URL: http://www.angelfire.com/wa/Carmy/index.html

Hector Saenz writes:

My name is Hector Saenz. I am a 52 year old person with cerebral palsy. I'm married (non-disbaled) and have a daughter 11. I work for the Federal Government and am very active in community affairs. I'm always on the go and have had a vry good life. I don't feel that persons with CP are as bad off as persons with polio. As you know,persons with polio suffer from post-polio syndrome. I, on the other hand, am like wine: I get bettr with age.

Thanks, Hector. It doesn't have a formal syndrome, but the whole point of this page is that for some people things get worse as we get old faster than for the average bear because of our CP.

roscop72b writes:

My friend Richard is in his 50's and has cp affecting his right leg and arm. Having cut back to part time work the past few years he has increased excercise such as swimming and stationary bycycling. He finds his co-ordination improved and seeks some organization doing research on older cp people and their rehab possibilities . anyone hear of such research being done anywhere?

Email: roscop72b@hotmail.com

Try Salvin's site

Salvin Ficara writes:

Hello everyone. I am continuing to work on a proposal to do a pilot study to identify behaviors which delay or prevent the onset of secondary disabilites in adults with CP and related conditions. In the process of doing my research I have pondered some thoughts I'd like to share.

Firstly, it is becoming very clear to me that the most important factor in insuring that you get the most out of your medical care is to self advocate. You need to be prepared to ask questions regarding your conditon when you visit your doctor. Use the net to do research relating to whatever problems you may be experiencing. Don''t be afraid to talk about your findings with your doctor. Ask for second opinions. find out what kinds of non-invasive alternatives to drugs and surguries may be available to address whatever issue you are facing. Make a point of discussing these with your doctor. Do your best to be an intellegent medical consumer. Over the years I have found that health professionals that have a backround in sports medicine have been more helpful in maintaining my level of function. They seem to be very good at recommemding appropriate excercise programs to address issues of range of motion which I have faced. I realize this may not apply to all persons with CP, but I hope my perpective is helpful.

I edited a few typos. One comment on Web research: there is a lot of godd info out there, but remember what someone once said about meeting people online:

"It's like men in Alaska: the odds are good, but the goods are odd."

What i mean is be sure your sources on the Web are reliable.

Email:
Salvin_Ficara@spfldcol.edu

URL:
U.S. Sports and Fitness Center for the Disabled General Information -The Programs

Herschel writes:

I am a 40 years old, I am having the same problems that you are. I can't sit,ride in a car. I am getting very frustrated I can't make my body move like when I was younger. Nobody told me this was going to happen.

kathy writes:

I'm fifty yrs.old and and walk outside with crutches. I'm not as agile as I was, but I do keep moving,my Dr. feels also that exercise is important and so do I. What ever you do just don't sit. Just thought I'd pass on my Dr.'s advice

Philip writes:

I am 50 years old. I have severe athetoid cerebral palsy. I have dystonia and spasticity. In 1984, I had a spinal fusion and in 1989 I was completely paralyzed from the neck down due to a stroke. However, I have regained 99% of the functional capacity that I lost.

On the positive side, I am doing volunteer work at the Univ. of Conn. Health Center in Farmington, CT. I help people get around the building. I've been doing this since 1981 five days a week.

This is a great web site! I want to thank you for your site. I hope to visit again soon!

Paul writes:

I have a Three year old Daughter with Spastic Cerebral palsy and Hydrocephaulas and severe Pancreatic problems. I have watched her struggle sometimes to survive and have wondered how long she would be with us considering her strugles in staying alive . When my wife & I were first told of the many problems that she had we were also told that it was probable that she would not last into her Teens which saddens me greatly as part of me says go and the other part says can't you please get better. I have noticed that there is quite an age range of other CP Sufferers and very much hope that I will see my Daughter grow up , but in the meantine she is my little Girl, who smiles and laughs when you talk to her or tickle her and I would'nt swap that for the world . I wish that more information was given to expectant Mother's about Pre-Eclampsia and the heat and the associated risks to these conditions then we would be making a Larger step for mankind. Thank you.

MetalTiger writes

I am 48, and my theory accompianied by experience is exercise (traditional, weight training and areobic walking accompianied by a movement method called the Feldenkrais Method. I have found the latter to be most beneficial. From what I understand many PTS are also Feldenkrais Practitioners. For those that are interested, here is the Link for your further research - http://www.feldenkrais.com

Julian writes

I just encountered your section on cp and aging. I am 45 years old with cp and I am experiencing many of the same symptoms described by others. I can especially relate to Carmen. Having been married for almost 20 years, last Nov I left my wife and 3 kids behind as I no longer felt respect as a husband or father, or that I was measuring up to their expectations. Their response to my leaving only confirmed my worst fears. My physical and emotional challenges now present themselves greater than ever before in my life. I need to hear from people to help me with the adaptations I must make to meet these challenges. I hope that this message finds itself to be of some comfort to others like myself and that I hear from them.

e-mail: jwbodnar@sk.sympatico.ca

Julian: as usual I de-capped your submission..

Ruthanne writes:

I am a 58 year old female with CP. I have noticed a variety of changes in my CP lately. I was able to walk in my 20's with a 1person assist, but now am confined to a wheelchair. I have not noticed any changes in my hand, arm or speech functioning, which was always affected. I am finding that I have more pain and spasms in my lower extremities now than in the past. I suspect that this may be caused by the immobility of the wheelchair. I always wore glasses, but have now joined those hundreds of of people who require a hearing aid.

I believe that the changes that I have are normal age-related changes, but are accelerated by the CP.

Elizabeth Magnette writes:

I am a 21 year old female with "mild" spastic cp. I have always been active and live life to the fullest. At times it is very easy to forget that I have CP. However, in the past few months I've experienced extreme fatigue, speech patterns have worsened, and overall I feel as if I am regressing. Doctors believe that i may be experiencing " Epson Seizures????" Which I have never experienced any form of seizure in the past. If there is anyone who can relate or offer some info, please let me know. Thank You! :) :)

I tried a few searches with no luck

Mintaze Kerem writes:

I am a pediatric physiotherapist in Hacettepe University and lecturer in the school of Phsical Therapy and Rehalitation. I work in the Cerebral Palsy rehabilitation department. I have an interest all pediatric neurologic diseases.

URL:
http://www.abone.superonline.com/cpalsy

I've already linked to this page. Thanks again, Mintaze.

Judy Williams writes:

I am 59 years old and have lived with C.P my whole life. As a child I dreamed of becoming a clown. After I became an adult my dream was fullfilled. My clown name is Joker and I have a puppet with C.P. Perserverance pays off. I am fortunate to live independently and have a job. I am a receptionist in a rehabilitation hospital.

Neat!

Adrienne writes:

I am a 22 year old that has CP. I'm always fighting with my parents because they think I can't do it. My CP affects my entire right side. I walk but falling more often as time goes by. I'm hoping as I surf the net,I'll find more info on CP. Thank you for letting me come in here. God Bless everyone!

"I get up. I walk. I fall down.
Meanwhile, I keep dancing."

--unattributed quote from the Engaged Bhuddist Dharma page

Mirell Guglielmi writes

Yes, always as a therapist, I recommend people to get massages as by oriental medicine, concentrating on muscles, as much as possible and as "good" as possible, never stop. It does help yes indeed, at least to feel better "inside". Also be helped by Flower Essences. Keep in touch just in case I need to explain more/better.

E-mail: guglielmi@trycomm.com.br

Salvin Ficara writes

Hi, anybody out there interested in becoming a CP athlete and have a chance to compete on a local, national or international level, possibly the sydney paralympics in the year 2000? age and functional ability are not an issue. there are events for ambulatory to power chair users. for more information, get into a search engine and type united states cerebral palsy athletic association. You can also E-mail me salvin_ficara@spfldcol.edu

P.S. we are looking for more masters division folks(I.E. age 40 and over) might be a good way to address the aging thing.

June Kailes writes:

[ two new pages]
Health, Wellness and Aging with Disability
Resources of Managed Care for People with disabilities

Lawrence Samkoff writes:

I am pleased to announce the opening of the Comprehensive Center for Adults with Cerebral Palsy at the NYU-Hospital for Joint Diseases in New York City. The center will be staffed by a multidisciplinary team of physicians, nurses, and allied health professionals. We hope to focus our efforts to manage and study the changing neurologic-musculoskeletal disorders that affect adults with CP. Appointments for consultation may be made at 212-598-2798.Lawrence Samkoff, MD

Email:
lsamkoff@pipeline.com

Karen Thomas writes:

Hi, My name is Karen Thomas and I have mild spastic CP. I am 25 years old and often feel alone in the world because of my disability. But now I have change my views.You see not long ago I met someone with CP who drove a car. I have always wanted to learn how to drive but because of my CP I gave up. But now I seen someone with mild CP driving. I am going to try and get my license. Also as I am getting older I have been getting a lot of knee pain as well as some times I feel so tired and week. Please write and say if you feel this way. CP. don't give up.

Laura writes:

Hi I'm a 44 yo, wife, mother of 3 teens, and was a RN for nearly 18 years in hospital settings. I think I had mild CP. My left side is weaker and less coordinated and I have a speech impediment. I was main-streamed throughout my life and really did quite well because of a strong spirit and determination. In college you can imagine the nursing teachers had never met anyone like me, but nothing could deter me. With a BS in nursing, I spent over half my career as a charge nurse!!! I was so career oriented, so I didn't marry until 26 to a wonderful man who only sees my strengths. Life was like a dream --- hard work and lots of love. Now please realize I've also dealt with back pain since rupturing a disc while in college, but as a nurse, I learned never complain. 3 years ago I required a L5-S1 Spinal Fusion and life began to change. I believe the fusion and my CP exacerbated each other!!! I now can't believe the increased weakness, fatigue, spasms, muscle tightning! , AND MOST OF ALL---- ALL MY JOINTS ACHE to the point I am on class 4 narcotics!!!

I guess what I'm looking for is someone to talk to who can relate. I feel like I'm in the middle of a cruel joke. I still exercise in the pool at the spa and attend a Bible class, but I'm finding it harder and harder to relate to the "normal" world in which I've always been a part of. My husband and kids cope very well and I make sure there is laughter in the house. I'm now trying a Chronic Pain Support Group, Any suggestions to age more gracefully would beappreciated.

I get tired when I sit too long, so any suggestions of web sites that are better than others would help. OH, the doctor and her Neurologist need information because they know nothing about CP and I've let them try a few drugs like Baclofen and Zanaflex, but I can't tolerate them. I've done the best with Soma for muscle tightness and spasms or Valium and then oxycotin and vicodin for pain. And of course an anti-depressant.

Madeline Sacha writes:

I have a brother with CP and he is 11 and I will like to know what would cause death and what's the everage age that kids with CP die? Can anyone answer me please.

CP is not particularly fatal...e.g I am 53. UCP has a fact sheet on death and cp, but I haven't listed it here before because I didn't find it much help.

susan writes:

I'm a 22 yr old female that has cp . I've had it since i was born. It effects my right side and my back hurts. Contact me with help tips at NIACS@USA.NET Thank you.

Sharon writes:

I've had CP since birth 52 yrs. ago. I was also born with a scoliosis (curvature of the spine). Oh, mine is the spastic, athetoid type, use a wheelchair, have limited use of 1 hand/arm, but I've lived as "normal" (whatever that means) a life as possible. God's been good to me during these yrs. & continues as I now have 2 parttime caregivers helping me w/the ADL things in MY apt. Joe & I married in '90, I was diagnosed with breast cancer 6 months later, reecovered, then had a slight stroke a bit over a yr. afterward. We're divorced and have been over 3 yrs. now, but LIFE GOES ON.It's good & MY life...God said!.

Kay writes:

Hi! I am the mother of a 21 yr. old son with CP. He is very disabled and the last year I have really watched him decline. He has a trach and is completely tube fed now. He is having so much pain in his back from severe scoliosis now and there just doesn't seem to be much we can do. The surgery is so risky and he has already had 27 operations.I am so afraid of losing him. Sometimes it is so hard to put him to bed at night because I am afraid he may not wake up. We are very close and i have taken care of him by myself for all these years. Fortunately he is a happy fellow with lots of smiles and silly ways. I have truly been blessed with this wonderful person. Thought you would like to hear about him.

Kathy writes:
I am the daughter of CP parents. Mom is 69, dad is 70. My mother has had recent problems that we can't seem to find answers for. Her condition has become much worse in the last 4 to 5 months. A lot more difficultly in walking, a lot more jerky, leg pains she never had before. She has always been very self sufficient, and that is no longer the case. She just had an angiogram yesterday, and her heart is fine. I was almost hoping they would find something, so we would have an answer to why she is so much worse.I am not sure what to do....take her to a neurologist or an orthopedic doctor? I know that it is possible that this is part of "her" aging, but, I want to be sure that we are not dealing with a medical problem that possibly has a solution. I would appreciate any info to steer me in the right direction. We live in Missouri. -Kathy
Send me mail

Wanda writes:
I have cerebral palsy, And I was wondering if they have tried using the pressure chamber on adults, Are do they only do this pressure chamber on kids. If you could find out would you please contact me at. my email addreess
Sincerely. Wanda Moser

Nicky George writes:
My Boyfriend Nicholas Lawson is Spastic up the Right side of his body, he has trouble with movement but that dosen't stop him ,he goes out everyday to uni and then works a 5 Hour shift and Safeway Mornington, i am so proud at him and i love him very much, he is my special guy.

Kimberly Craft writes:
I have a daughter with Cerebal Palsey, she just had surgery less then a year ago to have a bacoflen pump put in and what a wonderful improvement. Ashley was diagnosed with CP at 6 months old they told me she would never walk,talk, or even learn. She has suprised everyone: she goes to a regular school and does everthing that a normal child does except walk. I have a wonderful story that I would love to be able to share with others. No one could ever imagine the special kind of love this child has taught me.
Email me.

a few minor edits...

Barbara Byrne writes:
My name is Barbara Byrne and I reside in Northern Virginia. My sister, Colleen, who is 31 and has cerebral palsy, lives in North Carolina. She currently has her own apartment and has a home health aide visit her for 4 hours per day 7 days a week. The aide does laundry, prepares meals, drives her to appointments and the grocery store in Colleen's conversion van, stands at the ready while Colleen takes her shower in case she slips and is also a companion of sorts.

Unfortunately, most of the home health aide services that we have contracted with send unreliable people to Colleen. Either they are late, or have to leave early, are dishonest or nosey, don't show, need extended time off or have any one of a myriad of problems.

I am trying to find an assisted living facility that can accomodate her needs as well as her youth. All of the assisted living facilities that I have located have most of the amenities that we are looking for but are for the elderly. Do you have any suggestions on where we can go for help or quidance on this matter? Below you will find our "wish list" for her future living environment.

1. an assistend environment where someone is on hand in case of emergencies, to run errands, to prepare meals, assist in physical therapy, to assist in tying show laces and minor hands-on support and to be nearby during Colleen's shower in case of emergency.
2. a youthful environment were there are other people of her age group. Possible ages 21 years of age and older.
3. a social environment where planned activities are available but not mandatory
4. transportation that is readily available that can accomodate her wheelchair or "scooter".

Colleen is fairly independent and only wants to become more so. She is not looking for a restricted environment. Again, any help you can send me would be wonderful!Thank you!

Barbara A. Byrne
7940 Blue Gray Circle
Manassas, VA
20109
703-331-0119 (home)
703-368-2030 (work)
(work email)
(personal email)

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Opinions expressed here are personal and do not reflect the views of Spatial Technology.

Last updated March 23, 1998
Copyright © Pierre Malraison All rights reserved.

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