Things Nobody Tells You

It was one month ago today that we received the news we had been waiting for since January. Robert's application for SSDI was approved. Definitely news that is worth celebrating. However, there are things that nobody tells you about being approved. Things we have had to learn on the fly. 

The first one is when you actually receive your check each month. We assumed that you would receive a check around the third of the month like most people do with Social Security Retirement. That is incorrect. The day you receive your check is based on your birthday. So, Robert will be getting paid on the third Wednesday of the month. While in the long run, it doesn't make must of a difference, it is useful information. For us, it affects how we manage our budget each month. 

The second piece of information that we were not aware of pertains to taxes. Depending on your income, you may or may not have to pay taxes on your benefits. Robert's sister and brother have not had to pay taxes on their benefits because their monthly income is less than the taxable portion. However, if you notice below, for married couples, if the spouse is working, as a couple they will most likely have to pay taxes on the disability. 

You do have the option of having taxes deducted from your check each month if you would like. For some, this is beneficial to help from having that big tax bill at the end of each year. Either way, this is information that everybody needs to be aware of. 

The third piece of information is that you can actually do some limited work while on disability.  However, there are some restrictions. 

In other words, you can go work at Walmart as a greeter part-time if you want. I think this is one that really matters. For someone like Robert, having the ability to do something simple every day will be so helpful. While he will not be your neighborhood Walmart greeter, he does have some options to do things he already knows how to do. This will give him a purpose each day and a reason to get out of bed. Plus, it will help that part work ethic part of him that still exists. It makes him feel like he is helping to contribute to our household income. This all in turn helps him mentally as well. A person's mental state matters more than a lot of people realize so having something like this that will help is extremely helpful.

This journey is far from over. We continue to learn new things each day. As always, I will endeavor to share what we learn to help others navigate this world that is Social Security Disability. 

Is No News Really Good News?

An update on our application for disability benefits, such as it is. 

If it normally takes about 170 days, we should have our results around August 6th, just over two months away. Based on when they first started the application to the progression today, it looks like things are right in line with that timeline. Since they do not provide any real information, though, until the final determination has been bad, we have no real idea what is really going on. Robert and I are not the most patient of people so the waiting game is frustrating.  

At least we know that progress is being made and we have no new requests for more information. So, does that mean they don't need any more information? Does this mean the information they have provided is enough to make a favorable decision? Is not hearing anything a good or bad thing?

Nobody really knows the answer but the person who has been assigned to Robert's request. So, we continue to wait until we hear more information. There is not much else that we can do. We go about our lives as we have been since we first filed the application and continue to pray for God's favor and a ruling beneficial to us. 

My Favorites

There are so many resources that can be found on line about Huntington's Disease. Some are simply informational. Some provide resources and contact information for doctors, support groups and much more. Some are simply blogs like this one about people that are dealing with the exact same thing as my family. Here are my favorites.

The most important one is the Huntington's Disease Society of America website. This website is jam packed with information about the disease, where to find help in your area and even resources - including webinars - for the caregiver for an HD person. I am a frequent visitor to this site. In addition, I also like the Greater North Texas HDSA website. This one is for the local HDSA chapter in the North Texas area that has information about the happenings in my area. There are many other chapters and affiliates throughout the country. To find one in your area, choose chapters and affiliates from the About HDSA drop down on the home page of the Huntington's Disease Society of America website. It will ask you to enter your zip code and show you the closest chapter to you.

Another one for news and information about the disease is HD Buzz. The website's motto is Huntington's Disease Research News - in plain language, written by scientists, for the global HD Community. In other words, they take the important news out there about Huntington's Disease and put it in to words that you and I can understand. They don't use those big scientific words that we have no clue how to pronounce or what they mean. They even have a weekly newsletter that you can subscribe to for emails about the latest and greatest news. Or, you can get the information via a podcast if that is your preference. This is usually my go to when I see new news about a possible treatment or discovery since it is so much easier to understand.

Another good one is Huntington's Disease Lighthouse. This a website that is created by families with Huntington's Disease for families with Huntington's Disease. It is full of blogs, message, forums and so much more for families that are dealing with Huntington's Disease. It is created by others that are going through the same thing you are and is a good resource when you are looking for somebody to understand what you are going through. Who better than a person that is dealing with the exact same things you are.

We Have a Face is geared at raising the global awareness of Huntington's Disease. They do this using the most state of the art technologies to broaden everybody's awareness and knowledge of Huntington's Disease and even lesser know Juvenile HD.  My favorite thing on their website is the motto: Never give up hope, You are not alone.

The last two on my favorites list are both blogs written by others with Huntington's Disease.

At Risk For Huntington's Disease is written under the pseudonym of Gene Veritas. It is full of information about the writer's life and also updates on some of the new and promising research that is taking place. He also details some of the many happenings in his life. This blog does tend to be lengthy and full of a lot of hard to understand information, but it still very informative.

The other blog, Huntington's Disease and Me is written by a lady named Sarah who identifies herself as being in the early stages of HD. She is actually the one that started the HD Pie in the Face movement last year. Her blogs are more about the day to day life of somebody who is living with HD. She talks about her symptoms and how they affect her day to day life. It is an inside glimpse of what it is like for a person who is showing symptoms and how it affects everything and everyone around her.

These are my favorites. I hope you find at least one of these or any of the many others out there as useful as I do. More than anything, it helps to know there there are resources to help you and that others out there are experiencing the same things that you are.

Feeling All Alone in the HD World

Currently, there are about 30,000 people that have tested positive for Huntington’s Disease in the United States. For a country that has nearly 319 million people, that translates into .00009% of the population. A very small number when you think about it. It is so easy to feel like you are the only family out there living with this diagnosis. It can certainly make you feel all alone.

However, estimates are that there are well over 200,000 people in this world that are at risk of having the disease or are currently unaware they are living with the disease.  That is more than the population of 15 individual states and more than the population of North Dakota, Vermont, Washington DC and Wyoming combined. That number does not include the number of family members that do not have the gene but are affected by this disease in another family member. So, you are not alone, even though it does sometimes feel like you are.

I know I was personally amazed when I found out people I know that were in some way affected by Huntington’s Disease. Given the fact that I had never heard of it prior to my husband, I was quite surprised to learn of how many people affected by this disease are out there. Learning of the others out there going through the exact same things that we have has made it a lot easier to deal with. It has also been such a great help to be able to discuss day to day trials of living with HD with people that really know what you are talking about. People that are dealing with the exact same thing or have been there and done that are a wonderful asset in helping cope with the many issues that can arise from HD.

Where is the best place to find that support, you ask? A support group! Getting involved in our local support group was one of the best things that we have done when it comes to dealing with Huntington’s Disease. It gives us the opportunity to be with others who truly know and understand what it is like to live with Huntington’s Disease as a part of your everyday life. Our support group meets once a month. While we cannot make every meeting because of Robert’s work schedule, we do go to the meetings when his schedule permits. It is always a blessing to be with others dealing with the same things.

How do you find a local support group? Visit the HDSA Local Resources page of the Huntington’s Disease Society of America website. This page has resources for all types of things from Support groups to Therapists and even In-Home Care resources. Here you can choose what you want to find and enter you zip code. It will find the nearest ones to you.

You may think that you don’t need to get involved in the group because you no longer have a family member that has HD or that person does not live near you. I want you to know that is not the case. We have several people in our group that have lost a loved one to the disease or have a family member living in another state that come to our group. We even have friends of people that have been diagnosed with Huntington’s Disease. Each person there has a lot to offer the rest of the group and they also get support from the rest of us as the deal with the many different aspects of having lost a loved one to the disease or being away from that loved one who has it.

So, I strongly encourage you to get involved in a group. It is a great resource as you navigate a world with HD and help eliminate some of that “alone in this world” feeling many can get in world that doesn’t know about Huntington’s Disease.

The Pie in the Face Challenge

There is a new challenge out there that was spawned of the ALS Ice Bucket challenge. Only this one is to raise awareness for HD.

 

First a little about the ALS Ice bucket challenge… the thought process behind the bucket of ice is because it gives you a temporary freezing of the nerves to simulate what a person with ALS feels like all the time. Just a brief second of that feeling can give you a bit of understanding of what a person that is living with ALS deals with.  That short little sample is enough to tell you that you don’t want it and to sympathize with someone that does have it. This is definitely a worthy cause and I applaud the effort to help raise awareness for ALS.

 

When I first heard about the ice bucket challenge, I thought we need something like that for Huntington’s Disease. Especially considering the recognition the ice bucket challenge has gotten. I just couldn’t think of the right thing to do. Since HD can impact each person differently, there is not one way to simulate the feeling of having HD. How best can you make a person feel the uncontrollable chorea that affects a person? How can you simulate the lack of coordination or cognitive ability that can be common of a person battling HD? There really isn’t a way to do that. 

It looks like I wasn’t the only one that was thinking about it, either. A couple of days ago, somebody came up with the Pie in the Face for HD challenge.  It is a fun way to help raise awareness for Huntington’s Disease and to help to wonderful organizations that support people who live with HD.  The challenge: Option #1: Take a pie made out of whip cream in the face and donate $1.00 to the Huntington’s Disease Society of America (HDSA) or WeHaveaFace.org. within 24 hours of being nominated. Option #2 Donate $100 to the Huntington’s Disease Society of America (HDSA) or WeHaveaFace.org. within 24 hours of being nominated. Then nominate up to 5 people to do the same. Post your pictures on You Tube  or the Facebook HD Pie In The Face Challenge page.

 

 

I have an extreme dislike for whip cream. I don’t like the way it tastes and am not a fan of the texture of it, either. I can tolerate in my milk shake if it is mixed up well so that I can’t really taste it, but plain? How can you do that? Well, this is one thing that will make me suck it up and deal. I am all for anything that will raise awareness for Huntington’s Disease. It is a cause that is very near and dear to my heart, after all.  And I will make a donation to the

 

I will tell you that the HDSA funds research for Huntington’s Disease and helps families struggling to survive with HD. They are non-profit organization that is tax deductible. WeHaveAFace.org has the mission simply to raise awareness of the disease by producing a documentary they are putting together to further that effort. They are not a non-profit and so your donation is not tax deductible.  You can chose to support whichever one you choose but Robert and I will be supporting the HDSA.  To donate to the HDSA, visit their webpage. To support WeHaveAFace.org, you can visit We Have a Face to learn how to donate.

 

The coolest thing about this? James Franco has already retweeted it when someone challenged him. Tim McGraw has been challenged, too. I hope it catches on as much as the Ice Bucket Challenge did so that we can raise awareness of this disease and its affects it has on a person. Plus, if it raises money for the HDSA, I am an even happier camper.

 

If you are nominated by me, Robert, or anybody else, I hope you will consider it and take the challenge and nominate your own people. Then, post your video or picture on your Facebook page and on the HD Pie in the Face Facebook page to using #Pieinetheface4HD.  Let’s all raise awareness and some money for Huntington's Disease.

 

Supporting the HDSA and Team Hope

The Huntington's Disease Society of America (HDSA) is a very important part of many families that are dealing with Huntington's Disease. It can be summed up in their tag line "Help for today, Hope for tomorrow". That is what they strive to do. Provide help for those families dealing with HD in the form of education, support groups and research for medications that are helping so many people live with this disease.  Hope comes in the form of continued research in hopes that one day there might be a cure that will end the curse that is Huntington's Disease. They also work to educate the public and medical personnel about this dreaded disease.

What would eventually become the HDSA started as a small group organized by the widow of folk singer Woody Guthrie after he lost his battle to this awful disease. Much research has gone into determining the markers for this disease, where the gene that causes it was located and even discovery of medications that have had significant impact on the life of the person living with HD. A lot of the funding for this research is made possible by the Huntington's Disease Society of America. But, even though a lot of research has yielded a lot of useful information and the formation of many drugs, we haven't found a way to end the spread of this disease. So, there is still a lot of work to do. Still a lot of research that needs to be done. Still a lot of drug trials that need to be conducted. The HDSA needs the help and support of others to make these things a reality.

To help fund the research and support they provide to families is by hosting a walks across the country. The Dallas/Fort Worth area walk is taking place on October 19th this year. Would you consider sponsoring Cheryl's Kids and the HDSA in their continuing effort to provide Help for Today, Hope for Tomorrow. You can sponsoring us by making a donation at Cheryl's Kids. With your help we might one day put an end to this disease that has had an affect on so many of our family.

 

Huntington's Disease Awareness - Why It Matters

Over the last couple of years, May has become a very important month to me. It is the month that has been designated as Huntington's Disease Awareness month. The goal is to raise awareness of the disease and how it affects not only the person with the diagnosis but also the family and friends around them. Because awareness of the disease matters.

This is something that is very close to my heart and the hearts of many of my family members because we are that group that is living with Huntington's Disease as a day - to - day reality of our lives. It may not be something that has an obvious impact on what I do every day, but it is there, constantly in the background of my thoughts. It is the reality of being in love with someone who carries around a positive diagnosis of Huntington's Disease.

One thing that makes all of this hard is the lack of knowledge that so many people have of Huntington's Disease. As I have always said, I know that better than anybody because I was one of them until Robert walked in to my life almost 11 years ago. When he first told me about it, I had no clue what it was. I had never heard of it before. So, I get the blank stares. I was one of them. But we need to change that. We need to raise awareness of this disease so that others know about it; so that others are aware of it and what it means. Raising awareness and knowledge about HD is important to help gain understanding of what the people or going through.

My knowledge of HD has changed how I view a lot of things around me. For one, when I see that person who looks like they are stumbling around like they are drunk, I wonder if that is really the case. Many people with HD appear to be drunk without a drop of alcohol in them. Prior to 1993, it was much more difficult to test for HD and many people were often misdiagnosed with other issues. The limited amount of knowledge about the disease and difficult testing and diagnosis of the HD gene. So, many people were walking around without the knowledge of HD. Understanding how the disease can affect a person matters.

Plus, even now, when we know so much about it, there is still a lot of the unknown.  It is hard to receive proper treatment for the symptoms a person faces. It is very hard to find a doctor that specializes or has adequate knowledge on how to treat an HD patient. In a previous blog, I talked about how Robert was given a medication to treat symptoms of HD when it wasn't even HD. If this first neurologist that he went to had more knowledge of HD, she might have understood that what he was experiencing had nothing to do with HD. Luckily we have been able to find a more experience neurologist in our area through recommendations of people in our support group. But, not everybody is as fortunate to live in an area that has a truly knowledge doctor. Raising awareness for doctors and teaching them about HD so they can adequately treat patients matters.

So, I hope that you will take a moment to read What is Huntington's Disease or visit The Huntington's Disease Society of America website and learn a little bit more about Huntington's Disease. To find a cure, we have to educate the world so they can understand. To help friends understand what Robert's family is going through, they have to be educate.  May is Huntington's Disease Awareness month and I want to make everyone aware of why this matters - not only to me and Robert but to the nearly 30,000 in the United States that have been given an HD diagnosis and their families as well. The impact of this disease is felt on so many more than just that those 30,000 that have been diagnosed.

 

 

What Does Fast Track Status From the FDA Mean for You and Me?

A few days ago, the Food and Drug Administration (FDA) granted fast track status to a new potential drug to help people with Huntington's Disease.  This drug currently named as OMS824 is an inhibitor that can help to suppress one of the enzymes in the brain that has been linked to Huntington's Disease. That got me excited. And makes me wonder what exactly that means. Thank you Google for making it easier to research and find the answers.


The FDA's Fast Track program designates a drug as a fast track drug "if it is intended, whether alone or in combination with one or more drugs, for the treatment of a serious or life-threatening disease or condition AND it demonstrates the potential to address unmet medical needs for such a disease or condition." according to the FDA's website. We have already established that HD is a serious and life-threatening disease for which there is no cure. So, it meets the first criteria for Fast Track Status. In initial tests, OMS824 has shown to effectively inhibit the production of an enzyme that is linked to HD. That sounds like it meets a current unmet need for those living with HD. So, thank you to the FDA for realizing this and granting Fast Track Status.


The fast track designation means that it is given more access to the FDA for the sole purpose of speeding up the development of the drug. There is more interaction with FDA review team for the product including more frequent meetings to discuss the development of the drug and more communications from the FDA about the design of the trails and what can and cannot be used.


In a nutshell, from what I have been able to find out, is that a fast track designation will make it easier for the company that is developing the potential drug to interact with the FDA and make sure it is meeting and maintaining all of the appropriate criteria to allow continued development of the drug. So, it might speed up the whole process of getting this new drug tested and to market if the clinical trails are as successful as everyone hopes.


It can still take a few years for all of this to happen but it may be even closer than we think. I think it also means that science is getting closer and I am really hopeful of seeing something to end this horrific disease in my lifetime. 

The HDSA and Team Hope

The Huntington's Disease Society of America (HDSA) is the largest non-profit organization dedicated to improving the lives of all who are affected by Huntington's Disease. Not just the gene-positive person, but the gene-negative family members and friends, too. There mission is to provide "help for today and hope for tomorrow" by promoting and supporting research and medical research to end HD and to assist those affected by HD to cope with the problems the disease brings. They also strive to educate health organizations and professionals and the general public about the disease. The HDSA is dedicated to provide the family services, education, advocacy and research that will help those affected today and also hope for a cure tomorrow for those family.

The HDSA is a 501(c)(3) organization that was originally founded by folk singer Woody Guthrie's wife - Marjorie Guthrie. Marjorie began seeking other families that had been affected by this dreadful disease soon after she lost her husband to HD. This lead to the Committee to Combat Huntington's Disease created in 1967 by a handful of volunteers. Later becoming the HDSA, the organization continues the mission she started with 54 community based volunteer chapters and a national office that provides leadership, support and guidance to the families of Huntington's Disease.

This support and guidance is provided in many different ways. There are support groups located throughout the country, publications for family, doctors and friends to help better understand the disease, assistance for the care giver, and the most current news about research and clinical trials that are going on. You can learn more by visiting their website.

Each year, in various places around the country, the HDSA also has a fundraising walk called the Team Hope Walk. The goal is to raise money for more research and study to learn even more about this disease and also provide assistance to the families living with HD. This will be the second year that Robert and I have participated. This year, it will take place on October 20, 2013. This is 6 days after the second anniversary of Cheryl's death. We will be walking in honor of her and hope you will consider sponsoring us. The HDSA is an important part of our lives and the lives of the many across the world who must live with this disease. Your donation will help the goal to eradicate this disease so that no other family will have to suffer the effects of HD. 

Please visit Cheryl's Kids and donate today. We appreciate your support.