Friday, May 25, 2018

Physical Therapy

I went for my follow-up two weeks ago with my Neurologist Neurologist Nurse Practitioner. She started asking me questions. Most of the answers were on my chart. Anyway, she said they were concerned about my falling and balance. I reminded her that before and after the Ritalin and Welbutrin, I didn't fall a lot and my balance, well I have Cerebral Palsy. DUH! (Okay, I left out the duh verbally.)

She insisted I see a Physical Therapist to help with my balance, get orthotics and some kind of percussion vest since I have a history of pneumonia.  I haven't had pneumonia in ages. Probably because I take the pneumonia shot. So to make her happy I agreed to be evaluated by the PT.

The staff and PT were awesome. However, when the PT came get me she was walking behind me with her arms out on both sides of me to catch me if I fell. It made me uncomfortable. I told her don't do that. She said, "I just want to catch you if you fall." I asked her to stop and told her if I fell I would just get back up. She backed off a little.

I really like my PT and I know she was just concerned.

After a slew of questions, she tested me. I laughed at some things and I have to admit I gave her trouble until she told me she was testing my balance and risk of falling. 

Here are a few tests of many: 

She made me stand up from sitting with and without the support of my hands  I was able to stand with support no problem. Without using my hands I did it but it was unstable. No surprise to me.  Sometimes if I stand up from my couch or bed I'll fall back down two or three times until I finally find my balance.

She made me stand with my feet close together and stay still. I was not to move. That was a challenge because I kept moving. I would sway. Then I had to do it with my eyes closed. That was funny but it makes you realize how important your sight is to balance. I kept swaying.

Another test was walking up steps. There were three steps. She told me to walk up the steps without holding the rail. Yikes! I felt iffy but determined. I went up one step fumbled, regained my balance and walked up the other and so on with same results. Then she told me to walk down the steps. That was fairly easy. Of course, when I got down to the bottom and stopped I woobled but I didn't' fall.

I had to stand up and lift each leg. That was hilarious. That didn't go so well but I didn't fall.

She told me my ankle tendons were tight and could be a factor in my balance. "SIGH" When I was a child I had the surgery to lengthen the tendons to loosen them.

I was sitting while she was putting things in the computer. All of my life I have been able to put my foot a certain way on the floor and my leg will shake. I can stop it anytime I want.  It's not because I'm nervous, it's just something I've done all my life. It is sorta habit sometimes but it feels good.

She informed me it was clonus and not do that. My next post will be about that subject and I promise it will be very soon.

All in all, she said I was at Medium risk for falling. Actually, I thought it would be high.  She suggested I visit her twice a week for six weeks. I grudgingly agreed.

Today is the end of my second week. I realize I can walk backward. Slowly and carefully. PT has benefited me a little. Most of it I think that it just been my life for 55 years. But I understand that since I'm older (If I hear that word one more time I'm gonna scream!) I'm prone to broken bones or serious injury if I do fall. It's frustrating to hear professionals tell me what they THINK they know about me. They just read the paperwork, if they actually DO read it, that I have Cerebral Palsy. They assume things because I have CP that doesn't pertain to me.

I was so tired last week because I was running around working on another project plus PT. I'm not used to being on the go 2-3 times a week. Last week was 4 days.

I will fulfill my promise I'll go six weeks but I will be done. I may take some exercises to strengthen my muscles etc but I shall go along with my life like I've always done.

Oh! My PT didn't think I needed a vest. Thank you very much! I already have orthotics in my shoes. They asked if I had any assistive devices. I told them I had walker from surgery but it is in my junk room.  I refuse to get any canes or other things like that. Now if they suggest a scooter to go around the yard I would certainly go for that but she said no.

Until next time, tell someone you love them.

Word count: 888

Tuesday, April 24, 2018

Team Effort

In December, I received a letter from Medicare that they would no longer pay for Nuvigil or Provigil for me because I did not have narcolepsy, shift work sleep apnea or obstructive sleep apnea.

I have taken this drug for many years to help with my excessive daytime sleepiness.

I went through the appeal process but I was denied every time. My pulmonologist who is also certified in sleep disorders also wrote a letter to Medicare and they continued to deny it.

I went 2 weeks without my medication and I was listless, sleepy, unfocused, depressed and in a fog. I looked online to see if I could get help but I did not qualify. I searched a few online pharmacies but I was afraid to trust them and sometimes the cost was just as expensive.

In the meantime, I went to my family doctor for leg cramps. If you've been a follower you know I have spastic/ataxic cerebral palsy. If you have just begun following me, well now you know. 😃 I've dealt with cramps all my life. However, they have become worse to where it nearly made me cry. Cramps would wake me up and had sleepless nights walking them out during the night. I had been on Xanax for years for cramps but they obviously stopped working. She did blood work and my electrolytes and iron were abnormal so she had me drinking Gatorade and taking iron pills. But cramps continued although follow up blood work showed potassium and electrolytes were fine.

I also mentioned to her about my dilemma with my excessive daytime sleepiness medication. She referred me to a neurologist who also specializes in sleep disorders. It was a few weeks to wait for my appointment.

In desperation, I went to my pharmacy and asked if they could help me in decreasing the price from $600/month until I saw the neurologist. They sympathized with me and they gave me a really nice discount. I thanked them graciously but I did not want to put them in a hole either. They are a  Good Neighbor Pharmacy in my small little town. I actually cried when they told me the special price for me.  I thanked them and told them they had no idea how appreciative and thankful I was. The assistant came and hugged me and said it was okay. That's what they were there for, to help customers.

You would never get that from chain pharmacies such as CVS, Walgreens or Walmart.

When my neurologist appointment finally arrived I liked him and his staff immediately. They were proficient, nice and understanding.

He prescribed Valium at night for my cramps. He said he gave it to his patients with Cerebral Palsy with cramps like I do. Thank God it worked. My cramps are a lot less.

He started me on Ritalin for the excessive daytime sleepiness. It worked some but after 3 hours I crashed and it zapped my appetite. I made myself eat but I was beginning to lose weight.  I had worked so hard to get to 90 lbs. I struggled for 1 month or so. It just wasn't working for me.

I called his office and he changed the Ritlan to Wellbutrin. Although Wellbutrin is mainly used for depression it does help some people suffering from excessive daytime sleepiness.

Not me! Ironically, I became depressed. I felt that black hole swallowing me up. I was sleepy and felt useless all of the time. I was also falling and my balance was worse. I tried for a few months before I called the neurologist again because I know some medications take a while to get into your system.

Although I felt like a pest, I notified his office. They were concerned with my depression and falling as was my husband. As I waited for a callback, I decided to make a Plan B for in case they couldn't help me.

I contacted my pharmacy again and asked them what would be the maximum price they could give me without putting themselves in the hole selling me the Provigil without insurance. I was thinking I could handle up to $150. It would be tight but it would be worth it. They gave me a very nice price I could work with. Bless their hearts.

A few hours later my doctor's nurse called and said they called Medicare and they approved it. A few minutes later my pharmacy called and said it was approved. I thanked them and told them I appreciated the hard work they did. When I went to pick up my medication I hugged the pharmacist. They told me it was a team effort with the doctor and them. About 4 days later I received a letter from Medicare stating that the drug has been approved and the prior authorization is good until 2019, then it will have to be prior authorized again. 

The day I took my Provigil I became myself again. I am functional, not falling, alert, awake and happy.

I'm trying to think of what I could give to my pharmacist and neurologist and staff as a token of appreciation for their hard work and team effort. I know they say it is their job and it is what they're there for but I want to show them how appreciative and thankful I am. I'm thinking of a small fruit basket with a thank you note. Everyone should like fruit right? 

Do you have any other suggestions?

Thanks for still following my inconsistent blog. I do appreciate all of you.

Until next time...Be thankful for your health and the medical team who cares for you!

828 words

Thursday, January 25, 2018


Hello everyone!

I don't think I've written this year. Sorry about that.  I was going through medical issues (like that is anything different ha!), my meds had to be changed and I don't think the new meds are working after second switch.

Anyway, I've been wanting to do yoga for a while.  I did yoga many years ago but then I moved and couldn't find anything that fitted my budget, convenient time and close to my home.

At the beginning of the year I have been searching and I found one. It is about 24 miles in a little town called Breaux Bridge. The price I can handle and there was an 8:30 am session. I emailed the owner telling her my limitations and inquired if I should try the 8:30 am one which is called Slow Flow Yoga. In the description it says it is intermediate/advanced but beginners are welcome. They provided mats. At this point I'm just paying per session.

My sister and mother goes to yoga in my childhood home town and she said theirs were cheaper but others she talked to was like mine and varied. I looked at many yoga places and the prices are outrageous and the times sucked.

Today, I went to my first session. The instructor Raven was really nice. I giggled in my head when she said to wiggle my toes or roll my feet. It just won't happen. Some movements were hard to do
because of my pins in my legs and neck. Some I couldn't do but I just did the best I could.

Although I'm a little sore I feel better. She said the schedule changes monthly so that might be a problem for me but I'm optimistic. If I continue to go I will improve. Of course with my spasticity it may take a little longer but I will get better as I continue.

I have so much more to write about other things. I'm trying folks.

Until next time ponder this quote from the movie "Wonder", now my favorite movie of all time, because I relate to his experiences being "different' from others.

Who is it that I aspire to be? That is the question that we should be asking ourselves all the time. 
                                                                                                                       Mr. Browne

Friday, December 22, 2017

Movies I Watched Lately.

Unless you've been under a rock lately the new Star Wars movie is in theaters. 

I've watched all of the Star War movies. The first one premiered in 1977. I went with friends, although Sci-Fi movies are not my favorite movies. It seemed everyone wanted to watch it so the curiosity got the best of me.

Through the years I watched every one of them. Not necessarily when they came out but I eventually saw all of them.

I found out really quick that MyHubby was into Star Wars and Star Trek so I've gone alone with him to watch them. In return he endures the Chick flics I like to watch. (Its really not that bad for me Ha)

Yesterday, we went see Star Wars: The Last Jedi. I get confused who is who. What can I say? I am getting old. At least I know who the main characters are, right?  I like the story line and the fighting etc. But what I love the most are the cute characters: 



Wise Sweet Yoda


Last week or so we watched Wonder on KODI. It is a heart warming story based on a best seller book of the same name about a young boy with facial differences called Treacher Collins Syndrome.  He is the sweetest and smartest little boy who can be an inspiration to us all. I think every kid should see this movie as well as adults.  This is my kind of movie!

Auggie, the boy is played by Jacob Tremblay. Julia Roberts plays the mother, Isabel. Owen Wilson plays Auggie's father Nate and his sister is Via played by Isabel Vidovic.

Some of my favorite quotes (and there are many) from WONDER the movie are:

“You’re going to feel like you’ve all alone but you’re not.” – Nate

"If you don’t like where you are, picture where you want to be.” – Auggie

"When given the choice between being right or kind, choose kind.” – A precept taught by Mr. Browne in class

"You are not ugly Auggie… Because I’m your mom it counts the most because I know you the most.” – Isabel

"You can’t blend in when you were born to stand out.” – Auggie’s sister Via, played by Isabel Vidovic (The sister was so awesome saying that.)

"We all have marks on our face.  This is the map that shows where we’ve been and it’s never, ever ugly.” – Isabel

What evil man created dodgeball?” – Auggie    (I so can relate to him on this)
I don't want to overwhelm you with ALL the quotes I love. I may make a full list on another page.

Have you watched either of these movies? What do you think about them? Out of thee quotes does one speak to you?

Thanks for dropping by..

Merry Christmas!!

Until next kind

Wednesday, December 13, 2017

Here's a Little Inspiration: Explore Your Faith For Any Religion

I found this in Acadiana Catholic booklet. BUT you do NOT have to be Catholic to get something out of this. Please read and share your thoughts. It was sponsored by a local dentistry. I think Christmas time is 

Explore Your Faith

I am flat broke from overspending at Christmas time, but I need to go shopping again soon because I am completely out of self-respect.  I've said things I wish I could take back and I am not feeling too good about myself.

I also want to exchange a cart of self righteousness for an equal amount of humility. I hear that it is less expensive and wears well,  and while I'm at it I'm going to check on tolerance and see if there is any available in my size.

I must remember to try to match my patience with the little I have left. My neighbor is loaded with it and it looks awfully good on her. I was told the same department has a repair shop. for mending integrity. Mine has become frayed around the edges from too much compromise.  If I don't get it refurbished soon. there won't be any left.

I almost forgot the most important thing of all-- compassion. If I see some, no matter what the color, size or shape I'm going to stock up heavily regardless of the price.  I have run out of it so many times and I always feel ashamed when it happens.

I don't know why it has taken me so long to get around the shopping for these items. They don't cost nearly as much as some of the  frivolous things  I've bought for Christmastime, and I'll get a lot more satisfaction from them.

Yes, I'm going shopping today, and I can leave my checkbook and credit cards at home. The things I'm looking for have no price tags--what a joy.

I love this. I think it sends s a great message. 

Do you have any inspiration quotes, poems or thoughts? I'd love to hear.

Until next time...during the season of excitement waiting for Jesus'   birthday when you pass someone as you shop, say Merry Christmas and smile!