The frustrations of spending 8 hours alone with your 87 yr old Grandmother

I know its been a long time since I posted last but that's because not much has been happening and I felt I kept repeating myself and it was getting shorter and shorter, but I have something to write about tonight.
This weekend I went to stay with my aunt because my aide wanted to go away for the weekend and I rather not be alone for an entire weekend without help. My 87 yr old Grandmother lives with my Aunt and Saturday my Aunt had a funeral to go to so I was there alone with my Grandmother for 8 hours as the funeral was a good drive away!!
Those who really know me knows that without a computer and a TV I feel as though I'm back in the Little House on the Prairie days!! LOL
On Saturday my Aunt left about 1:00 for the funeral, right after she left thier Satilite Dish got screwed up and that was the longest 8 hours of my life!! Don't get me wrong I love my Grandma dearly but at times I think she's living in the past when I was 10!!
It's really challenging trying to reason with or talk to an older person, its as if they are going through the toddler stages all over again.
You know its really sad because I'm remembering my Grandma from 20 yrs ago when she was full of life and not so confused at times!!

This will be short and sweet tonight

Today I'm pretty tired and feeling a bit negative. So tonight I want to show you what my status on Facebook is. I guess I wrote this hoping peopIe understand that at times I go through phases where I just don't have the energy to deal with certain things and to know that I'm not always like this. I guess it also stems from the 2nd half of my day yesterday, so here it is "I might be in a wheelchair, but you shouldn't judge a person on their outside until you get to know them, for what they are on the inside. I just want to be accepted for who I am and for what I have accomplished so far in my life"!! :) I promise tomorrow's entry will be more possitive and happy!!! :)

I started my day out good and ended frustrated!!!

It was hard getting up with the time change this morning!! I felt as though I was getting up at 5:30 instead of 6:30!!! I know its not much difference but I appreciate that extra hour sleep!!! :) I have such awesome people in my life here in Virginia. For a couple of weeks now my tires on my power wheelchair have been getting low (they are filled with air). The bus company that transports me to ECHO and to doctor appointments told me to have ECHO bring me up to thier shop where they repair the vans and they would give me some air for them.So I went up there and they gave me some air!! The rest of the day was good until I got home. There was a call from my evening aide calling in!! This is becoming a pattern, every other Monday she calls in. When I interviewed her for the job she told me her kids wouldn't interfere with her work and everytime she calls in it has something to do with her kids!!! It's very hard to find good help!! From the words of a very dear from who says: "This to shall pass"!! I have to keep reminding myself of this!!

Have an awesome day my friends!!! :)

What a beautiful Saturday!!!!!!!

I think Spring is right around the corner. The sun is shining here in Floyd County today and I just love it!! I can't believe that we change the clocks ahead an hour tonight, it seems early this year!!

As I gear up for Spring I look forward to the increasingly longer days where it stays daylight longer each day, I look forward to our Spring Special Olympics Games at Radford University and ECHO (my Day program) I attend is heading to Washington, DC in May!!! We will be going to the White House, Capital Hill where they sign the different Bills, and some other sights around Washington!!

So as I sit here on this sunny Saturday it makes me think of whats to come!!

Have an awesome weekend my followers and don't forget to "Spring Ahead" tonight or you'll be late for church or any plans you may have tomorrow!! :)

Go sit at the doctors office for 2 or 3 hours, I think not!!!!

This morning I had a doctor appointment for a 6 month check up. When I went in a lady waiting for her appointment said that there was a 2 or 3 hour wait!!! She said there was an emergency and someone almost chopped thier fingers off!! Well gee if you almost chop your fingers off wouldn't you head for the ER?

My aide was with me and I told her to go ahead and reschedule me another appointment, I wasn't about ready to wait that long, besides the music in the waiting room was elevator music and I don't do elavator music!! :) So we made me another appointment for April 1st. Good thing I'm not supersticious it being April Fools Day or I'm in trouble!! So I get up this morning to take a 3 minute ride from my apartment to the doctors and for what, to come right back home again!!!

I haven't updated my Blog since Sunday, nothing much going on lately. I'm continuing to go to PT, OT and ECHO. Once again it's raining outside pretty hard yesterday and today but I guess we need the rain to see the Spring flowers bloom in another month or so!!!

Have a great day everyone!! :)

Lots and lots of rain outside but plenty of sunshine inside my apartment

This morning I heard the pouring rain as I layed in bed and I was thinking to myself, do I really want to get up? I decided no I think I'll stay in my warm bed and listen to the rain. When I did get up my phone rang, it was from a special dear friend who came over to visit me. As we sat there catching up I could feel the sunshine all around us and in our hearts!! It was a fantastic day even though it was pouring outside.

Now tonight I'm getting excited to see my Sunday evening shows "Army Wives" and a new show called "Coming Home" "Coming Home" is about men and women who are serving thier Country and they come home to surprise thier loved ones. It looks good but at the same time looks like a tear jerker!!

I hope everyone has a great coming week!! :)

March is Cerebral Palsy Awareness month

Today starts Cerebral Palsy Awareness month. Cerebral Palsy effects 1 in every 200-400 births. Currently there are approximately 800,000 children and adults living with this non progressive disability, with 10,000 babies being born/diagnosed every year.

Since getting a computer years ago I've joined some online support groups for parents with kids that have Cerebral Palsy and since joining Facebook I've met even more parents with kids that have Cerebral Palsy. All of my 50 years of having CP I thought I knew all there was about it but you know after talking to my new friends and after reading thier posts and Blogs I keep learning more and more. I always had the traditional physical therapy with the stretching and learning how to me more independent through getting therapy. Also when I was very young like 2 or 3 yrs old I got a type of therapy called Patterning. My mom and dad had volunteers come to our house to help with this type of therapy that they did twice a day, once in the morning and once in the evening. Since they didn't have video cameras back then I did a search on Youtube and found a child being patterning and here it is http://www.youtube.com/watch?v=x15SyJda32Y&NR=1 The idea behind this is to get the child used to certain movements like crawling.

And what I'm learning today is about new methods of therapies, one is the Anat Baniel Method here is a video of a child doing this type of therapy http://www.youtube.com/watch?v=izCF1puNo24&NR=1 and another type is suit therapy which is pretty interesting is the suit therapy http://www.youtube.com/watch?v=i76Ytl6jOKU

So as you can see over the years therapies for CP are changing. Mine was the old time method with the heavy metal braces that made me feel like I was carrying around big heavy weights! My braces were like the kind Tom Hanks ran out of in "Forrest Gump".

I just Pray one day no babies will be born with CP, until then we just do everything we can to improve and maintain the quality of life for children and adults with CP. I know my life with CP isn't easy at times but for the most part I'm living a happy, successful life with my everyday challenges.

Have a great weekend everyone!! :)

Change is hard but we have to move on and make the best of it

As I sit here typing this I have to be reminded God never gives you more than you can handle!! I went to PT this morning, and after I came home I had a message on my answering machine, it was the supervisor of our ECHO Program asking me to give her a call back so I did. She informed that a staff person for ECHO no longer works there as of yesterday. It really sadden me but instead of worrying about my feeling I was worried about my friends and how they were handling it. Being the type of program that ECHO is its very easy to get attached to the staff. Because it being a mental health support program we trust them with our deepest thoughts and things we would never tell anyone else. When I got evaluated for mental health services a few years ago my very first support person had a daughter with CP so she truly understood me and I told her things I wouldn't even tell my Mother. She became more of a friend so when I was removed from her case load 3 years ago I felt as though I lost my best support and my 3rd shoulder. So today as I heard this it brought back all kinds of thoughts of that awful day when she told me this was our last visit together. This staff member that left yesterday really helped the guys of the group, because this staff member was a guy too and was a good support system for them too. Tommorrow I'll go to ECHO with an extra ear and shoulder and share my story of 3 years ago and let them know that yes it will take to feel better but they will get through this!!

Hump Day is about to end!!!

I can't believe Wednesday is almost over, where has the week gone?? I went to PT this morning, I got stretched then they put these air pumps on my legs to help reduce the swelling in them. It felt pretty good. At first it felt as though I was getting my blood pressure taken in my legs!! It would blow it up and then slowly let the air out it was pretty cool!! When I had my gullbladder taken out a few years back they had them on my legs they were afraid of blood clots happening. Tomorrow we'll do more vigorous stuff, laying over a ball and sitting on a bolster and some other things like that!!
After PT was over I went to ECHO in time for lunch. After lunch we played UNO ATTACK, and then we walked across the street to a mini mall for some frozen yogurt. I swear that Mall should be called the Virginia Tech Mall because about 99% of the people that go there are college kids!!
Something humorous, tonight after I had my shower my aide helped me put my shoes on well she did that but they were on the wrong feet, I felt like a duck!! LOL Well my friends I hope you all have a great evening I'll catch you again tomorrow evening. Love and Hugs to you all!!

Rainy Monday leads to a sunny Tuesday!!!

Yesterday we had heavy, heavy rains here in Virginia most of the day and today it was sunny and beautiful!!

I woke up this morning thinking about what my day would be like. My bus came for me at 7:40am this morning. From here in Floyd where I live to Blacksburg where ECHO is its about a 45 minute to an hour drive. The first Tuesday of each month we have a med group, well its more like a support discussion group to discuss different things pertaining to Mental Health. After that ECHO took us out to pick up lunch. I had something I haven't had since leaving PA, I had a pretzel sandwich which had turkey and cheese in it, it was really good!! After lunch we headed to Petco, I love seeing the kitties and seeing dogs visiting. I think its so awesome there's a store where you can take your dog along!!

After my day at ECHO I came home tired and exhausted but it was a good tired. I'm going to close for tonight to veg and watch some TV and to rest because it starts all over again tomorrow with PT!!!

Have an awesome Tuesday tomorrow!!

Reflections of my life

In 1960 my dad was in the US Navy he was stationed in San Diego, California. As he was boarding his ship to go out to sea someone ran up and told him that his wife, my Mom was in labor. He ran off the ship and ran right to the Naval hospital. My Mother’s labor pains came on very, very quickly, so quickly she didn’t make it to the delivery room she gave birth to me in the hospitals hallway!! She was in Labor for only 5 minutes!! This was in October and I was supposed to be born in December. The fact that I was 2 months premature and that I came out so quickly I stopped breathing for a few minutes and that’s what caused my Cerebral Palsy. I have spastic/hemiplegic CP meaning I don’t have the use of my right side and my muscles are spastic and stiff and I use a wheelchair to get around. My parents didn’t learn about my CP until I was about 9 months old when I wasn’t doing normal things that a 9 month old does plus I was having lots of seizures. My parents were very young in their late teens, scared to death and not knowing what to expect, they were kids themselves.

After my Dad finished is duty in the Navy we headed back East to Pennsylvania. When I was preschool age I went to a preschool through the Easter Seals Society in our area. Through Easter Seals my parents received counseling to learn how to deal with my disability. Someone at the Easter Seals told about a residential school for CP kids that they thought would help me tremendously and I would receive intensive PT, OT and SLP 3 to 4 hours a day 5 days a week. I went there at 5yrs old until I was 8 yrs old. I couldn’t do a thing for myself like dress or feed myself. I also didn’t have the ability to sit, crawl or walk. When my parents dropped me off the school told my parents its best if they didn’t return for a month so that I would adjust to being there. Upon their return to visit me they had me walk down the hall to my parents! My mom told me she cried like a baby to see me walking. I can remember very clearly I hated PT I would cry and cry and cry, but you know what, to this day I am so grateful they pushed me and wouldn’t let my bawling stop them. So any parents reading this with young kids who hate getting therapies it will pay off in many rewards never under estimate your angels they will surprise you in many ways like I surprised my parents.

After High School I went to live at a facility in PA for adults with CP. It was founded by a preschool teacher of mine and it was her dream to have a place for her “kids” as she called us to live when the parents got to old to care for their adult kids. Here’s the website www.margaretemoul.org. It was here I gained my greatest independence in my adult years. I moved in there not knowing what was to come of my future. Thoughts of will I be there all of my life and what will I do without my parents? I found out I flourished and grew in many ways. After living there for 27 years of my life I wanted to give independent living a try, so in 2007 with the help of my Aunt I moved to Virginia to be close to her. I have 2 aides who come into my apartment to help me with personal needs, house cleaning, errand running and other various things It was scary at first but shortly after moving here I started receiving mental health supports through an agency here in VA. I say mental health because I suffer with depression and anxiety and through the program I’m in they help me with problem solving and they help me with things like medical appointments, phone calling, or anything else I may need help with. Through this agency I also go to a day program through the week for socialization and we go on outings like to the Mall or out to eat

Through the years things have changed for the better for kids and adults with disabilities. Back in the 60’s and 70’s we didn’t have handicapped parking, ramps going into buildings, accessible restrooms with grab bars, and most importantly the ADA laws plus we didn’t realize things could be better and we dealt with not having the things listed above, it was like oh, OK I can’t go in there because there’s steps. As we reached the 80’s, and 90’s I felt as though WOW all this for me?? LOL Now if I see a building not accessible it makes me mad and frustrated, it’s like come on people catch up with the times!!
In closing I want to say I’m 50 yrs old with CP living a happy, healthy life and with the supports from family, friends and God I’ll go far. Everyday I think what new adventure can I get into now, who can I help in return of having so many people help me over the years!!
God Bless and thank you for letting me take the time to share my life with whoever sees this!!