I have had Parkinson's for over 9 years I... - Cure Parkinson's

Cure Parkinson's

26,504 members27,915 posts

I have had Parkinson's for over 9 years I am 56 now I'm on disability and have SSDI and AARP for Supplemental insurance.

Justsayhi profile image
13 Replies

The health insurance and Medicine is out of site how do I get frees medicine I only get 1880.00 from disability to live on and all my medical is over 900.00 a month how do I live on 1000.00 for rent and food. Don't the drug company's help you out.

Most of my friends are none Existent because of the burden they may feel towards me my own children have turned there back on me. And when I try to meet a lady the minute I tell them I have PD they are gone. This hole thing is so Frustrating I feel like my Future is very unsure . I'm seeing a phd to help . I guess I just need to chat with someone who is going through the same think so I don't feel so alone with this

Written by
Justsayhi profile image
Justsayhi
To view profiles and participate in discussions please or .
13 Replies
Sedona profile image
Sedona

I will be 56 later this month and have had pd for over 10 years. I just recently had to leave my job, I just could not do it anymore, physically or mentally. From what I understand, once I have been out of work for 6 months, I can apply for social security disability and pray that I will get it. Though my husband at this time is working and his medical coverage pays for a large portion of my meds, it will be difficult for us to pay our bills without my income. My husband's health is not good and if he is unable to work, there goes our medical coverage, thus I have a fear of what you are having to deal with now. Though my heart goes out to you, I can offer no advice, though hopefully someone in this group can offer some. I will be thinking of you, please keep us posted.

Justsayhi profile image
Justsayhi in reply toSedona

Sedona you will get it make sure your Drs write a letter to SSDI saying you can't work anymore. Don't worry. Marty

arwenmark profile image
arwenmark

Sedona, I believe that you must FILE for the SSDI and then wait at least six months but I am not sure, but please do veryify which it is.

landman profile image
landman

2 years after you start SSID, you get medicare. You can get medicaid. If you are not on medicare or medicaid you can go to website of drug and get discount card. What drug are you taking? Also a great site is goodrx,com. Talk to your pharmacist about discounts.

Justsayhi profile image
Justsayhi in reply tolandman

I had to sell my house and I'm using the profit to love off of . I have SSDI and it still was not enuf . Will the give me Medicare Or Medicaid with my savings I have in the bank or do I have to be with no money at all. Marty

MGirardi profile image
MGirardi

Landman is right except with my case ( and I was angry when they (SSA) told me 1 1/2 years after I was declared 100% disabled for my lifetime). I was eligible for MEDICAID when I was declared disabled by the US government

because of my PD. They later told me (in the SSA office) that they are NOT to tell people that at the declared time

of disability. You don't have to wait 2 years for Medicare you my apply for Medicaid. In my case they said, " you better

sit down", you have had Medicaid already for 1 1/2 years. And there is no back billing for the cash payments I made to my Neuro. and all my RX drugs. Live and learn. It's very hard to live on $710 a month, but I can't work anymore.

Having Medicaid is a Godsend for me and my PD. Doc visits $2 and all RX is $1 per refill.

Justsayhi profile image
Justsayhi in reply toMGirardi

What if I have a little savings in the bank can I still get Medicare

Kathleen profile image
Kathleen

Partnership for Prescription Medicaton ,you can get th info online,and phone number,

Kathleen profile image
Kathleen

Patnership or Prescripion Medication ,(1-888-477-2669)

Susie01 profile image
Susie01

I very much understand the position you are in...I was an RN and have not been able to work since 2011. It took 1 1/2 yrs. for my disability to be approved. Like you, just my PD meds are around $1,000/month. I am a single mom and still have one child at home, I no longer had health insurance when I had to take medical leave from my job.

My neuro set me up to receive my Azilect for free from the manufacturer. I had unused bedrooms in my home and took on housemates to help with living expenses, one worked out, the other was a disaster! I will be putting my house on the market in January and hope to be able to sale and downsize.

There have been times that I went to the food bank when I just did not have money for food. That was difficult for me because I always made a reasonable income and did not have to ask for help...Life is different now.

I live in TN, our version of Medicaid is TN-Care, which I was able to get once disability was approved. If you receive more than $1,200/month you are ineligible in TN, not sure about other states. With TN-Care, I have no copay for Dr. visits and meds are $1.50-3.00, after 5 RX's/month I must pay cash,

I know others have had a different experience, but mine has been similar to your own when it comes to meeting people. They find out that I receive disability and have PD and any interest goes out the window.

arwenmark profile image
arwenmark

Have you tried contacting the individual drug companies directly? Most of them do have programs to help those that cannot afford needed medications.

maryalice profile image
maryalice

Justsayhio

There is a handbook I received entitled "Medicare and You" . It explains how to qualify for Medicaid. I believe that each state publishes their own. I know that Medicaid is a joint federal and state program. I may be wrong, but I don't think you would qualify if you had a large sum of money in your name in a bank account. There is a program that can help you get assistance with paying for medications. It's called SPAP (Sate Pharmacy Assistance Programs) . The number to call to see if you qualify is 1- 800 633 - 4227 and say Medicaid to get the number for your state.

You may want to ask your pharmacist, doctor or medical supplier if they know of anyone or organization that can help too.

I hope this encourages you. Blessings

Justsayhi profile image
Justsayhi

You don't need a lawyer to file for SSDI. You doctor will have to write a letter stating you have Parkinson's and you are incapable to work or hold a job. Contact Social Security. They are very nice and will tell you how to start the process. You will be Tested by government Drs. But start the process right away it takes two years of being disabled before you can get you Medicare. You will need it. Cost on drugs and Drs are expensive .

Not what you're looking for?

You may also like...

Can I be fixed?

My husband & I live 40 minutes from town among few neighbors so we are on our own. I have had PD 4...
Nippermcc profile image

i,v had parkinsons for 11 years now and just in the past month my symptoms have rapidly worsened

i am seizing up on a regular basis and some days can barely move also my tremor has become...
alanrob profile image

So I am new to this forum..I am 59 and was diagnosed in 2011 with PD. I am now on disability from a 30+ years as an oncology RN.

I take Sinemet 100/25 2tabs q4 hrs which makes me nauseous and sleepy. I have tried holding a dose...
Annie11 profile image

I'v been looking after my dad for the past 8 years with Parkinson's disease and dementia!! I'm one if 6 siblings and feel very alone!!

My mother is still alive and lives with him, I'm finding the care all too much, I don't talk to my...
Bernsters profile image

Leon, the moderator of my PD support group, has had Parkinson's for over 27 years. What's his secret?

To see if I could find out, I interviewed him for my blog. Turns out his "secret" is something...
gleeson profile image