DBS or No DBS : Surevy https://bit.ly/2Mxgk84 results

[Xabojuro2]

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.

>>>Employment status

Two out of the five respondents are in active employment whilst the other three are retired. This is in-line with the age groupings.

>>> Carer

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”

>>> Conclusions

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

[M_rosew]

I find it strange that answers were all from people in US.

This is a UK website!

[Xabojuro2 in reply to M_rosew]

strange. i did not know this is was a UK website. i cant explain it.

[Hikoi in reply to Xabojuro2]

I too was going to point out this is a UK London based web site with all details clearly at the bottom of the page, at least on my ipad. I think your survey idea is good but the question on cost really only caters for the US market because many other countries have universal health care or similar so in UK for eg the state picks up the bill. I take it you are from US. - thats an assumption (base on evidence above)

[Xabojuro2 in reply to Hikoi]

I am from the UK.

[Hikoi in reply to Xabojuro2]

Haha, egg on my face! Best wishes