Putting Yourself First

Today, I want to talk to the caregivers. I want to talk to you about the importance of taking care of yourself. Mentally, physically and emotionally. 

The last three years have been a lot. I’ve detailed some of it in previous blogs. 

The last 12 months have probably been even more stressful than anything I have had to deal with before.

Here is a very high level view:

September 11, 2022 Grandma who had COPD and COVID pneumonia was moved to hospice while Robert and were on vacation in Hawaii

September 18, 2022 Grandma passed away

September 23, 2022 We bury grandma and I develop a tear on my retina

September 26, 2022 I have my retina repaired with a laser 

September 28, 2022 Robert had a bone marrow biopsy because of his low platelet count

October 2, 2022 Mom (stepmom) has hip replacement surgery

October 8, 2022 Mom has a heart attack

October 10, 2022 Mom has open heart surgery to repair three blockages and remove a cyst between her heart and lungs. 

Weekends between October 16 and October 29 are spent in the continuing care facility with her so she was not alone because the staff there left a lot to be desired and none of us were comfortable not having someone there with her the whole time. Normal PT for her hip was hindered by her recovery from the heart surgery and PT for the heart was thwarted by her hip recovery. 

In March, Robert was involved in a car accident and our car was temporarily "lost" between when the tow company picked it up and when it made it to the repair place a week later. Then, a couple of things that should have been repaired were not and we had to take it back.

We had the "joy"of learning all the ins and outs of the many different aspects of Medicare so Robert can be covered. 

My job that I truly love has been frustrating me for a variety of reasons. 

In July, Robert had his fall that resulted in staples in his head and the hospital stay as well as more doctors and more appointments. 

We had to replace our A/C during one of the hottest summers on record in Texas. We literally hit 102 this past Sunday if that give you any indication how bad it has been. Then, about two weeks later, we had to replace a dishwasher that broke and have a fridge that will probably need to be replaced in the next year or so. 

A couple weeks ago, my mother (birth mom) found a lump during her yearly mammogram. Both of her older sisters are already survivors of breast cancer. She has had a biopsy and we are waiting for results of that. Initial reaction from the biopsy is that it doesn't look good. 

There has also been some turmoil going on in the lives of some dear friends of ours that is affecting us emotionally in the last few weeks. 

Finally, if all of this was not enough, the medication that I have been on for over 11 years for my ankylosing spondylitis (think Rheumatoid Arthritis on steroids) has become less effective so my pain levels have increased dramatically. Almost a year later and we still haven't figured out a new solution that is effective at reducing my pain levels to the manageable levels I was at before the previous medication began to lose it effectiveness. The stress of all the above doesn't help that either. 

All of this to say that I am struggling. Mentally, physically and emotionally. But I haven't said anything to anybody because I don't to be a bother. I keep things from Robert because I don't want to stress him out. That makes his anxiety act up, which makes him depressed and can temporarily exaggerate his HD symptoms. 

But I can't do that anymore. If I am going to take care of him, I have to take care of myself as well. So, I have taken a big step. I have reached out for therapy and am going to start talking to someone about me and all of the stuff I have been keeping bottled in of late.

Most caregivers can probably relate to this. So much of our time and energy is spent taking care of someone else. We put there needs first. Our well-being is often put on the back burner. But sometimes, we have to put ourselves first. Sometimes, we have to be a bit selfish. It's the oxygen mask principle. "Put your mask on first, BEFORE helping others." 

Let this serve as a reminder that it is okay to take a little "me" time once in a while. To be the best caregiver, you have to be at your best. If you need help, ask for it. If you need to talk to a therapist, talk to a therapist. If you need to take medication to help with depression or anxiety, ask for it. It is okay to not be okay. Take the healthy steps you need to in order to be a better caregiver. 

One Doctor Appointment Leads to Another

It’s been an interesting few months since that trip to the ER when Robert thought it would be fun to just randomly pass out. While he hasn’t had any issues where he actually passes out, he has had several times where he gets light-headed when he stands up. 

We recently had his quarterly check-in with his neurologist and mentioned what happened. It’s a partial brain thing so we wanted her to know. She didn’t think it was HD related, but a circulatory thing. She checked his blood pressure and it was 102/78. Then she had him stand up and it dropped to 98/72. Yes, the numbers are correct. That’s low! She told us that was most likely the cause of the Vagal Nerve episode. Her advice was to go back to our PCP and have some tests done to figure things out.

That led to blood work and more doctor appointments. 

First the cardiologist. He said something interesting. There is a connection between HD and your heart. Some new studies are showing that HD can impact the way the circulatory system works. I was not surprised. In my mind this makes sense. HD affects the brain so it stands to reason that it could impact any one of the systems that operate in your body. So maybe they are connected. 

The doctor gave him medication to help raise his blood pressure and put him on a heart monitor for a week. I keep joking that I am now married to IronMan. For a week, anyway. 

The second thing it revealed - or reminded us about - was his low platelet count. It has been a few years since I talked about that but you can see it on some previous blogs from May and June 2016. This is not a new thing. However, it concerned the doctors so they wanted us to go see an oncologist for further testing. 

Fortunately, she was not overly concerned by it. She says that yes his count is low by what is determined to be "normal standards" but not a huge concern. She too ordered some more tests and blood work to further assess what is going on. 

Now, we wait for test results and determine the next steps. 

One thing this experience has taught us is that we need to be vigilant in all areas of Robert's health. While it may seem like an insignificant thing and maybe not related to HD, there is still a chance that it is. It is still important to tell the doctors all the info and report anything that does not appear normal. They might be related to your current condition, but they might not be. It might be something new, but it might not be. Or, it could be something new. You won't know until you talk to the doctor about it. 

I Choose Joy

At our Womens Christmas Party at church the other night, the speaker talked about choosing joy. One of the things she mentioned is finding joy in the obvious things in your life. 

This ring brings me joy. Obviously.

it does bring me joy for some of the obvious reasons. It is a very beautiful ring. It symbolizes that  my amazing husband chose me as the person to spend his life with. He bought me this ring to symbolize that he thinks I am worthy of his love. These are obvious reasons it brings me joy.

However, it is the reasons that are not so obvious to the outside world that bring me the most joy when I look at this ring. 

About a month ago, I took my ring back to the jeweler for the routine cleaning and inspection. A few diamonds were loose. it had to be sent off for repair. It came back and still had a few stones loose so it had to be sent back for repair, again. So, for an entire month, I did not have this ring on my finger. Having my ring back makes me very happy.

More than that, this ring on my finger means that my husband is still here with me. It means that he is still a part of my life. I say that not because I think he will leave me but because I know that my time with my husband is limited. Not to be morbid, but the reality is that I will most likely not have him with me for as many years as most people enjoy with their spouse. That is Huntington's Disease. 

If the last year has taught me anything, it is that our time together is limited. More limited than what we thought it might be a year ago. So, each day I have with my husband is a day to celebrate. Before long, they will be nothing more than a memory.

This ring brings me so much joy. Each day I wear it is another day that I get to spend with him. I choose to find joy in this very obvious symbol of the love we share. 

What a Difference a Year Makes

Tomorrow, we leave for yet another trip to one of the Mouse's houses to celebrate our anniversary. This year, we are headed to Disneyland to celebrate 17 wonderful years together. 

I can't help but think of last November. It started out great! We went to Disneyworld and had an amazing week celebrating our 16th anniversary. However, the month would end with me having Covid and Robert checking himself into the hospital because of severe depression.

These events are the ones that lead us to the realization that Robert was beginning to show signs of Huntington's Disease. These are the events that resulted in his applying for disability. What we didn't realize is that this would be a blessing in disguise.

What?

The months leading up to being approved for disability were very hard for Robert. It was very stressful. He was worried about our financial situation and felt depressed because he was not able to help contribute to things the way he had before. He felt like he was a failure. 

That changed when we learned his application was approved. Once he knew there was steady income coming in again, he was able to relax. Plus, he now does some basic maintenance at the church a few days a week. All of this has actually helped to improve his mental state. He has been able to stop taking the anti-depressant that he was on.

So many things have happened since this time last year. Some good, some bad. Some things we were prepared for, some things we weren't. However, though it all, we have seen God's hand in all of it, in small and big ways. 

Now, as we prepare the last minute tasks for another anniversary trip guaranteed to make some amazing memories, we look forward to what the next year brings. I'm sure their will be many ups and downs but we are in it together and know that God's with us every step of the way. 

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. 

We Have A Decision (sort of)

When you get an email from Social Security saying they have an update for you, you open it with a little trepidation. Especially when you get the email around 11:30 on a Saturday morning. 

You take a deep breath, say a prayer and pull up the website, not sure what to think

But, then you see this...

Do you see that word in bold under the blue line? That word that says APPROVE? That's right! They made the decision to approve the application.

Huge relief!

So, what's next?

In 10-15 days, we will receive a detailed letter that explains the decision. This will tell us when the payments will start and how much they will pay each month. 

The day that payment begins is determined by the day the Social Security determines disability actually began. For Robert, was this when he checked himself into the hospital (November 30th), the last day he worked (December 20th) the day we officially filed the application (January 29th), the day Social Security began reviewing the application (February 17th), the day we saw the neuropsychologist (April 16th), the day they approved the claim (June 25th), or some other random day SSA decided on? The day is important. 

Payments will begin five months from the day it is determined that disability began. It is honestly an arbitrary decision based on what the person reviewing the application decides. The letter we receive should provide that date and the amount received each month. So we wait.

Regardless, this is a huge answer to the prayers of all of the family and friends over the last few months. While we haven't reached the end of this process, we can honestly say that we now see that light at the end of the tunnel and know that we will make it though. 

More updates to follow... 

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. 

The Results You Want; The Results You Don't Want

We saw another doctor. We had more testing done. The results were pretty much what we expected. It was a result we wanted; it was a result we really didn’t want.

We went to a neuropsychologist. He specializes in understanding the behavior between the brain and your behavior. He performs a bunch of tests to evaluate how your brain responds and determines  the changes in cognitive abilities. This is part of the process in applying for disability. It helps to show that a person does in fact have cognitive issues that affect their day to day life and ability to perform a job. 

The results are double edged sword. From the standpoint of applying for disability, it was good. From the standpoint of Robert’s progression in the disease, it was bad. 

The test results show his intellectual resources are in the 19th percentile or less. The words that stand out are abnormal, varying degrees of impaired, significantly comprised, uneven, deficient and below average in various categories for the 13 different tests that were performed. 

There is no doubt about it. Robert has a severe decline in his cognitive ability. Severe enough to make it obvious that learning a new task or performing a new job would be a big problem. Severe enough to show that he can no longer maintain a job that requires him to retain information and complete multiple processes needed to do the types of jobs he has done for the last 35 years or so. From the standpoint of applying for disability, this is the result we wanted. It is more evidence of his need for SSDI. 

This is also more evidence that this horrific disease has begun to effect Robert. Knowing that this disease has finally taken residence in his brain and begun to cause deterioration is not something we wanted to hear. 

Now, we send this off to Social Security to add to the file in hopes that it helps show the need for approval on the first try. In the meantime, we continue to wait.

Disappointing Research Results

In the last month, the HD commuity has received some very disappointing news regarding two studies being done on drugs that hoped to stop the effects of HD. Both of these studies have been halted in Phase III of development. 

A little high level background first. Everybody has a certain amount of the a protein in the body called the huntingtin protein. It helps do a wide variety of things in the body. When the protein is in normal. health, there are no problems.  However, if the body begins to produce a mutated form of this protein, the result is Huntington's Disease. 

In different ways, both of these studies aimed to change the makeup of the gene that causes Huntington's Disease by decreasing the amount of the harmful protein created by the body.  Each study developed antisense oligonucleotides or ASO's. These are a type of gene silencing treatment the has DNA molecules designed specifically to alter the functionality of that gene.

The first study - Wave's Precession HD-1 and 2 - was designed to target the message the body creates to produce the mutated and harmful version of the protein. The idea was to eliminate the harmful version of this protein so that it couldn't cause harm to the body. In other words, eliminate the problem child, eliminate the problem. Unfortunately, it appears there was no compelling evidence to show a change in the amount of the harmful protein when compared to those treated with the placebo. As a result, Wave announced on March 30th, they have decided to halt the study and begin work on the next treatment. 

The second study done by Roche and Ionis. This study developed an ASO aimed at silencing the entire huntingtin protein. In fact, during Phase I and II of this study, it appeared to have a lowering effect on the protein. Phases I and II are an assessment to see if there are any safety or harmful side effects and not designed to monitor the overall results the drug has on the body. It looked so promising. Then, on March 22nd, they announced they were halting the study. 

Every study has a committee of independent data experts who periodically review the data of the trial and determine if the study should continue. They usually ask two question about the data as they review it. 

Are there any new safety concerns that are emerging that did not show up during Phase I or II? 

Does this ongoing trial show unlikely beneficial results? 

In other words, if participants are showing some new strange or unfavorable side effect, the committee would order the trail be halted. If the symptoms do not appear to improve or it does not seem to show a likely benefit or improvement in a person's condition, they committee would recommend halting the trail. It appears based on the announcement from Roche, it appears that there are no safety concerns resulting in the halting of the study. We don't really know as not much information has been given. Hopefully, over the next few months, more data will be released and we might learn more. 

Looking at the bright side, both studies have provided valuable information that will be helpful as they move forward to develop and test the next drug that might be the cure. My favorite website for all things HD news related (HDBuzz) said it best. "We shake ourselves off and do it again" 

While this is a setback, I have not lost hope. I still believe the cure is out there and one day we will find it. 

Misunderstanding Social Security Disability Insurance

Some people think it is wrong of us to be going through this process of applying for disability. After all, I am still working so we should not be trying to take advantage of the system. 

The misunderstanding lies in what it is the we are actually applying for. 

What we are applying for is called Social Security Disability Insurance or SSDI. This is financial benefits based on a person's work history and funded through the FICA taxes that are taken out of your paycheck. It is the same as the money you would be collecting from when you retire and collect social security benefits. You have to work a certain number of years in order to qualify for this insurance. Since Robert has been working almost all of the last 35 years or so, he has met that requirement. 

There is another type of social security benefit that is available to those who are unable to work due to a disability. It is called Supplemental Security Income or SSI. SSI is a federally funded program providing financial help for those who have limited income and assets. The funding for this program comes from the general treasury fund and not Social Security itself. You must make less than the monthly maximum that your state government has set in order to obtain SSI. They also factor your spouses income into this. Needless to say, we do not meet the income requirements. 

There are some people I know that have opted to divorce their spouse on paper so they might qualify for the SSI benefits as well. Rest assured, Robert and I will not be doing that.

We are not trying to take advantage of "the system". Essentially, we are simply asking if we can have the money that Robert would get when he retires now instead of 20 years from now when he would reach retirement age. After all, given the way Huntington's Disease manifests it self in a person's body, Robert most likely won't be around long enough to collect all the money he has been paying in to Social Security all these years. As morbid of a thought as it might be, it is the reality we face. 

Hopefully, this helps clear up some of the misinformation out there. 

The Saga of Applying for Disability Part II

 Ugh!!!

More Paperwork!!!

We got two different letters in the mail requesting more information.  Both contained a bunch of paperwork that we had to fill out and fax back to them. At least this time, we were given 15 days to complete them.

The first set was a request for extensive work history of all the jobs you have had in the last 15 years. Luckily, since Robert has only had three jobs in that time, it wasn't as bad as it could have been. They want to know what all your job functions were and why you can't do them any more. You had to detail how many hours you spent each day doing all of the various functions of your job. 

The second set was about day to day life. You have to go into detail about all of your day to day activities and how they have been affected. You have to detail things like if you can shower every day, cook food, do basic household chores and so much more. 

I was the one that filled out all of this paperwork for Robert since it is somewhat of a struggle for him. He has trouble sometimes putting his thoughts into words that make sense to you and me. His handwriting, while never great, has gotten progressively worse over the last few years.

If Robert did not have me to help him out and advocate for him, what would he do? Would there be someone out there to help him. Realistically, I know he has family that would, but what if he didn't have them around? What if he was all alone in the world? 

It makes me think of all of those that are struggling and nobody around to help.  This process is a bit overwhelming for me and I am not faced with the loss of brain function that so many who struggle with the onset of HD do. I can only begin to imagine how stressful it would be to face this all alone.

Anyway, the most recent round of paperwork has been filled out and submitted. Now, we wait again either for more paperwork that will be needed or a decision to be made. 

The Process

The process for applying for applying for Social Security Disability has changed a bit from when we did it for Robert's brother Bill ten years ago. 

Ten years ago, Robert and Bill had to go to the Social Security office and fill out a bunch of paperwork and take documentation to show why Bill couldn't work. 

Today, you fill out an application online. 

You have to give the names of your doctors, give medial release for Social Security to contact those doctors, provide details of any tests you have done and even list jobs you have worked at for the last few years. It's a lot.

It can also be very overwhelming and very time consuming. It is also frustrating because in multiple places, you have to repeat yourself. You have to say the reasons that you think you deserve to be approved for SSDI. 

Ww have given medical release. We have lists his doctors. We have told him when and where he got his MRIs. We have all of our documentation showing the affects HD has had on his brain. We have a letter from his last employer explaining the problems Robert had learning the new job. 

Once it is all complete, you wait.

They say it can take up to six months before you hear anything. 

The chances of being denied the first time are pretty high. If you are denied, you can appeal the decision.

There are three levels of appeal. 

The first appeal can take 3 - 4 months before a decision is reached. 

The second appeal can be 18 - 24 months to make a ruling.

The third appeal can be another 18 - 24 months. 

If you are denied then, you start all over with a new claim and wait yet again. 

When it comes to Huntington's Disease, it is not uncommon to be denied numerous times. 

We pray we only have to file the initial application and its easily approved. 

Updates will be provided as we have them. 

2020 Was an Interesting Year

 2020 was a year and what a year it was. And it isn’t even because of COVID.

It’s been ages since I have made a blog post about our lives as we live with all things HD. Honestly, there wasn’t a lot to say. Our lives were pretty normal. HD has been a part of it but it was mostly something that was hovering about but not consuming our every day lives.

A high level summary...

I changed jobs which has been a blessing in so many unexplainable ways.

We celebrated 5 amazing anniversaries together including finally crossing taking a Disney cruise for one of them off the bucket list.

We were finally able to convince Robert’s sister who also has HD to move in with there youngest brother in North Carolina.

We made new friends, we lost friends.

Robert ran a half marathon through Disneyworld.

I got to go to Disneyland for the first time.

We took several cruises and other fun trips.

We said goodbye to our puppy after 14 years...

...and acquired a new one

And then we hit 2020.

It started off pretty good. We celebrated Robert’s 50th birthday and thought things were going pretty good. However, three days after his birthday he was let go from the job he had been at for over 15 years. Short version: he was used as a scape goat for things that were beyond his control.

This would create a ripple effect and set off a chain reaction of events to bring us to the point we are at today.

First, Robert started getting depressed. He is a man who is hard wired to provide for his family by working. Not working, he got depressed even though he was collecting money from unemployment. He was able to find a new job but it revealed something we were not aware of.

Huntington’s Disease has started to affect his brain. He had a hard time remembering the steps to do many of the tasks at his new job. Even after being showed them multiple times. Plus, one day he would remember it but the next day, he wouldn’t. His cognitive ability is deteriorating. One time, he made the comment that he had to stop and think about how to eat a hamburger. He knows he has to pick it up and eat it but struggles to put the steps together to execute the process.

This all triggered a deep depression and massive anxiety for him.

It got so bad that he actually checked himself into a mental hospital for a week. He was diagnosed with a deep depressive disorder and anxiety. He was prescribed an anti depressant and given steps to combat the anxiety and recommendations to follow up with a psychiatrist.

He attempted to go back to work but was unable to. The anxiety was so bad, the depression so extreme he couldn’t perform his job.

Then, we went to his neurologist. She had an MRI done. The MRI revealed has what are referred to as dark spots in his brain. Spots where his brain cells have deteriorated and created lesions. So, obviously, his brain has been affected.

It has become clear that both his mental and cognitive abilities are both affected by HD. His ability to perform a job is affected. After nearly 35 years of working, he no longer can. This brought us to the decision that it is time to apply for disability.

So, we have started that process. We submitted his application on Friday. Now, we are at the mercy of the SSDI to see what happens next. Our prayer is that it is an easy process for us and not the long drawn out one that we have heard the many stories off.

Here’s hoping that 2021 is a better year for all of us.

The Health Of A Caregiver

If nothing else, the last few months since I last posted anything, I have been reminded of the importance of having a good support system. Having people you can depend on to help you when you need it the most makes everything so much easier.

No, nothing is wrong with Robert. His symptoms have not gotten worse. Instead, I have had a rough time with my own health issues and they have taken a toll on both of us and impacted our day to day life.

About five years ago, I was diagnosed with a very rare but very severe form of arthritis. An auto-immune type of arthritis that makes my body attack itself. It causes all kinds of fun stuff like bone fusion, inflammation of bones, swelling in joints and stiffness all over my body. For me, the worst areas happen to be my lower back and my hips. Some days just putting one foot in front of the other is a trial. Not to mention being more suseptible to picking up all the nasty germs that get passed around

It took a long time for the doctors to even figure out what the problem was. When I first started complaining of arthritic like symptoms around the age of 25, the doctors told me there as no way that  could have arthritis. I was too young for something like that. It took almost 10 years before I was able to convince a doctor to do the testing and in fact diagnose me with Ankylosing Spondylitis. So, the damage to my body has been fairly signifigant because I went so many years without treatment.

Plus, to add a little more fun to the mix, my body does not tolerate most prescription pain medications. They tend to make me very sick. So, I can take Tylonel or Alleve but not much more.

I am in chronic pain. I have learned to live with it. However, lately it is sometimes more than I can bear. I have missed more time from work in the last four months than I have since my intial diagnosis. My weekends are usually spent doing a very limited number of things. Since grocery shopping on Saturday and going to church on Sundays tend to be a top priority, many weekends, that would be the one and only thing I did each day. The effort it required to accomplish that one task each day was so draining after a week of work that I would need the rest of the weekend to recuperate so I could make it through a week of work. All the while trying not to let on to those around me how bad things really are.

Luckily, I have begun doing some physical therapy and chiropractic care and in the last couple of weeks, I have started feeling more and more like my old self again. I still find the pain to be unbearable some days, but I was actually able to do some stuff around the house besides laundry this weekend and not feel totally drained the next day.

I say all of this not to get sympathy from anybody but to provide a bit of an understanding of my overall point. My point is to highlight the fact that we all need to build support systems for when times are tough. Right now, I have a great support system in the form of my wonderful husband. He has been the one doing most of the house cleaning and letting me relax and rest as much as needed. I am so grateful to him for being there for me. However, I am cognizant of the fact that one day, he won't be able to do that.

One day, he will be in the late stages of HD and unable to clean house for me. One day, I will be his primary caregiver and will have to be able to take care of him in all capacities. That is Huntington's Disease and the reality of things to come. If the last few months have taught me anything, it is that I will not be able to do things by myself.

The nature of the disease that I live with is that it, too, will continue to progress and worsen as time goes on. I get what the doctor calls flare ups. Some days, it just seems worse than normal. The flare ups are bad. Especially when they seem to last for months instead of just a day or two.  So, that means that I will have to have assistance in caring for my husband at some point in time.

Knowing all of this puts emphasis on the fact that I need to take care of myself if I am going to be able to take care of him. I have to be healthy and able to do things if I am going to be able to do for him.

The same can be said for any caregiver. You have to take care of yourself and make sure you are healthy. You have to take time to make sure you, too, are getting the care that you need, the rest your body requires and the mental breaks that you need. This is a necessity if you are going to provide the best possible care for your loved one. Part of doing this involves making sure you have a support system in place to assist you when you have a bad day.

You will not be able to do it all by yourself. Start making plans today with those friends and family you know you can count on to help you when you need an extra hand. Waiting until you have reached the point of needing help may be too late.

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.

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.

Let's Talk about HD

This is a blog that I originally wrote back in 2011 when I first started this blog but have never shared for a lot of difference reasons. I have finally decided to share it because it highlights the importance of raising awareness for those that suffer from it. Suffering goes beyond just the person diagnosed. It affects the family and friends of that person as well. The more awareness we raise, the more people understand and what to help. To raise awareness, we need to talk about HD

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Okay, so I would never honestly wish Huntington's Disease on anybody - not even my own worst enemy.  It is a horrible disease that destroys lives and families and will continue on for generations until treatments or a cure can be found.  So, it is tongue in check so to speak that I say I wish someone famous was living with Huntington's Disease.  The only public figure that has been diagnosed with the disease and discussed it publicly would be Woody Guthrie

Who?  Woody Gurthrie was a folk singer in the 40's and 50's who wrote songs such as "This Land is your Land" and many others (Woody Guthrie). He died in the late 60's so most people my generation and younger really don't know who he is unless you grew up on folk music. I was raised on a lot of this type of music, so I can say I actually knew who he was.  However, since he succumbed to the complications of the disease nearly 50 years ago, he is not around to help raise awareness.

So, why would I want a famous person to have it? Who do you think of when I say Parkinson's Disease?  Most likely some of the first people that come to mind are Michael J Fox and Mohammad Ali.  Both public figures that have been diagnosed and are living with Parkinson's Disease. They have helped to bring notoriety and funding to help the fight of Parkinson's. And what about ALS?  This is often referred to Lou Gehrig's disease after the famous baseball player that was diagnosed with disease.

Having the association with a famous person helps in many ways.  When a person learns that one of their favorite actors or athletes has been diagnosed with the disease, they work to learn more about it.  It can also lend support to funding and research of the disease.  I want that kind of attention for Huntington's Disease.  I want others to know and understand what only a handful of us do today.  I want to be able to say that my husband, my sister-in-law or even my bother-in-law has Huntington's Disease and not be looked at with that clueless not understanding look.

The disease has been mentioned in a handful of shows - House, Private Practice, Everwood and Grey's Anatomy - but not enough to fully document or explain the disease and allow people to develop an understanding of what it is and how it affects the people diagnosed or those that they live with. There is very limited knowledge about this disease and I want more people to know.

For the sake of the disease, I think it would be helpful and beneficial if we could all point to someone well known who has this disease.  Funding for more research for treatments or a cure would be so welcome by my family and many others that we  know. So, yes, I do sometimes wish a living famous person of this generation did have the disease.  For the simple reason that I don't want to another family to have to suffer and endure what Robert's family has for many generations and the turmoil they still have yet to face.

So, #LetsTalkAboutHD