it does allow me to reflect on my thoughts, worries and setting short term goals.
I am currently off work as the stress of my job just triggers my tremors, so any improvements that I have made since being off work (2 months) have not truly been tested. Therefore I don’t know whether talking therapy will work long term or counteract the stresses of the job or being in a social situation as I tend to avoid.
I am trying to eat well (no alcohol), walk the dog daily and avoid pressurised situations at the moment to keep a balance. My tremor, mainly in my jaw and head and torso is always there and gets worse with anxiety. This includes watching football as well including Arsenal. I sometimes have to turn off the TV as any tense situation or emotional situation with anxiety, triggers the tremor and makes them worse.
My meds include mirtazapine, Sinemet and Rasagaline.
I am happy to discuss my symptoms with you as the internal tremor is rarely discussed and people don’t understand it as they can’t see it.
Andrew
I was diagnosed at age 58. Although my consultant says I could have had it at least 3 years before. Before diagnosis, I was suffering from depression along with anxiety and terrible sleeping problems. All symptoms of PD. Looking back, she was probably right.
The first time I thought anything was wrong was when I felt a slight sensation in my tummy. It was similar to a shiver you get when you feel a cold chill. I thought nothing of it. However, as time passed it gradually became more frequent. I went to see a consultant privately, as the NHS was to long a wait. He confirmed to me I had Parkinson’s. That was October 2020. He started me on Sinemet straight away.
I now come under the care of the NHS and my doctor is very good. She changed my meds. I now take Stalevo 50, Mertzapine, Melatonin and trihexyphenadily.
I had to take early retirement from work because of my condition. I would not have been able to carry on because my job was front line security.
One of the triggers for the tremor and anxiety is lack of sleep or poor sleep. I find the better I sleep the better I feel. I find I have lost a lot of confidence and have become very impatient. If my tremor is bad it normally spreads from my tummy to my hands. All I can think about when this happens, is the tremor itself. Its hard not to. Because all you want is for it to go away. If Im watching something that gets my heart rate up, be it Arsenal or a film, that to can trigger the tremor.
I have always been a keen keep fit person going to the gym at least 4 times a week. I am still going to the gym as I feel it does help. I also did a 10 week challenge called PD Warrior. These are programmes to target PD. It’s all done online. If you haven’t seen them have a look on U Tube. It mainly deals with your balance and co-ordination. It’s worth a try.
I fully understand how you are feeling because we are both similar in the way we experience the tremor. And, yes, you are right when you say people dont understand because they cant see it.
I would say do try to keep a positive mindset (easier said than done) it will help in the long run. I hope what I have written has been of some help to you. This is the first time I have reached out since diagnosis. That’s a positive for me.
I look forward to your reply. Stay safe. All the best
Thank you Dave for reaching out.
Our symptoms seem very similar. My tremors started in 2017 and I also had problems with my vision (seeing double). I was diagnosed in July 2022 and since May 2022 the tremor hasn’t really stopped. Thought I was going mad.
Your journey is similar to my mine and although I am sorry to hear about your diagnosis, it is also good to have people to talk to who are going through the same issues. I am keeping positive but need to sort out work at the moment so another stress to deal with. Hopefully, this will be sorted out in the next few months.
Sleep is also a real nemesis for me and I know straight away in the morning if it is going to be a bad day as I wake up with a tremor. As you state the tremor can be all consuming.
I also suffer from REM sleep disorder and have lots of bad dreams and hallucinations.
Can I also ask whether you also have fatigue and exhaustion? This is also a problem especially when I was at work.
Do you have any dizziness or orthostatic hypotension?
How easy was it to take early health retirement?
I will also look into the PD warrior.
Take care and perhaps we can talk off line or via private message if it is helpful.
Andrew
Hi Dave, the forum is a good starting place, welcome and apprecaite your first time reaching out. As JulesAndSi have posted I also feel this another symptom and how any stress trigger can heighten this. Similar position to Griff81 I too have experienced internal tremor which for me is exacerbated by stress. I have a wonderful support team with occupational therapy, neuro physio and OT team, happy to share strategies, tbh they have kept me going for the last fifteen months or so but it has been very hard. If could offer any immediate advice, take each day as it comes, focus on the positives, what you can do, what you have achieved rather than what you couldn’t do. Be kind to yourself, stay well hyrdated and exercise are good starting points, I found trying to ‘stay on top’ of tasks ‘and asks’ left me with an overwhelming feeling of failing, not being able to manage, which in turn heightens my stress and anxiety and in turn my symptoms. I am currently using Qigong but have tried yoga, this didn’t help with my low BP, I have reflexology sessions every 8 weeks and I take time each day, every day 15 mins to actively switch off and relax. Good on your with your fitness regime, I have seen the PD Warrior but haven’t got around to that one but did try the ballet! You are not alone, as Andrew posted happy to chat, look foward to your future posts, take care all
Hi Jules. Anxiety is awful. It’s hard to get it under control when it strikes. It makes the Parkinson’s even worse. I feel for you and your partner. Have you thought of doing some exercise. I do work out 4 or 5 days a week and it does help. It gives you something else to focus on and it can make you feel good.
Hi Dave
Thank you for your message.
As soon as we got the diagnosis, Si started exercising more. He’s not the greatest at this but at least he is doing more and we are joining a gym this week with a swimming pool.
I hope you stay well and again thank you for contacting me.
HI Dave
I to am troubled with anxiety I have tremors down my right side the more tense I get the most my tremors get I also have a consent ache in my left shoulder, I was finding it very hard to keep calm with any problem that came up but the more upset the more i felt the tremors, I do still work it is getting harder but I am learning Technics how to cope with it, I do use a computer at work and I have found like with spread sheets if i am doing something and my hand is shaking i start getting frustrated then I have to walk away for 10 min to calm down as my hands shakes violently, but I know find that when I am coming home from work I stop the car and try to calm down I always go in the house with a big smile on my face and say a cheerful hello, I then take the dog for his walk about an hour or so, its a routine and works for me, it is an effort so my outlet is music and reading and the thought I have PD and I am dealing with it my way not for all hope you find your outlet and something works for you best of luck
Hi Peter, thanks for your message. Sorry to hear of your situation.
It sounds as if you have some kind of routine going. That’s a positive and you must keep it going.
I have my routine which involves going to the gym at least 3 times a week and also doing stuff at home.
I would say take a look at the PD Warrior exercises. It’s all done online from the comfort of your home. They do exercise that targets your PD specifically. Have a look on YouTube. I did the 10 week challenge with them and I found it helpful.
Try to stay positive and focused on all that you do. Let me know if you try the challenge or if you want more info.
