How do you know when to stop fighting the good fight and seek disability?

I was diagnosed Aug. of 2009 at age 48. I was barely able to get through a day before treatment. Since then I have continued to work at a very taxing, very busy job.

To look at me you would never know I have PD. No tremors , no more shuffling gait, only a slight mask to my facial expression.

However, pain daily, stiffness in the morning, difficult to get moving. As the day goes on I am able to move a little better. I don't process things very quickly, don't accomplish things very quickly At the end of the day back to being barely able to move.

Pulling over on the drive home to prevent falling asleep. Rest my eyes for anywhere from 10 minutes to as much as an hour before being able to continue my commute.

At home...well , can't function . Body and mind exhausted. My husband and my home taking a back seat. Things are a mess ! All my efforts are at work and all energies spent there.. Finding myself very distressed.

My employer doesn't see me as being ready for disability. They don't understand..at all. I live moment to moment...getting by as best I can. Fighting nausea and dizziness from my meds about half of the time.

It is difficult to know what to do ...am I eligible for disability and would it be reasonable to expect it?

Any thoughts?? Need Advice, something's gotta give!

15 Replies

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  • It would be helpful to know which country you live in, but have you discussed it with your doctor and neurologist?

  • If you are in the UK type Parkinsons UK into GOogle . This will take you to the Parkinsons Disease UK main site. On there you should find the contact details for your nearest Information support worker or, if you're struggling you can ring the PD main office and speak to very hepful advisors. They will give you excellent advice re claiming disability living allowance (whicih at the moment isn't means tested) and how to get your employers to take your situation as seriously as it deserves. To me you sound utterly exhausted and you should go to your GP asap and be signed off work for at least a month while you recover some energy, take stock of your medications with a neurologists and decide how you need to adapt your life.. YOur employers should be sending you for an occuptaional health assessment which will tell them what adaptations they should make to enable you to carry on working without detriment to your already impaired health. This can include reducing or changing hours and making things physically as easy for you as possible (eg as a lecturer all my lectures were changed to one classroom near the staffroom) These adaptations by your employer to make life easier for you are not optional - it is a legal requirement under the Disability Discrimination Act. I am shocked to hear how unhelpful your employers are. It is bad enough that we are dealt this rubbish hand - we deserve and are entitled to help cope with it. I know how hard it is to accept the 'disability' label but there are no brownie points for beating ourselves up and being martyrs! And while you're at it you could ask your local PD support worker to go and see your employers and explain to them exactly what it is your are going through. You can bet your life that if they had to battle what you do every day your employers would not be struggling likeyou are! Hang in there.

  • Your supportive advice has led me to see things a lttle differently, I needed to do that.

    You've hit the nail on the head, its that label.!! I don't want to admit it, I don't want to be it...disabled! I want to believe that I can do it.Obviously I haven't convinced myself of that. My employer isn't going to make an assessment and respond appropriately. It 's going tot be a decision I must make on my own. and in my own best interest .

    Thankyou, you've helped me a great deal!.

  • Glad to be of some help. Believe me I know how hard it is to accept the 'disabled' thing. I don't think I've ever described myself using THAT word! Good luck - and look after yourself!

  • You sound like you really need help to make some decisions that will affect your life. where do you live, are you a member of any PD society, etc. In UK all this advise can be accessed by them. Have you accesss to a specialist PD nurse another good link with lots of information. Good luck I have found over pas 17yrs of living with PD (my hubby the sufferer) there are ups and downs, but there are ups really. Good luck, sorry maybe not as helpful as I would wish.

  • Most certainly your input is helpful. You are right about the ups and downs.

    I live in the US but there msut be similar services here. I am going to approach my doctors,

    Thankyou so much for your thoughts,

  • I was diagnosed in 2010 at age 49. I do not have a major tremor, but muscle rigidity and foot issues. I agree it is sometimes hard for people who do not know me to understand, but getting through each day is exhausting. I live in Virginia in the US. I applied for disability in September 2011 and it was denied because the board felt my symptons did not prevent me from doing substancial (sp) work. I appealed. I want them to call me in for an interview. They need to see what my medical records don't show. I tend to be an upbeat person and apparently that translates to my old neurologist as I am fit as a fiddle. I heard from several people that it is usually not granted on the first try. I did a self appeal this time. If it denied again, my husband wants to hire a lawyer. Good luck to you.

  • I feel for you. I have done a little research on applying fo disability. You cannot be currently employed to be eligible. I get that however I have heard also that most times you are denied on your first filing.

    The problem is how do you get by without an income while they are deciding whethter or not they want to give you the financial support you need.

    It sounds as if the UK has a much better system.

  • Diagnosed at 51 - stopped working at 53. My employers really didn't give me a choice - but once I was out I realized how toxic something I had once loved had actually become for my health. My income was cut by 2/3 but there really was no other choice.

  • If you live in the US, I recommend you talk to a lawyer who specializes in Social Security Disability. Social Security personnel seem to routinely reject PD patients at least 1 or 2 times, so representation helps speed the process and get it done correctly. If you earn much over 12k per year, you are not eligible, so continuing to work keeps you ineligible. Good luck.

  • Hello MCCSHE: Shakedaddy here from California. I too was diagnosed at 48, I am 59 now. I have pain always (some days less, some days more) I worked up until2006 when I retired full disability from my work . The catch was to get top dollar in my pension I had to be on complete disability on Social Security. I appliedonce and was denied. Then i got all my Drs. statements and applied again. this time I was approved.....full pension w/benefits and full S.S.too. I have VERY little tremor but I have issues w/balance, wallking, eating, speaking, and stamina. Yes people dont understand, like when I park in a handicapped spot. because I look mostly "normal" I get glares and some comments as I exit my car. I now make more $ now than when I was working because of the pd. I couldnt work now if i had to ....i think i would die, really . If ur in the U.S. apply and if denied, appeal. Lots of luck and have a great care provider nesr by, they are absolutely invaluable! Any thing i can do to help, just ask. oh, and if u are in the U.S. you can usually take state disability while waiting for S.S. 's reply. Good luck n "shake a leg.

  • Diagnosed at 40 - stopped work September last year when i was "given" ill health retirement by my public sector employer. I resisted it at first but now i'm "retired" i wonder why i resisted. My quality of life has improved immeasurably - allthough we also have had to deal with a vastly decreased income.The Parkinsons UK rep has been brilliant in finding what benefits i am entitled to and helping me claim them . Looking back , and looking forward , it's probably the wisest decision i ever made (although i was forced to initially)

  • almost forgot - i'm only 46 now !!

  • It sure sounds like my story. I wasn't ready to admit it, but I read a post on this site that had 10 things you should do when you are DX and the ones I remember are "Stop driving" and "Stop working". and the words right after them were = "you will probably wait too long to do this."

    Thankfully the administration and colleagues at my school could see that I was failing, gave me an out and sent me home. And almost right away I saw what they were talking about. I hated leaving my job, but I actually hate not being physically able to do my job.

    It's a sad, frustrating situation - and the new job becomes finding things you can do without putting anyone in a difficult place - or, worse, danger. There has to be some light in all of this.

  • diagnoised in march at 51 say i have it longer tho still tryin 2 wk but finding it hard i live in ireland self employed does any 1 know am i entittled 2 disability

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