#EndParkinsons

[lifesparktech]

Parkinson's 101

There is no simple way to deal with the life-changing event of a Parkinson’s diagnosis. The good news: Most people find acceptance and quality of life after the initial adjustment period.

What Is Parkinson's Disease?

Parkinson’s disease (PD) occurs when brain cells that make dopamine, a chemical that coordinates movement, stop working or die. Because PD can cause tremor, slowness, stiffness, and walking and balance problems, it is called a “movement disorder.” But constipation, depression, memory problems and other non-movement symptoms also can be part of Parkinson’s. PD is a lifelong and progressive disease, which means that symptoms slowly worsen over time.

The experience of living with Parkinson's over the course of a lifetime is unique to each person. As symptoms and progression vary from person to person, neither you nor your doctor can predict which symptoms you will get, when you will get them or how severe they will be. Even though broad paths of similarity are observed among individuals with PD as the disease progresses, there is no guarantee you will experience what you see in others. Estimates suggest that Parkinson’s affects nearly 1 million people in the United States and more than 6 million people worldwide.

[davesdaughter92]

Patience with Parkinson's: Yes, You Can

The psychosis portion of Parkinson’s is something I talk about a lot. But my dad does suffer from the issues that effect his motor functions and body movements. The way that I describe it is this: the brain cells cannot communicate with the rest of his body. His brain will tell him to move his leg, but his body just can’t do what it’s told.

This can be incredibly frustrating for both the patient and the caregiver. Simple movements are hard. My dad often says that “he can’t.” “Help me.” “I don’t know why I can’t do this.” The phrase “I can’t” was never in my dad’s vocabulary. He raised me to never give up or give in. You keep pushing until you get there. He seems to have lost that mentality. I think that scares him. But luckily for my dad, I study movement. I know how to treat patients that are immobilized, completely or partially. I know how to handle my dad. And I want to share how to handle someone with Parkinson’s that has difficulty moving.

What not to do: Don’t ever tell them that they aren’t trying. Seriously? Let’s upset them and embarrass them even more. That’s the worst thing you can possibly do. Don’t rush them. PATIENCE IS A VIRTUE! It will take time for them to remember how to move, give them that time. Don’t yell at them. Honestly, what good will that do? Yelling will not make them go any faster and it will not make them suddenly well. It hurts their feelings and they will remember that you weren’t nice to them. Don’t do it for them. This can be difficult because you just want to get something done, but they need to do it themselves. They need to do the motions, no matter how difficult. This helps them.

What to do: Encourage them! They will tell you that they can’t but you have to be positive. I always tell my dad “you can.” And “concentrate and do one movement at a time.” I remind him how to do it. I needs that. Smile! A reassuring smile makes things better. They won’t feel so self conscious and they will be more likely to ask for help.

Today I had to reteach my dad to scoot up from his chair to get up. It took him a bit but he got it. Patience helps. He forgets, but sometimes he remembers and he remembers the queues that I have given him. That makes me happy.

Moral of the story: Be patient with your Parkinson’s loved one. And always encourage them. They get down on themselves a lot, so reassurance and support goes a long way.

[davesdaughter92]

I am the fight against Parkinson's because I love my father

[davesdaughter92]

Feeling nostalgic and missing my Pops. 100+ miles away from him can be hard, but I do the best I can to make the effort to be there as much as I can for him

[davesdaughter92]

It's going tibia okay. Coping with Parkinson's

It never ceases to amaze me how resilient the human body is. It’s strong and it can withstand more than one thinks. The human body can be broken down only to be built back up again. Muscles do that everyday. In life, it’s a constant battle of ups and downs, like a rhythm of a heart beat. We all go through what can easily be the happiest of times and sometimes we go through the darker times. But we still manage to survive what ever struggle that comes our way. Physiologically, we are designed to handle struggle. I often forget that life isn’t just science. Science is non-emotional and states facts. Sometimes it’s easier to exist emotionless, however, that does make us all inhuman. Emotions and feelings feel like my worst enemy. I hate to feel. I hate to be vulnerable. I hate feeling sad or mad or stressed or anxious. It seems like feelings just cause problems. Again, I’m not a robot and I do feel. I feel like the world isn't always fair. I look at my family. My parents, my brothers, and I, we are good people. We work hard and have good hearts. But yet, we suffer. My father suffers from this disease that makes him lose himself. Watching him slowly slip away is not easy. It's heart breaking. It's heartbreaking to see my mother watch the man, who is the love of her life and partner forever, accuse her of infidelity and accuse her of leaving him because he thinks she doesn't love him. It is heartbreaking to watch my mom have to be strong enough for everyone and tell everyone that it's the disease and it's not Dave. My mom stands by his side, through everything and does so proudly because no matter how strange he can act, he's still her Dave. And that's undeniably beautiful. It's heartbreakingly devastating to watch my Dad, the man that seemed completely indestructible, lose his way in the disease that is taking him further and further from himself. My brothers and I have to learn to be with this new version of our dad, one who doesn't tell us jokes or attempt to cook us dinner but end up feeding us hotdogs and Mac and cheese. This dad doesn't always remember that we are adults or college graduates or even old enough to drive, but he does worry about us. I guess no matter how lost he is, he will always worry about us, because that's what all good dads do. I watch my dad sit there in his chair and look lost and confused. I watch the world go on as it seems that our world has stopped. There's not a day that goes by that I don't wish time would stop because at least I can have my dad a little longer. But life doesn't work that way. The days go on and he does get worse. It never gets easier, but the one thing that doesn't change is that my dad is my dad. Whether he has this disease or not, I love him and I will do whatever I can to find a cure for him. There's nothing in this world that I wouldn't give or do to find a cure, to save his life. How does one cope with this disease? There are support groups, like the one my dad goes to. There are plenty of sources out there to educate yourself on the disease, especially at PDF.org. But the best way I've found to cope with my father's illness, is to have hope. I have been in denial and I have grieved and been angry and gone through pretty much every emotion possible. But I'm ready to make attempts to make a difference for him. Educating others and advocating for research to find a cure is my way of coping. I have hope that a cure will be found and I can save my dad. But until then, I can just be there for him. It's hard, but I do it because I'd rather had these moments with my dad than none at all. Parkinson's or not, he's my dad.

[davesdaughter92]

Oh my Quad! The importance of strength and mobility.

Patients with PD can’t move as easily as regular people do. A lot of the time, mobility is incredibly difficult or even impossible. They feel stiff and it can be painful to do some of the simplest of movements.

My Dad used to be an athlete, and man, was he good. Softball, soccer, track, the man really was the trifecta of being an athlete. He taught my brothers and I everything he knew. Ironically, we are quite the athletic family. But when he got diagnosed with PD, he became more and more immobile. He has the hardest time walking and he falls quite often. After he got knee replacement surgery a few years ago, we thought that he might be able to walk better and be in less pain. But unfortunately, his condition worsened.

Throughout the last few years, my Dad has had knee pain, back pain, sciatic nerve pain, and foot pain. His feet often swell, making it painful to walk on them and his posture has been compromised by his forward posturing. This means that he is leaning forward and when he walks; he shuffles and it appears that he’s slowly falling forward. My Mom helps him a lot and has been trying to get him to use a walker or a cane to balance. But my father, being the stubborn man that he is, refuses to use those tools because he thinks he doesn’t need them.

As a healthcare professional, who specializes in movement, strength, rehabilitation, and injury prevention, I have taken special notice of all my dad’s limitations. The one in particular is that he cannot get himself up from a chair. Even if the chair has arms, he cannot use his own body to lift himself out of the chair. My brothers have gotten used to helping him up, but they usually aren’t there. My mom, who is quite small compared to my dad, tries to help him. But she compromises her physical health when she tries to help him because he expects her to pull him up.

My dad has been going to physical therapy for a while. It really hasn’t been working for him. He is now seeing a physical therapist that specializes in PD, so we are hoping that it will help. I think the biggest thing that he needs to work on is getting his range of motion in his joints and increase the strength in his lower body. You know that expression, you don’t use it you lose it? Well, my dad has lost it. I am trying to help him get it back.

Last night I facetimed my parents and tried to show my dad a few exercises to strengthen his quads. He had some discomfort doing them, but he was sorta able to. I realized this: I work primarily with athletes, people that are resilient and heal quickly. Patients with PD need more time and you have to have more patience. The way I can work with my dad, for whatever reason, does work. Sometimes I wonder if I should just become a physical therapist and work with him because whatever I seem to do with him works. He doesn’t take well to other physical therapists. I wonder why that is?

Moral of the story is that range of motion and strength are vital in mobility. If you don’t use it, you lose it. Keep your PD loved ones moving! Built their strength and encourage them. Be patient and don’t give up on them. Working with my dad can be difficult, but I’ll never stop trying to help him.

[davesdaughter92]

What is Parkinson's Disease?

Parkinson’s Disease is a disorder that is chronic and progressively worsens through time. It is a disease of the neurons that creates malfunction and even death of these brain cells. As a result, the motor functions of the body are altered due to the increasing amounts of dopamine, which make it difficult for the person to have control of their movements and coordination. As the disease progresses, more dopamine is produced and the more difficult movements and cognition becomes.

The signs for PD are normally tremors, slow movements, stiffness, or balance problems. But if these were the only problems my Dad has, it would be easier. My Dad suffers from the psychosis portion of PD that often occurs in advanced cases. He has sleep disturbances, loss of vision, loss of energy, hallucinations, and dementia.

The cause of PD is unknown. This disease has no cure, but there are some medications that can help with the motor functional symptoms of the disease. The psychosis portion has not had any successful medications or treatments, until the new recently FDA approved medication that my Dad starts tomorrow.