Thanks for sharing this, Bruce. It's heartbreaking to think that anyone in a care facility could be so misunderstood. This illustrates how much of a difference one caring person can make! Because of this caregiver's interest in learning more about KD, she will be able to give her patient more individualized care, and also educate her co-workers, so that they can also give this patient better care. Fantastic!

Kudos to the caregiver! My husband & I had a similar experience when he had surgery to implant his pacemaker. After the surgery he was required to lie flat for 18 hours and the nurse kept insisting that he eat or drink something to keep his strength up. We kept telling her (and the doctors) that he had KD and swallowing was very difficult under normal situations and virtually impossible while lying flat. We finally had to tell her that she had a choice...either leave him alone for the 18 hours with the promise that when he was allowed to sit up he would be happy to try to eat and drink something or have my husband risk getting a blood clot from choking to death due to the fact you want him to eat/drink while lying down. She finally left us alone. But, not to bash the nursing profession entirely, when my husband ended up having to return to the hospital a few days after he was discharged due to a complication from the surgery, the nurse that took care of him during that visit was most attentive and when whe explained about his disease and the possibility of choking, she immediatly obtained a piece of equipment that sat on his bedside table "just in case" that would be used to suction out anything that became lodged in his airway. She really did what was necessary to acknowledge his concerns and helped him feel more at ease.

I work in a health care facility and we have been discussing ways to help patients feel more comfortable during their stay. I would like to share this post with some of the staff...just to increase their awareness of not only patients that may have KD, but the needs or concerns of any patient that may enter into their facility.

Frustration

Sometimes I become frustrated because I want to help more, but are limited in the ways I can help (provide assistance) for a variety of reasons. Example:

A woman from Georgia moved to a foreign country to marry a gentleman. A couple of years after their marriage he was diagnosed with Kennedy's Disease. After five years in this country, they have decided to move back to her home in Georgia. Since she is a U.S. citizen, there is no issue for her. Her husband, however, now in his mid-40's, is not a U.S. citizen and our State Department is refusing to issue him a visa because he has Kennedy's Disease and, in their opinion, will be a drain on our welfare system. Even though the couple have a home, car, and bank account in Georgia, it does not matter. Because they do not have jobs here in the States and health insurance coverage, he is considered a possible welfare case.

She has written many letters, provided information from his neurologist, and even hired an attorney, but there always seems to be some catch that the State Department adds before they will issue a visa. They have told her that she can come back to the States and after she has a job and health insurance, she can reapply for her husband's visa. As you can imagine, she is not crazy about leaving him behind.

I won't go into the details, because that isn't important in this post. I will say that I wrote the State Department on her behalf explaining that people with KD live long, productive lives and are often as healthy or healthier than the average person. I also said that since there is no treatment or cure, the degree of medical attention required because of his condition is minimal. I went on to mention that since KD does not impact the cognitive ability of the individual, that there are many jobs perfectly suited for a person with this health condition. In closing, I gave them our KDA website address and asked them to contact me if they had additional questions or concerns concerning KD.

This is a round-about way of getting to the point of the post. Often, people judge other people based upon their looks and physical capabilities. A wheelchair, nasal voice, drooping mouth, or inability to walk normally (you get the idea), can create a wrong impression in some people. They do not see the individual, they see the condition.

I am hoping the couple mentioned above can resolve this issue with our State Department so they can come back to the U.S. I also hope that the person(s) denying the visa learn something positive through their handing of this case.

I often use the term 'Spinal Bulbar Muscular Atrophy' when describing my health condition because the word 'disease' takes on a different meaning to many people ... like something contagious. Perhaps it is just my perception of the word.

Bruce, it sounds like you've done a great deal to help this couple! Gee, I wonder how willing the State Dept. would be to hire either one of them with the economy the way it is; how can they expect her to just go out and get a job and then to find one that offers health insurance too!

You do make a valid point about people's perception of "Kennedy's Disease". After reading your post, I agree, it might be more prudent to use the term "Spinal Bulbar Muscular Atrophy" at least at first, before using the term Kennedy's Disease. Then refer others to the web site for more info.

Thanks for the info! I'll pass it to my husband.

Facebook Update

Have you visited the Cause page recently? The Monties developed the page and there is already 95 friends and over $400 in donations. If you haven't been to the page recently, take a look by following the link below. Note: I also posted this in the Facebook Cause topic.

KDA Cause Page in Facebook

The last time I checked, I did't see anything for Kennedys...but there was a Facebook Cause for MDA. My daughter signed up for that one because she didn't see one for Kennedys. I became concerned because if you read the fine print on joining causes, it allows all your friends profile info to be sent as well unless they've changed that since I last checked. That made me a little uncomfortable because even if I wanted to join a cause, doesn't necessarily mean my Facebook friends would want their profile information sent to that same cause. I was trying to respect their privacy. I'll have to check into it further! Thanks!

hello again.

my father has KD i cope by putting on a front when i am upset i don't let my feelings show. people know me as a bubbly happy spirited girl when really im always worried about my dad. im such a daddys girl and hate seeing him the way he is. my family does not talk about it at all and the issue gets pushed away when i try say something about it or ask a question. i am so happy that i have joined this site and i am alraedy finding it helpfull that i have people i can talk to now as i can't talk to my family. i can't talk to my friends because they don't know what i am going through and there is only so much they can do and i was shocked when i went to my school guidance councellor and she wanted to send me to a social worker. but she also told me i should look for a website and i found this one. so thankful for that.

Georgia, welcome to the KDA. I am so pleased that you shared your thoughts and concerns. The KDA has over 900 associates and 2/3rds of them have the defective gene. Most of the other third are caregivers, spouses, and children of those with KD.

This forum is an excellent venue to express your thoughts, concerns, frustrations, and fears. Most everyone dealing with KD in their lives occasionally need to reach out or just express those fears/frustrations/concerns.

I believe KD is often as devastating to the family as it is to the individual with KD. Seeing someone you love dearly going through it is a helpless feeling.

In my opinion, I would encourage you to continue to try to talk with your father. He might not be ready to discuss it yet, but he needs to know that you are concerned. He can help remove some of those concerns. I would be interested in what others reading this topic feel about discussing this with your father.

The good news about KD is that those of us who have it normally live long, productive lives. We learn how to cope as the disease progresses. We learn that there is life after being diagnosed with KD.

In closing, I would just say that you should not let people shut you out. You need to know about the disease and how it is impacting your father's and family's life. Often, talking about the disease is the best therapy for everyone.

Georgia, please let us know how we can help.
Bruce

Hi Georgia!

I have two daughters (age 13 and 10), and I have been diagnosed with KD for about 2.5 years. I have had a lot of discussions with my daughters and I know they feel the same way you do. My 13 year old daughter would be interested in speaking with you if you are interested. I know she would benefit greatly being able to connect with someone close to her age that can relate to how she feels and share concerns. My contact info can be found on the Kennedy's Disease Association Web site under the Stepping out of the Shadows – Support Groups, Individuals Exhibiting Symptoms. I will provide your information to her and have her get in touch, if you are interested.

Electrical Muscle/Nerve Stimulation

One of our associates in the United Kingdom has been using Electrical Muscle/Nerve Stimulation (EMNS) combined with a daily exercise regiment. He just wrote us to provide an update on how the therapy and exercise program is going.

Over the last two months he has seen an improvement in his walking and standing. He feels he is better today than he was two years ago. I have asked him to keep me appraised of his program. He also thought it would be a good idea to have a doctor very familiar with KD to discuss the potential benefits/concerns of using EMNS with an expert in this field. I will consult with our SRB to see if there is any interest.

Has anyone else had any experience with EMNS?

This reply is for Georgia. Welcome to our site Georgia! My husband has KD and we have three children (two daughters and a son). I'm sure they are much older than you (they are 37, 28, and 21); but they have told us they are very thankful that we have shared what information we do know of this disease with them. My husband feels our children should know as much as possible about this disease to help them make decisions that will not only affect our lives but theirs as well. They are well aware of my husband limitations but they are also aware of his continued determination and the new ways he has found to accomplish many things that have to be done as well as things he still likes to do!

This website has been very helpful and I'm glad your counselor suggested you contact a social worker or look for information on your own.

My husband had a difficult time after he found out he had KD and it took a long time for him to accept it. Maybe your Dad has similar feelings and doesn't feel comfortable talking about it yet. Try to be patient and supportive and by all means, if you need someone to talk to and you still feel you can't talk to your parents, please take the advice of your school counselor and talk to a school social worker and show them the information you have found about this disease. Maybe the Social Worker will be able to help both you and your parents learn about this disease together. Of course, you know we'll be here for you as well! :0)

hello all.

thank you so much for your support. paul i would be more then happy to talk with your daughter. if she has an email she can email me on gjdramaqueen@hotmail.com as my other email is broken so i am using my old one..
i have taken your advice and have spoken to my father but he told me the things i already knew and pushed aside questions that i wanted to know.. i think maybe he doesn't want to hurt me but i will feel better to know then to still wonder about things

Hi Georgia,

I have been reading your posts to these forums with much interest. I have 8 children, two biological and the rest step or adopted. My daughter is 17 and my son is 15. In our family, my son is very concerned about my health and welfare. It bothers him a great deal to see my difficulties and challenges. He was with me at Walmart the first time I fell in public and could not get up. He often worries, but I try to help him understand that SBMA is not the end of my life or my world. I try to answer all of his questions honestly. But, I know that sometimes he thinks I am just trying to make him feel better and worry less.

My daughter on the other hand is a very private person and does not like to talk about her worries or feelings. Her approach to life is "this is the situation, talking won't change it so just deal." This is very hard for me. I want to talk to her. I want to know what is going on inside her head and heart. I want to advise her on issues that she will deal with as a teen, a young woman, and on into maturity. So, for me, having your posts on this site are a true blessing and I welcome you. I believe that as you get advice and answers from us, we will get insights into how to help our children and families.

Thank you for your courage.

Indiana jim i fully understand how your daughter feels and only recently have i decided to talk to people about it. Unfortunately yes this is the situation and it wont change no matter how much we talk but it does help to talk as i now know and i feel much happier being able to talk to such a wide lovley group of people. Talking to her may be hard but just let her know that if she wants to know anything she can always come to you. let your kids know how you feel about everything. that is one thing my father has not done and something i would really like to know.
if you feel as though your daughter or son would be want to talk to someone experiencing the same this and is at their age group let them know i am willing to help.

regards
georgia

I am reading with great interest all of the recent posts. It is wonderful to have so many step up and offer to help or at least listen and support.

We have the KDA chat room available for anyone interested in chatting live with one another. It is an excellent tool and can be used by as few as two or as many as fifty. Consider using this resource for sharing your thoughts and concerns. It is only scheduled for use right now the 1st, 2nd, and 3rd Saturdays of each month from 10:00-11:45 AM Eastern Time. The rest of the time it is available.