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#482266 01/05/09 11:46 PM
Joined: Jun 2008
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Amoeba
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Amoeba
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I would love to hear input from anyone regarding topics they would like to discuss in this forum or articles of interest you would like to see on the disabilities site. As I heard someone say the other day there is no i in success! It takes all of us together to make this a useful site to those with disabilities, caregivers and families.

Hope to hear from you soon! grin


Deborah Pipas, Disabilities Editor
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A critical issue for individuals with developmental disabilities and their families is ending the wait list for medicaid waivers, fully funding services and establishing portability of medicaid waivers. To read more about it, see:

Medicaid Waiver Funding Needs Your Vote to be a Priority
http://www.change.org/ideas/view/fully_fund_medicaid_waivers_for_the_developmentally_disabled

The economic crisis will be devastating for vulnerable individuals who have been waiting for underfunded services for years. Programs are being eliminated and caregivers are losing their jobs, health coverage, and savings.

It's looking grim for those who don't even have family looking out for their interests.

Thanks,

Pam W
SE of Seattle

Originally Posted By: Deborah-Disabilities
I would love to hear input from anyone regarding topics they would like to discuss in this forum or articles of interest you would like to see on the disabilities site. As I heard someone say the other day there is no i in success! It takes all of us together to make this a useful site to those with disabilities, caregivers and families.

Hope to hear from you soon! grin


Pamela Wilson - Children with Special Needs Editor
Visit the Children with Special Needs Website
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Amoeba
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Amoeba
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Hi Pam,

I really appreciate your input. That is an excellent topic and I will be working on an article to post on my site on that subject.

I visit your site often and I must commend you on all of the excellent articles you have posted there.


Deborah Pipas, Disabilities Editor
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Amoeba
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Could you address "invisible" disabilities? It's easy to recognize when someone has physical disabilities but my adult daughter suffers from a severe memory problem that has been diagnosed as a disability. She is undergoing medical treatment for a genetic problem as well.

Also, what are the emotional challenges that accompany living with disabilities and how can one overcome them? This diagnosis has been hard on her.

Thank you.

Joined: Jun 2008
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Amoeba
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Amoeba
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Hi,
I will be happy to research and post an article on invisible disabilities. I have a pretty good understanding of this topic as my sister is schizophrenic. I know that is considerably different from your daughters situation however, when my sister is medicated correctly and not in a relapse situation those who do not know her could never imagine she has an illness as serious as schizophrenia. The emotional issues can be tremendous but a good family support system is key. It is not uncommon for all of the family to feel anger, shock, disbelief, depression and sometimes even grief for things people feel they have lost or will lose. One of the tough things about this is that each individual moves through the different feeling at different times. Locating support groups in your local area or online can also be quite helpful. If I may ask, how old is your daughter and how long ago did she receive her diagnosis? Are either one of you readers? If so, I will look for some books that could help with the emotional part and let you know the titles. Has the illness been given a name? You can get a lot of information on the internet about many subjects including the emotional issues surrounding disability. I recently did a book review on a book written by a disabled young man titled Wrestling the Goddess. This is an excellent book to get some insight on how your child may feel now and in the future.
I wish you and your family the very best and I hope to hear from you soon.


Debby


Deborah Pipas, Disabilities Editor
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Thanks so much. She is 20 years old. Even though there were minor symptoms from a young age, the doctors then told us that carriers can't have symptoms so we attributed it to another medical event (she nearly died from a respiratory virus as a preemie.)

She was "normal" (for lack of a better term) in other ways except for her memory. And then as time went on, she began to have increasing problems in other areas. Joint pain, limited range of motion. Now, she has worsening headaches and body pain. Her body appearance is changing. Her limbs are thickening. Her lungs feel tight and she has a hard time breathing at night. Her brain is getting "foggy." These are symptoms of the genetic disorder.

I'll never forget when she was told she had to go into a special day class in elementary school. Wide-eyed, she said, "I'm special ed?" Sometimes, because she forgets, she'll said with surprise, "I have a memory problem?"

She went on to high school where she had friends and even a boyfriend or two for a while. She was a pretty and bright young girl. But then, things began to change. Her personality, her body, etc.

The actual diagnosis only came in about five months ago, just before her 20th birthday. At long last, she/we knew the reason for her problems. She was glad to have a diagnosis, she said, so no one would think she was crazy or making all of this up. No one did. It was obvious there were problems.

Today, she feels depressed because of the symptoms. She says she feels so tired and rotten that she doesn't want to get out of bed. She doesn't want friends or to think about dating or getting married. She does not look forward to the future. No plans. It is so hard on her--and us--because we don't know what the prognosis is. She will be undergoing medical treatment soon and hopefully it will offer some relief. But the doctors say that it will not reverse any damage and it will not lessen any joint pain. It will only possibly keep the disease from progressing (except in the joints). Her lifespan could be shortened but we don't know.

We're getting the medical help we need from a reputable university medical center and a great genetics team. But it doesn't address the emotional side of this.

Thank you for your help and for listening.


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Amoeba
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Amoeba
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Hi,
I am still searching for information that could be useful to you and your daughter. I hope that you will speak with her doctor or someone regarding the depression. Your family is going to need lots of help and encouragement through this situation. One thing I have learned from personal experience and from readers is that "there is life after a disability diagnosis" unfortunately it seems that there is some rough ground you must cross to get to the point of learning how to continue on and enjoy life after such a diagnosis. Please stay in contact with us and let us know how your family is getting along.


Deborah Pipas, Disabilities Editor
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My prayers are with you an yours
My story is almost the same. My depression started at 17
I am 49 now . I never left my bed . I was diagnosed Bi-polar depressiant and given lithuim and a anti-depressent
27 psys .38 counslers and over 44 differnt meds later and i am currently on cymbalta for the aches n pains depression brings
We need to be watched for sucide attemtps and the racing of our minds that dont slow down are unexplainable
I am so tired of hearing we can be dangerous, Any one is. so dont be scared of us and at the same time i really dont want to hear how crazy we are, We already know that feeling. We need support in knowing we are not alone .
I share this disease with folks like Robin williams,patty duke ,red skelton to name a few
YOUR daughter will be fine in a balanced medicine combination
Sometimes it takes a few wrong choice to find the right one
You start getting to know when you ''cycle" in the worst part of the illness -i stress you have her write a journal of her feeling -this should come out an will make her feel so good
Relaxtion tapes and meditation is really good
Include her in everything and everywhere you go . Dont let her sulk in her cloud -I am no doctor either. The mind is a hard thing for even a doctor to figure out
Stress coming on computer an doing like me an trying to guide others to a better place in thought an feelings -helps me
truly hope this helps -i feel like i am dipping in your buisness -but you need to dip in hers
I cannot stress i would not wish this feelling on no one
The pain of this is enivitable, its the suffering thats optional .Please make options available
hugs and hug her for me -i am here for her God Bless
sablelulu


sablelulu
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Amoeba
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Amoeba
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Thanks sablelulu for all of your kind words to the previous poster. Taking the time to encourage others that we don't know can be one of our greatest gifts. I really like what you said about the pain being unavoidable but the suffering is optional.



Deborah Pipas, Disabilities Editor
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I am happy to say that President-elect Barack Obama and VP-elect Joe Biden are supporting several changes for People With Disabilities (PWD). During the past 2 years, they have asked for input from the general public about what the important issues are. There are proposed changes to better support health care options, for special education, for more affordable housing, for better community based supports--including providing services to more people, for more access for PWD for affordable, accessible transportation, and several more issues. We can also celebrate that Social Security has hired more judges and the wait to qualify for Social Security for people with disabilies will no longer be about 2 years. There is also a push for less litigation in order to get Social Security.

This is a very exciting time. Today we will watch as Barack Obama becomes the President of the Unites States. We are also seeing a new Congress that intends to put aside party differences in favor of making our country a more positive place to be. And, for the first time in years, I do not think that we will see changes in rules for affordable housing and for obtaining Social Services that cause PWD to have less discretionary income every year. I think we will also see some great changes in the medical realm--hopefully a far more fair and accessible healthcare system and more research dollars for what are called "orphan drugs"--drugs that will benefit target illnesses and conditions that do not have a high incidence in the general public. I am hoping that we will also see a return to no co-pays for health care for people who live at or below the poverty line.

I can hardly wait for the ceremonies today. They are the symbol of positive changes in our future whether disabled or able-bodied.

Kathy

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Thank you for caring, sablelulu. I have encouraged my daughter to write and blog maybe about her thoughts and feelings. She is a sweet and quiet girl so I thought getting her thoughts out would help. I was a little shocked though because she likes to write and read horror fiction. It kind of scares me.

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