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It’s Important to Avoid Dehydration with Parkinson’s

answers

The other day I did something stupid. Really stupid. 

I love to putter in my garden on beautiful days. Only on this beautiful day, I crossed the line. My puttering turned into work, and before long, I was sweating bullets — shotgun-sized bullets on a 98-degree day.

Yet, I kept going. 

I kept going because I didn’t have the good sense to step back, sit down, take a rest in the shade, and get a drink. Like the Energizer Bunny, I just kept going and going and going. If my neighbor hadn’t come outside and reprimanded me (in a kind and concerned way), I’m honestly not sure what would have happened. I noticed while talking to her that I was stumbling around, slurring my words pretty badly, and sweating cats and dogs.

I promised her I would go inside and get some water and cool down. And I did. But I had pushed the boundaries a bit too far. 

During my last visit to the neurologist, my Medtronic rep for deep brain stimulation was talking to me, coincidentally, about how important it is to stay hydrated with a disease like Parkinson’s. He said the body is made up of approximately 60 percent water, and the brain 75 percent. For the brain to be healthy, it needs water. Lots and lots of water.

That day in my garden, I was starving my brain of what keeps it running at peak performance: water.

Water is important for all body functions.

The health advocates at That Sugar Movement note that, “Water is required by every cell in the body and important for all body functions. It helps transport oxygen and nutrients critical to the brain for optimal function, whilst providing cushioning and lubrication to the brain tissue. … So, staying hydrated is one critical factor for supporting the brain.”

Dehydration also can make you tired, mess with your cognitive abilities, lower your blood pressure, and force the brain to work even harder than a hydrated brain to do the exact same thing.

It took me over two days to bounce back from that episode, and it scared me enough to hopefully never repeat it again. With Parkinson’s disease, we’re dealing with major brain issues already. Adding self-inflicted dehydration to the mix is just plain stupid.

Take it from me. Learn from my mistake and go have a nice cold glass of water.

***

Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

The post It’s Important to Avoid Dehydration with Parkinson’s appeared first on Parkinson’s News Today.

With Parkinson’s, a Suntan Just Isn’t Worth It

heat intolerance

Betty slapped George hard. There was no response, so she dialed 911.

Parkinson’s disease (PD) had forced George into early retirement. He loved basking in the sun, diving into a good book, and working on his tan on their deck. Betty was in the kitchen when she saw him slumped over in the chair.

This wasn’t the first time George had responded so severely to the summer heat. He had reacted similarly to the heat two other times. His heart rate was slow, almost imperceptible. His face was ashen. Betty cradled George’s face in her hands as she waited for the ambulance, and with tears streaming down her face, commanded, “Don’t you die on me.” To herself, she said, “The suntan isn’t worth it.”

Similar stories are reported by many PD patients and their families.

Like George, the heat hits me hard. A small increase in air temperature above 75 degrees can leave me prone for hours, if not the entire day. Relief isn’t found by staying still or avoiding activities. I can have a difficult time in the shade or even in the house if the temperature rises.

I follow the recommendations to avoid heatstroke: I hydrate with water; complete any outside activities in the earlier, cooler parts of the day; and wear light, loose clothing. Our house is cooled by central air.

Despite all of these precautions, I can sense the losing battle with the heat as it rises. A comfortable summer day for others becomes a debilitating challenge for me due to heat attacks. This reaction to heat is an attack on my ability to function, a magnified response, such as my descriptions of fatigue and pain.

Researchers claim that heat intolerance is different than heat illnesses like heatstroke. Heat intolerance is usually a side effect of medications or a symptom of endocrine disorders or other medical conditions, rather than the result of too much exercise or hot, humid weather.

Up to 64 percent of PD patients report thermodysregulation, which includes symptoms of heat and cold intolerance as well as excessive sweating. PD patients have problems with their autonomic nervous system, which controls sweating. While perspiration helps regulate the body’s temperature, too much or too little perspiration can result in overheating.

Last month was the warmest July ever. It also included the worst bout of heat attacks ever recorded. It’s time for a tweak in the wellness map.

I’m trying to shift from thinking that I can work in some heat to understanding that it’s not worth the suntan. It’s not something to ignore or push through, distracting the mind from the physical issues, like hiding one’s head in the sand. It must be met straight on with reason and sensible action. Most of us are not yogi masters who can change body temperatures at will. We must use what we know and take steps to prevent serious harm from happening.

This is me telling myself not to take this risk lightly. I tend to push myself too hard.

The symptoms of heat intolerance can vary from person to person, but may include:

  • feeling very hot in moderately warm temperatures
  • excessive sweating
  • not sweating enough in the heat
  • exhaustion and fatigue during warm weather
  • nausea, vomiting, or dizziness in response to heat
  • changes in mood when too hot

If you experience any of these symptoms, time to get out of the heat! It’s just not worth the suntan.

***

Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

The post With Parkinson’s, a Suntan Just Isn’t Worth It appeared first on Parkinson’s News Today.

Balance Issues Are Inevitable with Parkinson’s Disease

balance

Years ago, Harrison Ford played the role of Henry Turner, the main character in the movie “Regarding Henry.”

Henry’s entire world shifts when he is shot in the head during a robbery at the convenience store where he was buying cigarettes. The nearly fatal injury puts him into cardiac arrest and he ends up with brain damage, specifically retrograde amnesia.

It takes several months for Henry to recover. When he is finally released from the hospital, he is not the man he used to be — an arrogant playboy who steps on others to get what he wants. The Henry from before was unfaithful to his wife, and his daughter was afraid of him. Henry post-injury is almost childlike, and upon learning who he was before the accident, tries to right some of his wrongs.

In the first few days home, Henry is sitting at the table with his daughter eating breakfast when she accidentally spills her milk on the kitchen table. Fear seizes her as she awaits Henry’s reaction. He sees the fear in her eyes, and to put her at ease, says, “It’s OK. I do that all the time.” He then tips over his glass of milk as well.

A few months ago, I read about a woman who had Parkinson’s disease (PD). She, like so many of us, was frequently dropping things, including her meals, which made her feel humiliated and embarrassed. Unfortunately, that’s what PD does. It gives you plenty of opportunities to be humiliated and embarrassed, always when you least expect it. But what we need to do is learn to go easy on ourselves. It’s not like we are doing these things on purpose.

The fact is that we all spill things, Parkinson’s or not. We all lose our balance and drop things or fall to the ground. Having PD just makes the opportunities more probable. We need to recognize that spills and falls are going to happen sooner or later, and we should try to be ready for it.

Here’s what you will need:

  • A cane or a walker
  • A helmet
  • Knee pads
  • Body armor
  • Elbow pads
  • Shin guards
  • Safety goggles
  • Leather gloves
  • Steel-toe boots
  • Brawny paper towels for those tough spills
  • Medic alert device to alert people that you have fallen and can’t get up
  • A sense of humor

A dog to lick up those spills wouldn’t be bad, either. Just decide that you are going to turn that 5-second rule into 20 — as we all know, things take just a little bit longer to do with PD!

***

Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

The post Balance Issues Are Inevitable with Parkinson’s Disease appeared first on Parkinson’s News Today.

Is What You Eat Making You Stink?

balance

If you’ve had Parkinson’s disease for any amount of time, you’ve most likely heard that one of the symptoms is a loss of the sense of smell. You may have experienced it yourself.

I pondered this reality one day and became concerned. I wasn’t bothered so much by being unable to smell skunks or detect a foul odor upon entering recently vacated restrooms. I actually consider those loss-of-smell experiences a blessing.

What concerned me was if I smell stinky to others but can’t smell myself, and therefore can’t remedy the situation.

This concern led me to look into foods that are known to make you stink.

Everyone has heard the little ditty, “Beans, beans, the magical fruit. The more you eat … .” Ah, now you remember. It’s just a fact that you don’t need to be told: Beans give you gas. The resulting emissions can rate from minimal to extreme on the odor scale. 

But what are some other foods that can cause you to produce unbecoming body odor that you may not detect because of your loss of smell due to Parkinson’s?

Garlic and onions are popular BO culprits, but did you know that beets can cause your skin to give off a fishy odor?

Cruciferous vegetables (cabbage, Brussels sprouts, broccoli, and others) can create quite a melody of flatulence, but there are great reasons to eat these veggies. Kristen Smith, of the Academy of Nutrition and Dietetics, told Health magazine that these foods “have a lot of fiber and contain plenty of beta-carotene along with vitamins C, E, and K as well as folate. In addition to being good for general health, there’s some evidence they may also help prevent certain types of cancer.”

Did you know that caffeine naturally stimulates your central nervous system, thereby causing the sweat glands to become active? And because coffee is also highly acidic, it dries out your mouth right away. People with Parkinson’s may already struggle with dry mouth issues. Bacteria can grow in a dry mouth, leading to bad breath.

Although lentils are on the really-good-for-you list, they tend to cause a pretty smelly atmosphere. This high-fiber food increases the gut bacteria — something found to be extremely important for people with Parkinson’s — but it can also cause some intensive bloating and gas. 

Some other foods that tend to make you “odorous” are red meat, spicy foods, and soy. 

Our bodies all react differently to foods. What makes one person painfully gassy may have little or no effect on someone else. If you’ve been struggling lately with odor or flatulence, you may want to examine your food choices and see if there is something that is not agreeing with you. 

Also, ask a loved one to tell you if they notice a bad odor emanating from you. If you’ve lost some sense of smell, you might not be aware of it. 

***

Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

The post Is What You Eat Making You Stink? appeared first on Parkinson’s News Today.

How I Steer My Inner Pain Conversation to a Place Where I Can Sleep

conversation

Bad pain day. Trying to keep my mind distracted. Perhaps a good show is on television. Or maybe a movie. The “off” cycle will kick in within a few hours. Pain gets worse. Last medication before bed. Time to be quiet and contemplative, but the pain intrudes upon this space. It’s always murmuring, sometimes shouting, and ever-present. Finding sleep means I need to sit in the “pause between.” I repeat the following mantra to myself:

You can do this. Breathe in: 1, 2. Breathe out: 1, 2.

Let go and allow.

My mind will have nothing to do with this “pause between” nonsense. Waving the imagined finger, my brain’s neocortex, “Neo,” interrupts and says, “How’s that to-do list coming? You’re feeling like you didn’t get much done today. You’re trying to make up for that by working on a new to-do list, but having trouble focusing. This pain sure is annoying.”

Neo continually intrudes on my search for the pause between. He can be more annoying than the pain. I respond flatly, “Yeah, nothing new.” I shift in bed to try to relax as I search for the pause between.

You can do this. Breathe in: 1, 2, 3. Breathe out: 1, 2, 3.

Let go and allow.

Neo pokes a nerve cell. “Remember what the pain was like the other night? Whoo-ee, you were tossing and turning, it felt like we were on a roller coaster!”

My night often starts with thrashing in bed. As I switch positions to find comfort, the covers take on a life of their own, and soon I am entwined by the albino boa constrictor sheets. Waves of pain wash over me as I uncoil the bed linen. Neo didn’t offer any assistance. “Could be a terrible night, you know. It’s surely starting that way. Doesn’t seem to be much you can do about it, huh? You know that each time you try to quieten down to rest, the pain gets louder. I mean, I’m doing what I’m supposed to do, reminding you of the day’s events and whatnot. But it just feels like you’re not trying to fall asleep. You know that you are failing at it.”

The “you’re not good enough” button always hit a tender spot, triggering a surge of anger mixed with worthlessness. I take deep breaths and let out a long sigh of exasperation. Throughout my life this button has been pushed more times than our president has sent a tweet.

Neo pauses for a moment before offering the following, “Lots of memories of pain are connected to punishment, oppression, and self-worth issues. But this is an old familiar path, and you know what will happen if you take that fork in the journey.”

Moving along this well-trodden path, I know that I can tune out those “old voices.” They offer nothing more than the cackling of old hens.

You can do this. Breathe in: 1, 2, 3. Breathe out: 1, 2, 3.

Let go and allow.

Neo jumps in. “We’re not finished here. You have a few things about which to worry. You are trapped in a cycle of heightened emotions, increased pain, and poor sleep.” The logic of his interruption, illustrated with an emotional soundtrack, send me into a worry spin like a dog chasing its tail. The more I worry, the more I became stuck in it. If I keep spinning, I will cross over the “you will never get back to sleep” threshold. I need to return to the pause between.

You can do this. Breathe in: 1, 2, 3, 4. Breathe out: 1, 2, 3, 4.

Let go and allow.

As the first glimmers of change appear, my conversation partner, Neo, warns, “You know the pain is just going to get louder when you do this.”

Very firmly, without anger, I say, “I know that I can move into a pause between and then to a quiet place. I’ve done it before, and I can do it again.”

I can do this. Breathe in: 1, 2, 3, 4. Breathe out: 1, 2, 3, 4.

Let go and allow.

Neo senses the changes. The perceptions of pain and discomfort are slowly lowering. The cool night breezes tuck me into a bed that suddenly feels very embracing. I have no more need to talk about the pain.

Breathe in: 1, 2, 3, 4. Breathe out: 1, 2, 3, 4.

Let go and allow.

Breathe in: 1, 2, 3, 4. Breathe out: 1, 2, 3, 4.

Breathe in.

Breathe out.

Then, 15 minutes later, I am sound asleep.

***

Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

The post How I Steer My Inner Pain Conversation to a Place Where I Can Sleep appeared first on Parkinson’s News Today.

Are You Prepared for a Disaster? Here Are Some Tips

disaster

Can you believe that August is already here and ticking away even as I click the keyboard keys?

Yes, Christmas is just around the corner (although that is not what I was going to say, even if Hobby Lobby already has their shelves filled to the brim with greens and reds and golds). And that means September is less than a month away, toting National Preparedness Month (NPM) with it!

When I think of NPM, I am taken back to the Loma Prieta earthquake in 1989, the day I thought the world was ending. That earthquake rocked the Santa Cruz mountains and beyond. It shook my parents’ house right off its foundation. At a magnitude of 6.9, it was the “big one” that left hundreds homeless, thousands terrified, and innumerable unprepared.

How do you prepare for a disaster? 

I recently read an article about a man with Parkinson’s disease who had a delayed flight and didn’t have any surplus medication with him. The airline staff was no help. He could have prepared by carrying a spare supply (or two, three, or four days’ worth) of medication with him at all times.

I started doing this a while ago, as you just don’t know what might happen. Doing this has saved me countless times from experiencing an unplanned “off” time. Or worse.

Why do we put it off? 

The old adage “It will never happen to me” comes to mind when asking that question. But the truth is that disasters, like a Parkinson’s diagnosis, can happen to anyone at any time, no matter their age, time zone, or bathroom decor. 

Shortly after the earthquake, my in-laws invested in a good-sized duffel bag. This was to be their “grab-and-go” bag. They kept it in the closet next to the front door. It was ready to grab and go if they had to get out of the house in a hurry.

Experience had shown them what it meant to confront a disaster head-on. They had lost their home to a fire several years before, and although they didn’t lose their house in the Loma Prieta quake, they weren’t wasting time preparing for another disaster.

When it comes time to discuss your disaster plan with loved ones (now!), make sure to designate a meeting place should the need to evacuate arise. Just as you should update the supplies in your bag, you also should occasionally update your meeting place to ensure it still works for everyone involved.

What should you include in your bag?

If you are at home when disaster strikes, you will be ready to head out the door with your emergency duffel bag. However, if you are at work or elsewhere, having a mini bag is recommended, such as a backpack or a small duffle bag that you can store in your car. 

Everyone’s bag will differ slightly, but to get you started, following are suggestions of what to include in your mini grab-and-go:

  • Copies of your license, Social Security card, medical information (doctors, medications, insurance info, medical hardware charger and info, emergency contact info, allergies, etc.), all sealed in a waterproof bag.
  • Medication for two to five days.
  • Cash (in smaller bills).
  • Small flashlight and spare batteries.
  • Multipurpose tool.
  • First-aid kit.
  • Bottled water.
  • Small snacks. 
  • Comfortable shoes and a lightweight jacket.

Large duffel grab-and-go suggestions:

  • Duplicate contents of the waterproof bag listed above.
  • Cash (again, smaller bills).
  • First-aid kit.
  • Extra medication.
  • Toilet paper.
  • Personal wipes and antibacterial soap.
  • Multipurpose tool.
  • Flashlight and spare batteries.
  • Water, freeze-dried meals, dried fruit, and nuts.

The list can go on and on, and you can find more suggestions on what to include at the government’s build-a-kit site.

Assembling a preparedness kit will give you some peace of mind should a disaster occur. At the very least, it should help to prepare you.

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

The post Are You Prepared for a Disaster? Here Are Some Tips appeared first on Parkinson’s News Today.

What Not to Say to Someone with Parkinson’s Disease

words

Not all people with Parkinson’s disease experience the same symptoms. For example, I am most affected by bradykinesia, poor fine motor skills, incontinence, and fatigue.

I was inspired to write this column based on my personal experiences after I read Sherri Woodbridge’s column, “What to Say to Someone with Parkinson’s Disease.” Most people don’t know what to say and usually have good intentions. However, poorly chosen words can Be mindful of how you speak to someone with Parkinson’s.

  

 1. ‘You don’t look like you have Parkinson’s.’

This is my least favorite comment. Many of my symptoms are unseen. People have no idea how much I am struggling at times to maintain some semblance of normalcy. Most days, I feel shaky and weak, and I am totally exhausted.

A comment like this can minimize the hidden symptoms that are very real to the person with Parkinson’s. Most people do not understand what those of us with the disease deal with daily and sometimes hourly.

2. ‘You are lucky you don’t have tremors.’ Or, ‘Your symptoms could be worse.’

Parkinson’s is progressive and unpredictable. It’s impossible to know where my symptoms might be six months from now, let alone six years from now. Just because I don’t exhibit a particular symptom now does not mean I will never have it. At times, Parkinson’s feels like the sword of Damocles hanging over my head.

3. ‘You look like you are having a good day. Your Parkinson’s must be getting better.’

If I am having a good day with few symptoms, it doesn’t mean that my disease is getting better. There is no cure and no way to heal from Parkinson’s. For me, good days are fleeting and the exception to the rule. A comment like this serves only to remind me that Parkinson’s is progressive.

4. ‘I have the same problem.’

Sometimes, people respond with this statement when I comment about one of my symptoms (choose any of the following):

  • tripping
  • having to sit down when I put on my shoes
  • losing my balance all the time
  • forgetfulness
  • inability to multitask

I think well-meaning people say they have the same issues because they don’t want me to feel alone in experiencing these challenges. After all, they can develop over the natural course of aging. Most people do not understand, however, that I used to be very sharp mentally and was a strong athlete and dancer before I was diagnosed. That makes these symptoms much more glaring for me.

 5. ‘Hurry up!’ Or, ‘What is taking you so long?’ Or, ‘Late, again?’

With Parkinson’s, I have two speeds: slow and slower.

I clearly remember, years ago, watching my Parkinson’s-diagnosed friend putting on her coat or fastening her seat belt. I would think to myself, “Why is she so slow?” Now, I totally understand what she was dealing with.

6. ‘You have to use the bathroom again?’

My late husband always told me my life was ruled by my bladder. No truer words have been spoken, especially now that I have Parkinson’s. I never like to be too far from a bathroom. I found a smartphone app called Flush that displays public restrooms nearby, and I never leave home without it!

7. ‘Please fill out this form and print legibly.’

Doctor’s office staff, please take note of this one. I cringe whenever I see a new doctor and have to fill out reams of paperwork. My handwriting is atrocious; it was the first symptom that sent me to the neurologist. And guess what? I had to fill out a lot of paperwork at his office! Although my typing on a computer is no longer as fast as it used to be, at least I have a spell-checker. E-forms are a greatly appreciated and preferred option.

8. ‘Parkinson’s doesn’t kill you.’

It’s true that people do not die from Parkinson’s, but they typically die from complications of the disease. As an example, Parkinson’s can impair patients’ ability to swallow, putting them at risk for inhaling, or aspirating, food or liquid into their lungs, leading to aspiration pneumonia. Pneumonia is the leading cause of death in patients with this disease.

Still, I fear living with a poor quality of life and loss of my independence more than I fear dying.

In the grand scheme of things, comments made out of ignorance are no big deal considering what people with Parkinson’s deal with every day. Now that you know what not to say, read Sherri’s column on things you can say to someone with Parkinson’s.

Sometimes you don’t have to say anything. Silence speaks it all.”Disha Patani

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

The post What Not to Say to Someone with Parkinson’s Disease appeared first on Parkinson’s News Today.

Frustrated and Angry? It’s Not People, It’s Parkinson’s

angry

I get angry if he does and frustrated when he doesn’t. “He” is my husband.

I am getting rather self-conscious about going out in public. Sometimes, I feel like people who don’t know me perceive me as being a little drunk because I’m off balance when I walk. 

Other times, I feel people view me as ignorant because I’m unable to finish some of my sentences or I lose my train of thought. That’s where he — my husband — comes into play. When we are out in public, I sometimes get angry when he finishes my sentences for me, and at other times, I get frustrated when he doesn’t.

He can’t read my mind, so he won’t always know when I want him to step up and help me out or when I want him to let me communicate on my own. 

The other day, someone asked me an important question. I got so flustered over my response that I stewed over it for two days.

When I saw the person again, my husband was there. I posed the question to him so she could get a clearer, more logical answer. Then I stewed over whether I should have done that. Just as I had anticipated, however, he answered it with knowledge, wisdom, logic, and clarity. I find that harder to do at times with this scatterbrained kind of disease, and it makes me want to cry.

I have never considered myself a genius, but I have never thought I was stupid, either — until now.

I feel that’s how others perceive me, probably because I tend to view myself that way nowadays.

For example, when I am out for a walk with my neighbor and I am sharing something with her, poof! Just like that, the thought is gone. Or my words feel jumbled and sticky. Or I trip over the silliest things, like my own two feet, and I end up breaking my toe.  

Yes, that was a recent occurrence. 

In my own home. 

In front of all my grandchildren. 

It’s frustrating, and I do grieve the things I’ve lost to this disease — not just speech and balance, but all the things that were mine to use and refine and are now gone or on their way out.  

With all that said, I try to treasure what is still here and make the most of it because I know it could be much, much worse. I also know that if I want to finish my own sentences and feel I am not always given that opportunity, I should actually be grateful there is someone who cares enough to not leave me standing and looking foolish. All I have to do is look at him with “Help” written in my expression, and he comes to my rescue. My hero.

I get angry and frustrated sometimes. I have to remember that Parkinson’s is the cause, not people.

***

Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

The post Frustrated and Angry? It’s Not People, It’s Parkinson’s appeared first on Parkinson’s News Today.

Managing Chronic Pain, Part 2: Applying a Shift in Perspective

chronic pain

Second in a series. Read part one

Pain attacks me every day, and I set aside much of my time to manage it. Chronic pain management is now a significant part of my wellness map. Pain management techniques are rooted in the conceptualization of total pain as suffering plus pain, and that some of that suffering is connected to dysregulated emotions. I know that I can make positive changes that will reduce my daily pain levels.

Recently, pain has become a daily experience and has since become the focus of my wellness map tweaks. My tweaking is a more concentrated look at the “pause between.” This is a mental, and often physical, pause that I take before I continue to think or act to decrease the occurrence of dysregulated emotions and their consequences. Putting this into practice decreases my suffering, reduces my frustrations, and thus lowers my perception of pain.

Pain often triggers the “fight or flight” response, which then activates emotion. Emotions generated by pain are followed by thought and often action — a feedback loop designed to keep us safe from danger. But the loop can spin almost out of control. To prevent it from doing so, it is possible to insert a pause in the loop between pain and emotion, emotion and thought, and thought and action.

The pause between is first brought into focus through recognizing its potential and directing attention to that possibility. This represents a shift in perspective that says, “I can practice the pause between, and it will lower my pain.” It is an adjustment in how the mind is used during the day. Wherever I decide to take my mind each day is the easier path to walk on the following one. The brain likes familiar roads.

Sitting with the pause between takes daily practice. Maybe I should be grateful for my chronic pain, which reminds me of the importance of such a practice. On some days, my Parkinson’s disease-related chronic pain is draining — at all levels. No matter what I do, I can’t sit in the pause between. But I firmly believe in neural plasticity. If I keep my brain practicing pain management, then it will become easier.

The construction of a wellness map enhances its success. The CHRONDI elements can serve this function. Techniques that help to quiet the mind and slow it down allow more opportunities to sit in the pause between. A mentor, something I have been for many students, can also help you to experience the pause between and arrive at a better understanding of your resistance to sitting there.

The pause is a suspended moment emptied of normal emotion, thought, or action. Judgment is halted, and focus is aimed at sitting in the pause between. It is very brief at first, but with practice, the pause between can become longer in duration and more easily accessible.

It is like a fork in the road. Choose which fork to take, initially using thought and action, and eventually emotion. The pause between helps to change patterns of thought and action, decreasing the frequency of those that contribute to suffering. If you decide to select the other fork, the pause gives us the time to walk down that new path, implementing new patterns of thought and action, thereby helping to reduce suffering and lessen pain.

From the place of sitting in the pause between one can apply any of a wide range of techniques. Following are a few of my suggestions:

  • Divert your attention to other tasks — for example, reading a book or playing a video game.
  • Engage in physical exercise; take a walk or a bicycle ride.
  • Get involved in a positive activity that brings meaning and purpose.
  • Meditate.
  • Talk to someone who can help.
  • Use T.O.O.T.S. — “time out on the spot.”
  • Calmly and rationally evaluate your choice of thoughts and/or actions, and choose wisely.

I use all of these techniques. They work better when I recognize and start first with the pause between and the goal of reducing personal suffering.

What techniques do you use to help to reduce your suffering? Please share your story in the comments below.

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

The post Managing Chronic Pain, Part 2: Applying a Shift in Perspective appeared first on Parkinson’s News Today.

Ducking Down the Dog Food Aisle to Avoid Awkward Conversations

conversations

Although I received my diagnosis almost five years ago, people don’t usually pick up on my symptoms in everyday circumstances. I’m an advocate for exercise as medicine. I work out regularly and feel that it has helped me to delay progression of my disease.

So, what should I do if I find myself in the awkward scenario of running into someone who hasn’t seen me recently? Should I quickly duck down the dog food aisle (although let’s face it, nothing is quick anymore), or endure the next few uncomfortable minutes?

Inevitably, the ducking idea fails, and the obligatory conversation begins. How it plays out produces mixed reactions, but primarily a bewildered look of “What?”

It goes something like this:

Unfortunate person who ran into the woman with Parkinson’s: “So, how are you feeling?”

Me: (on the inside: “A rhetorical question, right? You don’t want a truthful answer.”) Aloud, I say, “I’m doing well, thank you for asking.”

Unfortunate person: “Well, you look great.”

At this point, 26 years of wedded bliss to my husband and having raised three sons who all embrace sarcasm begin to show. I save the following witty response for those who know me well enough not to be offended.

Me: (grinning) “Well, I did not get the memo that a Parkinson’s diagnosis meant that I was supposed to look bad, so thank you.”

Then comes the “What?” look, swiftly followed by a laugh, and the elephant in the room isn’t so big anymore.

We managed to find humor in the chat, which lightened the mood. Everyone felt better. After all, I could have answered, “My meds are wearing off, my symptoms are in high gear, and I feel horrible.” That would not be very nice, so I stuck to the lighter side of things.

The bottom line is that we cannot duck down an aisle or cross the street to avoid conversations just because people don’t know what to say to us. It is not due to a lack of concern on their part, but rather a dearth of knowledge.

Find opportunities to educate and inform others about Parkinson’s. If you can manage to do that with a little bit of humor, that’s a bonus for everyone.

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

The post Ducking Down the Dog Food Aisle to Avoid Awkward Conversations appeared first on Parkinson’s News Today.