How to deal with the knowledge that I will probably develop Parkinsons?
June 5, 2016 11:03 AM   Subscribe

I was recently diagnosed with REM sleep disorder. During the appointment, my doctor informed me that 50-70% of patients with REM sleep disorder go on to develop Parkinsons. How do I deal with this information?

Hi. This was me. I finally got in to see a sleep specialist (after a three month wait) and they determined that I most likely have REM sleep disorder. They are sending me for a sleep study to confirm, but they feel confident in the diagnosis, based on my symptoms. The sleep study is mainly to rule out other causes of they symptoms (such as apnea).

During our discussion, my doctor mentioned that approximately 50-70% of REM sleep disorder patients go on to develop Parkinson's later in life. She explained that the mechanism isn't really understood at this point, and besides, there aren't preventive measures that can be taken. She recommended getting a yearly neurological exam to monitor for development of symptoms, but othewise just keeping it in mind.

I'm now sort of freaking out. I try not to think about it, because I know there is literally nothing I can do, but I'm scared. To add fuel to the fire, I recently found out that my aunt had experienced similar sleep disturbances throughout her life. She was diagnosed with Parkinson's last year. She has some sort of rapidly progressing form (I don't know the exact diagnosis). My doctor said that Parkison's does not appear to be hereditary, but the fact that my aunt had a sleep disorder and developed PD is adding to my fears.

So, I guess my question is, how do you cope with the knowledge that you're at a high risk of developing an incurable disease? I'm young now (27) so I know a lot can change in terms of treatments and even cures over such a long period. I also know that I could get hit by a car tomorrow. But I tend to be anxious generally, so this knowledge is consuming my thoughts lately.
posted by bluloo to Health & Fitness (12 answers total) 5 users marked this as a favorite
When I get anxious about whatever particular issue, I find that it helps to do something very practical. I can't change [issue] but I can break it down into more manageable chunks and deal with those pieces.

Start with the worst case scenario: you develop Parkinson's. That's a huge issue and of course you are freaking out being a human being and all. You can't change the core issue but you can plan ways to work around it. Break it down into chunks. Start with the basics. Food, clothing, shelter. What kind of work will you be able to do and for how long? (I have a bum knee and a bad back so I need to make sure that I'm in a job that doesn't entail standing or is too physically demanding). What kind of housing? (I love tall, Portland-style three-story houses but I need to live in a ranch style). Think about healthcare. Plan for the long-term to be in jobs that offer good healthcare. Plan ahead for long-term care insurance.

Plan. Plan. Plan. You may not be able to prevent developing Parkinson's but you can be ready for it. And then if you never develop it, you still have all these great safety nets in place.

I'm sorry you are dealing with this. Good luck.
posted by Beti at 11:35 AM on June 5, 2016 [6 favorites]

You say yes to any offer/invitation/opportunity that is morally and legally sound, even if it sounds scary. You do nice things for the people around you. You stay active in your church and your community. You live a good life.
posted by myselfasme at 11:38 AM on June 5, 2016 [12 favorites]

I was diagnosed ten years ago, at 30, with a terrible progressive illness. A couple of months ago, I was informed that the illness had become full blown and it's something I'll be dealing with for the rest of my life.

I can honestly say I wasted a lot of time during those 10 years worrying about what would happen. Now that I'm facing the worst case scenario, I feel weirdly at ease with it. In many ways, dealing with the actuality of it is easier than the time I spent trying to wrangle down my worrying about the What If. I can't stress this enough: Don't waste your time worrying.

So: Use this time wisely. Take trips, work, spend time with friends and family, make the best and most of your life while you are healthy. Try to build up a nest egg for an emergency fund but don't kill yourself by working too much. Appreciate each day. And know that if it does come to the worst-case scenario, you will deal with it with all the strength you've built up from living life as fully as you can.
posted by mochapickle at 11:52 AM on June 5, 2016 [44 favorites]

My sincerest condolences for the heavy news.

I would strongly recommend talking to a counsellor. Seek out recommendations for someone experienced in this area - you need to feel like your counsellor truly understands what you're going through and faced with. They will help you process your feelings, find ways for you to cope and strategize going forward.

There may be support groups in your area for Parkinsons sufferers and their family members. If going to the groups are too much for you, perhaps online forums will help - you can read others' stories at your own pace. I have found great comfort in reading others' stories and knowing others have experienced what I'm going through, and worse. Makes me feel like I'm not alone and isolated.

And I would talk to your aunt and her family, get to understand how things are playing out for them, what difficulties they're encountering in day-to-day life and at large. It helps having someone to ask personally.

Hopefully you have a long time to go before any potential onset, and make the most of the time you do have as an able-bodied person. Hopefully it doesn't happen at all, in which case you've still lived a full life with no regrets. Being prepared though, knowing ahead of time how things may progress and a plan to deal with them, will make the situation easier to deal with in the long run, if it happens.
posted by lizbunny at 12:31 PM on June 5, 2016

You wouldn't have asked if you didn't want honest answers. With your implied consent being here to do that - I am going to be brutally honest.

You are running way too far ahead of today. Reading your post, I see too many "ifs," to allow yourself to become so worried. You mentioned your generalized anxiety at the end of the post and I honestly think that is what is driving your worry.

IF the diagnosis is correct, IF the sleep disorder is of the type that can truly be a precursor to Parkinson's, IF you actually go on to become one of the Park statistics after iRDB, IF...There are way too many ifs and not enough calm and reasoned consideration.

The statistics vary wildly as to how many with *any* kind of sleep disorder go on to develop PD. The percentage your doctor gave you (50-70%) is on the high end. I usually see percentages in the 30-40% range after long-term follow-up studies. Make no mistake, there is a connection - in some people. But, honestly, your worst fears are far from a certainty, far too distant to be receiving condolences on any diagnosis that may impact your life in the future.

I'm not minimizing the possibilities, only trying to frame them in a proper perspective for TODAY. It sounds like fear of mortality is a problem and one that can cause many years of worry for no reason at all. Why? Because you wrote, "So, I guess my question is, how do you cope with the knowledge that you're at a high risk of developing an incurable disease?" Actually, bluloo, we all have an incurable, terminal condition. All of us. Whether we leave this world tonight, next year, in ten years, 80 years, there is no way of knowing, and nothing will change that.

Something that could happen if this happens and then you fall in this you see my point? I think you need to live today, tomorrow, and all your days as if it could your your last, while at the same time with the planning and excitement that it's just beginning. Nothing in your question, at age 27, is anywhere near certain enough to be giving this a worry on a beautiful Sunday afternoon - and all Sundays are beautiful until there are no more. I hope you deal with the anxiety in your life generally, as I see that as a far greater danger to your happiness than any "ifs" in your life today (which we all have but don't know to even worry). That's one reason I caution people away from checking for DNA markers that make us possibly susceptible to this or that. Worry and anxiety kill. Make dealing with that a priority and face life one day at a time. Embrace life. However many days we all have until we leave, it's way too few to worry about an inevitability we can do nothing about.

Good luck to you, bluloo.
All my best...
posted by Gerard Sorme at 1:32 PM on June 5, 2016 [21 favorites]

If you're the sort of person who does better taking an active stance rather than trying to convince yourself there's nothing you can do now-- do something that will be useful no matter the future you end up with. For example, start saving for retirement, perhaps with an earlier target date. Best case: you get to retire earlier and stay healthy longer than you are currently anticipating. Or, get your files in order (life insurance esp. if you have dependents, a plan for your digital property, etc). You likely won't need it now, or really any time soon, but your next of kin will be very glad you thought of it. (Of course you'd have to update when life changes happen, but it'll be easier than starting from zero).
posted by nat at 1:53 PM on June 5, 2016 [2 favorites]

I think that focusing on the numbers you don't reference would be much more helpful in terms of dealing with medical possibilities. Those numbers are the 30-50% of people that DO NOT have Parkinson's but have the same sleep disorder.

Honestly I think your Dr did you a disservice by presenting that information that way. It was not in any way helpful or accurate.

Take a deep breath and get on with life.
posted by cairnoflore at 2:28 PM on June 5, 2016 [4 favorites]

This is something my brother and I (late 20s/early 30s) have discussed at length. Both our maternal grandparents had Parkinson's - they were something of a medical marvel, being one of the very few husband/wife cases known, and there's some theory it was caused by environmental factors (specifically, contamination in their local water supply for many years that they didn't take seriously enough to only drink bottled water) - and even as we assume it was environmental, the fact remains that now that we know what it looks like, we also think my grandmother's father had undiagnosed Parkinson's in his later years, and that my brother and I are both, according to 23andMe, carriers for a gene associated with development of Parkinson's.

None of this is a death sentence - Parkinson's itself isn't, tbh - and nothing 100% guarantees we will develop it or, as you mentioned, that we won't be hit by a bus tomorrow and thus not have to worry about it. But it is a real possibility that scares us, since we saw the entire progression in my grandparents, so we've talked about how we handle this.

I think my brother has some level of denial about it. Because he can't do anything, he chooses to ignore it. He is very dedicated to his regular workout routines and eating well, believing strongly that no matter what happens later in life, he'll be better off being as strong and healthy as possible.

For me, in addition to being lazy and also loving my food, I recognize that my grandparents were both extremely active people throughout their lives - they both coached athletic teams, taught fitness and sports at the K-12 and college levels, played tennis every weekend until they literally couldn't, etc. And in truth I do think this probably mitigated some of their symptoms, or at least delayed the worst of them. So physical fitness and health is probably a worthy goal to pursue while you have the time, money, energy, and ability.

But the other thing for me is that as far as I'm concerned, knowledge is power. Even if "the worst" never comes to pass, I can prepare for it to. This means discussing with my spouse and, when they're old enough, my children, what my expectations are, what my wishes are, and how we can work as a team to manage something that, unmanaged, can be a burden on family members that I would feel guilty about. Perhaps that means investing early in a place to live in retirement that manages the progression of care; choosing living arrangements that accommodate someone who can't manage stairs; ensuring we live near good healthcare options, and that we have the coverage (and/or savings) to pay for it. Doing the things that are genuinely important to me - travel, spending active time with family, checking off those bucket list items, etc - when I am able to do them, rather than waiting until it's too late.

It's also worth finding out more about actual people who have the disease. If your entire experience with it is Michael J. Fox and finding out your aunt has been diagnosed with a fast-progression form of it, your view is a bit skewed. My grandmother was the first to be diagnosed, and she and my grandfather kept it from the rest of the family for several years until she had an unrelated health issue while visiting us and, while getting her into the ambulance, my mother overheard my grandfather telling them what medication she was on. We didn't notice anything for quite a while, but when we did, it was a tremor in her hands, some clenching/contracting in a hand that made it hard for her to hold pens or utensils, and overall weakness and instability. She had fairly severe scoliosis and osteoporosis that exacerbated some of her physical weakness, but she never experienced any mental decline, and she was pretty well managed on medication; while she of course became weaker and slowed down as she aged (she lived with the disease for...20 years, maybe?), the Parkinson's-specific symptoms sort of plateaued. What killed her was sudden congestive heart failure following a bout of (we think) salmonella poisoning from contaminated ice cream. Until that last month of her life when she required significant care, she remained in my grandparents' assisted living apartment on her own, happily socializing and cooking for herself.

My grandfather was diagnosed years after my grandmother, but his disease progressed more rapidly. He had the very characteristic shuffle and of the two, had the most mobility issues. He also experienced more cognitive decline, but it's entirely possible that was totally unrelated. He was extremely frustrated at his physical inability to do the things he loved - drive a car for hours on a road trip, play golf - and I think those are two places where improvements in technology will really change quality of life for people, but that lack of independence and ability is a real thing. He did have to be moved to the skilled care part of their retirement community about a year before he died, because his mobility issues had gotten to the point where he needed help getting in and out of bed, in and out of the bathroom, etc, and my grandmother was too weak to help (and risked hurting herself when she did try to help). He lived with the disease for somewhere between 10 and 15 years. He passed away six months after my grandmother, just sort of fading away.

But they both died in their 80s. While the last few years of their lives were physically limited, they were both (at least mostly) cognitively "there" for their entire lives, could enjoy the visits of their children and grandchildren, got to a point when they realized it was their last chance for their favorite vacation together and had the means to take it, had retirement savings to buy into a quality retirement community with good progression of care, and well-documented wishes for medical and end-of-life care that had been communicated to their children. It was difficult on my mother, but not nearly as difficult as the severe Alzheimers my great-grandmother had was on my grandmother.

To be honest, having seen both, I'd take Parkinson's over Alzheimer's any day.

So the takeaways from this are:
- You can still lead a pretty long, fulfilled life, even if a couple of decades of it are under the shadow of PD
- The disease progresses differently for everyone, and response to medication differs for everyone
- Preparation can go a long way to mitigating the difficulties introduced by PD for both you and your family
- There is nothing you can do now that is Parkinson's specific that will help or hurt one way or the other. The best you can do is make yourself as fit and healthy as possible and live your life in a way that means you have the resources to deal with a medical event such as this. But that applies whether you have a family history of Parkinson's, or Alzheimer's, or cancer, or heart disease, or whether you eat the wrong carton of peanut butter ice cream at the wrong time. Something has to kill you eventually. Make it easy on yourself and your family no matter what that thing is.

And you're right, medical science will likely come a long way between now and your diagnosis, if it ever happens. Who knows what treatments will be available, what early identification will be possible, and what mobility aids or therapies will be available.

Give this some time to sink in and for you to contemplate what it means for you. It's fair to feel stress about this if it's something you'd never considered as a possibility before - and I think most 20-somethings don't, generally, because you are immortal at that stage. But if after a few weeks this is still keeping you up at night - even if your sleep disorder isn't - then it's worth seeing a therapist and talking through this.
posted by olinerd at 2:44 PM on June 5, 2016 [7 favorites]

Sergey Brin is coping with similar odds. Here's hoping the money he's throwing at research will bear fruit before you need it! In the meantime it sounds like taking up exercise and possibly coffee can't hurt.
posted by town of cats at 3:03 PM on June 5, 2016 [1 favorite]

Also, yes, a thousand times this: To be honest, having seen both, I'd take Parkinson's over Alzheimer's any day.
posted by town of cats at 3:08 PM on June 5, 2016 [1 favorite]

My thinking on this situation would be to make sure you always have health insurance, make sure you live in wheelchair-accessible first-floor/no 2nd floor housing, and take any fun life trips sooner rather than later.
posted by jenfullmoon at 5:35 AM on June 6, 2016

I'm so sorry you're going through this. My father-in-law suffered from REM sleep behavior disorder (RBD) that went untreated since childhood and last year he was diagnosed with a neurodegenerative disease that is often confused with Parkinson's, called Lewy Body Dementia (LBD). I find that the more I can wrap my head around understanding how and why things work, the more in control I feel, so I've been doing a lot of reading lately on the link between RBD and neurodegenerative disorders. I am in no way a medical professional, but I'd like to share with you what I've managed to discover, I hope it helps you too.

When we use our brains for everyday activity, our brains produce a certain normal amount of waste product in the form of proteins. While we sleep, our brains shut down, giving our bodies a chance to clear the proteins out via our cerebrospinal fluid, kind of like restaurant employees cleaning the kitchen at the end of the night to get ready for the next day. REM sleep disorder interrupts that process, preventing the brain from properly shutting down during sleep and clearing the proteins. A few bad nights of sleep here and there isn't a problem, but extend that over decades and the brain slowly builds up layer upon layer of proteins that aren't getting properly removed. It's ok to not clean the kitchen one night here or there, but imagine a kitchen that didn't get cleaned properly for decades straight! This build up of proteins in the brain results in neurodegenerative disease.

Which neurodegenerative disease a person develops depends on which part of the brain the proteins form in. Parkinson's is mostly in the motor center, while Alzheimer's is in the memory center. Lewy Body Dementia affects the entire brain, which is why it is so hard to diagnose. Sometimes the symptoms are first seen in impaired motor function and are mistakenly diagnosed as Parkinson's, sometimes they appear as decreased cognitive function, sometimes as visual or sensory hallucinations. Regardless of where the symptoms initially appear, LBD ultimately progresses to affect all areas of the brain. Now there are lots of other reasons why people may develop these protein buildups but poor protein clearance definitely seems to be a contributing factor, especially to LBD and possibly Parkinson's as well.

So here is the GOOD NEWS! You are young. You've been diagnosed. You're getting treatment for your sleep issues. Once you are able to establish good, regular sleep patterns, your protein clearance should improve. This may slow or even stop the long-term build up of proteins that ultimately results in neurodegeneration. It took more than fifty years of untreated REM sleep disorder before my father-in-law started exhibing symptoms. By catching it and treating it now, you may already be changing your future. So follow all the great advice above and prepare the best you can, then go get a good night's sleep and enjoy your life!
posted by platinum at 10:44 PM on June 6, 2016

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