Foreword: Apologies for the posting delays guys as I really am fascinated by steem and intend to be pretty active on it. I've just totally been swamped with trying to go pro at eBay sales. I'm going to post the content I've already created all tonight to give you all the time to go through them and engage with them. I'll make sure to hop on and respond to your comments. We're going out of town for Thanksgiving which should give me time to whip up a comprehensive update on where I'm at these days. Beyond that I'll be posting more about crypto and my day to day business more than solely Parkinson's related material. Also, might post some photography and possibly music stuff as well.
I want to start today by thanking you all for the wonderful feedback you’ve given me about yesterday’s post. I must say though that the most meaningful message I received yesterday wasn’t a compliment at all, but rather a cry for help from one of my friends.
“Over the last month I have been dealing with the sudden decline of my father’s health and his denial and depression and I have felt lost. I just couldn’t understand why he was being so difficult, but hearing some of the things you dealt with mentally opened my eyes to what he is probably dealing with. Thank you for sharing.”
We had spoken before about her father when I first mentioned my upcoming surgery consult publicly. He’s in his late 50s and had deep brain stimulation about two years ago and had been doing well with it until recently.
DBS on average tends to benefit people for about 10 or 15 years, and her father still a pretty young patient, so I’m fairly hopeful that something as simple as replacing the battery in the stimulator could give them symptom relief again.
While such a drastic change in symptoms over such a short period is something that should be taken very seriously, the thing that worried me the most about our conversation was his stubborn insistence on trying to go it alone with his disease. My friend mentioned he’d recently ended a relationship with a girlfriend that she felt was supportive of him, and she suspected it was due to her father perceiving his decline and not wanting her to be there to see it. Not only that, but he refuses to see a doctor about the worsening symptoms, talk to a therapist to cope with depression, attend support groups or even openly discuss the disease with his daughter, who feels alone as his care giver and support system
I know personally that denial and depression are extremely powerful, so I’m going to do the best I can to take apart the misconceptions they create as simply and directly as I can.
Knowing that you have a progressive and incurable disease doesn’t make it any easier when you notice that your hands aren’t as steady as they used to be, or any when any number of other symptoms appear for the first time. New symptom onset can be extremely distressing, but you must not give up hope. There are so many treatment options nowadays that there is almost always something that can be done to help you maximize your quality of life, whether it’s a therapy already approved for use by the Food and Drug Administration or is still in trials. Be proactive and optimize every aspect of your care, including diet and exercise, and remember to watch your protein intake if you take levodopa. Finally, when it comes to your mental health be extremely aggressive. Depression is quite common with up to 60 percent of patients experiencing mild or moderate depressive symptoms. Studies have shown that depression can worsen motor symptoms in addition to decreasing quality of life, and that treating the depression can improve movement as well as mood.
Support groups, whether in person or online can be extremely beneficial. I know how scary this step can be, but it is so important; without the group of people who just understand what I’m going through that Jasmine started I honestly don’t know where I’d be.
Don’t know where to start? Check out the National Parkinson’s Foundation forums, the American Parkinson’s Disease Association’s Young Onset Center, or find a local support group. I’d be happy to add you to the groups I’m a member of on Facebook if you contact me. If you’re someone with a juvenile onset (before 20) I’ll even add you to the group Jasmine started which was so beneficial to me personally. If you feel you would rather take action than sit around talking you can get involved with the Parkinson’s Action Network, Team Fox , or find a local event. There are far more resources than I could possibly list so if you don’t find a group helpful immediately don’t despair; I know you’ll find one that fits if you keep looking.
If you’re worried that joining a patient community will just bring you down further don’t be. The Parkinson’s community has some of the most amazing and inspiring people around: an aspiring neurologist, a former Major League Baseball player who redefined himself as a father when his career was cut short, an endurance athlete who pushes his limits to raise money for research in honor of his mother, and of course perhaps our most prominent member Michael J. Fox who used his acting fame to start a foundation that has raised more than $450 million to find a cure.
Finally, don’t cut rush to cut people who want to help you out of your life out of fear. Yes, things will get worse, even much worse, but if someone loves you enough to stick by you through it all you should feel honored. I plan on writing in more detail about the topic of caregiver relationships in the future becuase its a crucial aspect of the disease that I feel is often overlooked, but in the meantime I promise you if you are open with your caregiver about how they can help you while remaining considerate of their needs they will be happy to help you shoulder the burden of this disease. And if you are a caregiver struggling to find balance you may want to check out some of the caregiver resources available through the NPF.
“I discovered that I was part of a Parkinson’s community with similar experiences and similar questions that I’d been dealing with alone.”
~Michael J. Fox
