This Is What Young Onset PD Can Look Like

Not so many years ago, I was taking 27 pills a day to curb my Parkinson’s symptoms. That number didn’t include the supplements that I was advised to take along with my medication. You take some of the pills to mask the symptoms and you take the others to combat the symptoms caused by the pills that are aiding in making life a bit ‘easier’. That is some 700+ pills a month. Over 700 pills to help you stop shaking so much, to keep your mood somewhat elevated, to ease the physical pain that no one else knows is there, for aiding in the reduction of rigidity in your muscles, and more. This is what PD (Parkinson’s disease) can look like.

My symptoms, when going through my medical history with my Movement Disorder Specialist (EVERY PD patient needs one of these, if at all possible) over the years, he discovered that my journey with PD began way back in high school. Yes, that time of playing in the band at Friday night football games and Thursday night basketball games and wondering why I felt like I was trembling inside while sitting on the bleachers or marching on the field or studying for exams or whenever they (the tremors) felt like making themselves known.

Up to 44% of those with PD have experienced internal tremors. This is also what YOPD can look like. In my early 20’s the tremors continued and I started having gut troubles. I didn’t think much of it, but looking back on my medical history my doctor felt confident tthat PD was playing a quiet role way back when.

Fiona MacDonald of Science Alert says, “Researchers have noticed that people with Parkinson’s often report…digestive problems, up to 10 years before they notice tremors. There’s also evidence that people with Parkinson’s disease have different gut bacteria to other healthy adults.” This is also what PD can look like – but you can’t see it.

I began reading through my journals (kept from way back when) and began to see my symptoms actually did begin in high school. But they were subtle. They were unpronounced, minimal, silent, unassuming. There was some rigidity. Internal tremors. Gut problems. Not much but enough to put a connection to. This is what Young Onset Parkinson’s Disease can feel like.

When I was 32, I was misdiagnosed with Lupus and medicated with pills that didn’t make a difference. This is not uncommon.

I visited my regular doctor for twitching in my fingers and shaking in my hands, the right one most predominantly. I was 44 by then. I knew something was wrong. She sent me to a neurologist. I didn’t like his diagnosis nor his bedside manner so I found a Movement Disorder Specialist (MDS). His diagnosis was the same but his bedside manner much better than the neurologist, so I stayed with him.

For the sake of pity, I often don’t let people know how I’m really feeling. People treat you different when they know you have a disease. I don’t necessarily want to be treated different. My heart is still beating. I am living. I have too many weeds yet to pull, too many roses still to prune. I have grandchildren to watch grow and (hopefully!) more to be held. I have things to paint, to fix, and to make. I have birthday cakes to bake, popsicles to slurp, and summer days made for catching ladybugs. I don’t have time to wallow in a sea of sorrow over a disease I have but would rather not. But – since I do – I recognize that there are times (and they are increasing in number) when it’s okay to be treated different and need help. Really okay, because…

that’s what PD can look like.

Bringing Awareness to Something You’d Just as Soon Forget

Some  people think Parkinson’s disease is a movement disorder and they would be correct. Others would say it is a disease that affects more than movement and they would be right. Some say it starts with a tremor and that is likely. Some say it starts with stiffness and that is a possibility but did you know the first symptom that is often overlooked and undertreated is depression?

April is Parkinson’s Awareness month and with that comes a responsibility to make aware the effects of this disease to the community at large by those affected by it. If people wtih Parkinson’s disease (PD) or people who know someone with PD don’t bring an awareness to this debilitating disease, no one else will. If it’s not important to make known the importance of finding a cure with those affected by PD, it won’t be important to anyone else.

PD can take many forms. It can begin with depression, as stated above, include tremors, dystonia (a cramping and tightening of the fingers, feet, neck, and/or other parts of the body. The Parkinson’s patient can experience dyskenesia – involuntary flailing about movements. These are the signs/symptoms that most people generally associate this diease with, but that is becasuse these are the symptoms of having Parkinson’s that are visible. Other signs that are not as commonly known and have been associated with having Parkinson’s disease include losing the ability to smell, uncontrolled drooling, a softening of the voice, walking as if you are dragging your foot, a shuffled walk, tripping/falling, and more.

Parkinson’s disease is also known as an invisible diease becasuse there are many other symptoms that are found with having PD. Along with the visible signs, the invisible signs take just as strong a toll on the body, both physcially and mentally. These invisible signs can include severe back and neck pain, migraine-like headaches, a tightening of the muscles, a change in handwriting quality, an expressionless face, and also depression, as mentioned above.

Someone can have all the symptoms associated with PD, some of the symptoms, and/or some sympotms can change or disappear. PD mimicks so many other diseases, such as Lupus and Multiple Sclerosis that it often makes it difficult to properly diagnose and often takes a neurologist who speciaizes in movement disorders to make a correct diagnosis. This is especially true with people who are experiencing symptoms at an age uncommon to those riddled with PD (the elderly).  This age group of people – those who are diagnosed under the age of 60 – are known as patients with Young Onset Parkinson’s disease (YOPD) and the number of those being diagnosed with YOPD is increasing daily. What was once known as an “old people’s disease” is becoming more common with those under the age of 50.

There are several organizations with resources readily available for the asking. These include the Michael J Fox Foundation (michaeljfox.org), the Natioinal Pakrinson’s Foundation (parkinson.org), and the American Parkinson’s Disease Association (apdaparkinson.org). In Oregon, the Parkinson’s Resources of Oregon (parkinsonsresources.org) is available to answer quesitons regarding PD and also has much informatioin available to the public as well.

PD doesn’t play favorites. It does not take age into account, gender, or race. It can affect anyone, at any time. It can advance quickly or it can progress slowly. The cause and the cure is still unknown, which is why bringing awareness to this disease is so important. If I (now 55 and having had PD for 24 years) don’t think it important in bringing awareness to this debilitating disease, I can’t expect anyone else to think it important.

Journeying with you,

Sherri

The Arrows of God

    Hollyhock LoveHollyhock Love

The other day a friend who also has Parkinson’s disease (PD) put up a post (that I’m fairly certain stemmed from her personal experience of how people react/relate to her in her dealings with ‘our’ disease) on Faebook.

She said having PD changes her personality, her thinking, and her decision-making skills. She said she liked her old personality. How true this statement is for people having to deal with this little monster. Yes indeed, we would love to have our ‘old’ personalities back, for sure.

She said that hEric PD causes anxiety and depression. I can whole-heartedly relate to this statement.

She said that she appreciates the kindness of others when they hear things that should be obvious [and understandable] come out of her mouth. She appreciates their kindness when they see her do things that may seem dumb, say something backwards, or not know how to answer a sincere, “How are you?” Again, I can relate.

For this type of disease – a brain disease – she does ‘one day at a time’. It’s a brain disease. Not like the flu where you can hopefully sleep it away. Not like a cold that you might be able to sneeze or cough it away. It is a disease of the brain which is intolerable often, undeniably unpredictable at times, greatly misunderstood, and sadly – incurable. It is no secret that the public, by and large, is uneducated, misinformed, and unknowledgeable about Parkinson’s disease.

If you asked someone what Parkinson’s disease is, most people would say, “Isn’t that where you shake a lot – like Michael J. Fox?”

Yes. And no.

Some shake (with tremors) and some (although much lower in number) do not shake at all. Some shake (like Michael J. Fox has been seen to do) on a greater scale, some much less. But it doesn’t start or stop there. There are many more symptoms a person with PD deals with. Visible and many more that are invisible.

Along with the things my friend mentions, you can experience some level of forgetfulness and confusion, as eluded to by her comment in regards to needing help with her DVD player. Now, given that DVD players are naturally frustrating (for me, at least), add that confusion to a person with Parkinson’s disease and you have a major melt-down about to occur, especially if that aforementioned person, with the aforementioned forthcoming possible melt-down has missed one or more of their much needed anti-depressant drug. This can only serve to intensify the forgetfulness and confusion.

I know about this – the forgetfulness and the confusion – because I know this: Parkinson’s disease. As my friend said in her post, “I can’t even work my DVD and my son put on labels with arrows to show me how.”

Her son “put[s] on labels with arrows to show [her] how to” work her DVD. I’m afraid labels wouldn’t be enough for me. I need a full-time techie to serve in that area.

But the arrows – I can follow arrows. I’m really good at following arrows and when my friend wrote that her son labels her DVD player not just with’labels’ but arrows, I had an epiphany…

God has a set of arrows for each one of us. He marks our path, whether we would choose that path or not, with His arrows. And the path marked with the arrows of God are arrows that are leading us out of this world. The paths we are on are leading us home. To a better place. The paths are not marked with maps that remind us of navigating a DVD player, but they are marked with arrows that are easy to follow and as long as we follow them and do not turn to the left or to the right, make a U-Turn or plant ourselves in the middle of the road out of defiance, we are going to male it home. The One who is ushering us out of this world with endless mercy and unending grace is the same One who is waiting to usher in into eternity. I don’t know about you, but that encourages me and gives me great hope.

All we have to do…

…is follow His arrows.