Dystonia Bulletin Board

After compiling everything I could get my hands on - and traveling around the country to see some of the best doctors - who deal with Dystonia - such as at Baylor Medical Center in Houston to see Dr. Joseph Jancovik and Columbia Presbyerian Hospital and the Lahey Clinic - as well as Dartmouth Hitchock Clinic - I was able to get my Social Security Disability Insurance - (or SSDI) approved without any lawyers - and it was kind of funny - in the end - they kept saying to me - ok! we are all set! Please don't send us anymore paperwork or notes! -_- Which is always a good thing! I kept sending them everything and anything I could get my hands on that I found on google and printed up on the subject - from Scientific Journals on the subject to print out from this website - on PKD and PNKD as well as from the wemove website and from the work of Dr. Luis Ptackic at his Neuro-Genetics lab at UCSF - who is doing a big study on Familial Paroxysmal Dyskinesias - that both my father and I participated in -
and I had to not only prove my case to get SSDI but also to prove my case to the company that handled LTD or the Long Term Disability with the company that technicaly I am still with - just on LTD status - and that meant sending them tons of info. on this little known condition as well - Staples Copy Center really loved me there for a while!! -_- I got to know them on a first name basis! -_-
But it was really worth it - because I was approved for both and now have been able to keep my Health Insurance through the company that I am currently on LTD with - we pay a bit each month for it as well - but it is nothing for how much coverage we get - so I am very thankful for that!

The kicker was that I was properly diagnosed to begin with - then Misdiagnosed by the supposed "experts" and then had to be "properly diagnosed" again - so that was a trick and they were not going to approve me after a year and a half because the suppose experts kept saying that all my condition was pychogenic but then I found a really great Neuro-Pychiatrist who - without question - stated that "despite differences of opions" - that my condition was in no way pycho-genic and that it was a very real pychical but rare- condition - and that I indeed in fact did have and in fact had originally been correctly diagnosed - with the Paroxysmal Dystonia and Dyskinesias - and now - I went back to the original doctor who was very upset that the others gave me such a hard time - when I just went to them for help - but justwrote me off as a head case - he was very angry that they did that to me - so now - I just stick with him and is working out really well -

All that to say - is that after the offical - confirmation by the Neuro-Pychiatrist - that indeed my condition really is Paroxysmal Dystonia and Dyskinesias - both the LTD and SSDI folks since that time - have never ever given me a hard time and I have been approved on a permanent basis since that time. and I did have to give alot of info. even to this doctor too - so that he would know about my condition - and "present my case" to him as well - thankfully for me - he was a really smart fellow - who really took an interest in this rare condition and did his own research and reading on the subject and found that everything he read - matched exactlyh what I told him and what he saw - and so that way he was able to confirm it so definitely - he even wanted me to come back to do a video tape for his students so that he could teach them about this very rare condition - so that is cool! -_-

Anyway - all that to say - is that it is alot of work - but It can be done. I found the more info. and the more "weapons" you had in your arsenal to "prove" that you in fact do have this condition - the harder it is for them to deny you - because you are educating them at the same time - I sent so much info. to the SSDI folks that when they got it - they approved it so quickly that they even cancelled the doctors appointment that they had made for me to see their doctors -and pychologist - saying that I had provided so much documentation - that they did not need further "proof" that I actually did have this condition - and the LTD folks - now when I ask them if they need anymore info. = they always say - NO NO - thank you! Your file is so thick =we have all we need thanks so much! -_- In this case, never hurts to have too much!

So, it is possible - to get approved for SSDI - you do have to be prepared to do a lot of leg work - which is what the lawyers usually do that people hire - but it can be done! And I ended up learning a tremendous amount of info. on this rare condition as I was gathering it to send to them - and the great part was that even though it took a year and ahalf to get it approved - they backpaid me to the day I went out on disability - so after all was said and done - I ended up getting a heffty back pay check - so it made all the work - worthwhile.

Hope that helps some and good luck to anyone that is going through this process! -_-

I have to say - some ignorant folks out there - mistakenly say - "oh - you are mouching off the system by getting SSDI money - " and I often will ask them - if they have car insurance? and if they do - I ask them - did you pay in every month for this, just in case you needed it? and when they say yes, I tell them that SSDI is exactly the same - when you are working - they automatically take it out of your pay and put it into your Disability fund - just exactly like car insurance or health insurance - so that if you some day need it - it is there for you to use - it's money you have paid into - to use someday if you need it - it's not a hand out at all - it's your own money that has been taken out of your pay check for you to use - if you should need it someday - and many people don't understand that. And I am very thankful to have it - and sure takes the pressure off - as haveing PKD and PNKD is physically very difficult to deal with every single day - so having a little income and health insurance and not thaving to worry about this - sure is great as I just try to get through each day with this condition.

So, I wish you all the best! -_-

Adios~