My girlfriend, a landscape gardener, has PD and having to work with PD is really doing a number on her, mostly because of her tremors, the rigidity on the left side of her body, her frequent every-20-minutes urination needs, and the terrible fatigue that comes of PD and working in 90-degree heat. It's brutalizing her. She's in tears a lot, is always exhausted, is suffering also from insomnia and depression, has to take naps during the day just to make it through another day. She's her own boss, and I think she ought to shut down her little one-person business and apply for SSDI, but the fact is, she can still make it to work, if only because she's stoic like that and refuses to give up, no matter the cost to her health or her sanity.

She's also having a terrible time running her business, the paperwork and all, because of mental fatigue. She's become extremely forgetful and that aspect of her business is in shambles.

So, in terms of SSDI, who or what determines when you can no longer work?

The other issue is, she has minimized her problems when she's gone to see her doctors, again because she's stoic but also because she's still trying to deny them. Recently, though, she's beginning to see that her problems are getting worse ....

Me, I want her to stop work now or at the end of the summer and spend the next six months going to her doctors and telling them the unvarnished truth about what she's experiencing, so that those experiences will be reflected in her records, when she goes to apply for SSDI.

Is this the right way to go about things? Or does one have to be told by a doctor, you can no longer work?

She's going to her GP tomorrow and I"m trying to ready her for the visit.

thanks!

I am gonna be honest ... I don't have experience with (semi-)advanced PD. But the people from the PD organization in which I will be working for, told me that they knew a man that had PD since he was 8 years old. He is now 33 years old. He received the duodopa pump. This pump allows him to do his normal job. Maybe this could also work out for her ?

http://neurotalk.psychcentral.com/forum28.html

You can also search the forum for threads off topic, although you probably won't need to.

The short answer is that most of us go through that phase of struggling with our pride. She has to get over it and the sooner the better. Knocking herself out in this heat will advance the PD. And she needs to level with the docs on this, too.

Thanks, Rev. Maybe I'll repost this over there. I went through several pages and couldn't find anything that'll help her/me figure out what to do for her.

She definitely needs to give unvarnished truth to her doctors. She also needs extra opinions, at least at first. (My doctor was denying I had PD over a year before diagnosis at a university.)

Also, as one who has a business degree and has run his own business, I can attest to the need for keeping up with (at least a minimum of) paperwork. She does not appear to be helping herself.

Many symptoms of PD, motor and non-motor such as depression, fatigue, and frequent urination can be treated effectively. PD itself may be incurable, but life can be much better when properly managed.

The whole process is to start by filing a SSD claim to the local SSA office in paper forms (or online) with the specialist's clinic note for the diagnosis of PD attached (important!). In many states, SSA sends the claim to the State Labor Dept for an evaluation and they may ask you to fill some questions and appoint a doctor for an exam. A decision will be made in a couple weeks after the exam. If you are turned down, then you may pursue with a federal court. Good luck!

I hope she has insurance, because once she sees a doctor and the word Parkinsons is appears in her file, it is next to impossible to find any company that will issue her any kind of insurance. Even if they don't require a physical exam, most will require you to answer at least 3 questions, and one of those concerns brain disease.

Hi, my name is Jim Scheuerman, I have had PD for 15 yrs now. There is so much to say about collecting SSDI, no two cases are the same and hers will strongly depend on the "paper trail" that has accumulated. I would gladly talk to you or her personally and share with you my experience.. I am not looking for anything in return, just want to help a fellow PDer who is clearly fighting against the tide. I applied for myself and was approved 3 mos later, I also applied for my wife as well and she was approved within 6 months. I say this to share with you that a little knowledge will save you a whole lot of frustration. You are wise to build up the track record with a supportive doctor, don't sugar coat it, they're not the ones suffering, she is and she has benefits that she may be entitled to as opposed to a handout. She has earned it! Goodluck. I have sent a private message with my phone number.

Thanks, all, very, very much. Jim, I will call you as soon as I'm able; I'm going away on business right now, so it probably won't be until early next week.

Meanwhile, I composed a letter for my girlfriend, putting the words in her mouth, so to speak, to take to her Dr today. She toned in down a good bit, but here it is. Is this the kind of thing she/we should be doing? My gf is *very* resistant to all of this, btw. Sigh

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Dear Dr. ABC:

I think it's time to document how my case of Parkinson's Disease has affected my ability to work as a landscape gardener and, because I am so forgetful now, I think it best to do it in writing (with my boyfriend's typing assistance). Could you please go over this with me and put any comments you have in the margins and add this to my record?

In short, I am having an increasingly difficult time doing my job. I have constant tremors in my left arm and significant rigidity and stiffness in both my left arm and my left leg. Because of the rigidity and loss of muscle strength, I can no longer use certain tools of the trade (shovels, etc), nor can I sometimes do what is required of a professional gardener, in terms of hauling, and lifting, and tugging.

To the extent that I do those things, I'm constantly exhausted. I sometimes have to take naps during the day. And the heat I work in only makes it worse.

So far, my neurologist has been unable to find any medication that works.

Another major problem: I have to urinate approximately every 20 minutes. Sometimes I make it to a bathroom in time, sometimes I don't. And though I haven't fallen yet, I am starting to trip on my toes and stumble more.

Then there are the issues associated with running my business (I am a sole proprietor). I am sometimes forgetting to place orders, call clients, show up at appointments, or even to bill clients for services rendered. I'm finding it impossible to get and stay organized and to stay on task, especially with paperwork (billing, paying taxes, dealing with my accountant). I get confused easily. I sometimes make mistakes with my addition. Due to the rigidity, I can only type with one hand. Basically, because of the PD, along with my ADHD, I sometimes feel like my business is in a constant state of crisis.

As a result of everything, I'm depressed and anxious. At the end of a day, I'm exhausted, but the only way I can fall asleep is with Ambien and Trazidone. Then, because of the PD, I wake up just as tired as when I went to sleep, and the cycle just goes on from there.

I want to work, I love my job, and I plan to continue working. But at some point, doing the job will probably become too much, and I will have to start thinking about applying for SSDI. I also need to think about whether the job is, in fact, making my PD worse, mainly because of the stress, and this worries me a lot.

If you have any thoughts or suggestions, I would welcome them.

Most sincerely,

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Your question of who determines when you can't work any longer is a valid concern. As it seems to me she is not running a business, she is running herself into the ground. There seems to me from reading your description of her day more than enough information to meet the requirements for SSDI. It largely depends on the "paper trail" and having supportive doctors helps a whole lot. Please call me at your leisure.