Yesterday we had a very kind and helpful appointment with my husband’s consultant, the first since an abnormal DaT scan confirmed his PD diagnosis. We came away in better spirits than for many months and it prompted me to look again at the research around Parkinson’s.
For the first time, I came across The Science of Parkinson’s blog, written in plain English by Simon Stott of The Cure Parkinson’s Trust. As I haven’t come across the blog mentioned on the forum before, I’ve posted the link to it below in case anyone else is interested. It really is interesting, and very readable. Incidentally, I noticed Simon also has links with Parkinson’s UK.
Dear Mountainair,
Thank you for sharing the link to The Science of Parkinsons, this is very helpful. Can I ask about your husband’s DaT scan? My father has has Parkinson’s symptoms since around 2015 however he hasn’t responded to Sinemet, the consultants we have seen just keep increasing the dosage so I wondered if we would get an indication of what’s happening if he had a DaT scan? His consultant told us that it would be just a big expense but with my father’s symptoms progressing we are finding it very hard and frustrating that Sinemet is not working and hasnt really ever worked since taking it. Any advice on a DaT scan would be great appreciated. Thank you in advance.
Hello Bluesky7
I am no expert in this area but my understanding 're Sinemet is that the reason for your father’s non response could be that the dose/timing isn’t right for him yet as it can take some time to reach the right/best dose for the individual person. Alternatively, your father may have one of the atypical parkinson syndromes which do not respond to levodopa rather than PD. Many such people are initially diagnosed with Parkinson’s disease as the symptoms are difficult to differentiate, especially early on in the disease course.
Regarding DaT scan, there is a good, brief, easyread explanation of why they are not used routinely here https://www.michaeljfox.org/foundation/news-detail.php?ask-the-md-datscan-and-parkinson The situation is similar in the UK.
In your situation, if your father is not already being seen by a neurologist who is a specialist in movement disorders, ask for a referral to one for a second opinion - unfortuanately not all neurologists are equal. We did that a year ago after my husband was initially seen by a rather arrogant locum neurologist who seemed out of date, clearly did not have a clue and failed to make any meaningful diagnosis. My husband’s DaT scan result confirms that dopamine cells are not functioning properly and the pattern of cell loss indicates that the most likely diagnosis is PD. Only time will tell if this is the right diagnosis especially as his major symptom, amongst others, is unsteadiness/balance problems and he does not have a tremor.
Either way, you clearly need more answers and if your father’s consultant is a MDS, ask him outright how confident he is the PD diagnosis is right.
Best wishes & I hope you get some answers.
This site is a fantastic reference point…
He shows what you need to do to recover your sense of smell.
Which supplements improve variously Inflammation; free radicals, mitochondrial misfunction or protein misfolding.
Also which diets deliver improvements in Parkinson’s.
And how much green tea to drink.
Elsewhere someone suggests it should be obligatory reading!
