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

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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.

 

A New Rating Scale For Parkinson's Disease

According to the “Classical PD Timeline: Onset to Death” chart I found on the website of the Rocky Mountain Movement Disorder Center, I'm in trouble. My clinical symptoms showed up 13 years ago, which means I am somewhere in between Hoehn & Yahr stage III (Poor Balance) and H & Y stage IV (Fall, Dependency, Cognitive Decline). The fact that I fell on Christmas eve while getting ready for family to come doesn't help.

While I understand this chart shows a common pattern of PD and is not meant to strictly show what an individual will go through, I also understand how easy it is to bypass the writing underneath the chart and just see the chart... like I did... and have that knee jerk (or dystonia jerk) “holy shit” reaction. (I eventually skimmed the article.)

When all is said, researched, and done, we still have to admit how much we don't know. My PD will do what it will do. I know if I exercise my body and my brain, eat right, and do my best to stay connected with my friends, family, and the community at large, I will do better than if I watch TV all day, eat junk food, and never see anyone. I also know this has less to do with PD than with LIFE in general. Duh.

Having said all this, I know I've gone through a lot of stages since my diagnosis. So many, I have come up with my own rating scale. I call it the Reinhart New Rating Scale for Parkinson's Disease. I'm sure others will find it extremely valuable and someone will insist on paying me lots of money to continue my research.

Here it is:

Stage 1: Parkinson's? Me?

This stage usually starts when you are diagnosed. It is generally accompanied by either screaming, swearing, or a blank stare.

Stage 2: No, thank you.

This isn't just denial, it's when you tell your doctor you're returning his/her diagnosis and you want your money back or possibly, “I'd like to trade it in for a bout of stomach flu and hemorrhoids.”

Stage 3: I'm going to do this right.

For some people, this means fighting it. They express this stage with: “I have PD, but PD doesn't have me.” Others (like me) decide to embrace their situation and become as positive as possible. This could be expressed as “I'm not going to fight this, I'm going to learn to live well with PD” meaning, “I'm going to learn how to slow down and eat well and exercise and keep active in the community and do everything I want to do which means I'm really in denial about having anything wrong with me in the first place.”

Stage 4: Pac-man Power Pellets

Otherwise known as Sinemet or Carbidopa-Levodopa. All of a sudden things are good. Wow. Life is almost back to normal... sort of. If I have more symptoms, the doc gives me more power pellets. Mmm, dopamine rush. It's much easier now to be positive about life, the universe, and everything.. and I don't even need marijuana.

Stage 5: Crash and Burn

Maybe a few people can be put on medication, have it work right the first time and be just fine. For the rest of us, it's like trying to get an old record player to work at the right speed with the right records. (Okay, between the Pac-man reference and vinyl records, have I dated myself?) Too much dopamine and I'm a 45 record playing on 78 speed. Too little and the speed goes down to 16 rpm or it stops altogether and the needle screeches off the record.

The crashing and burning comes from the reality of what happens at 78 speed, like obsessive compulsive stuff, and what happens at 16 speed, like severe depression.

Stage 6: How normal do I have to be?

This is the healthy fear (or terror, depending on what effects meds have on you) of changing medications, adding medications, or upping your dose.

Stage 7: Be positive? F*(^ no.

Self explanatory. For the sake of our families and friends, we always hope this stage is short.

Stage 8: Do-over.

Let's go back to stage 3, but be more realistic about it.

Stage 9: Finding Grace

What happens when you realize these stages happen. You're not going be positive all the time, you're really going to have to slow down and it's okay. Life is good. It's okay. No, my PD isn't going to be controlled all the time and I'll have to make adjustments. It's still good. Amazingly, it's much easier to be positive more of the time when you don't put pressure on yourself to be positive all the time.

This is a rating scale I can understand. It's not perfect, some of us go back and forth between stages for years. I tend to shout, “DO-OVER!” on a regular basis.

It's okay because the grace is always there waiting for us.

For to be poised against fatality, to meet adverse conditions gracefully, is more than simple endurance; it is an act of aggression, a positive triumph.
— Thomas Mann






The Little Scooter that Could

Here it is, the little TravelScoot that could, tied down in the bus to Ronald McDonald House. It's amazing what a load it will carry for us. The scooter itself can carry up to 320 lbs on the seat, not including the luggage. Amazingly, they now have trailers for shopping and trailers for passengers! 

I don't know what I would do without this in Chicago. There is so much walking in the airports (especially at DIA) and then we try and take the trains and buses when we can. Not all the bus stops are accessible, so we have to be careful, but this scooter which could be hauled down the stairs if needed. 

Thanks again, Roger! This was one of the best gifts ever!

Back at Ronnie's House

Back at Ronnie's House

Where else could we have a dinner cooked by faculty from McDonald's Hamburger University? (No, it wasn't hamburgers) Home made cookies, cakes, brownies, muffins, and fudge? Mittens provided for a cold day when I forgot to bring mine from home? Someone to listen when medical issues become overwhelming? Be able to fall asleep to the rumbling of a freight train?

Early Morning magic

Early Morning magic

Sometimes it feels a little funny being here. We're old timers compared to most of the other families. People ask Emma how old she is and are surprised to hear she's 21. The only other adults staying here (besides Emma, of course) who are as old as I am are there because a grandchild is ill. Also, Emma is almost finished with her work with Shriners. We're here for check-ups or simple procedures, not because something is wrong.

Then again, on one of our visits to Ronald McDonald House there was an older couple staying whose daughter had just had a lung transplant. She had cystic fibrosis. They had been staying in this house for years whenever their daughter was in the hospital, and they were still welcomed even though their daughter was now in her 40's. 

It's been a full house this visit. Being so close to Christmas, it's been nice to have little kids running about, making noise, climbing across the kitchen counters.... which reminds me, I'd love for parents and teachers to see a child who is truly, truly hyperactive. They might suddenly realize there is a big difference between this child and their own very active child. If you can imagine a child with seriously deformed legs such that you cannot imagine how he can walk, let alone climb everything and anything and never, ever stop moving, you might start to get the picture.

During our many stays here at the house, we've met so many wonderful people from all over the country. Many come to have their child treated at Shriners Hospital. These children, like Emma, were born with some sort of challenge, but they aren't ill. They have surgeries on their legs, arms, spine, jaw, or repairs for cleft lip and palate. Others come because a baby was born prematurely or a child is very ill. We have met parents of new triplets, a lovely teenage girl who is being treated for cancer, a family whose apartment had burned down and their daughter was recovering from serious burns.

We've also met a number of families who have willingly taken on the work of raising a child with disabilities. Cheryl Wyse and her husband adopted six of their children and four of them have brittle bone disease. Another family had a total of 13 children, some biological and some adopted. Families stay as long as they need to stay. There is a family who has been here for over a year.

I love this house. It's not in the best area of town. We've been told not to ride the buses after dark and not to go walking in certain areas. The view from our window is railroad tracks and industrial looking buildings. The buses are not that reliable and it's not easy to get around. I still love this house.

One dad corrected us and said it shouldn't be called a “house” because it's really a home. I agree. I know I've written about our stays more than once. During this visit, perhaps more than the others, I've been struck by just how much of a home this has become for us. As the time for Emma's treatments come to a close, I find myself savoring every moment of our time here. In many ways, it's much more than a home. The closest word I can find to describe it is the Welsh word, “cwtch”, which generally refers to an affectionate hug, but the closest translation is “a safe place”.

That's Ronnie's house.