Live Forever? Really?

I’m more than two thousand years old, I am. I’ve lived longer than anyone in the world.
Mort shook his head.
”You haven’t, you know. You’ve just stretched things out more.
— Terry Pratchett - Mort

It was in the paper this morning. A number of techie billionaires are trying to find a way to extend life to at least 150 years, if not forever. Larry Ellison, founder of Oracle, is quoted as saying, "Death has never made any sense to me. How can a person be there and then just vanish, just not be there?"  Their objective, according to the newspaper article, is to "use the technological tools with which they created an information revolution to upgrade what they consider to be the most complicated piece of machinery in existence: the human body."

I had to look at the cover of the newspaper. For a moment, I thought I was reading The Onion.

There's something wrong with this picture, no matter how you look at it. Fortunately, the bioethicists agree with me. Even Bill Gates thinks their priorities are screwy.  I foresee some challenges if this ever comes to pass. (though I'm confident it won't come to pass)

I hope, as these techies are donating millions so they can live and tech on forever, they are also looking at ways to make the planet live on forever. If not, they'll have to work on the ability to colonize other planets. 

Now they are embracing Peter Thiel's (cofounder of Paypal) plan for a floating city in the middle of the ocean outside the reach of any human government. I'm sure he'd be relieved to hear I'm not interested in joining them. My idea of Utopia definitely would not be living with a group of wealthy immortals. 

Even if you just live to be 150, when do you retire? Are you planning to work till you're 120? Peter has an answer to this, too. He feels people stop trying because they think they don't have enough time: "Because they are 85. But that 85-year-old could have gotten four PhD's from 65 to 85, but he didn't do it because he thought he didn't have enough time." 

I don't need to comment on that one.

In the United States, our life expectancy is already better than that of 161 other countries. There are also 41 countries whose inhabitants can expect to live longer than we do, but the difference between our #42 (79.56) and the #1 country (Monaco at 89.57) is only ten years. If we lived in Chad, we could expect to live only to age 49. We're not doing so badly as it is.

These billionaires may think they are doing good for everyone, but it seems to me it would become one more way to divide the rich and the rest of us. Not everyone will be able to afford these human upgrades. Heck, most of us can't afford the tech upgrades. The last automatic upgrade we went through was called puberty. As upgrades go, it had some nice features, but it messed up the rest of the system for a number of years while we figured it out. 

In some countries, technology is cheap. I know of people living in poverty in Nepal and India who have cell phones, but they do not have clean water. It seems to me, spending millions of dollars to find a way for billionaires to live forever cheapens human life. What would happen if Peter, Larry & Co would, instead, spend the time, energy, and expertise to find a way to keep our planet alive and healthy so there will be a place for humans to live?

What if they would spend their money to help all people on this earth have easier, better lives in the time we are given?

I prefer a different kind of immortality.

No one is actually dead until the ripples they cause in the world die away...
— Terry Pratchett, Reaper Man

A Magic Wand?

As a first step, any ‘cure’ would have to stop the spread of the dysfunction in PD brains, so it would have to arrest progression. Brains do ‘heal’ through making new nerve cells and incorporating them into existing networks, but the healing process is slow. Potential ‘cures’ may include therapies that accelerate the healing processes, although it is likely that the first ‘cures’ would arrest progress and not reverse the disease or make symptoms go away entirely.
— Dr. Rohit Dhall

I have lost track of the number of ways I've been told my Parkinson's disease could be cured. The stories generally come from well meaning friends or friends of friends about someone they know, or someone a friend of theirs knows who was cured of their Parkinson's disease by taking a certain supplement, or drinking an herbal tea or following a special diet. Often people are offended when I don't jump to try the new sure-cure they've suggested. After all, so-and-so tried it and they've been symptom free ever since!

When we go to our doctors, we tend to expect them to have miracle cures, too. Antibiotics were, and still are, miracle drugs, even as we know more about the downside of overusing them. Sinemet (carbodopa/levadopa) is a miracle drug for Parkinson's which has allowed those of us with PD to function. We've come so far with modern medicine, we've become impatient. We really want a magic wand hey presto throw your crutches down and dance kind of cure.

I would be happy with this first step, described to me by Dr. Rohit Dhall. This is enough for me to know. It's exciting to think there may be a time when PD will not be progressive. Even if it's not in my lifetime and it's not totally cured, halting the progression of the disease would be amazing. Levadopa, after all, was a throw your crutches down and dance kind of cure for the time. When it was first given to Parkinsonian patients in 1961, people who were bedridden were suddenly able to walk and run and even jump. (History of Parkinson's Disease)

Dr. Rohit Dhall is the Director of Clinical Studies and Movement Disorders Specialist at the Parkinson's Institute and Clinical Center in Sunnyvale, California. He recently took 45 minutes of his time, precious time to a busy neurologist, to talk with me on the phone about the issues of Parkinson's Dementia and Parkinson's Psychosis. During our conversation, I asked some questions about a cure. The answer he gave, which I have quoted at the beginning of this article, was reassuring to me.

Perhaps because he wasn't promising a miracle, magical cure, it sounded like it might actually happen some day. 

Am I Losing My Mind?

"In other words, Parkinson's may not be unique to me, but I am unique to my Parkinson's. I am not a collection of symptoms to be managed; I am a complex person, and I want caring physicians who see all of me and who are willing to walk down the path of Parkinson's with me. In my neurologist, of course, I want a doctor who understands Parkinson's inside and out, but I want him to understand me inside and out, too.

Thomas Graboys, MD from his book, "Life in Balance"

Before my diagnosis of Parkinson's disease, I was becoming anxious about my health. My balance was off in more ways than one. No one can think very clearly when they have significant health challenges that go for years with either no diagnosis or several diagnoses which the doctors won't agree on. The physical issues with balance, bradykinesia, and dystonia were just the tip of the iceberg. At best of times, we can't separate our illness from how the rest of our body and brain functions. If you've ever broken a toe, which is something quite minor in the scheme of things, you understand this.

Cognitive issues, like it or not, are a part of Parkinson's. When these cognitive issues become unrelenting and affect our daily lives - other than just when we're tired and meds have worn off (we all have off days) - it's time to check in with our doctor. Most of us have experienced the sadness of watching someone we love slowly lose their memory and cognitive abilities due to Alzheimer's or dementia. The estimates of how many people with PD will develop Parkinson's dementia vary greatly. I've seen figures anywhere from a conservative 20% to a frightening 80%. 

The percentage of people with Parkinson's psychosis is difficult to assess easily as well. Dr. Rohit Dhall from the Parkinson's Institute and Clinical Center in California, spoke to me on the phone. "About a third of (Parkinson's) patients can experience psychosis at some point," he said, " and maybe 15% will have profound psychosis requiring a low dose of an antipsychotic medication." 

He continued, "Our biggest fear is losing our minds. In general, People with Parkinson's remain sharp."

With psychosis, Dr. Rohit explained, the patient is out of touch with reality. This can include hallucinations (seeing, hearing, smelling, feeling, or tasting something which is not there), delusional thinking (false, firm beliefs - the house is not my house, the person here is not my spouse but rather an imposter, people are trying to poison me). Often, if there is a mild psychosis due to medication, the patient will retain their awareness of what is real and not real.  

When someone comes in to their clinic with psychotic behaviors, Dr. Rohit said they look first at their medications and make adjustments if need be. All the dopamine agonists (ie: Requip, Mirapex), levodopa, and some of the others can increase the likelihood of hallucinations. The doctors also look at the patient's history. Do they have an infection or other illness which could be causing this? How long have they had Parkinson's? Do they have Parkinson's Dementia?

Psychosis can come with the advancing disease as secondary to changes in the brain related to PD. Those who have cognitive challenges of Parkinson's Dementia are at greater risk. There are medications, however, some of the common drugs which treat psychosis in the general population will worsen PD symptoms. It can also take awhile to find the right combination of medications.  

When a medication is causing or exacerbating a psychosis, it seems reasonable to simply take the person off the drug. This isn't always practical and the patient and doctor have to weigh the benefits against the undesirable effects. In this case, it would be helpful to have a medication to help mitigate the effects of the PD meds without causing further nasty stuff. This is when my head starts to spin.

Remember the old carnival fun houses with, as Wikipedia says, "various devices designed to surprise, challenge, and amuse the visitor", often incorporating activities which distort reality (mirrors) or throw us off balance physically? I was never very fond of them. Looking back, it seems like my first years with PD, especially as my medications were constantly being adjusted, were much like being in one of these places. It wasn't all bad, just exhausting after awhile. 

I asked Dr. Dhall if there was anything we could do to lower our chance of getting PD Dementia or PD Psychosis. Fortunately, though there is nothing we can do to guarantee we won't have severe cognitive challenges, the standard recommedations for avoiding demetia are valid here. 

They are:
Take care of your heart health. Eat right and exercise. 
Exercise your mind with problem solving tasks and word retrieval games. If you are regularly engaged in exercising your brain, it will help. Be engaged in the community. When withdrawing from community work, some people decline more quickly.
Pay attention to mood. Mild depression will affect cognition, often because you give up quickly. 

Let's face it, we're all control freaks. It's engrained in our society right now. Not only are we supposed to pull ourselves up by our own bootstraps, we also must take charge of our life, be the change we want to see in the world, learn to dance in the rain, and always be positive. Our society still has to learn to accept and value times of weakness. 

This morning, I visited a lovely woman who has Alzheimer's disease. She couldn't remember her granddaughter or her son-in-law. She couldn't create full sentences or ideas. It didn't matter. I had heard she was a fighter and a feminist. When I said this to her, she straightened in her chair and said, "Yes!" And she let me know, in her halting, disjointed way, she wished she could still be out in the world doing things. "I love it," she said, smiling. 

Later, I wrote to her son, "When I get old, I hope I can be as delightful as your mom. I've experienced this with other people, but she was a reminder that, even though Alzheimer's can be very sad, SHE isn't. I'm sure there were times of real struggle and may still be, but her warmth shines through."

As Dr. Thomas Graboys said, as he was battling Parkinson's and Lewy Body Dementia, we're much more than just a collection of symptoms to be managed. 

Headology

One of my favorite characters in Terry Pratchett's Discworld series is Granny Weatherwax. She is a witch who happens to work in a seemingly unmagical fashion, something she calls headology. In her opinion, witches don't need all that hocus pocus to light fires. All she had to do is throw the logs on the fire and glare at them until they burst into flame from pure embarrassment. 

Terry Pratchett.jpg

Terry Pratchett died last night after battling a rare form of early onset Alzheimer's disease. He was open about this battle, "The thing about Alzheimer's is there are few people who haven't been touched by the disease." I would imagine his openness was therapeutic for him in many ways, certainly much healthier than trying to keep it secret. Even so, any disease which causes such difficulties with memory and cognition, especially when it comes at a young age, is terrifying to most of us. 

A little closer to home, last week we lost a friend who had battled Parkinson's disease and dementia. Maria was 74 years old. We often were next to each other during our yoga classes and I enjoyed her gentle sense of humor. The last time I saw her, it was obvious her illness was progressing. She seemed distant as though her journey was already taking her away from the world most of us know. It didn't stop her from reaching out to me when I needed help.

Someone in the building had been fiddling with the PA system and there was a sudden electronic screech. Okay, breathe out. Admit it, you cringed when you read that, didn't you? It triggered my dystonia and I twisted up like a kindergarten pretzel (uh, a pretzel made and shaped by a 5 year old) and was unable to move. Maria took one look at me, smiled, and said, "I know just how you feel." Then she came and put her arms around me and held me. Whatever it was about this gesture of hers, my muscles immediately started to relax. Headology?

Awhile ago, I was asked to interview a neurologist and write something for my blog on Parkinson's Dementia. I hesitated. I cringed.. and then I agreed to do it. Then I never heard from this person again. In some ways, I was relieved. When I was diagosed with PD, I was finally told that my symptoms were real, there was a physical reason for them. It wasn't all in my head. It was nice to know my thinking was not going to be affected.

Then I remembered those dopamine producing cells which were dying off.. where? In my brain. I'm not sure it's possible to have any chronic illness which only affects us physically. Certainly it's not possible with PD, especially when we factor in all the medications for PD which affect... what? The brain. 

So, if the original interview doesn't happen, I'm going to write down my questions and go to my own neurologist and perhaps a few others I know in town. For Maria and for all those who have dementia as part of their Parkinson's diagnosis, it's worth researching this topic. 

And if Granny Weatherwax is available, anywhere, I'd love to interview her, too. 

 

Too Much Information or Not Enough?

What do you want to know when you are diagnosed with a chronic health condition? I met a woman the other day who had recently been diagnosed with Parkinson's. She was given her prescription for Carbidopa/Levadopa and told to come back in six months and let the doctor know how it worked. That was it. No information. Needless to say, this wasn't the ideal way to begin this journey.

When I was diagnosed, I didn't want a lot of information. I wasn't going to dwell on the future and I didn't want to hear what might happen to me.  Live for today. It's what we're supposed to do, right? This worked for a little while until I ran into certain challenges which made me think, I sure wish I had known THIS from the beginning. That's when I realized living for today doesn't mean forgetting what happened yesterday or not thinking about tomorrow. 

The internet is an interesting place to learn about medical conditions. There's too much information and it can be overwhelming. I did my best. Depending on the site, I found: totally incomprehensible scholarly articles, health advocates telling me my PD was curable and I didn't need to take meds, one page which seemed to focus primarily on constipation problems with PD, an online group where everyone complained, and numerous pages telling the basic stuff about the classic symptoms: tremor, rigidity, bradykinesia (slowness), and postural instability (wonky balance). 

Between doctors, therapists, and finding some good websites, I have resources for getting the information I need when I need it. There are a few things I wish I had been told by my doctor, from the beginning, like how Dopamine works and what its effects are on the whole body and brain and mood, not just the classic four listed above.

It also would have been helpful to be reminded that neuromuscular means anything in our system which depends on muscles and/or nerves. And I wish I had known it could take a few years before the right balance of medications would be found for me. I realize the doctors can't predict how long it will take, but I suspect there are few times when they get the meds right the first time. 

Regardless, I still feel much the way I did when I was first diagnosed. Everyone in this world has challenges they will face. Mine just has a recognizable name. I don't believe my life is any harder than anyone else's and, really, I have it easier than so many people. My road will be different than it would have been if I hadn't been diagnosed with PD, but that's not bad. There have been new people to meet and new things to experience.

So far, it's been a fascinating journey!

Good websites:  http://www.patientslikeme.com, http://www.michaeljfox.orghttp://www.parkinsonrockies.org/

 

Three Nicest Words

Today I heard the three nicest words, the best words, the words which made me smile for the rest of the day. No, it wasn't "I love you", but something just as wonderful:

"It is benign."

I realize I had it very easy. A small mass was spotted on my kidney when I went in with the "kidney stone that roared" last week. I was able to have an MRI and get the results quickly. There was only a week to not think about what might lie ahead. 

I didn't let myself think about the possibility of cancer growing in my abdomen like bind weed in our garden.  I stayed away from thoughts about chemotherapy and radiation and surgery and I stayed completely away from the subject of death... for the first ten minutes or so.

Last summer, a friend lost her husband to cancer. He may have lost the battle anyway, but he had refused to see a doctor and refused to go to the hospital when he was very ill. Some weeks later, I was with a group of women and I was surprised to hear several of them say they would never want to be taken to the hospital if found unconscious and unresponsive - no matter what the issue might be. "Just let me die," one said, "death is a natural process."

I don't want to sound disrespectful, but hey, if I find someone on the street who is unresponsive, I'm calling 911, even if they have direct orders tattooed on their chest. They can argue it out with the paramedics or the docs in the ER if they'd like. I'm not making the decision to let someone die on the street. I'm all for natural processes, but I'm not against medical care.  

Yes, I would go through chemo if it seemed a reasonable thing to do. It's not pleasant, but these drugs have come a long ways towards making cancer an illness to be managed rather than a death sentence. Everyone who goes through treatment helps the science get better.

I would never want to hurry my way out of the world, either. Suicide, whether assisted or not, does not appeal to me. Palliative care offered today is much more than lying in a hospice totally out of it on drugs. Quality of life is the focus of palliative care and those folks know what they're doing. I don't want to hurry anywhere. I've got grandkids. 

All is good and, with a week to contemplate the mysteries of life and death, I decided if I had to go soon, I didn't have any regrets. I've had a wonderful life so far and I've been fortunate to share it with so many wonderful people.

This was a very small wake-up call, a reminder that all life is a gift and it owes us nothing. 


A Word or Two for the New Year

I had just about decided not to even try making New Year's Resolutions. How many have I kept? Ever? Not many. All those good intentions of exercising daily, eating right, and accomplishing things which, never accomplished, now seem utterly ridiculous and unimportant.  There's enough to do to get through each day, why complicate matters with unrealistic goals?

Yet, it is a new year, a new beginning, and it's hard not to feel a deep urge to freshen up my life a little or give myself a kick in the butt (okay, that's actually not possible, but you get the idea) and decide to be a better person, in one way or another.

My inspiration came from Jeanne Nichols, owner of ModMood, a retro furniture store in Wheat Ridge. In her blog, Jeanne talks about how she chose single words as her resolutions. The first year, she chose one word, "Downsize", and kept it in mind in various aspects of her life throughout the year. It made me think. If I had to choose one word for a resolution, what would it be? I finally settled on this one...

SPACE

space.jpg

Make space in our home. Be aware of how much stuff is accumulating and give things away. Recycle. Most of all, be aware of what we don't need to buy. I want to only have as many things as we need or are important to us for some reason, but not more than we can care for. If something ends up in a box in a closet, it's not needed. Treasure the important things, those that can't be replaced. My treasures are old family photos and letters.

Make space in my doing. This is harder for me, especially now when I have so much to do, but I've made a start. I've decided to cut down on the number of different kinds of crafts I do. This will help with the stuff issue, too. I've gone back to knitting, my first craft, because I've done it so long, it's relaxing without having to think about it.

Make space for people. Be aware of how I listen - or don't listen to my family and friends. Oh, and get my hearing checked. Chris is going to insist, maybe because I asked him why he said he was going to vacuum the driveway (...back into... not vacuum..). Make space to spend time with people who are important to me. Write letters.

Make space in my friendships. People come and go in our lives all the time and there's so much we learn from each other. Let friends in, let them go, it's part of the natural flow of time. I value all my friends and tend to want to connect with more people more often than is practical, considering my time and energy, and I also feel guilty if someone tries to connect with me and I'm too busy to respond right away. Making space doesn't mean we don't care for each other. 

Make space in my thinking for new ideas, people, learning, and admitting when I'm wrong. I should get plenty of practice in the last one. Make sure there's plenty of space without computers and phones.

Make space to care, to be grateful, to give back. A lot of people have given us so much of their time, their resources, their loving care. 

Oh, and make time to watch a little Star Trek and Dr. Who now and then, just so I can have some perspective on SPACE. .... and time and relative dimensions ... and metal monsters.

What's your one word resolution?

 

 

Social Security Disability Ticket to Work Program

I was recently offered an opportunity to apply for a part time job. One of the aspects of this job had to do with job training for disabled people. I decided this wasn't for me, but it made me think. How many people on disability know they can try to go back to work without losing their benefits?

When I have to mention I am on Social Security Disability, the responses are often less than tactful and it started before I applied with“First of all, you're not disabled” and “I'd eat my revolver if I was ever diagnosed with something like Parkinson's.” Now I get the occasional comments like, “I wish I could quit my job and just stay at home and not have to do anything” and“You don't look like anything's wrong with you.”

What do say to something like this? I'd rather not go into a long explanation of my Parkinson's Disease and what it does that no one sees and why this makes it challenging to even consider trying to hold a job. I'd also rather not be looked at as a mooch. Really. I rather be working. Aside from just missing my colleagues, the professional atmosphere, and continual learning, working pays better.

Okay. I got my disability approved quickly. This was good. Still... it would be so nice to work and earn a little more so finances wouldn't be so tight. Could I earn any money without jeopardizing my disability payments? 

When I heard about Social Security's Ticket to Work Program, I was thrilled. This is one of the best government programs I've encountered. It meant I didn't have to worry about losing my benefits while trying to go back to work. It meant having the support of a Vocational Rehab Counselor or Employment Network. It meant having the time to see if the job would work for me before losing any benefits at all.

I met with a Vocational Rehab Counselor, a lovely man with cerebral palsy who used a wheelchair. Perhaps his words hit a little harder because he was also disabled. “Terri, I'm sorry to say, but sometimes a person is just too disabled to be employed.” I convinced him to let me try starting a small craft business through my home and it was okay for a short time, but he was right. Exhaustion set in once again and threw my Parkinson's out of control. It may not have worked for me, but it made me feel a lot better to try.

If you are on Social Security Disability and have any desire at all to try to go back to work, I highly recommend this program.

My neurologist was right. I can be active if I pace myself. Exercise is essential for anyone with PD and going out into the world on a regular basis is essential for me. Every now and then I get antsy and think of how nice it would be to be gainfully employed. So, when I was offered the chance to apply for a part time job making a decent wage, I thought about it.

I thought about it a lot before declining. The reasons I said no are complicated and have as much to do with the particular company as anything else. In the end, the biggest factor was my need to give my attention and my work energy to my family. Being in the sandwich generation, I'm babysitting for grandchildren and watching over my parent's needs at the same time. That's enough...

...for now.