Grandchildren

My grandson (in the following article) with Apraxia makes my MS and RA problems seem minor. He has come so far in 3 years with therapy and the support of his parents, Jen and Chris and sister Ela-his protector.  He is a superhero. But then all my grandchildren are that to me. Each has their own individual place. Ela is the 'boss' and is smart intellectually and emotionally beyond her 8 years. She started "this is the rule" in our family at the age of two. And she is a beauty full of questions and Answers. She likes order. Her current Girl Scout cookie sales are near the group goals. Aleks is artistic and creative. He has his own imaginary business, ATO, and has recently hired me as a worker and his mom is a guard. When he says "unbreakable", I marvel that he has learned to say so many understandable syllables. The word just rolled off his tongue. Ricky is growing tall and loves to jump towards the ceiling to show his growth. He jumps around the furniture with the agility and grace of a jaguar or whichever animal he imitates at the moment. I think he will be an athlete like his dad. He has a wry sense of humor and loves to play tricks. Riley has an open humor and an " in the moment" temper. Don't cross him. Gary calls him tugboat-for his strength and determination. He also likes to draw and understands my abstract pictures as does Aleks.  Ela likes my drawings of "real stuff". Riley is now 2 1/5 and has known numbers for a year. He a fast learner. Vera Mazie is the 8 month old baby of the family. She is my last hope for a redhead and it doesn't look good. She has those same dark eyes as Jen and Ela and Tori. Tried to say pretty yesterday. She is a happy baby. I am thankful to have these children to love and care for. Zumbathon aids kids with speech disorder

Written by KAREN NADLER COTA Sentinel Lifestyles Editor

Friday, 17 January 2014 10:14

Deb Kelly (right), a speech therapist for Wood County Hospital Rehabilitation, works with Aleks Ostrowski, a 6-year-old with apraxia. (Photo: Enoch Wu/Sentinel-Tribune) Eli McIntosh is enjoying life as a kindergartner at Kenwood Elementary in Bowling Green. So is Aleks Ostrowski, a member of the kindergarten class at St. Aloysius School. Like the other children in their classrooms, Aleks and Eli are learning to read simple words, add simple sums and "work and play well with others." But 6-year-old Eli and Aleks have a special challenge to overcome. Each has a condition called Apraxia of Speech, described by medical professionals as a very challenging and complicated, but little-known, neurological speech disorder. "The kids know what they want to say, but they can't make the mouth form the words," explained Eli's mom, Beth McIntosh, current president of an organization called Northwest Ohio Apraxia Support. "I was one of the parents that started the organization two years ago." The group is now inviting the public to Shake It for a good cause at the Northwest Ohio Apraxia Support Zumbathon, slated for Jan. 31 from 6:30-9:30 p.m. at Perry Field House on the campus of Bowling Green State University. The event will feature multiple Zumba® sessions taught by instructors from all over northwest Ohio. Light refreshments will be served. Participants may arrive any time during the event and dance as little or as much as they'd like. Registration is $15 for the dance only or $25 for dance and T-shirt. All proceeds will benefit NWO Apraxia Support and be utilized to help those impacted by Childhood Apraxia of Speech (CAS) in northwest Ohio. Because CAS makes it difficult or impossible for children to accurately produce sounds, syllables or words despite having a good understanding of language, "it requires frequent and intensive therapy," much of which is not covered by insurance. "Therapy is key," said McIntosh, "because it's a motor planning disorder." Many, if not most, of the children with apraxia also have co-occurring disorders, such as cerebral palsy, Down Syndrome, autism, or anxiety disorder. "It looks very different in different children," McIntosh explained. In Eli's case, his CAS episodes are tied to epilepsy-related seizures. NWO Apraxia Support is a regional non-profit, charitable organization which supports the area families impacted by CAS, and works to raise public awareness. The organization also provides grants to fund supplemental therapies, treatments, activities, or equipment to enhance the lives of individual children with the condition. "I'm so excited that in the past year we've helped 65 therapists, teachers and individual children to get services or equipment not covered by insurance." Grant money has gone to each of the elementary buildings in Bowling Green, Toth Elementary in Perrysburg, the Dusty Boots program in Grand Rapids, Wood County Hospital Rehabilitation, the Wood County Public Library Foundation, Elmwood special education classes, and the Perrysburg-ESC Preschool, among others. Individual children in Bowling Green, Tontogany and Perrysburg have also been helped. Those interested in taking part in the Jan. 31 Zumbathon may register at http://www.firstgiving.com/NWOAS/nwo-apraxia-support-zumbathon or download a paper form at http://www.nwoapraxiasupport.org/ and mail to P.O. Box 800, Bowling Green, Ohio 43402. Contact McIntosh directly at NWOApraxia@gmail.com This e-mail address is being protected from spambots. You need JavaScript enabled to view it or by calling 419-494-9352.

My MS life

In 2003, I was officially diagnosed with MS as  seen thru an MRI which was doctor ordered after I expressed concern to him about my foot drag and the other system events. I did not know the drag was a symptom until my friend Barb at work shared that her sister in law experienced it with her MS. In 1996, I had a case of optic neuritis at which time a neuro-opthamologist in Columbus told me I should have another MRI in several years to check for brain lesion activity. Over those years, other symptoms occurred that my family doctor did not connect to any disease. I had daily visual/aural migraines, trigeminal face pain, tingling in my arm and leg when I bent my head forward and memory/emotional issues. Searching for relief, I had extensive dental work done, went for carpal tunnel testing (negative) and began the use of Prozac for the pain.
After the MRI, I picked up the test results and drove to Norwalk for my first appointment with Dr. Hill, now my neurologist. Those words "lesions consistent with Multiple Sclerosis" are etched in my thoughts. What did I feel? Numb-this was not happening to me. Fear-my oldest brother Larry was bedridden with MS. Relief-finally a diagnosis. Dr. Hill told me I had the relapsing remitting type versus the progressive type like Larry. RRMS was less serious-ha! I might go years with out other related problems. I started a daily injection of Copaxone for 10 years until the pill Aubagio was released in 2013. The Copaxone joined my regimen of drugs I was already using for Rheumatoid Arthritis, another autoimmune disease I experienced  for 14 previous years. Since then , I have learned that many MS people have more than one AI disease. I guess because we are strong enough to handle a lot of pain and change. LOL And have good enough insurance to pay for medicine that costs 10s of thousands of dollars.
Lots of people and "experts " tell me that life will go on and that it can be fruitful. True. But the fact is that I have MS and RA and my life has changed. Every thought and movement reminds me. Not much is automatic. For instance, lots of planning goes into simple hygiene - from avoiding falls in the tub to remembering to look in the mirror to make sure I am properly dressed and groomed. Have you ever forgot to comb your hair, ladies? Going out in public requires watching the sidewalk for hazards since I drag my feet, locating bathrooms and consciously looking at my surroundings since my vision is focused down and my mind is set on my destination. I am easily confused and forget details. Conversation is difficult. If I am interrupted, the thought is gone. When I speak with my daughters and others on the phone, in my head I recount happenings as a list. Fatigue is perhaps the worst part of AI disease. So much energy is expended to accomplish movement and thought that little is left for chores and leisure. 10 minutes is my limit on gardening in the sun. Most of my beautiful flowers are gone. Housekeeping is last on the list (always was) and is done haphazardly when we expect company. The future of my physical (and mental) condition is uncertain so I draw and paint and collect and take opportunities for travel and family. Oh I wrote this the other day and forgot to post. LOL

Books

Jan. 10 2014
Friday

Went to see The Hobbit movie to day. The sets are magical and enchanting. I am amazed by the  paths thru the forests, the ruins of cities, the steps and bridges, the hair on Bilbos feet and that somewhere out there dwarfs and elves and fairies really exist. It is easy to imagine that different time and place where monster Orks live and trees talk. It all reminds me of the Avalon series by Bradley-books that I didn't want to end. Books like that are a treasure.

Reading was always an escape for me. My first book was in the 4th grade. "Shag". The story of a buffalo who survived a plains winter. And so it began. We did not have access then to a lot of books. I read anything- a comic book "The Swiss Family Robinson" and Superman comics and Grit newspapers and church books about "Danny Orliss". Not sure where they came from. When we moved to Willard, I got to go to the library every Saturday morning when we went to the Laundromat. Oh- I was in heaven. I read Nancy Drew and other mysteries, teen romances, Helen Kellers life and other life stories such as Lucretia Mott, Justin Morgan, and Julius Caesar. Then I moved on to "Katherine", Victoria Holt and Phyllis Whitney and To Kill a Mocking Bird, The Scarlet Letter, Lord of the Flies and Les Miserables for high school English class. When I started working, I joined Doubleday Book Club with 4 books free and 6 more to order in a year. I read Gone With the Wind which was a favorite for years. And many more-Deliverance, Far From the Madding Crowd, and Helter Skelter. I went thru a period of historical romances like Sweet Savage Love-who can forget the hot love scenes. Then I found Flannery OConnor, Kathleen Porter, Jane Smiley and Mary Shelley in college literature. I still went to the library and there I discovered Jesse Stuart who led me to a plethora of Kentucky and Appalachian literature. When I bought Pillars of the Earth and saw the size of the book- @700 pages-I was not sure if I was ready to tackle it. When I neared the end, I did not want it to stop. My new favorite book. Imagine my excitement when I found there was a sequel. Other books followed-The Red Tent, The Tall Woman and The Thirteenth Tale. Work and MS soon consumed my personal life. The fatigue and lack of focus hindered my reading. Now I still own my stacks of books and am unable to read because I cant stay focused longer than 2 sentences. I am optimistic tho- just ordered the new Lee Smith book and was able to read a set of 3 diaries written by Zephyr Hord Price who was born in Richmond Twp in the early 1900s. Records of her daily activities soothed my brain.

In a future writing-a list of books Ive read.
 Oh-my resolution from 2013 was to discontinue use of apostrophes.

From grandmothers diary 1966

 

 

To let you know a daily life in 1966 at Burning Fork, Magoffin Co. Kentucky.

 

 

 

 

 

Technology

January 7, 2014

We are still in the deep freeze here in Willard, Ohio. Tomorrow will warm to 13 degrees. I tried the bubbles in the frigid air. They did not freeze as predicted.

Today I am thankful for the technology we now have. Without it, I hate to think how many people would have been harmed in the past days. Using satellites and other radar instruments, meteorologists are able to warn us of storms and hazardous weather almost to the minute.  Also, we are able to Facetime with our daughter and her family in Bowling Green. Like the Jetsons of cartoon fame, we make the call and then see the faces and voices of the recipients- our grandchildren, Ela and Aleks. They wrestle each other over the Ipad. Then Aleks doesn't want to be on camera. And Ela hogs the time they are allowed. She informed us we will need to buy 3 boxes of Girl Scout cookies soon. And Aleks begins to tell jokes. Ela leaves the room to get her joke book then they take turns. Sometimes they both leave to run upstairs for something to show while we wait. It never occurs to them that we might not be there on their return.
Other times we can send messages to be read at their convenience using the Iphone. I like my phone because it keeps me connected when we travel, it gives me directions and lets me play games. Just like my laptop at home. The computer lets me stay in touch with friends and family thru Facebook or email, do my banking, Christmas shopping and order medicine and sell stuff on ebay. Sometimes I wonder what I did before the computer. Lets see-I dealt with paper road maps, I paid the bills by writing checks on Saturday mornings, I made many trips to Mansfield to compare prices and find the right gift and I waited in line hours at Drug Mart to get my meds. If I had not done research on the internet, my MS diagnosis and current medicines could have been too late. So much less paperwork. Distant relatives are found on facebook and some long gone thru Ancestry. I used to use days off to go to the genealogy library in Mansfield to research long dead family. And arrange our family vacation to allow at least a day of research at some distant library or cemetery. Now I can view these online and complete charts easily. I did keep my little notebook of charts though. I can not leave out the photos. My phone camera takes great instant pictures that can be cropped and enhanced right away. And deleted. They can be downloaded to my computer and then used in other programs and saved forever. And with my new wireless printer, there is no reason not to print a few every now and then. I try to save and share old family photos and have thousands on my computer and external drives. And am able to retrieve quickly. Instead of making copies of important documents, I photograph them and save in document files.
Then theres television. We rented a movie to pass the afternoon today. AND we can watch Law and Order 24/7 if we want. Ugg. We use remotes for the heaters and fans and the Bose and to start the car.. Wish there was one to get me out of this chair. Ha!
Years ago, I interviewed for a supervisory job at Pepperidge Farm. One question was "What do you think will be the biggest challenge to the business in the next years?" I replied that the use and knowledge of technological advances would affect the company most. As I see them replacing employee numbers with machinery, I think I was right.
I do need to mention the "1984" aspects of technology. A camera does watch us everywhere we go. And the government listens to our phone conversations. We use numbers for identification that can be stolen. Our food is changed. And the genes in our bodies are mapped. What if your map doesn't look right someday. Will you be discarded?
The world is always changing and we need to go with it sometimes.

Polar Vortex

January 6, 2014
Today has been noisy. The frigid wind has been whipping around the house and causes the siding to crack and pop in resistance to the cold force. Snow plows thump thump by on Rt 61 but do little good at clearing the road. We left our chimes out on the porch; I hear the deep tones of the large pipes playing their tunes. Smaller chimes ring continuously, losing their battle against the wind. I also hear the ching ching of the money leaving my pockets to pay the gas bill for the furnace that clicks on every few minutes. And the loud sudden pops the furnace makes heating then cooling. Even after 40 years here, I still jump at the gunshot sounds.
Today we also hear the little voices of Ricky, Riley and the joyous screams of Vera as she learns to pull herself up to stand at the couch. They spent the day eating, playing, napping and watching tv. The Brady Bunch show held their attention today for awhile. Ricky and Riley couldn't figure out why Bobby wanted to run away from home. And we played restaurant that required the use of the pink refrigerator. Their running in a circle routine is hampered by the chairs I use to block the furnace register that gets hot enough to melt shoes.
Now as the evening progresses, my FB friends begin posting local temps that are -7, -11, -4 with wind chills of 40 below.  Jennifer points out that today it was warmer in Alaska. My brother Roger, from Arizona talks of boating in the sun. Brenda and Kristen comment on how cold it will be in Florida with lows in the 40s. Then I watch the tv weather and learn a new phrase "polar vortex". Sounds like we are in a Stephen King novel. Makes me think of "The Shining" and the massive storm at that hotel. And the weather lady warns of weather quakes. The loud noises and booms I hear tonight might be the earths rapid expansion as it freezes and cracks or a window cracking or even damage to walls or siding. Scary stuff. The softer sounds will be my joints and bones cracking as I try to stand this cold.
The deep freeze is expected to last thru Wednesday. We are in a Level 3 in Huron County. Only emergency road travel is allowed. Schools and businesses are closed. Even Pepperidge Farm, RR Donnelley, and MTD sent employees home today and will be shut down 3 or 4 shifts. Jennifer said Bowling Green is closed also. Leah called to check in and told me that I75 and Rt 25 and Rt 23 in that area and around Toledo were closed. Unheard of. The news says the records from 1994 will be broken. I remember that cold and am thankful to God that Gary and I do not have to get out for work. And that my family is still safe and warm.
Tomorrow, Gary and I will blow bubbles into the cold air to see if they really freeze. And then snuggle under the warm covers. Oh-rain by Friday.

Into 2014

As we are 5 days into 2014, I discovered a blog  with my 2 lonely posts that I started in 2011. I have resolved to post family events and my thoughts here for this year.
I have a number of journals completed over the years that are scattered among my many books. I need to place together so someday my daughters will get to read them. As bait, I will start telling them that I have been hiding money in my large collection of books about Kentucky and Appalachia and in my family and genealogy papers. They will have to spend time in my books and perhaps learn who I really am.
Anyway this will be my journal for 2014.
Today we plan to gear up for a forecasted snowstorm tonight. Will also bring frigid temperatures the next few days. Power outages are anticipated so we will prepare as in past years. The menu is fried chicken and a roast.  And salad fixings. We will have extra drinking water and several containers for a toilet flush or so. Check flashlights and batteries. Still have all those battery operated Christmas candles out. May need to use them finally. Our heat for this 1847 home is a 30" by 30" floor furnace with radiant heat that remains active without power. And our gas grill is ready to go for hamburgers from the freezer. Vehicles are full of gas and phones are charged . We have the situation in hand. The joke in Ohio is about the before storm run on groceries for milk, bread, and toilet paper. We always used to include beer and cigarettes on our lists in the late 70s. Times change.