I will answer any question about what it's like to live with a disability etc

United States
March 10, 2011 4:07pm CST
Hello everyone, My name is Millie, and I joined mylot yesterday. I have cerebral palsy and use a motorized wheelchair to get around. I'm sure there are many people who wonder what it's like to live with cerebral palsy. so this is your opportunity to ask. You may ask me any question you would like to about what my life is like, what it's like for me to live with my disability, et cetera, and I will answer each one as honestly as I can. There is absolutely nothing that is off limits. You may ask absolutely any question. I look forward to answering them. :-) Millie
3 people like this
6 responses
10 Mar 11
Hi Millie welcome to mylot,I often wonder how others manage with cerebral palsy as i have 5 kids and 3 have multiple disabilities but my son who is now 17 was born 10 weeks early and he has right hemiplegia(cerebral palsy down one side for those who dont know}I feel that we have to fight for everything for him and always have had to from schooling statements,to help and socailizing with others with similar disabilities he does also suffer from aspergers syndrome{high functioning autism}and for the last year he has had epilepsy due to someone throughing a basketball at his head it caused over 600 fits in 3 days he is now epileptic i no he was at a higher risk to epilepsy due to being born premature and the cerebral palsy but i feel that hes had things so tough.How have you found life?socailizing?hobbies etc and getting help you need?they wouldnt even give my son a social worker.
@daeckardt (6237)
• United States
11 Mar 11
Hi housechaos, It sounds like you have your hands full! I had a younger sister who was born at least that early (possibly more?) and she was never able to do anything. She was in a home most of her life. Being born in the 60's it was recommended that she be placed in a home since we were a rough lot (she was number 5 of 6) and once they realized that my youngest sister was out-crawling her two years later, they placed her in a home. I am familiar with aspergers syndrome as I found out in 2003 that I had it. I had found out in 1996 that I had ADHD and tourette syndrome, a quarter before I finally graduated from college. It is hard to believe how much better things are for people now than when I was growing up. I could have been so much better if I had been born 30 years later. Oh well...I hope your family is doing well! Have a great week!
@yoyo1198 (3641)
• United States
10 Mar 11
Hello, millie, and welcome to myLot. Back in my working days (I had to retire due to osteoarthritis and 2 hip replacements) I worked for a management company that had multiple group homes for the physically and developmentally disabled persons. So I helped care for several persons with cerebral palsy. Some had the w/c as you described and some were still in the process of getting one. I don't have any questions about the cp itself, but about you and how you are managing with it. How do you manage in using the computer; keyboard, mouse, etc? Are you living with someone who can assist you with your daily activities? Are you able to get into the kitchen and make your meals? I remember that I helped my clients with learning to cook and once they learned the basics they could pretty well manage with little assist. What do you like to do with your time? That's enough for a start, I suppose. Hope to see more of you around myLot. Please be sure to read the guidelines and FAQ's which will help you with discussions and responses. But, with this discussion, it looks like you're doing right well.
1 person likes this
• United States
11 Mar 11
Hi yoyo and Housechaos, I live in Minnesota USA, in an apartment complex that ia geared towards people with disabilities such as mine. We have staff on duty 24 hours a day to help us with our daily needs such as getting dressed, meal prep, showers and so on, but they're not constantly with us. Each of our apartments are equipped with call cords that can be used to call staff if there's something that we need. I'm able to use the keyboard of my computer without too much difficulty as the type of cerebral palsy that I have is called spastic quadreplegia. This means that all four of my limbs are affected, but my legs are affected more severely than my arms and hands. I have a lot of hobbies. These include reading, surfing the internet, music, and watching movies. I also like to shop, as I suspect most women do lol.
@daeckardt (6237)
• United States
11 Mar 11
I worked at a group home like that once. I found it very interesting, but most of the clients I worked with had more behavior problems that physical disabilities. None of the homes I worked in had wheelchairs. Another time I worked in a large facility where about half of the clients were in wheelchairs, but they were all the old fashioned kind. I don't think they had many of the mechanized ones back in the 70's, or did they? I really wish I could work with that population again, but because of my age and my own disabilities, I don't think that would be an option any more unless it was just to be a companion. Have a great weekend!
11 Mar 11
Hi I was wondering if you were born premature and born with the cp or not and at what age you were diagnosed my son wasnt diagnosed until he was 9 months old
• United States
11 Mar 11
Hi, I was diagnosed with cp at the age of a year and a half.
@cansasct (39)
• United States
11 Mar 11
I have a special place in my heart for those with Cerebral Palsy, my sister has a mild form, as does my cousin and they have struggled with it. They have to try harder at everything they do, and I know that at times they must feel funny, because of the way people look at them and stare. I personally don't feel it's good manners to stare at people with disabilities, as I wouldn't want them staring at me if the tables were turned. I feel that they deserve much appreciation, such good people they are. I think they are an inspiration to everyone. Alot of times, they go on to do some awesome things, and I might add, they are great at making friends! Bless you, Millie!
• United States
11 Mar 11
Awww, thank you cansact.....I don't like it when adults stare, but I don't mind when children stare as they are naturally curious and may not have seen anyone with a disability before.
@flapiz (22425)
• United Kingdom
20 Mar 11
Hello Millie! First of all I would like to welcome you to myLot :) Well, I was going to ask if you go to a regular school or a special school? And also what are some medical needs and interventions of a person with cerebral palsy? I am a nursing student by the way, so I'd be really glad to know it first hand from you :)
• United States
20 Mar 11
Hello, Thank you for the welcome. Since there are different types of cp, every case is different. In my case, I had three different hip surgeries at the ages of 3, 13, and 15. I was also able to go to a regular school.
@flapiz (22425)
• United Kingdom
21 Mar 11
Wow millie, you must be really tough to enjoy all those surgeries. And that is really an admirable courage you've got. Nice meeting you.
@bonding2 (219)
• South Africa
5 Apr 12
Hi Millie , you must be a hard worker considering that you started yesterday, can you please briefly in one sentence tell me what cerebral palsy is all about , i have heard a lot about it