Young Onset Parkinson’s Disease

[Phil Brown]

Hi Ally  My symptoms began when I was 44 and I finally received my PD diagnosis at 46 after many doctor visits.  I am now 53, still working full time (albeit from home due to COVID).  I haven’t missed a day of work (except for when I have to see my doctor).  My wife and I have been married now 32 years and she is very supportive.  Working from home for over three years now has probably been the greatest challenge.  People I used to work with have gone back to the office but due to what I do I am not able to as yet. So I don’t see them at all, and only see other work colleagues by video-link.  Also having to work from home limits your opportunity to get out.  We do like to go walking together on weekends when the weather is good and I also enjoy cycling.  I am also still driving which is good.

[Ally]

Hi Phil, thank you for replying. I have also worked from home 100% since the pandemic began and I have noticed the same challenges you’ve described. You simply don’t socialize as much or even move your body as often when you work from home, unless you very intentionally make both a habit.

Is there any chance that you may return to the office at some point? If so, do you think you’ll be in the office full-time or work a hybrid model? Does your team do anything to get together socially? My team tries to have quarterly team dinners and a BBQ every summer, which I have found helpful for maintaining good relationships with folks beyond email and Zoom calls.

[JackieHC]

Hi. I’m a 59-year-old woman. I noticed my first symptoms when I went back to work 7 weeks after our 2nd son was born; I was 32. I was finally diagnosed 3 neurologists/18 months later by being out on Sinemet. I was able to do my job as co-director of the Food and Health program at the Institute for Agriculture and Trade Policy and co-director of Health Care Without Harm: The Campaign for Environmentally Responsible Health Care until I was 40. By that time, my dyskinesia was so bad that I was practically generating my own wind power! My husband told me that sometimes he couldn’t look at me when I was talking because he was afraid he was going to get motion sickness. Neither of my kids has ever known me without PD, but I have always encouraged them to ask questions, and I spoke to their classes at school. A couple of tips on talking to kids about PD: let them know that it is not contagious, nor could your PD have been caused by anything that they did. Also, let them know that you will always have PD (based on the current state of the science). Kids tend to assume that PD is like chicken pox or a cold, illnesses that are short-lived.

[Ally]

Hi Jackie, thanks for sharing your experience. I really like your sense of humour! What kind of response did you get from your children and their classmates when you spoke to them about PD? Do you still do public speaking and education work?

[Joanne]

I have a son with Early Onset PD.  He was diagnosed at 42.  Actually, today is his birthday.  He is 49.  He has a wife & 5 children.  Nearly 2 years ago his wife announced she wanted a divorce because she “wanted to be happy.”  Since then, we have found out she’s been dating about 2 years.  We had to take our savings and buy him a house near her & the children, as she was making his life miserable.  Buying the house was a BIG mistake.  The house is split level and I get very concerned about the stairs.  We purchased it because it had what he wanted, i.e., 3 bedrooms, 3 baths, etc.  He wanted the children to have what they have at their mother’s when they come to stay over.  My husband and I are here visiting for several days, as we live 3 hours away.  His house needs cleaning and bills need to be paid.   I’m wondering if there’s any benefits he may be entitled to due to his condition?  We come and help as often as we can, but we’re not getting any younger and the trip here is not good.  His divorce isn’t even final yet.  I wish we could bring him back home but he would never leave his kids.  They are his life.  Does anyone know of benefits or places where I can find out? Thank you.

[Ally]

Hi Joanne, that is such a hard situation and I’m sorry your family is going through it. I don’t have any resources that I can recommend except maybe you could try calling the local government in your son’s area to see if any social assistance programs exist for folks in his situation. In Ontario, where I live, we can call 311 for that kind of guidance. Good luck. Maybe others in the forum can chime in with a better answer!

[Matthew Ploof]

I was diagnosed when I was 48. I was diagnosed right before Thanksgiving which put a damper on my holiday season. For the past 4 years, my wife has been extremely supportive. I sometimes forget that PD can be a burden and a worry to her as well. Without her, I would be lost. She understands the daily challenges PD can bring and the rollercoaster ride that I am on. My wife and I have both realized that some things are not worth worrying about while some little things should be enjoyed and celebrated. My career remains unchanged and parenting is not too bad since my son is 16 and self-sufficient. My advice to myself is “take it one day at a time and appreciate every day”

[Mary Beth Skylis]

I’m sorry to hear about the diagnosis, Matthew. My dad was diagnosed in 2013, and I know how life-changing it can be. But it sounds like you’re managing well? What made you suspect that you might have PD?

[Ally]

Hi Matthew, thanks for sharing. I am so glad to hear you have an awesome support system around you. Your advice to take things one day at a time is solid, too. Are your wife and son accessing any resources to help them cope so they can provide the best support to you?