Hello all,

Is anyone becoming selfish, or even more selfish, as you progress? Sometimes I forget to do little somethings for my wife or kids or friends. To call back, little things that used to come so easily. Am I making any sense here?

cheers & blessings,
Trey

I would think that it would be quite natural to become increasingly preoccupied, Trey.

PHDs do, after all, have quite a lot on their plates....

jl

I think the key here is to be aware of the changes that happen with HD progression, discuss them with your wife, to a lesser exent with friends, and develop work-arounds.

Memory problems can make some with HD seem to be selfish. We generally assume that people will remember the things that are important to them, so if our spouse forgets our anniversary or a friend doesn't call back (more than once) we think they don't care. The people in your life should know that Phds are more forgetful and it means nothing about the relationship. You can tell your friends, "I have some memory problems now so if I forget to call you back, keep calling. You know I always want to talk to you." Your wife can help by reminding you of things. "Today is our anniversary. How should we celebrate it.?" "Today is Ryan's Little League game. We'll need to eat early."

Write things down that you want to do that day. Make it part of the routine to check the list in the morning and the evening and check off what you have done.

Another reason Phds might seem selfish is the decreased ability to multitask or pay attention to more than one thing at a time. This is because of the damage to the striatum and impaired communication between the cortex and the striatum. When we do two things at once, we make use of both parts of our brain. The demanding task is governed by the cortex and the routine one by the striatum. And we can switch back and forth. So we can have a conversation and pay bills at the same time, for example, giving our attention to what is most demanding at the time and letting the striatum control the routine task (say signing our name to the check, something we've done many times) on auto pilot.

As the disease progresses you will need to concentrate on one task at a time. If you don't hear or see something else that needs to be paid attention to you (for example a friend greeting you while you are putting groceries in your cart at the store), allow your wife to give you a signal, say a touch on the arm, and tell you, "Oh look, Frank is here."

Communication needs to change. Your wife needs to understand that because of the disease you are not going to pick up on subtle signals. She will need to tell you what she wants - let her know that's okay. If you suggest going to a steak house and she really wants to go a seafood restaurant, she can't communicate that by looking a bit disappointed. She needs to say, "We've been to the steak house a lot lately. I would like to go to the seafood place."

I think that you will be able to cope well with this disease. You are not in denial which is very important and you've told us you have a wonderful wife. If you both understand the disease and work as a team to compensate for it, you will be able to have a quality life. And hopefully there will soon be treatments.

Too often I've seen Phds be embarrassed about the disease and get angry when a spouse tries to help. There is no need to feel bad about needing help. It's a part of life, when we age we all need a little assistance. Steve and I are in our 50s and our memories are not what they should be. We help each other. My mother is 85, if she doesn't understand something she calls me.

I've also seen caregivers ignore the disease hoping that it will go away. It won't and knowledge is power. We caregivers can help by learning about the disease and helping to de-stress our loved one's environment, by making communication easily, by helping in subtle ways.

We need to work together!



Edited 1 time(s). Last edit at 08/13/2009 10:48AM by Marsha.

Trey - haven't you also been on the road? That makes it difficult to remember every little thing.

I assume that the break-up of Brooks & Dunn will mean no more being on-the-road.

While any breakup of the group is bound to be traumatic, in some respects - might not some relief be found in it, as well?

I guess that would depend on your financial state.

If you are at all able to - I would recommend that you take a break, for awhile.

If you've tested positive - are you able to take permanent disability?
Would you even want to?

People really have differing thoughts on this......

jl

I keep a nice ziploc bag big enou for a 8 by 10 or legal sheet of paper.I loose stuff all the time. The baag os for the important things to not get lost. You see through the bag and will find life easier without spending your life looking for some dammmm piece of paper. I am a librarian nad hate being beaten by paper. I also keep the pharmacy papers for anything new, govt letters warning me not to loose it. If they did not want me to loose it, they should not have sent it to me. You can keep a callender there too. This year my best and oldest friend forgot my birthdy and I was two days early for hers. You can copy keys before you loose them.

To celebrate not being able to write I got a samsung instinct phone which has a camera etc. I take every person I meet picture, especially the medical team. With 6 months between apts I forget them. I use the phone as an organizer with a warning about birthdays a week before and I have every appointment ringing an hour early so I can get there. Time flies, you have to discipline it.
I also carry a fanny pack with me, technically I have hearing aids, and ventolin for emergency asthma. and all my drugs are in the fanny pack, wallet, keys, drivers license birth certificate.hospital cards.
A back pack works for some but it affects my balance so I have one for occasional use.

I just wanted to say how much I enjoyed Marsha's post . The points are such good ones . And Dusty's come from someone who has done in my opinion an above average job , with handling HD . What I get from the two of them and others is , to the best of your abilities include hints ,and ideas , that has worked for others . They may or not work for each person . But , if they do work , what a blessing in making coping with HD a little easier . db

I think I'm doing just fine....It's my wife thinks I'm selfish ;-).

Sometimes I'll admit to wallowing in a screw-it-all attitude...hey what's the worst that can happen...I'll come down with a rare, uncurable, brain-wasting disease?

Heh.


Oh...and Marsha's post makes a lot of sense too....It's all about the lack of bandwidth.



Edited 1 time(s). Last edit at 08/13/2009 09:23PM by Dathi.

DATHI, WHO ARE YOU?

THAT WAS THE FUNNIEST POST I'VE EVER SEEN HERE!!!!!!

i love a sense of humor in our nutty little family.....
SO ENTERTAINING, YOU ROCK !!!!!!!!

Hi,

I thought it might be helpful to post something here to further explain my husband's question of selfishness and to also introduce myself. I'm Lisa Gray, Trey's wife and although I have visited the site a lot, I have not commented or posted anything so here it goes....

Situation: The other night Trey had called asking/wanting to hang out w/fellow musicians after a taping and a very long day. It was decided that he would go out briefly and be home (his words). This was around 9p and when he came home it was 2a. Now, I had to preface the situation to get to the point of the story on being selfish which is this: I had text him a few times and called him once after 3 hours had passed.....I did this to find out if he was ok since I had not heard anything from our last conversation. Nothing, no response.

Next day: So, when we discussed this yesterday morning I was trying to explain to him the reason this had upset me as he had no idea that I was upset. His response was that he didn't look at his phone in 4 hours while out or think of me to call me. He was catching up on old times with fellow musicians/being sentimental and the time got carried away. I explained that to me it was selfish of him not to think of anyone but himself and hence where the 'selfishness' was born.

Summary (in my opinion)
Trey: can't understand that the lack of call or consideration to me, his wife was necessary.

Lisa: wants to be able to trust that he is okay whether home or on the road, she needs to be able to hear from him and to maintain a connection with him.

Why do I need this?: In all/most the posts I read they stress the importance of communication (as best each can) and the spouse (if one exists) to be the 'rock' as best he/she can as Marsha so clearly expressed by examples. It becomes increasingly difficult to maintain a wife role turned caregiver role if I don't have my husband's trust/communication at least at the very minimum he can give.

Trey and I have the best open, honest, trusting relationship (I feel or should I say I want) and I am very clear and tell him what I need and feel in an effort for him to do the same. How else can I earn his trust and hold onto the man rather than give into the disease? Now, I will admit I am very analytical and those days will have me numbered and already are. I have to give up pieces of Trey to HD which he tells me all the time he has HD and it is getting harder. I will tell him I have it too and it is also hard for me but in diff ways. We both agree that this is the most difficult thing we have had to deal with. The struggle for help/advise/understanding not only from others affected but also from each other becomes more and more challanging.

I'm not naive, bitter or in denial about HD. In fact, I feel all things do happen for a reason and part of God's plan (one that he had for us before we were even a thought). BUT, I will not let HD take us both. Yes, we allow ourselves to have 'pitty parties' and at the end if we can't end on a positive thought with a smile in our hearts then to me, it has us.

We have other struggles and more situations like the one mentioned that we are currently working on. The one that I call 'selfishness', which isn't the correct word, yet my only way to label it and another of anger. It is so hard to put into words what he feels (I see it on his face). So the real battle for Trey (&I) is trying to identify what the struggle even is at the time and then in turn I can help/react or just listen accordingly. This is something I can work on and am willing to do anything to achieve.

I very much appreciate all the love & support you have given Trey, my step-daughter Spencer who has also posted here and in turn me and our family. Trey is the best thing that has ever happen to me and meeting him has made me shine and feel for once that I have purpose and meaning. To me, Trey is a musician (a very talented one at that) but seeing him deal/cope/struggle with HD has not only made him a better person, full of purpose and meaning but to me he is the gift of HOPE.

Thanks for reading and listening to me and I hope that sharing a small part of our life is helpful. I know it is for us.

kindly,
lisa gray

Lisa,

He won't always be able to understand.

Lisa, Thank you for joining us. Thank you for sharing your life with us.

Hi Lisa,

Welcome. Reading your post made me feel like I was reading something that my wife or family have said to me in the past/present. The situation that you described with Trey is something we have had several discussions over the last couple of years and it seems to just get worse as time goes on. For myself, I know that I will go to do something for my wife and then I become involved with something entirely different and before I know it time has gone by without my realizing it. Five hours will seem more like 10 minutes to me. I think alot of it has to do with my mind can only concentrate on one thing at a time. I become fixated on things and even when I do set reminders for myself or someone will call my mind is on one track and I store other things to the side with the belief that I can remember to do it in a few minutes which of course I forget right away For me, it is the simple things that I forget to do like calling to say that I will be late and everything is fine.

Take care,

Mel

Dear Lisa,
My husband has HD. I know how difficult and challenging life can be with HD. It took me awhile to understand that my husband wasn't being inconsiderate of my feelings, it was just that with HD he has difficulty seeing the whole picture. He has his concerns ( only the computer) I have to be concerned about everything else. My husband has become obsessed with being on the computer. He will forgo bathing, eating, sleeping etc to be on the computer. I can tell him my concerns and he will acknowledge there is a problem , say he'll change and go promptly back to how he was before. Medication does help decrease the obsession, he will be on the computer, but at least now he will eat, bath and sleep. Lack of sleep can make the obsession worse. It is best to see a psychiatrist to recommend and adjust medication, the psychiatrist can work with his neurologist. My husband neurologist recommended having the psychiatrist involved and this has worked out very well. Also, with HD as Marsha stated the pHD has trouble multi-tasking. You might consider when Trey is out with his friends that there is someone with him you can call if Trey is not answering his phone. HD changes everyone it touches, roles change, relationships change, not all at once but in little pieces.
Debra

Lisa!

Welcome to the post!

How long have you and Trey been married, again?

jl

Hi Lisa, thanks for posting, I am also a caregiver to my husbands former wife and to my former husband long distance. Welcome!.. You have a special husband with HD who recognises his symptoms that is not the norm. Keep talking and discussing with him, that's the key. He sure sounds like he's willing to work with you. THeir world does tend to get a bit smaller just make sure you stay in it with him. All my best, Pat



Edited 1 time(s). Last edit at 08/14/2009 06:24PM by mrspatwolf.

Dear Lisa,
I am Dathi's wife. I totally understand what you mean by selfish. I have had several arguements
with him about not checking in and causing me to worry. He gets upset that I nag him at times over this and other things that are changing. I honestly don't know if it is just him being a guy, or if it is the HD affecting him. I sometimes think if I nag him, it will just be about him being a guy and I won't lose him to something I have no control over. We have two small children and I am grateful every day that he can spend time with them and enjoy them. I pray he will have many years where his symptoms will not progress any further.
When I first met him, many years ago, he told me about his HD. I told him I could get hit by a bus tomorrow but I wouldn't wait in the bus stop to get hit. Life goes on and we have to live it the best we can. I try to count our blessings every day and pray for a cure for all of those with HD and the loved ones who are affected by it.
By the way, Dathi says I should tell you to lighten up on Trey, I think he's really saying that to me as well. I don't know if they know how much we truly love them and worry about them, a guy thing or HD thing?
Let's all pray for a cure and for lots of patience while we wait. I know we have the love. Hang in there.
Love,
Mrs. Dathi



Edited 1 time(s). Last edit at 08/14/2009 07:12PM by Dathi.

LISA,

WELCOME...

everytime i read your husbands posts, i think he sounds
like a little boy apologizing for stealing a cookie
out of the jar...
these are serious incidents for sure! okay i guess
you can tell i am trying to tease you guys... i mean
seriously, if these are the worst symptoms he has,
i would be ecstatic... there may be bigger things to
freak out about later.

you know i am an exwife of a musician myself. when i
was 18 i married someone with HD, so i understand that
side of it. after we split, i married a musician, who
played keys, he was also a songwriter, and did alot of
studio work. he played blues so its probably not a genre
you are aquainted with. but at anyrate he toured the
world with many bands, sometimes gone 6 months at a
time. listening to your story about the not calling
incident made me smile. musicians as a rule, dont like
their women to be clingy, i had to learn the rules...
so if TREY has made it a habit of checking in with you,
kudos to him for being so well trained...

listen LISA, these are still the good years, make out of
them what you will...
If you think you have been given this circumstance for
a reason, your probably right. you must have a strong
backbone, you are the lucky one to travel this road with
this man. you are the one that has the strength, the
patience, the giving spirit, the love. you will be the
calming influence in his life right?

its a crazy world, but we will get thru it...

It will work out LISA, you guys will get thru this,
and if we hang in there, we may see a treatment come in
just the nick of time... keep the faith...

Hi, Lisa,
Tony and I have been married 47 years. During the first year, I almost became a widow and a murderess on the same evening. Tony was working on his engineering degree at the university and I was teaching in a small town fifty miles away. He was usually home from school when I got home but on that particular day he wasn?t. At first I didn?t worry but by eight o?clock I was concerned. The road to the university was mountainous, narrow and at that time very icy. I thought that maybe he had stayed to have dinner with our friends there, but when I called they said they had not seen him all day.

I paced. I cried. I paced more. Of course there were no cell phones back then and Tony was driving our only car. I thought about calling someone to help me look for him but I didn?t want to be away from the phone. By eleven o?clock I was sure that his car had slid off the road and down the side of the mountain. There would be no traffic at that time of night to stop and help him. I was frantic. It was midnight when I saw the headlights of our car turn into the driveway. I flew out the door and gave him the biggest bear hug that he probably ever got in his life, then told him how worried I had been. It was very simple and logical to him. He had been given an assignment that required research in the library and decided to stay and do it on that day rather than drive back the following day.

It was not an HD thing but a guy thing. I have never been so angry in my life. He was not selfish or inconsiderate, though. To be selfish he would have had to think, ?Maggie is going to be so worried but I don?t care. I am going to do what I want to do.? He didn?t think that. He didn?t realize how concerned and scared I would be. He was thoughtless. Growing up with a non-nurturing HD mother had made him very independent and not used to having people worry about his safety.

Looking back over those 47 years, I smile when I think of our hikes in the mountains, sailing on sparkling blue lakes, our trips to hunt for fossils and even the hard work to grow our family business. If I had to give advice on living with HD I would say to hold hands, hug and laugh?a lot.

Very good post, Maggie!

jl

agreed to the above comment by dalthi-- I havent laughed in 4 weeks and I just did. thank you. kag