Victory!

With the passing of Robert's grandmother taking place a couple of weeks ago, I haven't had the chance to give an update on the situation with Bill and Social Security.

To begin with, a couple of weeks ago, we got a letter detailing the judge's decision.  She agreed that Bill was unable to work and would be awarded disability income. Woohoo! Secondly, she said the date he became disabled was a date in 2004.  Basically, she said he was unable to work for nearly 7 years. So, the next question was how much he would get in the way of back pay.  For that, Bill and Robert had to meet with the Social Security office to determine the amounts he would be awarded.  This is where the whole thing got a bit frustrating.

It started when we got a letter from their office saying that Bill and Robert needed to come to their office on at 2:30 on Thursday, July 12th.  And they needed to bring any pay stubs that Bill had dating back to October of 2010 - when he first applied for Social Security.  Hello people! He filed because he can't work - how is he going to have any pay stubs for that time if he couldn't work? And, considering that Robert got this letter the Thursday before he was to meet, there was no way he could get the day off since the schedule was already written. It did say he could call to reschedule and so he figured he would do that first thing Monday morning since he would be too busy at work to call them on Friday.

Now, fast forward to Sunday.  We got the call that Robert's grandmother had passed so there was no way they could possibly make it on Thursday since that was the day of the viewing and the funeral was on Friday, in Cleveland.  So, Monday morning, Robert calls the number.  And waits on hold for over half an hour! He finally had to hang up because he needed to make some other phone calls so we could make arrangements to head off to Cleveland.  Very frustrating to say the least.  He finally got a hold of them on Tuesday morning and explained the situation - we were in Cleveland and wouldn't be able to make it on Thursday.  The lady he talked to made note of it and said it was no problem.  They could just come in whenever and it would be taken care of. The lady must have forgotten to update the appointment notes though because they blew up both Robert and I's phone during the viewing because Robert and Bill missed the appointment. It was a bit of a pain to say the least.

So, Robert and Bill finally get to the office last Monday. They were taken without an appointment which was very nice. However, I am not sure they had it all together. Robert and Bill were called to an office to meet with someone only to be told that everything wasn't ready and sent back to the waiting room to wait some more. Finally, after a couple of hours, they were called back to the office a second time where details were given - or at least some details.

First, Bill will get a check in the amount of $590 a month.  Much better than what we were originally told - around $300 a month. Secondly, he will get a second check each month - SSI.  But nobody would tell us that amount.  So how much is it?  We hope to find out next week when he get the first check on August 1st.  Third, he will also be getting back pay. And it will be in 3 lump sum payment checks.  One in the next few weeks, one 6 months later and one 6 months after that.  But they never gave the actual amount.  Only the amount of the fist check. The only thing that was really said about these checks is that the fist 2 would be direct deposit and the last one would be a paper check because it was too big to do direct deposit. However, it is hard to make plans for his future if we do not know the full amount of money he will be getting on a regular basis or if the lump sum checks will be enough to buy him things like the new clothes he needs as well as furniture for wherever he will be moving to.

The best news of the day, though, had to do with Medicare. Normally, when applying for Medicare coverage under the diagnosis of HD, a person has to wait 2 years before the coverage kicks in after being approved for Social Security disability income. However, because he had been waiting so long for approval, his Medicare Coverage actually started July 1st.  That is great because that means he can begin some of the necessary medications and treatments to help him live a more comfortable life as he progresses in his disease.

So, we got some great news! And now, we can begin the process of finding Bill a place to stay. Preferably a place that will offer assisted living for someone on a fixed income so that the can be checked on on a regular basis and be provided any extra help that he might need. The social security office did provide Robert with a place that might be able to offer assistance so that we can move forward.

In Memory of Margaret Land

Last Friday, July 13th, we had to say good-bye to a dear, sweet lady who touched more lives than any of us could count. Robert's grandmother, Margaret Louise Wagauman Land was born in 1924 and graced this world with her precensce for 88 years went home to be with the Lord on July 8, 2012.

Besides giving birth to Cheryl who in turn gave birth to my wonderful husband, she had an impact on the lives of many more. Meg as she was called by her sisters and brothers was one one of 11 kids in her family of 7 girls on 4 boys. As she was born in 1924, she grew up during the days of the Great Depression so times were tough through the years but the family survived. Her sister Peg told a story of the kindness and love Meg had for her family during these lean years. It was nearing Christmas and thier parents didn't have a lot of money to buy presents that year. Especially for 11 kids. So, Meg began buying dolls and doll clothes for her sisters to put under the tree. Peg happened to see them hidden in Meg's closet so she knew where the gifts came from. But, her sister Delores made the comment that she remembered that Christmas but never knew where they came from. And that was the way the Meg wanted it. She prefered that nobody knew where the dolls came from; she just wanted everybody to be happy and have a wonderful Christmas.

She married her husband, Peter a few weeks after her 19th birthday. They had 3 children - Jeff, Cecilia (Cibby) and Cheryl (Robert's mother). They were married for 37 years before Peter succumbed to the symptoms associated with Huntington's Diseasse. It was passed on to Cheryl and in turn Robert, Debbie and Bill. After Peter passed away, she never remarried. She never even dated again. She felt Peter was her one true love and there was no need to look for another one. She continued to live in the little house they had bought in Euclid, OH until she was in her 80's. She finally sold it about 5 years and moved in with her daughter Cibby where she remained until that Sunday a week ago.

She was a devout Catholic and went to church every week until she reached the point where she could no longer drive herself. She took her beliefs seriously and it impacted everything she did. She lived life to the fullest and enjoyed it even when she was dealt a rough hand of cards - which included losing a husband and a daughter to Huntington's disease. She was a ball of fire, and loved her family above all else. She was about 4 foot 11 or and loved to let anyone know how she felt about any number of issues from how biased FOX News was to her views on divorce and second marriages and any other issue that you might want to discuss. Sharing her opinion was never something she would sh away from. In fact, her and I went around a few times about our differences on a lot of different topics.

Her family was the most important to her up until the end. It was obvious in her commimentment to care for her daughter even when it became difficult to do so. It was even obvious up until the final days of her life. In fact, she told her niece, Terry, just a few days before she died that she couldn't go because she didn't want to leave Cibby alone. She kept saying that she needed to be there for Cibby. It was only after much convincing from Jeff and Terry they would care for Cibby that she decided it was okay to join Cheryl in heaven.

Margaret Louise Waugaman Land was very special lady and she will be missed by many but we all carry her in our hearts wherever we go. She touched many lives and we are all better for having known her.

We love you and look foward to seeing you again in heaven.

Understanding The Side Effects

Something that Robert and I are learning the last few weeks is that it is important to be aware not only of the symptoms ann how they compare in relation to whatever the ilness might be, but also to the side effects of the medications that are being prescribed to you. We already know that the leg movement in Robert is most likely restless leg syndrome. Like the doctor said, without the blood test, he isn't going to give an "official" diagnosis but he was willing to bet his life on it. Especially since the symptoms match up with RLS and not HD. The medication that he was taking did nothing for RLS and never will. The doctor suggested that Robert go back to his original doctor and request a change in medication. Mainly because this one has some unpleasant side effects and can be highly addictive if used for the wrong purposes. Since Robert was only taking one a night to help him sleep, he was fortunate enough not to develop an addiction to it. But after some research, we began to realize that he is experiencing some of the unwanted side effects and it is having a major impact on his life. Depressed thoughts, angry outbursts, more vivid hallucenic type dreams and even memory loss are just a few of the side effects that are experienced by people taking this particular medication. For the last year and a half that Robert has been taking this medicine, he has been dealing with each one of these side effects in spades. At first blush, we assumed that it is just a result of the HD begining to set in, so we didn't put much thought into it. The symptoms are what they are and there is nothing we can do about it. But, for the most part, HD is a gradual thing. It shouldn't cause the type of changes in a person that Robert has been dealing with almost out of no where. And, they have only begun to this extreme since he began taking this medication. I am not saying he was never angry, a bit down or that he ever forgot anythng. That is normal, but it seems to have increased drastically since he started the medicine that is supposed to help him. So, Robert has decided to stop this medication. In just a few days, he has noticed an improvement in his mood and his tempoer. It seems like this medication must have been affecting him in some way after all. Which is why it is important to really read up on any new medications that you are given by the doctor and understand what the potential side effects are. Does the benefit outwiegh the side effects? Is it really the best possible treatment or is there something else that can be used to help with the current problem? We put a lot of faith in the doctor to know what is best for us, but they don't always give us all the facts. Unless we ask, the full range of side effects are not always shared. And when you are given a medication after the wrong diagnosis, there can be even more negative repercussions. For me, this is a lesson learned and I will be much more cognizant of what types of medication both Robert and I are being prescribed. As time goes on, I will have to be the advocate for all of Robert's care and I would hate for him to have haullicinations and be unable to explain it to me. If I was seeing crazy stuff and couldn't articualate it to someone, I would probably go crazy. So, pay attention to the medications that you and your family have been given by the doctor. Weigh the good and the bad carefully and decide if it is worth the side effects that might be caused. For us, at this moment in time, this medicine is worse for Robert and the negatives outweigh the benefits - especially when it was prescribed for the completely wrong reason.

Incomplete Diaganosis

A few weeks ago, I was doing some searching on the Internet looking for new information and treatments out there for HD. This is something that I do on a regular basis. I figure the more I know and can learn, the more knowledgeable I will be in helping Robert as he progresses in his disease. I came across some information that I had read before but had pushed to the back of my mind. When a person begins experience the chorea (movement) symptoms, they are hard to miss if you are around the person. However, the movements usually diminish when a person is laying down or sleeping. I know that Robert's mother always seemed to have less movement when she was sleeping. Of course, as the disease advances, the movement will not stop just become less noticeable when the person is sleeping.
So, this got me thinking about Robert. He has "twitches" in his legs at night or if he sits for long periods of time. He can control it for a few minutes each time, but then it reaches a point where he has to move his leg. He cannot contain the feeling anymore. But, it is mainly when he sleeps and after sitting for a lengthy period. When he lays down at night, the twitching kicks in. Not every single night, but every so often. And, it disrupts my sleep so he has to go sleep in another room. He hates it if I get up and leave in the middle of the night, so he insists that I wake him up and make him leave. But, if the movement associated with HD tends to relax at night, then why is it just the opposite for him? His movements act up more, not less. Probably even more so on the days that he doesn't do a lot of standing or walking. I am no expert but to me, it seems like it may be something else that is causing his leg movement. Like maybe restless leg movement? My research on the symptoms of restless leg movement describes his symptoms to a t.
Now I am concerned. He has Huntington's Disease. We know this for a fact and are well versed in the many different symptoms that are associated with the disease. Between witnessing it progress in the various family members to the hours upon hours of research that I have been doing, we know quite a bit of stuff. But, we also trust the doctors to know stuff about the disease, too. I know that this first neurologist that he went to did say from the outset that she is not "familiar" with HD and Robert would need to see a more specialized neurologist. However, this is the same doctor that his sister Debbie uses and she was not advised to seek a different doctor. So, does she know enough about this disease to really accurately treat a person?

All that aside, my fear is that some symptoms that Robert is experiencing and others that might develop over time might get lumped into being HD when they really are not part of HD but symptoms of something else. Maybe because the doctor does not know enough about the disease or because she doesn't want to take the time to do more tests to find another issue. Is it possible that he might have something else wrong with him, too? Something that nobody has taken the time to find out because they are just putting it all under the HD umbrella?

Almost 10 years ago, we lost my grandmother to Pancreatic cancer. She was 90 years old. She often complained of the pain in her side where her pancreas was located. Most of the time, it was dismissed as the fact that she was nearly 90 years old.Both by doctors and herself. It was not until a few weeks after her 90th birthday that some blood work was done by a new doctor that it was discovered. By this time, it had spread throughout her body and there was little that could be done for her. She died only 3 months after her 90th birthday. Could more have been done for her if someone had listened to her a couple years earlier when it first begin to appear in her body? Nobody knows for sure. And we will never know because it was dismissed without further testing because she was almost 90.

Then, there is me. I have had arthritic like symptoms in certain parts of my body for several years. But nobody took me seriously. I am too young to have arthritis yet. Or at least that is the reaction I got until I insisted on some kind of testing being done to check. And even then, the doctor was skeptical they would find anything. Instead, I learn that I have a rare form or arthritis that usually begins showing symptoms in a person in their early 20's! Also, because I have apparently had it for awhile and did not receive proper treatment for it, I am at risk for the more severe complications such as having to have a hip replaced.

So, I know there are many times where a person's symptom gets dismissed because of one reason or another. And since so little is really known about Huntington's disease, it increases my concerns that Robert may have something else wrong with him - like Restless Leg Syndrome - and nobody will take the time to find out. And, as the disease progresses, and I have to be an advocate for his care, I want to be able to go to a doctor and say that he is experiencing this or that and the doctor to know whether it is or is not a symptom of the disease. I also hope to encourage each person and their loved ones, too. It is important to receive proper treatment for whatever it is that you are facing. But first, you have to know fully what it is and not have it dismissed as part of something else that it is not really apart of.

Now, back to Robert and his leg twitches. We actually met with a neurologist today. This guy asked many questions about Robert's leg movements. He spent a good ten minutes on this topic - and made a diagnosis that had nothing to do with Huntington's disease. Instead, he has Restless Leg Syndrome. But, that isn't all. The medication that the other doctor prescribed for him doesn't treat RLS and can be highly addictive. So, he is going to recommend a change in medication to treat the actual problem that was misdiagnosed. So, one doctor just lumped him into HD when that really wasn't even what it was. Which takes me back to the beginning.

He was lumped into the HD diagnosis when his symptoms weren't really part of it. Because one doctor was not knowledgeable enough about the disease, she just assumed it was something that it wasn't. And since it took a year to get in with this new neurologist, he has been taking a medication that really isn't good for his actual condition. I guess I will continue to do more and more research so that I know what is part of the disease and what is something else entirely. That way I can request further testing if I notice something that doesn't fit under the HD umbrella.

A Day in Court

Bill had his day in court today and only spent about 10 minutes in front of the judge!
Of course, we don't know the answer yet - that takes another 30 days but the lawyer thinks the judge will rule in Bill's favor.
As a refresher, I am referring to the long drawn out process began over a year ago to seek Social Security Disability and has been detailed in previous blogs. HD has robbed his ability to hold down a job and he needs income to support himself. And what a long process it has been.We knew it might be difficult. We had read the stories of denial after denial by many, but also saw how easily the approved coverage for Debbie, so it didn't seem like it would be that hard. We really had no earthly idea it would still be ongoing over a year later. However, today could be considered some real progress.

Today, Bill had an appearance before the judge. We found a lawyer recommended by the Social Security office and he was there with Bill and Robert. I have to commend the guy. He did a lot of research and took time to familiarize himself with the disease so he knew what to expect. Of course, he only gets paid if there is an award to Bill so the effort would work in his favor. He prepared a lengthy brief that defined the disease and talked about the issues Bill was facing. He even included copies of both Robert and Debbie's test records showing the heredity pattern. The court has a vocational expert they use to aide in the decision that was with them via speakerphone. This person makes a statement based on asking a few questions of the person seeking coverage and the paperwork that has been provided to him. This expert basically said that Bill could not work for more than 10 minutes at a time and could not function in a normal work environment. The judge seemed to agree and accept this guy's statement and said she would review the information. They spent 10 minutes in front of the judge! Seriously!!!
Now, the judge will review the situation and issue a ruling. This process usually takes 30 days. And then it will take a week or two before Bill sees the money or we move back to the starting line. The lawyer thinks she will rule in Bill's favor because she seemed to agree with the vocational expert. We shall soon see. Of course, there is no guarantee and now we must wait a bit longer, but the chances of an approval seemed to have improved considerably. I feel for the many others that have had to wait for so long and still have not been approved. I hope it all works out in Bill's favor.
I just can't quite believe that we have had to wait for all this time since the process started and the judge is making a decision about Bill's future based on a 10 minute conversation.