How to help my girlfriend with her PD?
 

My 56-year-old girlfriend was diagnosed with PD about 2 yrs ago, with tremors in her left hand, cogwheeling, and rigidity. Pretty much she has been in denial about it ever since but it's getting to the point where the reality of it can no longer be avoided.

She is a landscape gardener and is finding it harder and harder to work and her finances are in terrible shape and she is at wit's end and she really does need to start doing something to try to manage her symptoms. But she also suffers from some pretty terrible ADD (tho not nearly as badly as her brother, who has been on full disability almost his entire life because of it ..) and has a difficult time getting started on things and then sticking with them.

So, that's where I come in and why I'm here. My first big question is, are we making things worse by doing nothing in terms of medical treatments at this early stage when she is still pretty functional? In other words, are there things we should be doing *right now* that'll help out in the future?

The doctors have pretty much said, Yup, you have PD. And then left it at that. Come back if it gets worse. No talk of medication. Leaving us to gather that, okay, there's nothing to be done for it but see what happens next. Which is how we've played it so far. But things are progressing, and not in a good way. And my gf still refuses to believe it's PD and she won't go back to the the doctor(s) that diagnoses her, though she is going to see a hand doctor in a month to see if the tremors are the result of a dog bite she got right before they started. And so on. So, I'm going to start doing what I can behind the scenes, to be able to help if and when she concludes that it's Pd after all. And lord know I hope it's not, of course, but it probably is.

Also: at what stage does one begin to think about disability payments from the state. I mentioned that to her once and she went ballistic, so if it's better to start on that sooner than later, it's something I'll be getting the ball rolling on, too.

Gawd, there is so much to think about that I don't know what to think about first.

Could someone offer me some suggestions?

Thanks!

Hi linter..
Sorry to hear your girlfriend has pd. Did she see a movement disorder specialist? If not, that might be good to do. Look around your area for pd support groups, too. If she prefers to go the non-medicated way for as long as possible, keeping active and a healthy diet is important. Good luck to you both..she's blessed to have someone who cares!

First, catch a doctor....
 

No. Wait. That's the recipe for "Doctor Soup". :D

But, seriously, I would suggest a second and maybe even a third opinion. The diagnosis may be correct, but any doctor that says "PD. Come back if it gets worse." is dangerous. So, the first step should be to find a doc that feels right to her. It doesn't necessarily have to be a neuro, BTW. A good GP is a much better choice than a bad neuro. I would also suggest that it be a woman if possible. Things are going to be hard enough without adding gender arrogance into it.

Once you are both satisfied with the dx, it is time for you to have a long talk with yourself. Are you man enough to do this? If you knew that she had ten years to live, would you stay? If you have any doubts, you had better go, because she isn't going to die from PD. It is much worse than that. She has no choice, but you can still escape. But even if you run from the burning house into the night, there is something waiting in the dark with your name on it. You can choose your burden by sharing hers. Or you can walk out the door and see what life drops onto you. Those are your only options. "None of the above" is not on the list for any of us.

If you are going to stay, then she should start planning for her future. Medication should buy her five to ten years and those must be made to count. The fact that she has a small business of her own is invaluable. She needs a plan to get as secure as she can. Maybe a partner who gradually assumes the load and pays her a monthly check. If that isn't possible, then she may be able to switch to a service approach such as landscape design that does not require employees and allows her to set her own schedule. Once she is drawing disability (SSDI) she can earn about $700/month without penalty, so that is your target.

SSDI can be a real pain to get approved and then there is a two year wait for Medicare, so you need to plan longterm. Assume that there will be a bankruptcy in there so she should start thinking in terms of asset protection. If she has anything of value, she needs to see a good attorney on this. This needs to be done within a month of dx, just to keep her from putting it off. There are a number of waiting periods to be considered. And if you are going to be her knight in shining armor, go out and get the best life insurance policy you can afford.

When she applies for SSDI, she should not be working. If the business is doing well, it might be wise for you to buy it from her on a monthly payment approach. Once SSDI is secured, she can buy it back from you if that is desirable.

gotta go.more later

Omg!
 

My God Rick - what a frightening thing for you to say - by which I mean the statement "If you have any doubts, you had better go, because she isn't going to die from PD. It is much worse than that."


I've had the pleasure of contact with you before, where you've really helped me with my husband's diagnosis, but the "it is much worse than dying" comment has made me plummet yet again to the depths of despair.

Maybe I overdid it, but....
 

...I just don't know. My intent was to shock him enough to make him step back and look at things now, while she had time to build a life with or without him, rather than folding up at a later stage when a threshold had been crossed. My sincere apologies for upsetting you. -Rick

The bright side
 

Rick is being brutally honest. We all decline at different rates and in different ways, but quite frankly, if we make it to the end stages..it isn't pretty. However, don't despair. I am summing up some promising novel treatments out there. Note that the vaccine is the first ever treatment to target the cause of degeneration...that is real progress. I would like to see us channel our sadness, despair, and anger toward the fda in cutting through the bureaucratic crap to shorten the time between laboratory, trial, and clinic to patient.

-There is a vaccine in development that may halt disease and slow it down in in more advanced PWP. IMHO, this is the closest we have to a cure. Affiris in Austria started Phase 1 trial earlier this year. U of Nebraska hope to purse vaccine treatment.

-Ceregene trials starting up again. This is for delivery of neurotrophic growth factor that had as setback due to placebo effect. They have corrected for this and how have received over $2 mill to begin phase 2 trials. Neuturin has potential to restore condition of degenerating neurons, to slow progression, alleviate symptoms, and act as neuroprotective.

Nerologix just released results of their phase 2 trial on restoring GABA levels proving that gene therapy works for neurological disorders. The restored GABA controls symptoms.

We do have some promising things happening....

Laura

Thanks for that Laura. It's given me hope for the future.

Best wishes,

Viv

Thanks for your reply Rick.

Your post shocked me, because I always read your words and I've mostly felt better after reading them. This one just knocked me for six, I'm afraid.

Please don't feel you have to hold back in future though, just on my account.

Best wishes,

Viv

One thing that Laura made me realize that I left out...
 

....and that is the all-important reason for hope. It is easy to forget that our PD generation is like no other. Twenty years ago there was no internet and the brain was considered unable to repair itself. You died alone and in the dark with no hope. Giving up was the only option.

Consider how that has changed. Instead of waiting for the release of Death, all alone and little knowing what is happening to me, I can get up each morning and fight. I know a hell of a lot about PD. I have access to the greatest library in the world. The best researchers on the planet sometimes even answer my email. And a curtain is being pulled aside. There is the smell of revolution in the air and, if no one else will lead it, then I will. After all, I'm a damn Parkie! It is what we do! :D
"Never give up! Never surrender!"

That's more like it Rick!!

Viv :)