A Huge Victory for HD Patients

Something good has happened this week. Something that brings relief and help to so many families dealing with Huntington's Disease.

From the beginning, the Social Security Administration has defined Huntington's Disease as a movement disorder only. However the chorea is only one symptom of the disease. More often than not, chorea usually appears in the latter stages. It is usually not one of the first symptoms of the disease. Instead, there are other issues first. The cognitive problems and mental issues associated with Huntington's Disease are just as problematic and make their appearance much earlier in the progression of the disease. These cognitive and mental problems can make it difficult to keep a job. Unfortunately, the SSA didn't recognize those as part of the disease and made it difficult to get approval for disability at a time when a person really needed it.

That all changed on July 1st.

On July 1st, the Social Security Administration adjusted the criteria for Huntington's Disease. It now recognizes that HD is so much more than just the chorea. It is mental issues. It is cognitive problems. 

What does this mean? 

It means that the new rules that go into affect on September 29th will make it a bit easier for the people around the country that find themselves in a position of no longer being able to work because of the way HD has begun its attack on a body. It also helps many of the other neurological diseases out there. 

Read full details Here.

But, the fight is not yet over. Even though it is easier to get approved for Social Security Disability, a person with HD still has to wait two years before Medicare kicks in. Part of living with this disease is to receive the proper care and assistance. This might mean medication or some sort of assisted care depending on how far along a person is in the disease. Waiting two years for Medicare can honestly be a difference of life or death in some of these people. It is important that we continue to work to change this as well.

For today, though, we will celebrate a huge victory in the battle against Huntington's Disease.

Appreciation for the Caregiver

The keynote speaker at the HDSA Convention this year was a guy by the name of Peter Rosenberger.

Long story, short, he is the caregiver of his wife who was in a car accident over 30 years ago and has endured 70+ surgeries, over 9 million in medical bills and amputation of both legs among many other issues. 

So, obviously he has a lot of experience being a caregiver for someone he loves. He brought so much fun and laughter to those of us who are or will be caregivers for a loved one. He also had a lot of wonderful advice on how to not lose yourself in the mist of being the caregiver. But that isn't what I wanted to talk about today. Instead, I wanted to talk about a question that somebody asked during the question and answer period. It is something that still bothers me several days later. 

The question?

How do you feel appreciated when the person can no longer tell you they appreicate you?

You could tell that Peter was a bit surprised by that question. I was, too.

As caregivers, we aren't doing what we do to get appreciation from the person we are taking care of. If that is the reason you are taking care of the person, you are doing it for the wrong reasons. Today, I cook dinner for my husband, do his laundry and clean the house because I love him. Yes, I do like it when he tells me thanks for doing that or says that he appreciates me, but I am not doing it to seek his love and appreciation.

I don't mean to make light of the fact that being a caregiver is hard work and can be one of the most thankless jobs out there. It is tough and overwhelming and tiring and emotionally draining and so many other things. It can be made even worse when the person cannot tell you thanks for the wonderful job you are doing. However, I don't think you should be doing the job if you are seeking appreciation and thanks from the person you are taking care of. If you have reached the point that you are feeling unappreciated for all of the hard work you doing to care for a person whose brain is being destroyed by his or her own body, are you truly providing the best care for the person?

Later that night, Robert made it a point to say that he already appreciates everything that I am going to do for him because he knows there will come a day when he won't be able to tell me that. My response was that I will not be doing it for his appreciation but out of love for him.

I will also say that I do appreciate Robert's brother for all the tine he spent taking care of their mother.  I know that it was not an easy but he did a great job. I also know that their mother appreciated it a lot and was very appreciative of all he did, even if she couldn't tell him she was herself.

Finally, I will leave you with the words of Peter himself as found in his book Hope for the Caregiver. 

The one we care for may not recognize or even appreciate what we do on their behalf, 

AND THAT'S OKAY -

If we love them we're doing it for their benefit, not ours.

What a Week it Was

Things are always better when they are free. Right!?

I have to say that the last week would have been wonderful even if it wasn't free, but that did make it a little bit better.

Back at the beginning of the year, I submitted my application to the HDSA for a scholarship to attend the annual convention located in Baltimore the first weekend of June. I thought I had read that winners would be notified around the first week of April. When I didn't get an email that week, I was bummed because I figured I didn't win. So, when I got an email around April 20th saying that we were awarded a scholarship, I was over the moon. I am not sure there is even a word to describe how excited we were. HDSA covered three nights at the Hyatt where the convention took place, all convention activities as well as reimbursement of the air fare to and from Baltimore the moment we checked in at the convention registration desk. 

It was made even better by learning that we could fly up the weekend before the convention and spend some time with one of Robert's brother and his wife. Since it is roughly a 20 hour drive to get to their house, it isn't as easy to hop in the car and drive over. It has been a few years since we have seen them. One of his other brothers even made a six hour drive from North Carolina to spend some time with us. Great way to start a week of vacation. 

We flew up to Baltimore on Sunday, were met by Robert's brothers and spent Memorial Day on his brother's boat near the Potomac River. We then spent a couple of days with them at their house up in the mountains of West Virginia. It is all beautiful country.

Then, Thursday morning, we packed up and headed to the Hyatt Regency of Baltimore that is located in the Inner Harbor. We could see Camden Yards from our hotel - if only they were playing the Rangers instead of the Yankees this past weekend. We could also see the field were the Baltimore Ravens play but that means nothing to me.

It is a beautiful hotel and a very nice area. There are historic boats you can tour, lots of seafood places to make Robert happy and some neat shopping spots. We enjoyed walking around and checking it all out Thursday night. Then, the real reason we were there got started Friday morning. 

It was 48 hours of so much useful information, so much hope for the future and even some laughs and fun times talking with people that know exactly what it is that we dealing with in our journey along the road named Huntington's Disease. 

I picked up tons of materials from presenters, the different vendors and took lots of notes from the workshops that we attended. An added bonus was the caregiver support group that I went to that was lead by the HDSA social worker that oversees our local support group. We also got to dress up and attend a gala and play some fun carnival games and get tattoos. Now, those tattoos may have been temporary, but they were still fun.

I have lots of information that I received that I want to share with everyone and hope to do that over the next few months. Things like the awesome chairs we saw that are actually designed for people with a disease that has the chorea often associated with HD and the amazing info they shared about the testing of a gene silencing drug.

 I will say that if you ever have the opportunity to attend the annual convention that the HDSA does each year, take it! It was so amazing that I want to go every year, even if it means I have to pay for it out of pocket. 

Let's Talk About HD

I was working on a blog during my lunch hour one day. Somebody asked me what I was doing and I told her I was writing a blog. She rolled her eyes and made some sort of comment under her breath about it.

I have gotten that response more than once. I have been asked why I feel the need to blog and what makes me think I am so special that I need to write about anything. 

Truth is that I am not all that great. I am not anybody special; I am not better than anybody else out there. I don't write for recognition or for followers. I do it because I want others to know about this disease that has become such a major part of my life and the lives of many that I love.

I have heard or read so many stories in the last 13 years that always begin along the lines of "We knew something was wrong with so and so, but we didn't talk about it" or "Huntington's Disease wasn't something we talked about in our family, even though we knew so and so had it" or any other number of similar conversations. The point being, nobody talked this disease; even when it was part of your own family.

I personally hadn't heard anything about it because I had never been in contact with anybody that had been affected by the disease. Once I met my husband and learned about the disease, I found it amazing how many people in my own little sphere knew somebody that was somehow affected by the disease. But, still nobody talked about it. 

That has to change! We have to talk about this disease and raise awareness for it. The more we talk about it, the more people begin to understand and help to find a cure. 

You Talk About It Too Much

Somebody told me the other day that I post too much about Huntington's Disease on Facebook. i talk to much about it. It isn't that big of deal. Really?

So, I asked her if she thought that they talked to much about Alzheimer's since I hear something about it at least once a week. She said no, because that is a serious disease that they need to find a cure for. It destroys so many families. I told her that was true and asked if she felt Parkinson's and ALS were talked about too much. Her response was the same. They are both horrible diseases that affect so many people. Again, I agreed with her. Then, I posed this question: What if somebody had all three of those disease at the same time? Would that make it a serious issue? That stumped her for a moment before she answered that there had never been such a case.

My response?

Now, if you want to get technical, that is probably true. I haven't researched that, but I have never heard of a person that was diagnosed with all three of those diseases at the same time. But, I have heard of thousands upon thousands of people who have been diagnosed with Huntington's Disease - which has been characterized as having all three diseases (Alzheimer's, Parkinson's, ALS) simultaneously.

I will not apologize for talking about it too much. 

It is not talked about enough. I know the statistics that say that approximately 20,000 people in the United States that have been diagnosed with this disease. I know that there are approximately 100,000 people in the world that are classified as living at risk - meaning they may have the gene in them but have not been tested to know on way or another. I know that the number of people living with Alzheimer's, ALS and Parkinson's are much higher. However, for the family and friends of those 20,000 people living with the disease and the thousands that are living at risk, it is a big deal.

I will continue to talk and post and share about Huntington's Disease. I am not going to stop because someone thinks I talk about it to much, It matters to me and those I love dearly. Education and awareness is the first step in finding a cure. The more people are educated, the more people that can work to find a cure for this disease.