Parkinson's And Freezing

Help, i’m stuck. My feet feel like they are glued to the floor and I can’t move. The ability to move smoothly and without thinking is the result of a complex interaction between the brain, the body, and ones environment. When healthy we take for granted the ability to get up, stand, walk, and sit without thinking. Parkinson’s alters brain circuit function that enables semi automatic movement. Hesitation to start walking is an initial symptom of freezing. Neuroscientists refer to this as “start hesitation” and ”gait initiation failure” which develops into “freezing gait”. Scientific jargon defines it as a “set switching” or a “visuo-motor response” motor control disorder that involves “amplitude generation” (inability to maintain effective speed of movement) and “rhythm generation” (a disordered timing of movement cycles). You can move again when this “motor block” is overcome. Enough terminology.

Short and to the point. Freezing is the temporary inability to move. It usually occurs in the feet but may happen in any part of the body including speech. No-one knows the cause. No-one knows the cure. All the rest is what to do when it happens. 

What triggers freezing and when does it happen? Freezing may happen when a PWP is having an “off” period and is due for their next medication dose. It most often happens when initiating movement and is triggered by activities that involve switching between motor actions like going through doorways, turning a corner, turning around in tight spaces, stepping over things, or going from one type of surface to another. Darkness (install night lights) and stress (the PD nemesis) can also trigger freezing. The thing to do is to be aware of the situations in which it is most likely to occur and try to relax through them. It will pass. Be aware that many of the same things that trigger freezing can also cause loss of balance.

What to do when you freeze. The most important thing is to not fight it. Try to relax. It will usually only last for a few seconds to a minute. Forcing frozen feet to move could lead to falling. Be careful, know what your triggers are. If your foot is frozen, try swinging your arms and then try your foot again. Try rolling your foot up starting with the toes then arch and heel until the foot comes off the ground. Try moving your foot in a different direction, to the side or back instead of forward. Lifting my leg straight up works for me. Rock, shift your body from side to side. Some people count to three. Some imagine stepping over a line. Humming a song and moving to the beat can help. DBS doesn’t help but researchers are looking for new DBS brain targets to prevent freezing. Again, don’t force it. Falling is worse than freezing for a few seconds.

As with all PD problems, tell your doctor. He may adjust your meds or refer you to a physical therapist for help. Feet get moving, don’t fail me now.

Parkinson's Zone Stages

It was a dark and stormy night, the blackest and longest of the year. An ill wind was blowing against me in the dark and I was feeling a little shaky, unsteady, off balance, and nervous as I began to travel along life’s Parkinson’s Highway in a 72 year old body that had suffered some wear and tear and seen some tough times but still had a lot of life in it although I had recently noticed uneasy hints and subtle signs that not everything was quite right. A ghostly cold full moon cast a dim light on the uncertain future that lay ahead of me.

Sheets of rain blackened the late night so I couldn’t see the dark and dreary road ahead. Intermittent lighting flashes briefly illuminated a lonely old crooked Gothic house set high on a hill which seemed to be held together only by the wisps of smoke and the thick fog that surrounded it. A weathered battered sign swung slowly from the gate. I could barely make out the name, Dr. Parkinson’s House of Medical Maladies, and under it a notice stating All Welcome, Be Careful, Watch Your Step and Balance. You Are On Shaky Ground, Tremors Ahead. 

The momentary lightning flashes afforded me only brief glimpses of the possible troubled future that awaited me as the door slowly swung open and a deep resonant voice bid me to enter, all were welcome. My body began to shake as I slowly understood that I had not found shelter from the storm but with fear and misgiving realized that I had entered the domain of the human brain and was about to discover what happens when its neurons no longer produce dopamine. I had entered the Parkinson’s Zone.

The doctor, a neurologist who specializes in disorders of the nervous system and brain, explained that there were five rooms which he referred to as stages and based on my observable physical symptoms he would assign me to one for as long as I needed it though I might progress through the others in time.

Room1, or stage 1, welcomes those new to PD and is marked by mild symptoms on only one side of the body which do not interfere with the activities of daily living. Tremors, changes in posture, and difficulty walking may be present.

Stage 2 is still considered as early PD. Tremors and rigidity get worse and affect both sides of the body. Problems with posture and walking may increase. Daily tasks become more difficult and take longer to accomplish but the PWP can still live alone and care for them self.

Stage 3 is considered mid-stage and all PD symptoms may be present. Tremors may have advanced to the full body. Loss of balance and slowness of movements are present and falls are common. The PWP is still fully independent but symptoms significantly impair activities such as walking, dressing and eating.

Stage 4 the PWP cannot live alone. Physical symptoms are severe and limiting. The PWP may be able to stand without assistance but will usually need a walker or cane to move around. Help is necessary to accomplish the activities of daily living.

Stage 5 is the full Parkinson’s misery. The most advanced and debilitating stage. The PWP cannot get out of bed or up from a chair without help. Stiffness of the legs may make it impossible to stand or walk. The person requires a wheelchair or is bedridden. Around the clock assistance is needed for all activities.

Upon finishing the tour the doctor said he would take me to my room. I said no thank you the rooms are "lovely, dark and deep, But I have promises to keep, And miles to go before I sleep." Life is short and time passes too quickly so I repeated "And miles to go before I sleep" and quickly left and continued on with my life. Don’t worry too much about what your stage is. Assigning a number doesn’t make it better or worse. You know how you feel.

Additional information. The above stages are based only on Parkinson’s observable physical motor symptoms. It does not take into account the non motor symptoms such as depression, anxiety, fatigue, dystonia, cognitive difficulties, etc. Symptoms are progressive and tend to develop faster the older you are. Each PWP is unique. Not everyone gets all symptoms and symptoms change at different rates, in different order, and in different variations with each person. It may take years to progress from one stage to the next, some people skip stages, and some never progress to stage 5. A good doctor will customize treatment for each stage.

Parkinson's On Off Syndrome

I used to have wonderful control over my body. I would tell it what to do and it would do it. Get up, make the bed, have breakfast, take a shower, clean the house, go shopping, enjoy time with friends, play ball, dance, all enjoyable and no problem. I thought I would always be healthy and just mellow down easy into a gentle old age. Parkinson’s changed that. Now PD controls my body. It says shake and I shake. It says fall back into the chair or bed and although I don’t want to I am down. I was also foolish enough to think there were only four major PD symptoms to worry about. I am six years into it now and new symptoms just keep coming. It took Pharaoh ten days and ten plagues to get the message. It would have taken less than ten seconds if God had afflicted Pharaoh with the host of Parkinson’s symptoms. He would have been shouting ENOUGH get the Israelites out of here now, pack them up, move them out, and don’t try to stop them at the Red Sea. 

Whatever symptom I have at the moment is major. They are all punishing. Two new ones are afflicting me now. On-off and freezing are the newest indignities and another way PD is taking over and taking the me out of me. I am not who I was before PD and am worried about the future me I am becoming.

On-off is a consequence of taking levodopa for a number of years. Most PWP who take a

levodopa based medication will experience on-off in time. On-off refers to alternating periods of good control (on) and poor control (off) of symptoms. Changes in symptoms are usually due to the medication (l-dopa) wearing off but fluctuations may be unpredictable and have no relationship to medication timing. On-off comes in four flavors: on, off, wearing off, and delayed on.

On-time is the feeling good time when the levodopa medication is working and controlling the PD symptoms. Off-time is when the levodopa medication is no longer working well and PD symptoms such as tremor, slowness of movement, and stiffness have returned. Some people say when you are off is how you would feel if you didn’t take meds. Others believe what you feel is a result of coming down from the meds. Others say it is a little of both and just good old PD.

Wearing off is when PWP start to feel that the improvement gained by taking their meds is gradually fading before the next scheduled dose is due. You feel like a battery that is running out of juice. Delayed on is when it is taking longer for your meds to kick in. This is more likely to happen with time release meds because there is an increased delay until enough reaches the brain so the positive effects are felt. 

Possible ways to regulate on-off are to take smaller more frequent doses of levodopa or to take larger less frequent doses. Another way is to take time release levodopa as well as your prescribed dose but these remedies don’t work for everyone. There are also new drugs that combat off cycles. One (a pill Xadago) blocks the enzyme that breaks down L-Dopa, another (an injection Apokyn) increases the level and function of dopamine. Both must be taken with a levodopa based drug. 

Levodopa, has helped many PWP live a decent life but can cause side effects. Be aware of them and don’t hesitate to talk to your doctor about problems you experience.

Parkinson's Shrinks The World

My world started to shrink when I got PD. Is Parkinson’s the cause of my world getting smaller, is aging responsible, or am I just slowly but steadily and increasingly losing interest in the world around me? I realize that I am not aging in the best possible way. I should be more active and maintaining social, emotional, and intellectual contact with the people and world around me despite PD. It’s not that I particularly want to or am trying to withdraw. It seems more like a gradual natural disengagement where I just don’t particularly care about or want to interact with the world and events. Is it natural and acceptable to withdraw from society as I age or is PD preventing me from living a full life?

I sold my lovely car and gave up driving even though my driving is still good. I promised my kids I would stop driving if they told me I was not driving safely. They say I am still a good driver. I know my reflexes have slowed a little and I really liked that car. So why did I give it up? Was it because I thought I was getting too old or because I live in a transportation friendly city and don’t really need the car or because I just am tired of the hassles of ownership or is it because I have Parkinson’s and am slowly doing less and less. Days, world events, life seems to pass before me like a movie that I am neither part of nor taking an interest in. 

My comfort zone has shrunk and I don’t want to leave it. I no longer travel and don't want to. No trips to new places. I want to sleep in my own bed and can best handle PD in my house. Anything else is tricky. Visitors make me nervous for days before they come although I often feel the best and sometimes forget that I have PD when I am with people. Is my world view shrinking due to PD? Am I turning inward and concentrating more on every move I make as it gets harder and harder to move. Where did my youth go now that I am old and need it?

These are some of the things I’ve stopped doing or now do less of. You already know that I sold my car and don’t understand why. I was driving less but still found it useful to have. It’s as if I just stopped caring about whether I had a car or not. I moved into a smaller house, a condo half the size of my long time single family home that also had a front and back yard. Less maintenance, less storage, less space. I almost completely gave up cooking even though I still enjoy food and like to eat. Minimal preparation, no recipes. The simplest meals. Pan the meat, nuke the potato. The microwave is my friend. I stopped working and although I love retirement my days are less busy and I’m not as active as I was. I disconnect from my surroundings and appreciate solitude more and more. I stopped learning how to use new technologies. I used to stand tall and straight but am shrinking, growing physically smaller as I slowly contract into Parkinson’s traditional question mark posture. What is the meaning of this, what to make of it? 

Has anything increased in importance, gotten bigger, become more meaningful? I am happiest when I am with family and friends. They help me get out of myself and enlarge my world. The PD community is great for sharing experience, understanding, compassion and information. Humor and laughter lighten the load, reading and old black and white movies are relaxing, and listening to the rain is peaceful.

What is in store for me as my world becomes circumscribed and continues to shrink? What will my life be like as I become less connected and possibly lose my independence? Do people fade away as they age or is it life that fades away? Will my world continue to shrink until I disappear or can I age well and maintain the ability to function physically, intellectually, emotionally, socially, and spiritually despite my medical condition? No answers in this post. Just thoughts and questions. Getting rid of the car hurt. i sold it to may ex. She quickly dented the left fender, then the right, and then within six months got in an accident that completely totaled the car. It deserved better. I miss it and want it back.

Parkinson's Birthday 2018

I know, I know I posted this last year for my birthday but another year passed and another birthday is here. My Parkinson’s progressed this year so I added a short update. Maybe I will update and post this each year on my birthday as a way taking stock.

And so it’s my birthday. Happy birthday to me. Another year older and I’ve lived another year with Parkinson’s. At first I thought I could handle it but sometimes it has its way with me and developed a little faster than I would have liked. At those times I don’t have Parkinson’s, it has me. So I shake a little more and I’m having some problems with balance. It could be worse. Happy three quarters of a century plus two to me. 

Parkinson’s is my new normal. To see me is to know I have PD. In 20118 my symptoms (tremor and balance) became noticeably worse. It is harder to accomplish simple daily tasks (bathing, dressing, cooking, cleaning) and some days are pure misery. My comfort zone and world are shrinking. I don’’t want to travel and hesitate to take even short day trips. I am less comfortable being with people who don’t have PD and more at ease with people who do. I stopped caring how I look as long as I am clean and have my clothes on more or less right. I have given up trying to still be who I was and am instead trying to understand what I have become. And yet, somehow I am okay. I am doing the daily necessary and enjoy interacting with people and being alive.  

PD is seen as a physical disease, defined as a movement disorder, but it really is a fight for the control of the mind and emotions. A healthy mind is the greatest asset in fighting the disease. It helps me accept the reality of what is, neither making more of the disease nor less. I will probably lose the physical battle with PD even though I exercise every day but I am not giving up the fight for my mind and emotional well being.

I don’t know if I should credit PD or thank aging or both or neither but I now care less about what others think of me. Anger, bitterness, and resentment about things that happened to me in the past is gone but I don’t think I will ever get over the harm I’ve caused others, the wrongs I did to people. Most of my failures and missed opportunities no longer matter. It no longer gnaws at me and there is no one to blame. I am mellowing as I age and don’t worry about what I don’t have. I’m more thankful for what I do have. I accept the reality of what is, neither sugarcoating what is nor wanting what isn’t.

I am at a delicate balance point, thinking equally about the past and considering my future. Life changes in an instant. So many people here one day and now gone. Appreciate what you have while you still have it. Don’t take anything for granted. I no longer rush through things trying to get to next. I relax more into the now of what I am doing. I have no idea how much time I have left so I have no intention of rushing through it.

Life is what happens when you are with other people. Thank you to my family. You are what I care about most in life. Thank you to friends. We had wonderful times and you made life more interesting and enjoyable. Thank you to those I loved and those who loved me. You made life special. I still see of each of you in the glow of the unique light that love bathes a person in.

The sense of me being old seems odd to my children just as it does to me. I know they are troubled by how they see me: Parkinson’s, doctors, meds, slightly stooped, head hanging down, wobbles when walks. What happened to their father the now diminished giant who had once been so important in their lives? Where did the moment of his greatness go? Healthy and vibrant, then like a switch thrown in the dark of night so you can’t see what’s coming you find yourself on the other side suddenly old. Life changes in an instant and the world continues without us.

Let’s sing the song. Happy birthday to you. All things must pass. Happy birthday to you. All things must pass someday. Happy birthday dear Peter. The future becomes the present and slowly but too quickly fades into the past. Happy birthday to you. Time doesn’t pass, People pass and in time become only a memory. So make a wish and blow all the candles out and maybe, just maybe, your wish will come true.