Five people responded and I am grateful for the time and willingness to share information.
Below is a summary of the results:
>>>> country of residency
Not surprisingly the bulk of the participants live in the United States given that survey was announced here on this website. Only one participant lived outside the US.
>>> Age groups
Surprisingly one participant is in the age group of 18 to 24. A very young patient indeed. Three participants are in the age of 65 to 74 and one participant is in the age group of 55 to 64. This perhaps shows the current thinking of DBS being considered as a last resort. The case of 18 to 24 is interesting.
Two out of the five respondents are in active employment whilst the other three are retired. This is in-line with the age groupings.
All but one participant have family carer.
>>> Who pays for the costs of treatment?
One participant relies on the state whilst two participants used their insurance to cover the cost of the treatment. The remaining two hav used other means to cover the cost of treatment. We don’t know what are the other means.
>>> How long have you had Parkinson
Three participants had day condition between 5 to 10 years. The other three participants lived with the condition for more than 15 years.
>>> What are the symptoms?
There is a spread of symptoms and it shows that condition affects people in different ways. It’s interesting that only one participant suffers impaired posture and balance. The most common symptoms seems to be slow movement. Here are the results;
Tremor - 2
Slowed movement (bradykinesia) - 3
Rigid muscles - 2
Impaired posture and balance - 1
Loss of automatic movements -2
Speech changes - 2
Writing changes -2
Other - 0
>>> How long people waited before they had DBS after diagnosis
That is widespread of waiting times after the diagnosis before DBS. One participant had the operation one year after diagnosis. The longest waiting time is 10 years. 4, 6, 8 are the other waiting times.
>>> The DBS was performed
3 Operations took up place in the United States, one in Canada and one operation was performed in the United Kingdom. One of the participants elected Canada as supposed to his or her country of residence to have the operation.
>>> Was it the right decision
All participants without exception agree that DBS was the right choice
>>> Contact with Antonio Constantini
None of the participant had any contact with Antonia.
>>> Any other comments
Two participants left positive comments.
” The sooner the better”
“I wish I had done sooner”
This is not a scientific analysis and I am not a statistician or a qualified researcher to declare this small endeavour a significant study. The sample is way too small to make any meaningful suggestions.
Having said all of the above caveats I think, for me anyway, the outcome of this survey is an additional piece of information to consider along with all of the pieces of information that I am gathering to make a decision on DBS.
My own personal takeaway from the survey is that
DBS makes a huge difference and If you’re going to have the operation have it early