When getting enough rest can't happen

Unrest - an award winning film about Chronic Fatigue Syndrome

It's the most challenging of all the challenges I go through with my Parkinson's/Dystonia brain and body. The twisting and even the dystonic storms are tolerable, mostly. I'm getting used to the slowness and heaviness of my physical body. Though the ease in which I can choke is disconcerting, I'm learning how to manage this. It's the exhaustion that gets to me.

It's this which helps me relate to the experience of people with Chronic Fatigue Syndrome. When I saw this description on a facebook post:

"When you are chronically ill, grief is a constant process. Lately, I've been doing better. My treatment regimen is working. I haven't truly crashed in months because I've charted every millimeter of my invisible fence. Within it, I am well enough to forget just how sick I truly am. When I forget, I get careless, and when I am careless, it all comes screaming back again."  ~Jennifer Brae

I read over it three times. Yes. Yes yes yes yes. This is what it is like. When it doesn't affect us 100% of the time, it's hard for other people to understand. "You look fine to me" "But you do all kinds of stuff" "You have Parkinson's? I would never have known". I don't get upset about people not understanding this. Heck, I don't understand it. I feel normal today so I get stuff done which I've been wanting to get done for weeks. I never know what will throw me off. What is too much? Where is my invisible fence?

Jennifer Brae has made an award winning film about Chronic Fatigue Syndrome. It will be showing in Denver on April 8, 2017. It is called Unrest. I'm getting ready to order my tickets now.

I still chuckle when I think of the person who advised me to never say I'm tired. That's too negative. I should say, "I'm relaxed". HA! When I'm relaxed, I'm not tired. When I'm tired, it means my body has decided to do things without consulting me; things like getting into a virtual bar fight and getting sucker punched over and over, trying to imitate the girl in the exorcist by seeing how far around my head will turn, and twisting up into the "I lost at Twister" pose.

We have to pay attention to our bodies. If I don't really and truly pay attention to the signals my body gives me to slow down, I will crash and be in bed for days. No, not relaxing tired; it's the kind of tired you get when you've got a bad case of true influenza, without the coughing or sore throat, but with headache, muscle aches, feeling shaky and weak, and heart starting to beat faster kind of tired.

There's a fine line between positive thinking and denial.

Yeah, I get it. There's also a fine line between being aware of our body and being self absorbed and overly anxious about every little twitch. Most of us went years without a clear diagnosis so being too self absorbed and anxious is understandable. It's mostly because we are or were trying so hard to understand what's happening to us.

I don't grieve a lot for the life I had before I had Parkinson's. In many ways, it's just gotten better and better. When I do grieve, it's because of the exhaustion. I want to have energy for my family. I want to have plenty of energy for our grandkids. I don't want to just be present, I want to be present and active as much as possible.

We're fostering a little Chihuahua/pug mix dog for Life is Better Rescue. Viv is the sweetest little dog and is fairly calm, most of the time. We discovered what happens when the door opens and she gets out. She took off so fast yesterday, I was scared we'd lose her. I get it, Viv. That's sort of what I do when I feel good and the door to my energy is open. I'm outta that invisible fence and off down the road before I stop to realize just how far I've gone. I've resorted to putting a leash on Viv if we're expecting people over. This way, if she makes a dash out the door, I may be able to step on the leash and prevent her from going too far.

Hopefully my family won't do the same to me! Maybe I shouldn't give them any ideas.

Disability and "The Bureaucracy"

Because of how quickly my disability benefits went through, I have had a lot of people call or email me to ask for advice for their own disability applications. Occasionally, the request comes via social media. In the comments section, most people are polite and sympathetic. Not helpful, but sympathetic. Others just start blasting away. It reminded me of some of my pet peeves when it comes to people's reactions when they hear of anyone applying for government assistance. 

1. Social Security benefits are not an entitlement. We've paid into our Social Security all the while we've been working. It's more of a forced saving's account where our employer matches the amount we put in. The benefits we receive are based on how long we've worked and how much money we made, in other words, how much money we, and our employer, contributed.

2. Social Security Disability Insurance benefits are not an entitlement. SSDI is the insurance we all carry while we work and contribute each month. When I finally applied for SSDI, the caseworker who helped me, asked why I had waited and not applied right after I had to quit my job. I fired back, "BECAUSE I WANTED TO TRY AND WORK".  He gave me a funny look and said, "That's sort of like getting into a car accident and not filing an insurance claim." 

3. Bureaucracy is not a bad word.  We put a lot of extra negative meaning into this word when it really just means "the officials, employees, and people who run government departments and offices, or similar officers and employees who manage the details of a large business." (Cambridge Dictionary) People complain and say the federal government is too big. Then they complain when they wait at social security for hours and say "the government is inefficient and there's too much bureaucracy". Maybe there should be more bureaucrats - as in a few more staff people - to help run the offices.  

4. No, I don't have to whine or cry or "work the system". There's an attitude out there that makes two statements - 1) lots and lots of people are applying for disability who don't need it and they're applying because they're lazy and don't want to work - and 2) The "system" wants to find any reason to deny your disability benefits because this is a huge entitlement program (see above) so.. if you want to have your disability approved (because YOUR reason is valid even if no one else's is) you're going to have to work the system. Whine a lot. Go to the emergency room for little things when you don't have to. Those last two sentences? A disability lawyer told me that. 

What if, okay I know I'm radical, but what if instead of assuming many people are committing fraud by applying for disability just because they're lazy and don't want to work, and what if instead of assuming Social Security doesn't want to help us, what if we take the time to find out what they need from us to make their job easier? What if we went in with the understanding that the staff is overworked and probably underpaid? What if we were nice to them and asked how their day was going? What if we thanked them every time they did anything for us? 

Okay, I know it's frustrating. Maddening at times. Our daughter had Social Security benefits for the first year of her life. I tried to handle everything by phone because I didn't want to take our immunity compromised infant daughter around a lot of people. Handling these matters by phone is enough to make anyone angry. There are times when getting frustrated and angry is inevitable and appropriate. We don't have to start out expecting it to be that way. 

Here, again, are the guidelines I was given by a friend, a former Social Security disability worker, before I applied:

1) Do everything in person at your local Social Security office whenever possible. If you call and make an appointment, you won't have a long wait. Apply in person, not over the computer, not over the phone. If you make an appointment, be on time.

2) Do your best to be pleasant and not whine. We all have bad days, but trying to be pleasant helps us, too. Social Security caseworkers get yelled at and whined at a lot. They'll appreciate someone who is pleasant.

3) Gather your medical records yourself and organize them in a binder. Ask your doctor(s) for a letter of support. Ask your employer for a letter of support explaining why you are not able to do your job properly, even with the accommodations you tried (list them). If part of the issue is fatigue, write your own note to explain the difference between your fatigue and being just very, very tired. Say how much activity it takes to exhaust you. (example: when I taught a class for one hour a day, 5 days a week, by the end of the 2nd week, I was falling 5 or 6 times a day. At the end of the 3rd week, I had an ER visit). 

4) When you bring in your records and if you need to bring addition documentation later, ask for a receipt.

5) Thank your caseworker! Go in with the attitude that they are on your side and your job is to help make their job easier.. and therefore, quicker.

Will this guarantee you will get your benefits approved? Of course not. 

Why gather your own records when they will gather them for you? Yes, you can sign the permission paper so they can request your records. These caseworkers have lots of clients. Imagine the challenge of sorting through all the records which come to the office and getting them in the proper files. Do the caseworkers have the time, energy, and investment to make sure everything is done quickly? If you gather it yourself, it's all in one place and you know what you have. Take it in when you apply. 

But they get paid to organize your files. Well, yeah, but with just a little bit of effort, you can speed up the process for your application. 

If your benefits are denied, then you will want to talk with a disability lawyer. They get paid a percentage of your retroactive pay, so being organized for the lawyer speeds things up, too. 

If you call up a lawyer and they tell you to whine and go to the emergency room for little things, hang up on them and find another one. Take a deep breath. Smile. You might have to swear first, but then smile.

Parkinson's, Eating, and Cyborgs

It's amazing how much we do during the day without thinking about it. Actually, it's a good thing we don't have to think about everything we do every day. If we did, we wouldn't have time for anything else. We'd need an entire crew to manage everything.

Captain:  Body - Report.

Data:  Heart - Currently at 74 beats per minute. Adjusting for emotional fluctuations and exercise levels, we should see an average of 69.327 beats per minute over the next 24 hrs. Blood pressure holding steady at 104 over 62. Lungs - respiration in the normal range.

Worf: Weapon systems operational, but only when startled. There seems to be some electrical malfunction. The limbs aren't receiving the proper signals. This indicates a weakness. Captain, are you sure this body is worth maintaining?

Captain: For now, yes. As long as critical operations hold, it's the only body we have until the 27th century. We need to keep it running. LaForge, what about the climate control?

Geordi:  There's something going on with the heating system; too many fluctuations. I'll see if I can make some adjustments.

I thought I was up on all the crazy symptoms of Parkinson's. I know we have to actually THINK about things like blinking, swinging our arms while walking, not looking and sounding like we are drunk when our meds wear off. I never thought I'd have to think about swallowing. 

I've been feeling sorry for myself since my neurologist and speech therapist agreed that I cannot eat unless there is someone close by who can do the Heimlich maneuver. This is when I learned about one more thing I do without thinking about it: eat. No more grabbing a few toasted almonds when I go through the kitchen. No meals when I'm alone. Makes me grumpy.

Scotty:  She canna take any more, Captain. She's gonna blow!

Until I remember some of my fellow Never Give Up Warriors who go through Gastroparesis. This is when one's stomach becomes paralyzed. I would try and explain, but I'd rather let Meg tell you herself. Meg Bernard is "Small Girl with Parkinson's".

In honour of Feeding tube awareness week, I'm reposting the story of when I got my feeding tube. I have moved on in my journey and now eat intravenously 'with my heart'; but my GJ tube is still a huge part of my world as I use the J portion for medication and the G portion to drain my stomach (yes, it's as nasty as it sounds). My central line, my GJ tube and my DBS are my miracles...AND they qualify me for the elite status of "Cyborg". You can't beat that!

                 It’s my Tube-iversary ~ Memories

DECEMBER 5, 2015 / MEG BERNARD

~ Meg Bernard; Small Girl with Parkinson’s

Happy “tube-iversay” everyone!
November 28, 2015 marked the one year anniversary of the absence of all things swallowed; the insertion of my Jejunostomy feeding tube (it bypasses my stomach feeding directly into the second part of my small intestines). It feels like only weeks ago, yet also a lifetime ago.

To read the entire article.... which you should... click here.

As much publicity Parkinson's has received because of celebrities such as Michael J Fox and Mohammed Ali, we still often get asked the question, "Parkinson's? That's the one where you shake, right?" Ah, if only that was all it did, most of us would say; not that shaking all the time is a walk in the park. I've been fortunate. While my biggest challenges are dystonic storms and choking, I can still eat and drink. Gastroparesis is one of those possibilities we don't hear about.  And Meg is an inspiration to all of us, even those of us who aren't Cyborgs... yet. It's all about being alive and ready to keep learning and discovering.

Captain: Now, do you have course and speed laid in?

Wesley:  Yes, sir, they are.

Captain: Very well, Mr. Crusher. Engage

  

Guest Blog - Parkinson's: The Bigger Picture

"Sara! Come sit down with me and listen to this song." Youtube is calling again and with a sigh, I try to find an excuse to get to the kitchen and help my mom with the dishes or take the dog out for yet another potty break. You see, my dad sits comfortably in his La-z-boy recliner for the majority of the day (which is hours on end), watching the endless classic rock videos taking him back to the normal life he once experienced and enjoyed...the life before Parkinson's set it.

All those around him are searching diligently to find some purpose of life for him as he slips into an isolated "coma" of the mind. My father is currently in stage 4 of the disease. Lucky for him, his grandchildren keep him on his toes with the occasional, "Grandpa, catch!", as a workout ball comes flying at him full force. Or, the newest fuzzy addition to the family jumps up on him licking his beard uncontrollably, scampering for all those yummy scraps from the previous meal. He definitely gets his fair share of attention whether he likes it or not!

By far, I have the most caring mother a person could ask for. She is selfless  in every way towards my father. I mean, who gets a whole bowl of seasonal fruit, scrambled eggs and homemade whole wheat bread for breakfast everyday! She cares for his every need and takes on the burden of a life that was handed to her unexpectedly. We all make plans for the future and have goals we wish to accomplish. My parents longed to serve a mission for our church and travel the world together but the cards just didn't deal that hand.

The road has been a long, burdensome one. My parents have gone through the headache of 5 different neurologist who all think he needs a different medication, all with different effects that go along with them from horrible tremors to hallucinations. You have non-stop physical therapy, frequent dentist appointments because eating and brushing become very difficult, applications for breathing treatments, in-house care and the list goes on. Bottom line, those who are in this boat know that the storm is tremendous!

Now what?... Well, we all have that gift of agency. We get to choose happiness or sorrow. We can choose to mope around all day feeling sorry for ourselves or do something about it! And that is just what our family chose, to do something about it! We all decided to have an outing, at least once a month, to take my father out of his comfort zone into the great outdoors. Now, he does get outside occasionally but this is an outing that would involve a longer period of time with much more activity than normal.

So, off we go! This is where the story gets interesting. Every drug that has been prescribed to my dear old dad cannot give him the joy and stimulation that the outdoors provides. Just this last weekend we spend the day in a regional park, listening to the birds sing, watching the squirrels chase each other and laughed as we raced around in a 4-seater pedal bike. My dad had the chance to laugh, heighten his senses and experience a piece of his life before it all changed. I have to say that the worst thing for a patient with Parkinson's is for them to sit around watching TV or stay inactive. Their speech slows down, mobility is more crippling, overall they become completely immobile. We will all be making a better effort to improve his quality of life through the God given beauties of the Earth.

I think everyone would agree that the quality of life is more important than life itself. As loved ones and family, we choose quality of life for my father. As we accept the change Parkinson's has brought into our lives, we can now focus on those things we CAN change to make the quality of life the best that is possibly can be. That's the bigger picture!

Thank you, Sara, for sharing your story with us! 

Breathing, Eating, and a little Good News

This has been a week full of good news (mostly) and small victories. It's been nice, especially since last week was a little too eventful and challenging.

Last week:

I woke up early last Thursday, picked Dad up and took him to his Dr's appt to check his ears, then took him home, rushed home myself, fixed myself a peanut butter and honey sandwich and proceeded to eat it quickly so I could get to the school in time to pick up our grandson. Chris would have willingly done this errand, but he was on strict NO DRIVING orders while we waited for his pharmacy to screw up his seizure meds prescription one more time.

I choked on the peanut butter. Really choked. I mean really really — can’t breathe gesturing to my husband and daughter to call 911 and my husband doing the Heimlich maneuver on me while shouting at our daughter – kind of choking. Our daughter called 911, but even I could hear the phone just ringing and ringing. Fortunately, the Heimlich worked (so far*, thankfully.. and obviously, it always has) and, as no one had picked up the call yet, she just hung up.

This meant my husband had to explain everything to the nice person who called us from the police station and we all had to explain to the two nice policemen who came to the house and quizzed us and obviously had expected to find domestic abuse going on. Fortunately we got all that out of the way and I still had time to go get our grandson.

THIS WEEK!

Something is shifting with Dad in the ear department because he can hear better than he has for a long time. I got Mom’s computer to connect to the Internet and figured out why it hadn’t been connecting, then helped her find an old friend. Then checked my email and found a message from our Medicaid consultant with the word HALLELUJAH! in the subject line. Mom and Dad are back on Medicaid as of February 1st! 

And I got a referral for a swallow study and therapy!

Okay, while this doesn’t sound like fun, and sitting together watching a video of “Breathing and Swallowing in Parkinson’s Disease”  (starring Roxann Diez-Gross, PhD, SLP-CCC) isn’t the most romantic way to spend an evening, I realize it’s all good for our relationship. As lovely as it is to have my husband come up behind me and throw his arms around me, it’s much nicer when he isn’t doing the Heimlich maneuver and I’m not choking and spewing bits of bread and peanut butter across the room.

Swallowing issues with Parkinson's and Dystonia are serious. If you have any of these symptoms, check in with your doc:

• Chronic coughing, especially during or after eating
• Increase in phlegm
• Food collecting around gum line
• Feeling like your food is getting stuck in your throat
• Having a lot of heartburn
• Sore throat/hoarseness 
• Frequent choking

Make sure your family learns how to do the Heimlich maneuver and you know how to do this on yourself. Talk with your family or close friends and go over the drill. If you choke, make sure you or someone else calls 911. Even if you can't speak, they'll know something is wrong and will send someone to check up on you. Don't hang up.

Watch the video, too. Dr. Diez-Gross has some wonderful information here and the tips she gives really, really help.

*this is the 6th time for me

Release and Receive - my 2017 resolutions

Mo was reading the last blog post and concentrating. I knew as soon as she finished, she'd be right there with her opinion about what MY resolutions should be. I was ready for her. I already had my resolutions worked out. She wasn't going to tell me what to do.

Mo:  Okay already, go for it.

Me: I will release my expectations of what each day is going to be; what I will get done and where I might go. As a caregiver, my plans are so often changed by one phone call. As someone with a chronic health challenge, I never know exactly how I'll feel. I won't stop making plans to do things, but I will release the expectation that it will go the way I plan.

Mo: Not bad... continue.

Me: I will work on truly enjoying what I  must do: Enjoying my dad's humor when I take him to the grocery store; relishing the stories my grandchildren tell me in the car and the creations they build all over the house; appreciating the extra space and tidiness of my parents' apartment while I clean and put away their things.

Mo: Good so far. Maybe one more to release and one more to receive. That will be enough for this year.

Me: I will release my expectations of what my body can do and how much I can accomplish other than what I must do. I have so wanted to volunteer and give back to the many people and organizations which have been so generous to us and others. Last time I tried, I was so exhausted, I think I hallucinated - just a little.

Mo: We won't go into the hallucination thing. Someone might get the wrong idea about me.

Me: Thanks, Mo. We won't mention it. Anyway, I will work on releasing these expectations again and again and again. And I will receive joy from working on aging courageously - not giving up, not stopping, but not trying to be young, either. It sort of all goes together, releasing expectations of who I thought I was and receiving joy in who I am.

Mo: Yes! I know you have plenty of role models in this category:  your grandmother "Gram" Leota Myers, your mother-in-law Natalie Reinhart, your yoga teachers Paul and Caroline Zeiger..

Me: And my dad. And even though we lost so many celebrities last year, we still have Harry Belafonte, Jimmy Carter, Bob Newhart, Betty White, James Earl Jones, Leslie Caron, William Goldman, Dan Rather, Dick Van Dyke. I remember being told to enjoy my high school years because they were the best years of my life. I was pretty bummed hearing that at the time. We can't become conditioned to thinking just horrible stuff about getting older.

Mo: Gotcha, now while you're releasing your expectations about what your body can and can't do, there's one more resolution for you. How about giving up peanut butter? I'm sure Chris would appreciate it.

Me: Already there, Mo. I'm thankful I have a husband who knows how to do the Heimlich maneuver when I am eating on the run and choke on a peanut butter sandwich. I think he'll live longer if I don't stress him out like that any more than absolutely necessary. Peanut butter is history. Now Mo, what are your resolutions?

Mo: Releasing the cork on this bottle of wine and receiving a glass to pour it into. Payment for my services! Cheers!

Keep It Simple

After giving this topic a great deal of thought and reading what other people do at this time of year, I came across a lovely practice shared by yoga instructor, Carol Dearborn, RYT. I was given permission to re blog this by Sarahbeth, who posted the article on caregiving.com. I suspect Mo will approve.  Here it is:

KEEP IT SIMPLE

RELEASE one thing that is not making you happy/or will help to reach a goal:

     Want to lose those extra holiday pounds, give up soda, dessert, or alcohol.

     Anger or frustration, release into the wing, again and again.

     Worried over a situation or outcome that is out of your control, let it go, release it from your mind, again and again.

RECEIVE, finding gratitude in your life; simple pleasures:

     To be refreshed by a morning walk or an evening saunter.

     To be thrilled by the stars at night.

     To be elated over a bird's nest or wildflower in the spring.

Living in New England at the start of a new season, I ask my students what they would like to release and receive at this time of change; so we revisit this question throughout the year as part of our Seasonal Living.

Seasonal living is not a new concept, but practiced for years. We got up when it was light, went to bed when it's dark, ate local produce when it was in season. However, today we can shop, eat, and bank in front of our computers and electric light continues through the night disrupting balanced energy flowing through the body that equates to perfect health.

Winter is officially started on the 21st of December, but everyone is too busy with the holidays to make a serious start to living winter energy, the capacity to withdraw, repair, and rejuvenate.

Good nutrition is an essential part of our winter routine because the body needs good, hearty, hot foods in order to keep itself warm, the wrost time to diet and it's the time that magazines and media promote.

In short, eat properly by simmering stews, warming soups, roasted root vegetables and warm drinks such as green, ginger, or jasmine tea. Add basil and black pepper to increase the warming effect, or the use of pungent spices such as garlic, ginger and cloves. Hot water is good as it flushes the kidneys and cleanses the system.

Embrace the season, find beauty in day, sun on your face, cool breeze in the air... to be alive.

By Carol Dearborn, RYT

To read the entire blog post, go to http://www.caregiving.com/2017/01/in-with-the-new/

No Resolutions for Me?

How can it be New Year's again? I swear, I didn't have time to follow my New Year's resolutions last year because the year just went by too quickly. Oddly enough, I seem to have had enough time to forget what they were. This year, I'm not even going to try. Nope. No resolutions for me. I'm just going to keep on as I've been keeping on all this year. Why make all sorts of plans and promises I can't keep? 

Ow.

That's not going to work, you know.

I looked up from the floor, hands over my ears. There, sitting calmly on my computer as if nothing had happened, was Mo, the slightly obnoxious opinion fairy who occasionally drops in to tell me what I'm doing wrong. Just what I needed. Life has been complicated enough without a blasted meddling fairy bossing me around. 

Mo: Obnoxious? Meddling fairy? MEDDLING FAIRY? I've come all this way, just to see you and THIS is how you welcome me? Do you know how far I've come? Do you know how dangerous it is to travel by bird in the middle of winter? Do you? It would have been nice to get a "Hi Mo, it's good to see you" or even "How about a cup of tea?" No, all I get is MEDDLING FAIRY." 

Me: Sorry Mo. It's been a hard week, but c'mon, you know how my body reacts to loud noises? What was that, a ...gong? (Mo held up a tiny gong, not more than a half inch in diameter) THAT’S what made all that noise? C’mon, Mo, you know how my body reacts to sudden noises. If I’d known you were coming, you would have gotten a better greeting… maybe. Put the gong away and I’ll get up and get some tea.

I slowly pushed myself up on to my hands and knees as several muscle groups simultaneously decided to lodge a complaint. Groaning, I stood up and went in to put the kettle on for tea. When I brought it out, Mo was standing by the computer screen, reading what I had written. I handed her a small teacup.

Me: So why are you here, anyway? I thought you had moved to Chicago.

Mo: I wanted to check in with my favorite client.. and it's a good thing I did, too. What's all this about not making resolutions?

Me: Every year I make resolutions, break them by the end of January, and by February I've forgotten what they were. Why make the effort?

Mo: Let's see... I'll just go back to a few other New Year postings.. for several years you've had the goal of decluttering. You've also resolved to continue laughing and learning and trying to see the best in people...and... to forgive yourself as easily as you forgive others. You've resolved to learn how to balance your time and energies. And one of your goals has always been to exercise more... and dance. Are you doing all this?

Me: Well, sort of. I've done a lot of decluttering and, well, for the rest of it, I keep trying. 

Mo: So, the New Year is when you consciously THINK about how you're doing with these goals and remind yourself to keep trying. Which is why you need New Year's resolutions. Really. It's a good thing I came back. I don't know how you've managed this long without me.

Me: I've done just fine. But I'm glad you're back. I missed you. Why did you come back to Colorado... really.

Mo: I enjoyed Chicago, but when you're best friends are a ghost and an old snapping turtle, and your landlord is a scruffy sparrow who thinks he can boss you around, you get a little lonely for the good old days of sitting around with a friend, drinking tea and eating chocolates.

Me: Ah ha! You've come back for the truffles! Okay. You deserve one or two. I'm sorry I was so grumpy when you first came. It is a long ways to come and it's cold out there. It must have been freezing flying by bird. How long did it take?

Mo: Ah... um... about 3 hours. The bird was an airplane.

Me: And all that talk was just to make me feel guilty? Thanks a lot. By the way, what are your resolutions for the New Year?

Mo: To make sure you remember yours... and to eat more chocolate.

Me: Okay by me, you just have to promise one thing. 

Mo: Which is?

Me: Some day, tell me about your adventures in Chicago.

Mo: You got it! Cheers! 

Happy New Year!