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My Parkinson's Journey

In which Terri shares a humorous look at her journey with Parkinson's disease and Dystonia:

For me, illness and health are not opposites but exist together. Everyone has something that is challenging to them. Mine just simply has a recognizable name. My life will take a different path because of this but that's okay. Everyone has changes in their lives that create their path.  I'm learning how to enjoy whatever path I'm on.

Never Give Up

Terri Reinhart

A year ago in April, a couple of things happened which would change my life; nothing monumental, but significant, nonetheless:

I became foster mom to a litter of 5-day-old puppies - and - I met Uncle Donut. Okay, I met a lot of other people, too; but who wouldn't be excited about meeting someone named Uncle Donut?


In this last year, we have raised a total of 9 orphaned pups from when they were brought to the Municipal Shelter to adoption age. Our grandson says, "It's not just a one time thing with Grandma, it's an ongoing habit." Yup. Who could say no when asked to save the lives of tiny, cute, adorable puppies?

And in the last year, I've gotten to know more of the "Never Give Up - Parkinson's and Dystonia" family. It has become an extension of my family as well. There is something special about an online group where, if I don't post for awhile, someone is going to check up and see if I'm okay. There is something special about an online group when they plan a meet-up in Denver and over 100 people show up from all over the country. 

The group was founded by Erika Snider-Jimison after she had been in another, larger group, and she wanted something more personal. Now, she and 7 others (including Uncle Donut - Keith McCoy) are administrators for a group with over 1700 members. Not everyone is very active in the discussions, but that doesn't matter. Some people are more comfortable just reading what the others write. The important thing is everyone is welcome; you can ask whatever questions you want; you can vent, be silly, post video blogs, or eat donuts. 

I'll let some members speak for themselves:

From Erika - "Seeing the love and support this group has for one another online and in person is a testament to why support groups are so important. Starting this group has been my most rewarding achievement to date. When I think of NGU I smile."

From Terry W - "Some say I inspire them to do better of themselves. I say each one of you are an inspiration to me. To see the different ways that a person can deal with all the negative issues of these afflictions and still be a light to all around them. My hat is off to all of you.. You are the blessing that has renewed my heart and brings a smile to my face every day."

From Keith - "Parkinson's Disease is not an "old persons disease", it affects all ages, genders, races, etc.... There is no cure and it's a terrible disease to have, especially if Dystonia sets in. These diseases are painful and I don't wish them on anyone. I have both plus fibromyalgia, edema, osteoporosis, etc.. We struggle every day to do what used to be easy tasks, like brushing our teeth, eating, getting dressed and more. It's a degenerative disease that cripples you. It not only affects you emotionally and physically, but it affects those you love. Don't feel sorry for me, but laugh with me. I'm known as Uncle Donut in my support group and they're amazing people We need a cure."

Keith asked, "What stuck with you from the Meet and Greet?" Some of the answers are below:

  • The true warmth and genuineness of everyone! From the greetings to the hugs, to the offers of help! It was humbling!
  • It would be how comfortable it all felt.
  • How I wasn't self conscience about how I walk or movements I make, because, everyone understands.
  • I still try to hide it, especially at work. It's so exhausting.This weekend I was able to just let the tremor do its thing.
  • How real and genuine everyone is. The warmth of the hugs. The feeling of having known each other for so long. The generosity. The willingness to help each other without blinking an eye. The strength, courage and laughter through struggles.
  • The thing that stuck with me the most was "no fear". Through storms, dystonia, nOH, for the first time (in public) there was no fear from those around me. I had no fear of people not understanding. It was a wonderful feeling! I cannot thank you all enough for giving that to me!!
  • Beauty. Erica's video celebrates the beauty of NGU members. You have to see them in person to appreciate it. Gorgeous. I felt attractive myself in their company. (my note - when the people around you can see the beauty in every person, it's easy to see and feel the beauty in yourself)
  • The comfortable feeling to be around folk that understand! No explanations - NO hiding symptoms - HUGS instead of DRUGS!! And no one expects or suspects anything...WE CAN JUST BE!!
  • By only being there virtually through all the wonderful posts, it is family. A sense that we are not alone, and among others that understand the daily struggles and accomplishments. I will be there next year!

Look at this photo - these are the faces of people with Parkinson's and Dystonia. Yes, there are some family members in the picture, too, but our youngest group member is 3-years-old and has Dopamine Responsive Dystonia. Okay, her parents are active in the group for her. We have other children with DRD. We also have young people in their teens and twenties with juvenile onset Parkinson's disease. The oldest member of the group is 82. I'm almost 60 and in many PD groups, I have been the youngest. Not so in this group and it's not just because I've gotten older! 

The Meet and Greet included a catered lunch, T-shirts, and two keynote presentations. The first was given by Jasmine Sturr, who has juvenile onset Parkinson's disease. She spoke about the non-motor challenges with Parkinson's, making a good argument for not describing Parkinson's as a movement disorder, redefining our language to describe PD as a "Systemic Neurological Disorder". Her entire talk is on her You tube channel.

The other speaker was Navin Kumar. Navin has Parkinson's disease and he also has a partially mechanical heart because of a congenital heart defect. He has had 5 open heart surgeries. He is also a champion table tennis player and is, right now, in Germany to represent the US in the Paralympics in table tennis.  

Online, the group is growing every day. This will be a challenge for our administrators and all of us. Can we keep the personal, community feel with over 1700 members? For those who cannot come to the Meet and Greet, how can we include them during this special time? As the numbers grow for the Meet and Greet, how do we reach out to all the new folks and not just hang out with those we know and are comfortable with? Can we have some fundraising to help members who would like to come, but can't afford the trip? Or use some of us who are in town to provide host homes?

 Teri, Terri, Terry, and... Teri! 

Teri, Terri, Terry, and... Teri! 

I believe this group can do it. We have amazing leaders who really believe in this community. In Denver, Keith Uncle Donut McKoy made sure to greet every person in attendance and he had his picture taken with each one of us. This year, we added a picnic after the Parkinson's Vitality Walk, just to give everyone more time to get to know each other. 

Nearly everyone came. We even brought the puppies.


When Do You Call It Quits?

Terri Reinhart

My friend, Ed Sikov, recently wrote a wonderful article about writing. With the title, "How Do You Know When Your Writing Career Is Over?", I was almost too scared to read it, wondering if I'd find out my writing career should be over. It's way too easy for me to believe. Scared or not, I read it anyway. Ed's a friend. He's also someone I consider to be a real writer, he has written books and articles and gets paid to do it. Any advice he gives, I'll take seriously.

Soon enough, Ed reassures his readers. All we have to do to be a real writer is... write. Write consistently. Don't say we're going to write, just do it. Don't stop because we get rejection notices or because someone thinks it's a silly thing to do (Ed words all this much better than I do). I would encourage any and all writers to read this article, more than once. Print it out and keep it handy for those times when you get discouraged.

Then, about halfway through his article, he speaks about his diagnosis of Parkinson's disease and how this affected his writing. What he had been doing for years as a professional writer didn't work anymore. He didn't call it quits; he changed how he was writing. This article of his is proof he still is very good at what he does.

I would also encourage any and all people with Parkinson's disease or other chronic health challenges to read this article, print it out, and keep it handy. It's easy to get discouraged when it's harder to concentrate, harder to find the fine motor control, harder to find the energy to do things we used to enjoy so much. We have to learn when to take a step back and change how we do things, not call it quits.

Craft work was a huge part of my life for a long time. It's not that I cannot do it anymore, but the end product of my art work was no longer up to my standards. So I called it quits on a few things, like felting and artistic books. I couldn't think art anymore; couldn't get into that special art zone. I called it quits on broom making too, but that was for another reason; it's just too hard physically. I'm cleaning out my studio and giving a lot of art supplies away.

I still make simple books from time to time and I knit. I don't think I'll be tackling any complicated lace patterns, but I can still do the basics. It's enough and it's very satisfying.

I also write. Oddly enough, I didn't really start writing until after I was diagnosed with Parkinson's. This blog began as articles I wrote simply to help me process this new direction my life had taken. I finally put them on the website because I wanted to make sure I wouldn't lose them if my computer crashed. I didn't really expect anyone to read them. Perhaps this made it more exciting to hear I made the top 15 Parkinson's blogs of 2017, chosen by Healthline. 

I've made the list for a number of years now, but I never expect it. I've run across some wonderful new blogs by people with Parkinson's disease and, if there is a year I am not chosen, I won't be the least bit offended. I won't call it quits, either. Writing seems to be in my DNA. My father wrote his first novel at age 85. Our son, John, is becoming well known for his poetry, and our daughter, Emma, has had two of her short plays chosen to be performed. I'll do my best to keep up.

And before I sign off, here's my new favorite Parkinson's blog:

Small Girl With Parkinson's by Meg Bernard

Oh, and if you haven't done it already, read Ed Sikov's article


A Journey through my Dad's Heart

Terri Reinhart

It was a wonderful privilege for my sister and I to sit in on Dad's echocardiogram this morning. An echo cardiogram is an ultrasound of the heart and is often done after someone has had a heart attack. Ever since Dad's mild heart attack on Good Friday, he's been concerned and curious about what the doctor will find. 

We sat down and watched as the technician put the leads on his chest and turned off the light to start the test. Gray, fuzzy images came on the screen. That was Dad's heart? I kept trying to understand what I was seeing. The darkness started to make me sleepy. Dad's arteries, valves, the atria, the ventricles; all were fading in out in grays, whites, blacks. Half asleep, pictures started forming from his heart images on the screen.

It was like seeing pictures in the clouds. What was that? It looked like a small gray man playing a clarinet. Funny... Dad played clarinet. A three leaf clover? An elf playing piano? A hippo eating biscuits? An exotic dancer? 

"Hey," said my sister, "was the dancer upside-down?"

Uh, yeah. I'm not sure whether to be relieved or worried that we both saw an upside-down exotic dancer in Dad's heart. We were both pretty sleepy. 

After the test, the technician was quiet for a minute and said, "Well, if he was a lot younger, the doctor would see all sorts of problems, but probably, he'll want to see your dad in a year." This was not surprising. Will he still be here in a year? I know there's a lot wrong with Dad's heart. I also know there's nothing wrong with his heart.

That's because there's a lot more to see as we take this journey through my father's heart:

such as a small sheet of paper with the names of all four of us kids and a space to mark when we came home from an evening out with friends. Theoretically, this was to make it easier for Dad to get some sleep and be assured he would know who is home. He still got up to check.. every time one of us walked in the door.

A paperback book with a $20 bill stuck inside, handed to one of us whenever we needed a little cash, with the words, "don't lose the bookmark" said quietly.

A brown paper bag containing peanut butter and butter sandwiches, which meant Dad had surprised one of us by making lunch for us.

His heart is a little sloppy now and it's getting crowded in the veins. If anyone ever grumbled about our house being sloppy or crowded, Dad would laugh and say, "you should've see the house I grew up in!"

There are stories and stories and stories - about his time in Africa, his time on board ship during World War II, about his imaginary friends, Mr. Brown and Andy, and about attempting to play his clarinet with false teeth.

And there is our mother. They've been married 62 years and he's been in love with her the whole time. Even through the most challenging time of their marriage, when side effects to her prescription drugs caused psychosis, Dad would say, "I just want to live one day longer than Mom, so I can take care of her." 

Dad and I share a few things. We've both been diagnosed with Parkinson's disease. Because of this, we've been able to have our DNA testing done through 23 and Me. I perused our reports to see what we have in common and found: we share 49.9% of our DNA, we both consume a lot of caffeine, we're both light sleepers (hmm), we both have dark eyes and detached earlobes, and we both have straight dark hair.

It doesn't say anything about our hearts, but regardless of how it's working now, I hope I inherited a heart like his; even if it comes with an upside-down exotic dancer, clarinet playing guy, hippo, piano, and three leaf clover.


But it's just a headache!

Terri Reinhart

We didn't go to the doctor very often when we were growing up. Unless we needed stitches, a cast, or had strep throat, we pretty much made do with home remedies... or just simply waiting it out.

We didn't go to the doctor for the simple stuff like ear infections or childhood illnesses. An earache meant getting drops of warm vegetable oil in your sore ear. Mumps, measles, or chicken pox meant letting your siblings drink out of your glass so everyone would get sick at the same time. A headache? Lie down with a cold washcloth on your forehead. Rest. It will go away eventually. Stomach flu? Just try and get to the bathroom in time; when we could eat again, we got warm jello water. 

A few weeks ago, my dad was having some pain. "It's okay," he grimaced, "it'll go away in a minute. It always does." When we finally got him to the emergency room, we found out he was having a heart attack. He expected a heart attack would have been more painful and obvious. 

Somehow, I got the message that going to the doctor, the emergency room, or even being in bed sick for days meant I was being lazy. I don't think I was taught this, it was just something I picked up on my own.

In my 20's, I started having migraines. I didn't know they were migraines. They were headaches, albeit rather severe headaches.. that lasted 3 to 4 days. Who goes to the doctor because of headaches? Who stays home from work because of a headache? Still, over the years, I mentioned my headaches to the docs now and then. Some brushed it off, one suggested I take Ibuprofen every 4 hours - indefinitely. One told me I wasn't having migraines. I didn't find the docs very helpful; but then, I wasn't articulating my concerns very well, either. It was just a headache. 

I've learned a lot in recent years. Migraines may be an early indicator of Parkinson's disease. I've found out that a lot of people who have Dystonia have migraines. My three day migraine parties are not unusual. The nausea and sensitivity to light adds to the festivities.  Then, after the major headache is gone, along comes the Migraine Hangover. That's the day when your head isn't pounding anymore and you don't feel like throwing up; your head just sort of aches here and there, and your body feels like it's been rolled down a rocky hill, through a creek, and left overnight to dry.

Some people get an "aura" (seeing lights, smelling something, etc) that tells them a migraine is coming. I get cravings for certain foods, which I will never crave, ever again. Last week, I suddenly just had to have hash browns. I ate a lot of hash browns. I now hate hash browns.

The biggest thing I've learned is that headaches can be a big deal and docs actually take you seriously when you seriously ask for help managing them. There's medication, even some I can take, that will knock out a migraine in progress. Of course, there's the possibility of a "blow-back headache", and I can only safely take the medication so many times per month, but it's something.

I'm getting a little bit better at figuring out when to go to the doctor.. and.. there's no such thing as "just" a headache.



Take it to the limit

Terri Reinhart

April got away from me. It's the first full month of spring, so I guess it's appropriate. This year, trees are leafing out already and the first daffodils started blooming almost a month ago. Our world is bursting with life and activity. We get the urge to do and create and .. well... sometimes the energy is a little crazy.

When I got the first call, I looked at the calendar. During the month of April, I had only 4 important events: Easter (and hosting our family gathering), speaking on the women's panel at the school of pharmacy, Emma's square dance graduation, and staying with our grandchildren for 3 days at the end of the month. Not bad. I figured I could balance activities with rest and be just fine.

So I said yes, I'd participate in the clinical study. It was to be just one morning of cognitive testing; lots of cognitive testing. I like to support these endeavors. Two hours later, another call came. Since I'm participating in this study, would I consider staying a few more hours to be in another study? I would be getting a MEG scan to record my brain's activity. Why not? I'd be there anyway, and hopefully they'd find my brain was doing something other than playing hopscotch or reading comic books.

After the MEG scan, I had a wonderful conversation with one of the doctoral students whose thesis was looking at brain activity to test the theory that our brains become more active and more capable when we stretch out limits, at least to a certain point. When tasks become too difficult and our answers required too quickly, we make more mistakes. We also make more mistakes when the tasks are too slow and not challenging enough. Our brains just get bored and go back to reading comic books. Fascinating!

Then the next phone call came. This was two hours after finding out how much better our brains do when we are pushed to do a somewhat more difficult task. It became my argument and justification (rationalization?) to say we'd take the 3 orphaned puppies and foster them. I'm not sorry we did, I never am. Even at 2 am, looking down at a nursing puppy drinking his formula from a sponge, I am always in awe of this tiny life in my lap. I just had no idea our lives were about to become even busier than I had imagined. 

Easter - we've always told our kids they are welcome to invite friends to our holiday celebrations. We've tried to make all our holidays welcoming to friends, family, friends of family, family of friends, and others. My mother-in-law did this exceptionally well and my husband grew up with large gatherings of very diverse people. This year, everyone got into the spirit and at one point, I had 27 guests on the list with a possible 5 more. WONDERFUL! 

Among the guests were my two brothers and my sister-in-law. They arrived on Thursday evening. Friday morning, Good Friday, we took our dad to the emergency room and found out he was having a heart attack. We didn't bring him in for heart attack symptoms, but thankfully he was in the hospital and being cared for when they discovered this. Our whole focus was on Dad. As heart attacks go, this was a mild one and Dad did very well. Something like this brings up lots of emotions and lots of questions: 

Are we doing enough to take care of Dad? Why didn't the staff at the facility recognize how ill Dad was? Will he need more care now? How do we make sure he gets the help he needs? If he has an angina attack, will the staff get the nitro pill to him in a timely manner, as in right away? Should I be going over every day to check on them? ..and making sure the facility is doing its work? Do I need to cancel our Easter plans?

I didn't have any control over Dad's health and I was so very grateful my brothers were both in town. I decided to go ahead with Easter, partly because I didn't know who all was coming and partly so we could at least provide food for my parents and other family, too. Together (it was potluck) we fed 25 people. 

Dad came home on Saturday, before Easter, feeling very tired and weak. One thing we found out is that he has an artery which is almost blocked, but not quite. At 92, they will not do anything invasive unless we insist; something we will not do. And because it is not quite completely blocked, it's possible his heart will find a way to reroute the blood flow all on its own. Our bodies really are amazing.

A week later and I'm crashing. On day 3 of a migraine and in the migraine "hangover" stage. Like everyone with chronic health issues, I am constantly trying to figure out how much I can do. I think the migraine is my brain's way of saying ENOUGH already. Time to rest for awhile. Tomorrow I'll get up and face the daily dilemma: Take it easy or take it to the limit one more time? 

Sometimes we make the choice. Sometimes life makes the choices for us. 


When getting enough rest can't happen

Terri Reinhart

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"

Terri Reinhart

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

Terri Reinhart

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


~ 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