Each person with HD has a different emotional and mental and physical experience. The caretakers experience is different than the person who has HD. Reading about HD from the point of the person who has it , is totally different than reading about it from the caregivers point of view . I am learning that if communication is possible that it is best for me ( in my situation as a person with HD) to learn what another person with HD had to deal with and is going thru dealing with the changes in their mental processing and emotional responses and that altho they may have trouble communicating verbally that they are not stupid nor do they have dementia, but they have a communication and emotional response problem because of the area of the brain affected by the HD.

I, personally, no longer choose to communicate on the phone, but do well in writing and texting. I need to write and have responses in writing in order to process by reviewing what was said until it is clear to me , I can do this in writing but can not when it is only the spoken word, I am learning to avoid much misinterpretation and misunderstanding by communicating in writing instead of verbally when it comes to business, doctors, legal matters. This is a huge thing since I am a very verbal person.

This has been in my family ( undiagnosed)for several generations and for my family it seems to make an appearance in the women post menapausal, and I am unsure about the men as far as time of onset. I am grateful that in our family it is not physically dibilitating and that the chorea is minimal except in times of extreme tiredness or stress. My mother had symptoms for almost 20 years before being diagnosed but they were attributed to other things until she was seriously injured in a car accident and during recovery it became very obvious to every one that something else was going on besides the injuries from the accident. My dad had told us mother's behavior and responses and thinking had changed but we children did not see it and mostly no one but my dad noticed the changes since they were changes in her communication processing and responding and in her being able to adjust to scheduling and interruptions in day to day routines.

I chose to be tested for the sake of my kids and grandkids. If I had tested negative , none of them would have needed to be tested. But , I did test positive and the awareness of this has made me more sensitive to the changes that I am experiencing ( since menopause) in my ability to multitask, to accurately remember the spoken conversation and the ability to use tact when responding to emotionally charged situations . It is almost like the filter that says"this is not appropriate response at this time" has been removed and things I should not say but I feel strongly about are said anyway before I realize it.

I have unintentionally hurt my children and grandchildren by my emotional outburst to things that upset me. Being aware of the cognitive side of the affects of HD, after doing much reading , has helped me to not be in denial that there is a problem and that I do respond inappropriately and that I must be aware that when I get emotionally upset or have very strong opinions about something that I need to walk away or go to a safe place until I am calm because the cognitive responses are out of control when I am highly agitated.

I still work full time, as this progresses I have gone from managerial positions to positions that are more of just do the job and than go home. I no longer can affectively deal with the responsibility of the decision making and the dealing with those in positions under management as a professional. Since I have done the research and know the progessiveness of HD, it has allowed me to make the decision on my own to take positions with less responsibility instead of allowing the situations to get out of hand and losing the job involuntarily.

Where before I could handle a house full, now I limit who comes and for how long because when I get overwhelmed or tired when my routine is changed and I am unable to adjust and become defensive and offensive. If I am aware of that these situations that I react to negatively, then I am able to avoid them some times by just planning to not put myself in a situation that stresses me. My social life is more limited. My kids also try to help by limiting the length of time that I am responsible for grandkids by myself, and the responsibilities I have when they are with me, like just fixing a snack instead of a full meal, or just playing instead of taking them to run errands. I am learning my limitations and what overwhelms me .

The cognitive effect of HD has been such a huge thing that I was not made aware of when I was diagnosed. The healthcare professionals all talked about the physical problems , but they did not talk to me about the mental, emotional and communicative effects that would be a part of this , neither did they help me to make plans on how to adjust to these changes and make my family and those close to me aware of the changes that we all would have to adjust to as this progresses. Being aware that the person with HD is not intentionally being offensive or defensive is a huge step in helping both the person with HD and those who are in contact with them, whether as caregivers or just as friends and family.

These are just insights from what I have personally experienced .

sonshinesandi,
thank you for the post you wrote. It was very well written and It really helped me alot. I am the wife and caregiver of someone with HD and I get soooo flusterated with him sometimes that I am the one who blows up and has the problem. not him. He suffers very bad with the cognitive side of HD. He suffers physically but like you, mostly when he is tired or stressed. I do really good handling him when he is having a bad physical day, such as dropping everything, not being able to complete a simple task, or can't comunicate with me verbally very good...I can have the compassion for him that I am suppose to have.....it's the days he turns into a monster and is so mean and degrading to me that I cannot handle....It is those days that I can't stand the sight of him and I really hate that cause I want to love him thru this.
Keep writing your experiences please cause it has helped me to see things from your point of view.
liz

Excellent! Having HD, it is somewhat reassuring to see this from someone else.

Mike

Sandi,

Great post!

Will

Sonshine,

I tested postive with a CAG count of 42 and am going thru a simliar thing as far as work goes. I used to work in the field service dept. for
my company and after I told them I had HD they tried to simplify things for me too. They took away my travel. (don't miss all the flying)
and visits to customer sites because I not longer could finger out problems the way I used to. I now work in customer service where all I
do is talk with customers all day. Even that I am starting to have problems with as I tend to easlily forget things I was talking to the customer about. In a awkward position as I'm not able to do my job very well because of HD but I'm not bad enough to go on disablity yet. They
do have long term disablity. Every day is a struggle at work and almost wish I was furthure along so I could start on disablity.

I'm glad you found this web site. It has been very helpful to me with all sorts of info.. Any time I need a pickme up I break out one of
Wills stories. There are many more caring people on this web site so feel free to ask anything.

schlink

Welcome Sonshine Sandi,

Thanks for your post! I'm glad you're able to keep working - they must know your limitations and adjust your job requirements as they/you need. I have been able to keep a part-time job, while being on disability.

I also tested for the sake of my children, and with a CAG count of 42, late onset is common in our family. Neither of my children have been tested, and one just had a baby, but we are counting on the cure to be here shortly!

Judy Galasek (tellie)

I appreciate the feedback. It is encouraging . We just have to keep on keeping on one step at a time.

Just want to repy to the caregivers... I have found out that I ( as a person with HD ) when I get tired, must immediately say" I am tired, I have to stop, and then for me, I have to walk away and go take a nap. It may be 15 minutes, it may be longer, but if I try to be polite and socially correct it always backfires, I MUST quit whatever it is, talking, cooking, playing, grocery shopping, and go lay down or the UGLY side of the HD emotional responses will come out. My son in law would say " we have a nice bed, go lay down"..... but I had to go where I felt safe, and where there was no outside stimuli or noise and that was in my own vehicle, I would go get in my truck and put the seat back and take a little nap. Any outside stimuli ( hearing the kids in the background playing, the radio, the tv, normal conversation of others) would disturb me and not let me rest and I have to eliminate all of that. I have to turn off the tv, the radio, and get quite and rest and then when I wake up I am usually ok.

At work, my immediate supervisor understands that if I ask for help they need to come immediately and take over because something out of my ablility to handle emotionally has happened and to avoid embarrassing outburst , and misunderstood responses, I need to remove myself from the situation for a few minutes.

I am not able ( at the time ) to explain what has happened, I just must move out of the situation, to a quiet spot and regroup. For me , this happens when a something pushes me out of the usual routine or way of doing things. I have to do things a certain way, everytime, every day with every person. If my usual routine is interrupted , I must have time to process. If my supervisor is changing what they have me do, they tell me the day before so that I have time to process what will be changing . If it is a surprise to me, even tho I do not intend to react, I get highly emotionally upset and verbally loud. This is embarrassing to me and to them. So, I put in writing that I needed ( because of the HD) to be given ample time to process any anticipated changes to my normal responsibilities and usual routine. This is not perfect, but it has limited my emotional outbursts and unintentional rudeness . I am ok 98 % of the time. but that 2% when I am not is horrible and terribly embarrassing to me and others.

Your spouse may not have been able to process that it is the small unexpected changes, dinner at 4:30 instead of 5, or expecting apple pie and getting a chocolate chip cookie. The kids coming home at 1pm from school instead of the usual 3:30pm. You asking for my dirty laundry before I take a shower instead of after I am finished........... I can not stress enough how important it is for the HD person to have a routine and know ahead of time what to expect. Any changes, even good ones, must be processed. So, if the dr. appt is moved from 10 am to 8am, give me time to process, don't just come in , tell me and expect me to be able to adjust immediately .....I can not......This is part of the processing problem with the area of the brain affected by the HD.

This applies to changes not initiated by me, the person with HD, if I am the one doing the changing, then I have already processed what is happening, If you are someone else initiates the change and I am not given time to process and I am startled or surprised then the uncontrolled over the top emotional responses show themselves and they are NOT PRETTY and altho I do not intend to over react, that is what happens..... Again this is changes by others in the normal routine that I ( as person with HD ) experience, not changes in routine that I initiate.

Again , this is my personal experience.



Edited 2 time(s). Last edit at 08/02/2014 02:05AM by sonshinesandi.

Thank you everyone for sharing your stories. Schlink, I do have one concern for you, but maybe it isn't a problem. When you have been demoted, because of your hd, is there also a pay cut? That is my concern. If you are taking pay cuts, you will not get as much on disability as you would have before the demotions. If your pay has stayed the same, that is good. But, another big concern is this. We've seen several times on this forum, someone with hd getting demotions, and then suddenly they are let go. Boom, ALL benefits are lost, gone. So, let me ask you this. Is there even a slight possibility that could happen to you? I personally think it can happen to anyone, even if the company is appearing to be supportive. Something you should consider. You say you're not bad enough yet to go on disability yet. I beg to differ with that. You have been getting demotions because you are no longer able to do your job as you always had. That means right there that you qualify for disability now. It's up to you, but I think if it was me, I would immediately take a sick leave, So They Can't Let You Go, and go to your doctors and say you are not able to do your job as you used to, have your gp and your neuro put you through for disability during that sick leave time. That is the only way to truly secure your job benefits that you will need. I know nobody likes to have to give up their job, but you need to seriously realize the risk of losing it all, and it can all happen in one split second, and then it will be too late. Just something for you to consider

sonshinesandy. thank you for again posting an awsome post....as I read it I can litterally see Donnie in what you are saying....no one has just ever said it in that way...breaking it down in laymans terms I guess...It really helps to read that and in reading that, I can try harder in different areas to help donnie in this way.
I am at the point that we are going to have to start sleeping in seperate beds. It is an absolute nightmare to try to sleep with him. he hits me all night long, and he tosses and turns, talks, moans, flips and flops to the point that I sleep curled up in a ball with my arms over my head trying to protect my face from being hit...I wake in the morning tied in a knot and very tired.....he had already went to bed last night so I thought I'd just sleep in the other room without telling him....well, that didn't go well, about 2a.m. I woke to him turning on the light and yelling at me for not being in our bed, and how could I not sleep with my husband...I said Donnie, I'm sorry I just can't we'll talk in the morning....he left the room still fussing and mad as fire....this morning when he woke after he'd been up for awhile he came in there and sit on the bed and said "whats' wrong" I explained to him that I just couldn't sleep with him anymore and that it was nothing personal and HE SUGGESTED...we get two twin beds for our bedroom and was very understanding about what I said...I was just in shock...It is so unpredictible as to how he will respond, but you have helped me understand his way of thinking better. It is so great that you still have a grasp on this and can control it.
Liz

Hey Barb,

Very good points you are making, right now anyway they haven't cut my pay or brought it up in my discscussions with my boss. They however
are wanting me to try and learn new products to support so I have something to do and since my focus and memory are not so good that will be a real challenge. Right now I a'm able to live by myself and take care of a home athough doing the chores are getting to be a challenge. As long as they continue to keep my pay the same I am focusing on building up my savings and paying down the house. Our company has had many
finacial challenges and seem to have layoffs fairly regulaly. The staff has probably been cut in half . Since I started 15yrs ago.
I agree with you 100% they would love to kick me out the door as my abilities fade. I didn't realize by your definition I would be considered
eligable for disability now. What you say makes sense. I am able to drive though I keep it to around town. I also keep a home going more or less.
Like everyone else I have trouble with the heat and stamina. But right now I am able to muddle through most jobs. just not able to re-model a
bathroom anymore.
I agree with your suggestion of how to start the disablity when I feel I'm ready. taking the sick time and getting the needed info from the doctors
sounds like the way to do it. Just keeping my fingers crossed I hang in there for a while longer yet. Thanks very much for your thoughts. I feel I
will need to put them to use sooner then I am hoping for.

Again, thank you all for the input in this conversation. Concerning the sleeping in separate beds in order that you both may get some rest. I am now a widow so this is from observation of my parents who have been married 61 years August 23. My mother has HD, she was diagnosed the fall of 2009 at the age of 78. They are together in a nursing home now.
My mother was always somewhat of a restless sleeper, the deeper the sleep, the more the movement, if she was still she was awake , but "playing possum" so as to not wake anyone else. When I was 5, my parents got there first kingsize bed ( two twins , one headboard) , as life progressed, mother in her late 7o's two twin beds with a night stand inbetween, this was from necessity and it worked fine. It allowed the companionship and the intimacy to continue and also each one to get the much rest. If the movement gets so that even in separate beds the HD sufferer is disturbing the spouse's rest , and ear plugs do not work, then discussing that in order to get rest , the spouse caregiver may go to another room to sleep and that it is not rejection will help to reassure the HD sufferer that they are not being abandoned but that this is a thought out plan to help both to continue to support and love each other and deal with the affects of the HD in this area of sleep.


As to worring about loosing a job, being demoted. I will explain my point of view and reasoning. My husband was disabled for 20 years before he died. He fell off the top of a loaded 18 wheeler and landed on his neck and back. We went thru the process of applying for social security disability and there are very specific guidelines that apply. I did all the paperwork, and know what is involved.

Pertaining to HD, This has been addressed in other posts and you can access how applying for disability applies to those with HD.


Concerning choosing to take positons with less responsibility and maybe less pay and benefits.........

My security is not in my job, any one at anytime can loose their job whether HD is a factor or not. No matter how long a person has been at a job, there is no true job security. My security is not in my job, it is in my Heavenly Father. I get my paycheck from Wal-Mart, I serve and work for the God of Creation who knows and sees the end from the beginning .

Yes, I do have medical insurance and disability thru my job , but if I have read all the information correctly , it is really not security. My children and I know that eventually I may need full time care, and a small camper trailer is still more freedom than a nursing home, unless I become dangerous to myself from the progression of the HD,( mental dementia, or physically incapable of caring for myself). Which we have discussed this also and the possibility of needing full time medical care.

In my personal case , because of the way HD affects my family, it is more likely that I will need some care but not require full time medical care.

This is something that each and every HD person should discuss with their family now, when they are able to be part of the decision making process. If you have the financial ability you should not delay making arrangements legally to provide for yourself if and when the time comes that you are unable to care for your self or make sane decisions. Sell the big house, make your choices now how you will scale back to an efficiency apartment or tiny house or mini-trailer.

There are many mini-homes on the market now that would nicely accomodate a person that does not require 24 hr medical care. These are small enough that unless there are zoning restrictions , they would fit nicely in a backyard on a normal size lot. There are even mini medical efficiency rooms that allow visual and medical monitoring remotely. You must include your childern in this process because they will be involved unless you can afford and choose ahead of time a care facility. I can not afford a care facility, even with disability insurance. So, we, my kids and I, are looking at other options.

Altho we have not made a decision that is set in concrete, it looks like having a mini-motorhome or trailer that will allow me to have my own space and my own routine and my own familiar surroundings ( no matter where it is parked) will be best. Since I have 5 children , 13 grandchildren at present, and they have all expressed that they are willing to help care for me if and when the time comes, a trailer or small motor home that can be moved easily so that no one has all the responsibility all the time, so they share the responsibility and I am not"totally uprooted" as each takes a turn seems to be the best option for me.

As a person with HD, we must also consider that some of our children and grandchildren may also test positive and the way we choose to plan will either be a point of hope or discouragement for them.

So, yes, I have considered the demotions and the fact that I will eventually be unemployable . Right now, I am still part of the process .

Please do get familiar with the Americans with Disabilities Act and what an employer can and can not do legally in the situation of a disabled employee. The legally disabled, ( and that includes the disabilities that comes with the progression of HD ) have rights that are protected and if you are aware of those rights, you will be better able to ask your employer for options mandated by law to those for those who are disabled that prevent discrimination on the basis of the disability.

Please do communicate with your employer and supervisors IN WRITING. This is very very important . Keep a copy of all written communication concerning your job and responsibilities and your requests for reasonable accomodation that pertains to your disability. When this is in writing there is less chance of violation the Americans with Disabilities Act or misunderstanding of requests for accomodation.

I am still learning, and I am a procrastinator so altho I have obtained a lot of information and am processing it , I too am still have many legal things to arrange while I am still mentally able.

Again, each HD sufferer is dealing with different circumstances with their HD, within their family and their job and their financial situations. While it is good to get input from other HD people, what works for one family may not work for another, but the more information and options we have , the better able to successfully cope and offer positive choices for those descendants who may be at risk for HD.

Sandi



Edited 1 time(s). Last edit at 08/02/2014 02:07AM by sonshinesandi.

Schlinky, I'm glad my post was helpful to you.
And sonshine is correct in the following statement, but it doesn't always work out that way:

Sonshine said:
Please do get familiar with the Americans with Disabilities Act and what an employer can and can not do legally in the situation of a disabled employee. The legally disabled, ( and that includes the disabilities that comes with the progression of HD ) have rights that are protected and if you are aware of those rights, you will be better able to ask your employer for options mandated by law to those for those who are disabled that prevent discrimination on the basis of the disability.

The fact is, a dear woman on this board followed all the above protocols. Her workplace was very good at accomidating her hd disability, or so it appeared. One day they decided to let her go, and she took them to court, and she lost. Why did she lose? Because they said they did not let her go because of her disability, but because of economics. They won.

Benefits are important to some people, and the fact is I've seen many people on here, mostly caregivers, say how their phd (person with hd) was fired and lost all their benefits, because they did not realize soon enough that the hd person was not performing their job well any more. Knowing when to take sick leave is so important, hope this helps schlinky.

Sonshine, your post was too long for me, because I have hd too, and long posts are difficult for me, but you made some very good advice about planning your future to the best of your ability, while you are still able to. I too have done this, because like you, I have hd, and am also a widow, and becoming a widow really gave me the kick I needed too, to make arrangements for my future.



Edited 2 time(s). Last edit at 08/02/2014 01:06AM by Barb.

Thank you Barb for the input and I do apologize for the length of the posts. I will try to keep them more concise.

Yes, loosing a job can be for other reasons than the disability and that is a very good point to remember.

We, none of us, have true job security whether we are a PHD ( person with HD) or not. The ADA ( American's with Disabilities Act ) has guidelines that are for our protection but they will not protect your employment if you can no longer perform the job required . Each person with HD does need to have someone in the company they are employed with who will honestly help them to evaluate their ability to actually do the job assigned. The PHD is not, I repeat this , NOT capable of making that call about themselves even tho the PHD is aware of changes and limitations. We, the PHD, need to consider ahead of time what we will do when we do loose our ability to continue in the job we have at this point and time.

If your employer does not have positions that are going to accomodate your increasing loss due to HD then you must choose whether to change employers or just hang in as long as possible. This is a given.....The Person with HD.... will gradually become less and less able to do the job at the level of professionalism that is required.... the PHD must choose to consider this and plan now , while they have the ability to make the choice for themselves and not have it come to being involuntarily let go . Let us face reality and with the help of our family and hopefully a caring employer look realistically at the options that will be available and have a plan on what we will do before the ultimate "LOSS of JOB" with our current employer happens.

Again, each person's situation is different but we all will ultimately have these decisions to make whether HD is a factor or not, all humans age, all humans face illness and most will face some form of physical, mental and emotional changes as we grow older. How we choose to face this reality and plan for it will help to determine the ease with which we and our families will continue to walk toward the enevitable future we all have of growing older and the factors and limitations of life that come with age ... and HD ....or whatever you personally have to deal with.

Whether we are facing HD, fibromyalgia, Cancer, dementia, or other illnesses , this is all part of life, and should it should not come as a surprise. After all, NO ONE gets out of this life Alive. 1 out of 1 will die, it is just a matter of where and when and how we choose to face this fact.

Let us face it with a positive attitude and make plans to leave a legacy of HOPE as we courageously live our lives day by day. We are the example for our children and grandchildren . No one has a problem free existence. Step by Step, one day at a time, choosing to focus on what is right and good in our lives and consciously facing the realities that growing older brings to all of us.

No sonshine, they will not protect your employment, BUT, do not discredit the advice I have given from a lot of experience on this forum. You can't protect your job, but you CAN protect your benefits, by taking a sick leave, and then going on benefits. I'm not blowing hot air, I have seen and experienced many people do this, and yes, people with hd HAVE done this, because they had the awareness that they were no longer able to perform their job to their top ability due to their disability. And yes, they took a sick leave, went to their neuro, got declared no longer able to work at their job due to their hd, and they were able to leave their job with their medical, dental, and life insurance benefits. So DONT say that someone cant get disability for not being able to do their job any more, yes they can! IF, IF, they take that sick leave before being fired. So donèt tell me that cant happen, I have seen this happen. AND, I have also seen where the phd had no awareness that they werenèt doing their job well, and they got fired, and they lost out on benefits. So yes you know stuff, but you donèt know it all. I was trying to warn someone with hd what could happen if they donèt take charge of the situation, so donèt take that warning away that I have given.



Edited 1 time(s). Last edit at 08/02/2014 01:30AM by Barb.

Hey everyone, I guess this is a good example how hd works. Me with hd, and sonshine with hd, each with our own opinion, and each getting fixed on their own idea, and having difficulty accomadating another person. So, I stick with what I said, but, this is sonshineès thread, so iève made my point twice, and donèt need to say it again. Sorry ièm not as accomadating or flexible as Ièd like to be, but, such is life when youère not feeling well

So sorry Barb, You are 100% right.



Edited 1 time(s). Last edit at 08/02/2014 02:23PM by sonshinesandi.

YES BARB.....YES, YES, YES.... I do agree about applying for the disability as soon as you qualify. I apologize for the misunderstanding. Not all have jobs that will allow us to keep those benefits and again, I was looking at things from my personal situation. That is why all this input is good and right!!! Applying for disability as soon as possible , even if you are rejected to begin with, puts you in the system and you can appeal and when ( yes, I said when) you are approved the benefits are retroactive to the first application date if you do not withdraw it and start over.

YES! apply for Social Security disability do this as soon as it is possible to start the process medically.

As the mom of 2 sons with HD, I was closely monitoring my sons ability to continue working. He was having some issues but when I would ask him he would say everything was fine. One day a friend of mine who was his foreman, called me. He said I needed to get Mike to the doctor because he was making many mistakes at work and had just had a verbal outburst on his boss. He knew, as did the company, that Mike had HD.
I immediately called Mike and told him to call in sick, got him an appointment with his neuro and started the disability process. He thought he was doing fine! As I delved into this with him, he said that he had made mistakes that had cost the company money...cutting material the wrong size, using the wrong material for the job etc. He had operated a forklift but had recently damaged a piece of equipment with it...on and on. He injured himself at work and didn't tell anyone. All this came out as I was asking him after the fact...he didn't know how close he was to being fired.
If you have a disability benefit at your work, you need to get out before they fire you. Ask a trusted friend for an honest appraisal of your work and listen if you get one. Mike was mad at his foreman for calling me, he felt it was a betrayal...I feel as if he had a guardian angel.

Take care everyone,

Carla

Thanks Sonshinesandi - re your first post

I showed this to J (he has HD) and he said he would be interested in other peoples experiences this is a good thing as none of his family seem to have this (although his mum and dad will be tested this august) and we have no knowledge, experience or support within the family to try and understand this and see what the future brings. we are speaking with medical professionals but it is getting feedback from the people who suffer from HD = J said he wanted to see more posts so Im glad as he said that lot in your post really hit home wih him - Im glad he at least can read and take some solace in your experience

J and I are so lucky as we live in Europe so dont have what so many of the problems re disabilty benefits via the state/health system and I thank God for that

Thank you again Dx

PS - I saw that Barb had said youre post was too long - for J with HD he read it then reread it many times - as I did - so it worked and helped us!



Edited 1 time(s). Last edit at 08/04/2014 06:55AM by Dece.