What is your personal experience?

[Susie01]

There are a couple of questions I would like to ask due to my own experience, please respond in numerical order, and any suggestions you may have. I will give my response to each question to start it out.

01. Were you the sole provider for your family before your PD diagnosis?

02. If you were the sole provider, how did you make the bills?

03. Did you have to file bankruptcy?

04. Did you loose your home?

05. Did you have health insurance at the time of diagnosis, were you able to

keep health insurance (self pay) after your diagnosis?

06. If you were not able to keep it, were you able to get state run benefits until

your disability/medicare were approved.

Responses:

01. Yes

02. I was asked to resign my job, the only income I currently have is child

support on my daughter. There have been times we did not have

money for groceries and friends would help us out.

03. I am considering filing for bankruptcy, I met with an attorney last year

but then thought I could go back to work when my medications had

been effective, I was wrong. I plan to meet with an attorney again.

04. I have not been able to pay my house payment for many months,

my property taxes are due in March and I do not know how I will pay

them. My mortgage company is trying to work with me to find a solution.

05. I had health insurance with my job, if I had the money I could have

continued on a Cobra policy, but I did not have the money to pay it.

06. I live in Tennessee. TennCare was suppose to be the answer for

medicare in my state. Long story short, it has not been successful

and is now only offering care to children and women with breast cancer.

There is a retired physician who has opened a clinic called Volunteers

in Medicine. They have a couple of employed persons, the rest are

volunteer doctors, nurses and lab techs. They are not accpeting new

patients. It happens that the MD who started the clinic is a close friend

I am hopeful that he will make an allowance for me.

[Parkinson_Schmarkinson]

i read your story with dismay. I do not face your challenges, all I can say is that I wish you well and that I do not take for granted my relative good fortune.

[Hidden]

I am blessed.

I am married and was told I have PD 2 days after my daughter's wedding and 4 months before my youngest daughter's wedding.

I had my husband's insurance and my insurance...a BIG help.

I receive a disability check and a very small retirement income from teaching. I use the retirement income for my medical expenses.

[Jerebet]

Susie, I am so sorry to hear of your troubles, I will dig up what I can find out about possible resources to help you. I am one of the fortunate ones.I am still employed,but expect I will be unable to work within 2 to 5 years

01. Were you the sole provider for your family before your PD diagnosis?

Yes and I still am the sole provider. I am single with adult children in school.

02. If you were the sole provider, how did you make the bills?

I work for a health care provider as a Senior web adviser/project manager.

03. Did you have to file bankruptcy?

No

04. Did you loose your home?

I still have my home but it has become too much for me to physically maintain.

05. Did you have health insurance at the time of diagnosis, were you able to

keep health insurance (self pay) after your diagnosis? I had and still have my employer contributed health insurance,

[Jerebet]

Susie here are some links to help from the Middle Tennessee Parkinson's Association. mtparkinsons.org/site2.0/ar...

Link to Financial aid resources

pdf.org/en/resourcelink/cat...

Drug Assistance programs.

ncsl.org/issues-research/he...

Driving & Transportation Resources

Metro Transit Authority, Access Ride: [phone]

Mid Cumberland Human Resource Agency: Contact the APDA Information & Referral Center for information about the county in which you reside: [e-mail]

Transportation Security Administration (TSA): “Travelers with Disabilities and Medical Conditions”

Educational Programs

Keys to Caregiver Health

Legal & Employment Support

APDA YOUNG ONSET CENTER

Website contains extensive information on legal and employment matters. Visit this site and sign up for regular updates.

JOB ACCOMODATION NETWORK

West Virginia University

PO Box 6080

Morgantown, WV 26506-6080

[phone] or [phone]

Free information about job accomodations, the Americans With Disabilities Act, and the employability of people with disabilities.

Food Banks in your state

feedingamerica.org/foodbank...

If you need help with forms please message me.

[PatV in reply to Jerebet]

Thank You!

[Susie01]

Wow, you are always full of information. Thank you soooo much, Susie

[ram927]

from your replys I am very lucky. Im 68 but retired but that's also where i contacted PD thru agent orange in VN my home is pd up and I have several retirement plans in effect so am an exception rather than a rule I hope you can find help

[PatV]

I was working, supporting myself when diagnosed, and retired with benefits from my job at 67, paying two mortgates. I am fortunate. Recently I have had to hire an aide but am looking into resources that provide free help. All the best to you. Keep us posted.

[LizaJane]

hey susie, sorry for your all your problems, im 49 and have had PD for 8 yrs maybe a little longer just not knowing, ive been through a divorce myself but my husband now dated and married me with this, there is someone out there for you. i still work full time as a flight attendent, so i do have insurance and can be on disability when needed. i havent had to file bankrupcy and hope not too, im able to make bills and house payment, ive been trying to get things paid down due to PD incase i have to go on disability. why cant you get on disabity? it should pay 60 percent of your income..i can ask my mother in law some questions for you if you want she is an attorney she does some disabilitiy cases and she might be able to answer somethings for you..let me know what questions i can ask her and i will she if she will answer them..that could help a bit.. ask god for strength and help, he helps me all the time..

[Susie01]

Thank you LizaJane,

I have applied for disability, the attorney told me in the beginning that it would take 2-3 denials. I have my second denial, they attorney told me to come back after the second and we would take it to disability court. The second denial actually said they believed that I could still work as a nurse, this is after being asked to resign my position due to the cognitive and physical changes I have experienced. I even sent my employer's records so they could see what the issues are and also a letter from my neurologist saying I could not work. Even though he had told me from day one that I could not work, I had tried to anyway, I now know that I was setting myself up for failure...

I cannot get regular disability, since I was home with my children for several years before going back to work. What I am applying for is SSI. If my ex dropped dead, I could get his disability which would be more than enough to live on, lol... He is an MD, we took out several disability policies on him, none for me, oh if I could have had a crystal ball! I got almost no alimony and little child support because I had multiple degrees and always had managment level jobs...

I will welcome any knowledge that can be shared, thank-you, Susie

[cowmom27]

hi Susie, 1. ironically I had an employee physical in the morning and was diagnosed that same day with PD. My new job was a staff RN in a 35 bed ER and I worked there for 17 mon. after dx before returning to a mid-management position in long term care where I remained another 4.5 yrs until I retired in April of 2011. I was divorced with 3 grown adult children & supporting myself. 2. no issues paying my bills 3. did not have to file bankruptcy but have placed my 3 level condo for sale as multiple stairs were an issue 4. had health insurance thru employer and now that I am retired have Medicare and pay monthly for supplemental health insurance 5. per a Social Security agent applied for disability and was approved 1st time -----if it wasn't for meeting a very kind gentleman after 15 yrs of going it alone, falling in love and moving to a 1 level home in a 55+ community together which he covers all expenses until I sell my condo---I would not be enjoying life as much. It will be 6 yrs next month since I was diagnosed and while there are subtle changes, more fatigue, pain---I am still able to care for myself as long as I pace myself based on energy level and take my medications on time. I do feel blessed that I am strill relatively independent. Wishing you luck as well. Gail

[Susie01 in reply to cowmom27]

So glad for your fortunate outcome. I was years into the PD before it was diagnosed, it was stage II at the time of diagnosis, now is pretty much stage III. I do have a lot of cognitive issues, I thought I could still do my job, I now see that it was out of desperation on my part, but I was not competent to work as a nurse anymore...

[carolineb211]

1 No- in the fortunate position that I do not have to work, I choose to do so,my husband is the main earner in our family

2.NA - husband pays the bills,

3. No

4. No- our mortgage is paid in full. Several years ago ( I am 53 / OH 56)

5. - Yes, we had Private BUPA cover, and still do.

6. - I have never claimed benefits, as still in full-time work.

[Susie01]

I am so glad that you have a supportive spouse, my life would be very different now if I had that...

[carolineb211 in reply to Susie01]

I know i am very lucky and my husband is amazing. It saddens me that so many people have to cope with everything on their own. I can't begin to imagine how hard and frightening that must be.

I hope things get better for you

Caroline x

[Susie01]

Thank you Caroline,

Yes, it is difficult to cope with everything on my own, being a single mom is hard enough, dealing with a PD makes it even harder.

My daughter is pretty patient with me most of the time, my son just wants to "fix" it and does not have a lot of patience with the memory losses. Though I am thankful for both of them, being teenagers, they are much easier to deal with than some of the teens I know!

Not sure who will be there for me as the disease progresses, just gotta live a day at a time, Susie

[cowmom27]

Susie, where abouts are you located? What meds are you taking and if you wish to share how old are you? Any other family besides your children who you can depend on if needed? What type of nursing did you do? I agree we all need to take one day at a time but no one should have to go it alone. Are you on facebook? Lets stay in touch. Gail

[Susie01]

I will send a personal message to answer you questions.

[Joealt]

My wife is my Guardian Angel. No job. No Healthcare Insurance. No Disability . Everything is out of pocket.

[Susie01]

That is wonderful! I hope you have filed for disability just in case something should happen to her. It is a very long process. This disease has taught me that anything can happen to us...