This forum is for discussion of your experiences of different drugs and treatments, including surgery, side effects and therapies.
It’s important to remember that the views offered here are the opinions and experiences of other members. This should not replace professional medical advice. Always consult with a healthcare professional such as a consultant, GP or local Parkinson’s nurse before stopping or changing your medication or trying new treatments.
Hi, I had my first NHS physiotherapy appointment this morning after being diagnosed in June 2019. The physiotherapist got me using weights on the arm affected by tremor/stiffness and advised me to buy weights so I could use this method at home. I’ve never heard of this treatment before and I was just wondering if anyone else had come across this? Thank you for your response.
Did you want more information on physiotherapy? If so, you can find a lot of information on this via our website here: https://www.parkinsons.org.uk/information-and-support/physiotherapy. You can contact our helpline and speak to one of our advisers about the different forms of physiotherapy - feel free to give us a call on 0808 800 0303.
One major challenge that Parkinson’s research faces is that, in most cases, we do not know what causes the condition. The research team at University of Haifa took skin cells from people with Parkinson’s of no known origin, and those with a change in a gene known to be associated with Parkinson’s, and growing them into brain cells in the lab. Looking at these cells in more detail, the lab found some similarities between the two types of cells, including that communication between individual cells was slower than normal.
This research is promising because it has highlighted a new area which can be studied, and design therapies for Parkinson’s. It’s also exciting because it appears that this could work for people with Parkinson’s, even if we don’t know the cause. However, it’s important to note that this study has only looked at cells grown in a dish, and not in animals or people with Parkinson’s. It will be exciting to see how this research develops.
Hi Reah
Long time no speak
I have eventually got a pd diagnosis instead of the F.N.D. diagnosis I’ve had to live with for more years than I can remember however after sacking my consultant and suggesting that he may have a conflict of interest issues he retired to spend his silver.
Anyway I had to seek a private consultation with a movement disorder specialist in Stoke and travel from Oxford.
He has now taken me on as an NHS patient after he diagnosed tremulous Parkinson’s which then meant I was able to access p.i.p etc and travel to sport Parkinson’s events in Worcester and join a group called box positive backed up by neuro heroes this would not have been possible without the proper diagnosis.
I’m back on Sinamet just a low dose which if I get the timing right I’m able to have a decent amount of exercise and gym session so things got better for a while until depression took its toll along with well just apathy I suppose but I’m still managing and I’m also still a carer for my wife who has deteriorated since the pandemic however I believe I could benefit from the services of a Parkinson’s nurse to help me reach the correct dose to last me a bit longer unfortunately insomnia and acting out vivid dreams are still very much my enemy.
Well that’s where I’m at now but I don’t know how to go about obtaining the service of a Parkinson’s nurse My new consultant is Dr Carl Mann at the royal Stoke hospital.
Anyway enough gossip about me
I hope you are well and happy
Tommy.
I’m sorry to hear about your Parkinson’s diagnosis; however, I’m sure you must be relieved to finally get a definitive diagnosis rather than being in limbo. I’m happy to hear that you’ve been receiving the right support from the private consultant you’ve mentioned and you’re back on Sinemet.
Sadly, depression and apathy can be common for people with Parkinson’s so I’m truly sorry to hear that you are experiencing this too. Symptoms can feel overwhelming, but with the right help and support you can manage depression and live a fulfilling life. In the first instance, I would encourage you to speak to your GP so that they can ensure your medication is working correctly - we have more helpful tips via our website here..
In regards to speaking to a Parkinson’s nurse; we can arrange this via our helpline service, give us a call on 0808 800 0303. One of our advisers can put you in touch with a Parkinson’s nurse who can give you a call back.
Sorry I have been travelling and basically feeling sorry for myself, : but am back
They seem to be beginning, to begin , to begin to get a handle on things.
Hopefully within the next 100 years or so…
I also got a diagnosis of FND from an NHS neurologist and was told to have CBT, phsiotherapy and to come back in 10 months! I thought ‘if this is all in my mind and not physical then I’ve got this’ but despite following all the advice my symptoms got worse. I went to a private neurologist who advised havinag a DAT scan which confirmed hixs diagnosis of PD. Strangely this felt like a relief because after 2 1/2 years of struggling I finally had a diagnosis and a way forward.
My advice is to listen to you body and follow your gut feeling, don’t feel intimidated if you feel you are not being treated properly.
: but am back 
