About Me

 

Terri Reinhart spent 18 years teaching kindergarten at the Denver Waldorf School. She now enjoys spending time making brooms, felting, knitting, bookbinding, painting, and filling up the house with various craft supplies. She is probably the only woman who has ever asked her husband for 50 pounds of broomcorn for her birthday. She also enjoys writing because, as she says, “It helps me to process all the crazy wonderful things in life without screaming or hitting anything.”

Her husband, Chris, is very patient.

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A humorous look at one person's journey with Parkinson's 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.

If you enjoy my writings, please share them with others! If you are a business or would like me to repost an article or other information from your website, please see the following page for my criteria for sharing other material:  Submissions.

Terri

DONATE TO THE PARKINSON'S ASSOCIATION OF THE ROCKIES

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Entries in dystonia (2)

Monday
Dec312012

If I was a car, my husband would have traded me in by now

Today is the official last day of the year. Everything, even the planet, is a year older. Time is taking its toll on our household. During 2012, our washing machine went out on us twice, our dishwasher gave up completely, everything needs to be painted, and my doctor tells me I need my electrical works rewired.

If I was a car, my husband would have traded me in by now. Let's face it, would anyone keep a car around if the shock absorbers were shot, the heating and air conditioning came on by themselves, often getting mixed up as to which was which, and the transmission had gone haywire? It's not as if we get rid of cars when the ashtrays get dirty, but there comes a point.

Our old Toyota had a sticky valve in the carburator. When it stalled, I immediately turned on the hazard lights and popped open the hood. Our son, John (age 10), got out, took off the air cleaner and stuck a pencil into the valve to keep it open while I restarted the car. Then he put everything together and jumped back in. We kept that car going like that for a long, long time.

Another old Toyota had problems with the ignition. If we took the key out, we had no assurance we could get it back in and turn it. We had the same problem with the door lock. No problem. We simply drove the car and left it unlocked with the key in the ignition where ever we went. Either we got lucky, or it was actually stolen many times, driven around the block and returned.

Our Ford van had a lot of miles on it, but we still kept it – until the transmission went out. At first, I would put it in first gear and rev up the engine for several seconds before suddenly it would kick in and jerk forward. Gradually it gave up and refused to go anywhere. By that time, it had over 200,000 miles.

And me? I have to warm up my engine a lot longer these days. It takes at least a couple cups of tea with caffeine. Of course, there's always the chance of flooding the engine. Then we're delayed while I make several trips to the bathroom. Once my engine is running, I try putting myself in gear; however, the transmission is faulty and I often end up going backwards or sideways.

I tend to veer toward the right, which ordinarily means the tires need to be rotated. As I don't have tires, I just keep veering. I think it's my electrical system. At least my mechanic, I mean my doctor says so. She has decided it would be best to get a system in place so I could be hotwired. This would be the DBS or “Drive Better with Science” system. It is run by the “Darn Battery System” which would be implanted in my chest, turning it into a “Durable Boxy Square” 3rd breast.

The fact that the real name is “Deep Brain Stimulation” doesn't help me in the heebie jeebie department. That I've talked to many people who've had this done and speak very highly of it, doesn't really help, either. I'm not ready to do the complete overhaul. For now, I'll make do with the jalopy veering and stalling and crashing.

The crashing has been happening a lot more lately. I won't make any comments on my exterior shape, except it would be worse if I hadn't added larger bumpers in recent years. I admit, from time to time, I worry a little. It's a pain to put up with a beat up old car. Will my husband continue to put up with a beat up old wife?

Not to worry, he says. I'm an old classic and he's sentimental about old classics.

 

 

Monday
Aug202012

Dys - what??

I know there's been a lot of changes in the field of dentistry in the last decade, however, when did someone decide it was a good idea to have patients close their mouth over the blasted suction tube? This first came to my attention several years ago when I was going to a respected periodontist to have my teeth cleaned. That was the day their office learned the meaning of the word, “dystonia”. As soon as my lips closed over the tube, my whole body twisted and contracted into a pretzel. It doesn't make teeth cleaning very easy, especially as I couldn't open my mouth to let go of the tube.

At this point, my dentist is very understanding and so are most of his assistants. Every once in awhile, there's someone new working with Dr. Sherman and I have to explain all over again. Actually, all I'm able to do is shake my head vigorously and refuse to close my mouth. Invariably, they give me their best patient look. Obviously, this patient isn't all together. They repeat their request at least twice until I finally awkwardly attempt to speak, despite the suction tube which is still waiting for my lips to close around it.

“Ah cand,” I tell the assistant, confirming his/her opinion of my intelligence.

I get a puzzled look in return. If I'm lucky, this is when the assistant will take the suction tube out of my mouth so I can speak more clearly – or at least as clear as I can when half my face is numb.

“I can't,” I explain once more, “it triggers my dystonia.”

“Dys – what?”

I used to try and explain my dystonia to people. Lately, I simply tell them I have Parkinson's disease. Then they smile and nod. They don't really understand, but it's a recognizable diagnosis. It's what Michael J. Fox has, and everyone knows Michael J. Fox. I realize this is a cop-out, but I rationalize it because I've already been sitting in the dentist chair for 3 hours and I don't want to take up any more time than absolutely necessary.

There is a lot of websites about Parkinson's disease on the internet and for this reason, I have chosen not to have specific medical information about PD in my journal. I hadn't intended to include medical information about Dystonia, but perhaps it would be a good idea. The dystonia community is much smaller and they don't have celebrity spokespeople to make sure everyone is aware of this disorder.

Someone on our online dystonia support group suggested we try to recruit a celebrity who has dystonia to speak up for us. I offered then, but was turned down. My celebrity status isn't quite up there with Michael, Mohammed Ali, Davis Phinney, and all those other folks. That I know of, the group has yet to find their celebrity recruit, so I will take up the slack until they do, at least on my website. I hope the information will be beneficial to others.

More information will follow soon, and I invite anyone from the dystonia community to give suggestions for what to include. If there are any links to websites that have been particularly helpful, I'd like to include them here.  

Feel free to share any of this information with your dentists and their assistants.