[RD] Ask me about Young-Onset Parkinson's Disease.

[aimeeandbeatles]

I think a lot of you now know that I have a diagnosis of Young-Onset Parkinson's Disease. I received the actual formal diagnosis just over a year ago (2018), although there had been some symptoms as early as 2012-2013.

I'm not really scientifically trained or anything, just a patient who tries to read everything she can about it (scientific journals are a bit over my level, though).

I thought starting a thread about this would be interesting. So...go ahead and ask some questions.

 

[Synobun]

Before you lost your GP, how helpful were they in enacting a treatment plan based on the neurologist's suggestions?

Does the neurologist have you on any treatment plans?

Have you noticed things that didn't make sense before start to make sense now that you know the cause?

 

[aimeeandbeatles]

Before you lost your GP, how helpful were they in enacting a treatment plan based on the neurologist's suggestions?

Yes, my GP was very helpful. She pushed to get me into the neurologist earlier (the waiting list was something like a year when she first referred me) and also helped me figure out how to time my medication so I got the best benefit from it.

Does the neurologist have you on any treatment plans?

The neurologist currently has me on levodopa-carbidopa (Simenet). I also received a referral for some physiotherapy but am still on the waiting list for that.

Have you noticed things that didn't make sense before start to make sense now that you know the cause?

Several things, actually. Starting a few years back I noticed that my foot would sometimes twist to one side and the toes would cramp into a curled position when I was walking. I thought it was just some sort of weird cramp, but it turned out to be a kind of dystonia, which is pretty common for young-onset in particular. Bowel issues were another big issue.

 

[BenitoChavez]

How young do you have to be to be Young-Onset? 60s? 50s? 40s?

Is there anything that distinguishes Young-Onset from... I don't know the correct word... standard Parkinson's other than the patients age?

Are there lifestyle choices one can make to prevent it? To lessen the symptoms once you have it?

 

[aimeeandbeatles]

How young do you have to be to be Young-Onset? 60s? 50s? 40s?

I'm not entirely sure. I've heard both "under forty" and "under fifty." The average age that Parkinson's is diagnosed is around sixty, though.

Is there anything that distinguishes Young-Onset from... I don't know the correct word... standard Parkinson's other than the patients age?

Young-onset is diagnosed solely on age, although there's a few differences between it and standard Parkinson's. It's a bit slower to develop, more likely to have dystonia, and younger patients tend to be a bit more sensitive to both the benefits and side effects of antiparkinson drugs.

Are there lifestyle choices one can make to prevent it? To lessen the symptoms once you have it?

Mostly the 'healthy lifestyle' thing that you hear for nearly every other disease (rather ironically, smoking can reduce the risk of it. It was thought to be the nicotine but it might not be). The main big thing I've been told is exercising slows the progress of it. Which is hard to do some days but I try to walk a bit each day even if it's just up and down the apartment hall.

 

[Synobun]

Do different kinds of exercise impact the slowing rate differently? For example, is jogging best? Yoga? Swimming? High-intensity sports? Low-intensity endurance? Long sessions or short?

 

[aimeeandbeatles]

o different kinds of exercise impact the slowing rate differently? For example, is jogging best? Yoga? Swimming? High-intensity sports? Low-intensity endurance? Long sessions or short?

I'm not entirely sure on this. The Parkinson's Foundation says that "all types of exercise are beneficial," though they suggest flexibility, aerobic, and "resistance training" (that makes me think of guerrilla warfare for some reason).

 

[Synobun]

Does your neurologist recommend the intake of any nootropics?

All the stuff I see about it is essentially pseudo-science, but I guess I'm curious if there are any "diamonds in the rough" within that industry for the condition. I saw an old study about deprenyl in conjunction with levodopa but that was over twenty years ago.

 

[aimeeandbeatles]

Does your neurologist recommend the intake of any nootropics?

I don't remember him saying anything about them, though I only saw him twice.

 

[Synobun]

How has this diagnosis impacted your mental health?

Are there certain things that the diagnosis can prevent you from doing legally? Are you allowed to get a driver's license, for example? Can you go skydiving? Are you allowed to go boating? So on and so forth.

What does the future look like for you health-wise? Are there certain milestones, positive or negative, that you can expect on a specific timeline?

 

[aimeeandbeatles]

How has this diagnosis impacted your mental health?

YOPD is slow to develop, and I've been able to trace back some of the earliest symptoms to around 2013 or thereabouts. In the years since, my mental health was on the decline and I was put on different medications to try to control my mood swings (one of them was a dopamine blocker so you can imagine how well that went). Once I got my diagnosis and onto the l-dopa, though, my mental health has actually improved to some extent. I don't know if its from actually understanding what's wrong with me or the effects of the dopamine itself.

Are there certain things that the diagnosis can prevent you from doing legally? Are you allowed to get a driver's license, for example? Can you go skydiving? Are you allowed to go boating? So on and so forth.

Driving might be an issue. The driver's booklet says that neurological disorders may require me to get a doctor's notice.

What does the future look like for you health-wise? Are there certain milestones, positive or negative, that you can expect on a specific timeline?

After 5-10 years a lot of patients on l-dopa develop levodopa-induced dyskinesia. Other than that, no specific timelines, but it's a progressive disease.

 

[Snerk]

What's your prognosis? Sorry if that's a little blunt.

 

[aimeeandbeatles]

What's your prognosis? Sorry if that's a little blunt.

It's a progressive disease. There's no cure, although treatments can slow it down. I'll likely end up with dementia, but hopefully not for a few decades.

 

[Synobun]

Is the rate of progression different for those with YOPD compared to patients who get it "at the normal time"? You said it develops slower, but how about reactions to drugs and therapies?

Do people with YOPD reach total disability (i.e. requiring a dedicated carer) at the same time as people with normal onset, or earlier? Is this a guarantee or is it possible you'll be able to care for yourself the entire time?

 

[aimeeandbeatles]

Is the rate of progression different for those with YOPD compared to patients who get it "at the normal time"? You said it develops slower, but how about reactions to drugs and therapies?

YOPD are a bit more sensitive to dopaminergic medication. Both the benefits and the side effects (including the on-off effect). Younger patients also have better success rates with deep-brain stimulation.

Do people with YOPD reach total disability (i.e. requiring a dedicated carer) at the same time as people with normal onset, or earlier? Is this a guarantee or is it possible you'll be able to care for yourself the entire time?

I'm not sure on this one. I hope I don't have to be dependent on a full-time carer for my entire life.

 

[Synobun]

Younger patients also have better success rates with deep-brain stimulation.

Is this something you can only get after the l-dopa side effects start? Or can you start doing this now and reap the benefits sooner?

 

[aimeeandbeatles]

It's brain surgery and carries all the risks inherit with that. It's rarely used if medication itself can control the condition.

 

[Synobun]

It's brain surgery and carries all the risks inherit with that. It's rarely used if medication itself can control the condition.

I wonder how they compare them. If medication stops being as effective and comes with a guarantee of eventual significant problems, then it seems reasonable that a surgical operation for a "pacemaker" could be more efficient and with better efficacy for the long term, unless there are consequences and long-term risks of the DBS. I see that it's associated with reduced medication intake and better motor control. But I also see it's particularly risky for neurodivergent people, which I guess you'd fall under.

Have there been any promising studies or therapies lately that may be of use to you in the distant future once they go through proper trials and approval?

 

[aimeeandbeatles]

Have there been any promising studies or therapies lately that may be of use to you in the distant future once they go through proper trials and approval?

Not sure if it's of use to me, but there's been some clinical trials of gene therapy. Unfortunately I don't know if there's any genetic component to mine.

 

[Synobun]

Is there an affordable way for you to find out in Canada?

(Approval for genetic testing for myself was a complete wash, so I need to go private/to the US for it if I ever hope to get it done. It's my understanding that genetic testing in general is difficult to get approval for in Canada unless there's a "smoking gun," which I imagine a diagnosis of YOPD would be.)