Happy New Year Everyone!..I wish you all a good one..I hope 2007 brings us closer to the hope of either a cure or better treatments

2006 was a bittersweet year for me..Lots of changes..I lost my Mother in June..My daughter moved to North Carolina..I met 12 of you good people who have helped me so much with learning how to live with and manage this disease..I became the treasurer of my support group..A board member of the R.I.Chapter of the APDA..I sold my boat due to my progressing pd..I became a State PAN Coordinator..and Im still waiting on my brothers prostate biopsy results..It has been better as far as living with pd..the acceptance of it..Ive had many powerful role models..Thank You all for your support..your phone calls..your e-mails..pm's..posts..and for the blessed opportunity to meet some of you in person, I couldnt have made it through this ever changing journey without you all

My week:..I spent Christmas Eve with my family..My cousin invites everyone over every year..They naturally were concerened about my Brothers and my health..There was plenty of good food and conversation, and on Christmas day I spent the day with my girlfriend, and we exchanged gifts and had dinner with her family..So I had a good Holiday

Other than that the rest of the week Ive been trying to clean up the yard, and bring all my conch traps back home from the pile I made on the dock..Theres one other thing..Ive been battling with a credit card company over their refusing to honor the disability insurace I had on the card..So they call..and I tell them to go and pound tar..Im not paying period!..End of story..The account is almost 4 months overdue and they only call about 3 times a week..If they knew they were right and I was wrong they'd be calling 10 times a day

BTW..Where is everyone lately?..There are alot of people missing in action here!

How was your week?

Steve

Hi Steve,

I have a date with my grandson Nathan tonight. We're going to get dressed up and go to a party at one of my teacher friend's house. I'll be seeing my faithful friends from work who keep in touch and meet for lunch regularly, plus many other people who are family and friends of the host. There will be dancing, adults and children alike, all ages, so Nathan and I will be tripping the light fantastic. Nathan has a few moves, but I have a feeling he won't stay in the groove, but rather burst into his own girations, which may involve somersaults and yelling.

That's OK, there will be other 3 year olds there; he won't be the only one.

Happy New Year!
Paula

Hay All,
If any of you read the "How are you feeling" thread, I think I'm going to live. I'm feeling a lot better today but still achey. My eye is better but watery. I suppose it's nothing a good wack in the head wouldn't cure.
Steve - I know what your going through with the credit card company. Only mine is the medical insurance company. At this point it would be nice to see thier building explode or something. Oh well, it will work out. Just stick to your guns and don't let them intimadate you just because they are a big company.
Our New Year celebration will be pretty mild. It will be just us. We will play a few card games, watch a couple of DVD's and more than likely be asleep before midnight. WHHHHooooo!!! Sounds like a party!!!

GregD

Steve...yes, where is everyone lately...holiday vacations I suppose. At least there is activity here in NeuroTalk. BrainTalk hasn't had any activity since the 24th, except for your weekly update post.

Since you are a PAN coordinator I hope to meet you in February ...and anyone else in the forum that will be there that I haven't already met.

The balance of my holiday week didn't turn out as I had planned. The plan...a few days of R&R from grandchildren, just sitting in my chair here at this PC that I spend way to much time in front of or sitting my my chair in the living room stitching and watching movies. Instead, I spent time watching my grandsons so mom could paint bedrooms and dad could meet a publishers deadline, which was yesterday. They both had the week off because their respective college/university were close for the holiday.

The only down side to my week is that I am still sick with a throat problem and swallowing problems......so I am still in pain...two weeks now...

Did manage to get a third website started for small local group. Luckily this one will always be very small.

Steve, I too can relate to the credit card problem. I have only one that has been $1,000 for...lets see...three years now. Since I can no longer make the minimum payment, but a very much smaller payment, the small part that becomes the actual credit payment (after the interest payment) is offset monthly by the non-minimum payment charge. And, oh yes, if I miss a payment, or I am a day late...yepper...hat phone rings daily...maybe even twice a day.

Well, 2006 has been quite the year.

I started out with high hopes and big plans, looking to finish my Master's degree and then seek work as a Certified Child Life Specialist, working with children in a hospital environment helping them with their individual illness, the resulting treatments, and enabling them to develop developmentally appropriate coping mechanisms. I also was hoping to teach at the college level.

Then in April I got my PD diagnosis and everything dramatically changed. It answered a number of questions in regards to how I was feeling, both physically and emotionally. Working in the high-stress environment of a hospital was out, and my career plans took yet another unexpected turn.

After absorbing the diagnosis, I decided to become active in the PD community as a way to not only help others, but to also provide me with a way to cope with my personal version of PD.

I attended my first PD event put on by the MJF Foundation. I met some great people with PD and their families, and spent a few minutes with MJF. It gave me hope and inspiration to move forward.

Then in July I headed to Washington, DC for the NPF Young-Onset conference. It was the scariest and yet single best thing I have done since my diagnosis. I met some incredible people with PD and became even more inspired.

While at the conference, I received a call from my old employer saying that a mistake was made and the Long-Term disability insurance I thought I had, had literally been pulled out from under me. While at the conference, I heard story after story of people who were caught without LTD and were struggling financially as a result. I thought I was so lucky that I had it, only to be told that I didn't. Numerous lawyers later, the concensus is that the employer was wrong morally and ethically but are protected by law. Such is life.

So now my financial future is in serious jeopardy. My career as a Child Life Specialist, to which I had devoted the last five years of my life preparing for, was now out of the question. And teaching at the college level is in jeopardy as well, due to conflicts with the minimal income the position pays and the impact on my Social Security disability.

Lot's of things have changed, but it's not all doom and gloom. I've met some remarkable people, both in person and through websites and forums like this one. Many of whom I know will be friends for life.

I've been able to create a business and website, and get out to speak in order to educate, advocate, and make people aware of this devastating disease. I've written articles about my PD experience that have appeared on websites and in print, and had stories written about me locally.

I've joined the committee for the NPF's Young-Onset conference for this coming July in Chicago. I've joined PAN and will hopefully make the trip in February to DC if they approve my request for scholarship.

I've also started a Young-Onset support group here in my area because there wasn't one. In four short months, we've got 16 amazing members.

And, I finished my Master's Degree, which is remarkable for a person who barely graduated high school, and I did it all in an extremely short period of time with a 4.0 GPA. All while dealing with PD.

Many doors have closed, but many have opened. I don't know where 2007 will take me but I'm ready for whatever it chooses to throw my way. All things considered, I'm a pretty lucky guy.

May you all find peace and happiness in the coming year. I'll leave you with one of my favorite quotes:

"The privilege of a lifetime is being who you are."

Happy New Year! I hope you take the time to celebrate you...

Todd
PDTalks.com

Happy New Year Carolyn!
What happened is I had disability/unemployment protection on my card..when I became disabled I applied for protection and they suspended payment for 2 years instead of debt cancellation..So unbeknownst to me..2 years later I get a bill..so I called them and said..Hey whats this?..Long story short they resend me the paperwork for debt cancellation..I fill it out..have my neuro sign it with his comments..send it in..they reply saying that I wasnt insured prior to my dx, which is a lie..So I requested all the monthly statements from 2004..they say they will cost me $5.00 a piece..I said, I dont care..send them..a month goes by..no statements..I get the monthly statement/bill, and theres a $60.00 charge for the statements.. ..that I never recieved..So they claim they re-sent them a week ago..when they call they ask for payment..I cut them off and ask..wheres my statements?..Well Mr Medeiros..we sent them out..Well I dont have them..and dont bother me untill you send them..GOOD BYE!!..I also told them if they dont send them I will have my lawyer subpeona them

The credit card co is Providian..now Washington Mutual

I dont know if I will make it to the PAN Forum this year..it depends on the outcome of my brothers biopsy on Jan 19..So I will make a decision at that time because I wont know untill then if I will be able to attend or not..but I hope that I can..I would like to meet you, and some of those I havent met yet and see some folks that Ive already met again

Steve, I have had a similar issue to yours - as a self-employed worker I made sure that my company finance had unemployment and health insurance from the outset. When it came to actually winding up my business which had for ten years done really well, and was all in order, two of the three banking companies reneged on the insurance. I was unfortunate in that I have an unclear diagnosis, and both of these companies wanted 'proof' of disability in a letter from my specialist. In the absence of being able to supply any such proof they both hassled me to an inordinate degree, and I had to get a third party organisation involved to get any kind of resolution at all. With both these companies the charges they imposed AFTER I had let them know of my difficulties almost doubled the debt burden. So long term debt on a now very low income - no fun. The third company on the other hand was very accomodating, accepting a long term indefinite nominal payment, and trusting that I was supplying them with accurate reasons for being unable to work. As I had been paying insurance on all three I was amazed to find that it is often not worth the paper it is printed on, I wish I had known that before and not bothered! I would advise anyone in a similar situation to take legal and medical advice BEFORE trying to call in existing insurance, and make things as watertight as possible, as part of the process of preparing to give up work. Incidentally even though I was treated well by one company NONE of the insurance actually materialised - so what exactly are we paying for!

Lindy

Exactly Lindy..They are there with their hands out to collect the premiums, but when it comes time to pay they have every excuse in the book to reneg..So I told them its no problem cuz Im not paying..period!

Ive googled up the company and theres a few pages of complaints and law suits, class action suits and less than desirable customer relations policies lodged against them..They were sued a few years ago for..get this..Adding unemployment/disability insurance on customers credit accounts without the consent of the card holders and deducting premiums monthly..The court awarded the plaintiffs $3,000,000 in a class action suit..So Im just another customer of their in the long line of duped consumers

Hey Everyone,
Happy New Year!
Love you all,
Maryfrances

Well, today was the day. I met with my manager and told her that I thought the time had come for me to leave my job. She was very kind, said she thought it was admirable that I'd been able to continue this long, and told me how to go about the process of applying for disability. The strange, awful thing about our meeting was that partway through it, she received a phone call telling her that her father had just been killed, run over by a garbage truck. She had to take a few minutes out, of course, and then insisted on continuing with me as she knew she would be away for awhile and didn't want to leave me hanging. What a strong person.

So I'm a little relieved and a little sad and a whole bunch scared about what on earth I'm going to do with myself. The last few months I haven't had the energy to do much BUT work. And now I have to tell everybody. I'll be very glad when the transition time is over. Sigh.