My husband and his mother are amazing artists. It seems everyone I have met or talked with who has HD is artistic. Have you found there to be a high percentage of artistic people with HD?

My Wife was, drawing, painting, decorating, arrangements, jewelry, etc.

She now has a flair to collect and pile as much brickerbrack on flat surfaces as possible, in what she sees as artful.

I haven't noticed this, but don't know a lot of positive HD people

My husband was the most amazing pianist. He taught himself to play at the age of 14 (He is 37 now). He had to sell his keyboard a few months ago because he couldn't play it anymore. He said that was harder than giving up driving. He was a painter too and my house is full of his paintings. He was also an actor and a singer. He wrote a song for our wedding in 2000 and sang it to me during the service.

That is so sweet sunnyjen. It is so sad when they lose the ability to do what they love! My mother in law doesn't paint anymore because she says it hurts too much to stand or sit for long periods and it hurts her shoulder. She had numerous surgeries years ago due to an xray machine falling on her (she was a tech) and breaking her back. My husband is a graphic artists and still works, but can't do his drawing and painting, sculpting and wood work (he is amazing at basically everything) due to his pain issues from neck injuries.

This is interesting!! My dad was an amazing drawer/painter too! I definitely didn't inherit that.

From my perspective I have to say I have disconnected from my abilities since becoming symptomatic. The mental vision of things and the ability to transfer that image to my wood just doesn't roll off my brain anymore. In fact the creative side of it is somewhat numbed. You have to think harder, the drive is not there not to mention the confusion around power equipment.

Mike

My immediate family has always been musical. I just wrote about it in my latest blog.

My father, who was the HD carrier, was a wonderful singer. My mother, who is still living, is totally tone deaf! I think that music, like a good SSRI antidepressant, can lift the spirits of those with HD and their families.

My tone deaf mom, though, is very talented in art, gardening, genealogy, and many other areas that I did not excel at all!

Judy Galasek



Edited 1 time(s). Last edit at 09/04/2014 06:37PM by tellie1.

Pretty interesting point. Im artistic. Love to paint, draw, whatever I also have HD. My father and brother have it also. My brother is pretty creative too I think. He makes things with wood and stuff.

Mike, you said, "From my perspective I have to say I have disconnected from my abilities since becoming symptomatic. The mental vision of things and the ability to transfer that image to my wood just doesn't roll off my brain anymore. In fact the creative side of it is somewhat numbed. You have to think harder, the drive is not there not to mention the confusion around power equipment."

I have HD, too. I think you describe what it is like to not be able to do what you used to be able to do very well. Thank you!

Some people wonder why I am able to describe what is going wrong with me but still not able to do anything about it. I try to explain that different parts of the brain are involved. For example, I can sometimes recall what has happened if there is a story I can tell about it. My story telling still works okay. However, if someone wants me to learn new information and recall it or asks me questions that are open ended that I must answer, then I struggle to do that.

Margie



Edited 1 time(s). Last edit at 09/27/2014 08:08AM by Margie.

Thank you for the comment Margie. That helps validate my feelings which helps me in my understanding. We don't get this in a Doctor's office. In fact that may be a good article topic.

I think this is a real problem for a lot of us. Drive can be described a lot of ways but when it is there but it isn't, how do you describe that to someone who has not experienced it. I don't think you can. It certainly isn't that you are lazy or could care less, there is some disconnect in the works here. When we speak to a "normal" person and you try to explain I'm not sure you can.

Initiation may be what is at work here. That seems to fit as well. I also think fatigue plays a big role and as you said a lot of things in your brain are amiss.

Just had a conversation with one of my son's last night about how a few things that would help me. Cigars and walking were among them. He doesn't understand. I want to do both but getting started is almost impossible and sticking with it more difficult. He thinks it's an excuse when it really isn't. Let me rephrase that. He thinks I'm not trying.

I fully understand how you recall things. If I start and I hear someone else say something I may completely lose my thought process. Yesterday I had a conversation and gave them a name and in a few minutes was asked again who that was again and I only had a blank. New information is also a problem. Sometime a little bit of new will work but other times I can't recall the information or understand it fully. I forgot I had eaten lunch a few days ago knowing I wasn't hungry but it dawned on me after a bit.

Thanks for the response. I would actually like to hear more about this. Maybe we need a new thread. We haven't had many lately. I could go on and on. I bet we aren't the only ones who feel/experience this.

Mike



Edited 2 time(s). Last edit at 09/27/2014 03:22PM by mikee.

Hey Mike,

You descibed very well the stage I seem to be at. I still try to work and sometimes when trying to absorb new information it seems to
pass straight thru my brain and out my ear. Very frustrated not being able to readaly do the stuff around the house I used to do with
no problem. I also seem to have lost the desire to do all the different things that are part of keeping up a home going. I planned on
doing some repainting I knocked over the can of paint on to the garage floor. Lost interest in that project after my oops. Seem to have
alot more oopes now. Have one everyday. As far as being artistic I can't draw a straigt line even before symtoms kicked in.
The loss of doing everday chores easily is what gets to me the most. I to have simalar problems with thought process. Memory is
so eratic I'm having a heck of a time doing my job which is talking to customers. I find myself slurring more duriing my talking and
like you will forget the customers name or what we are talking about sometimes. Kind of in a odd spot. Having trouble doing my job
but not bad enough for disablity. I still keep a house going by myself(sorta) and am able to drive OK.

Schlinky, first, I understand what you're going through also, I'm early stage too, fortunately for me, those same symptoms for he have improved, to the point of almost being nonsymptomatic now, not me saying that, my doctors saying that, I've just been lucky.
But I have a real concern for you. You say you are struggling with your job, but not enough to go on disability. I'm sorry, but I have to tell you the truth. If you are struggling with your job, you ARE disabled enough to go on disability. Not only able to, but you need to. I've said this so many times, and yet again, now another person with hd, my sister, who was struggling with her job, did not go on disability as suggested to her, and she had a very good job with benefits, but she was fired from her job a few weeks ago. Especially if you have a job with good benefits, you need to take a sick leave before they fire you, and during your leave get your disability benefits in order. Going on disability is not a step down, it is a step up, because then you can have the time to take care of yourself without the stress of your job, and believe me, when I had to leave my job and go on disability, the amount of stress that was suddenly gone from my life was unbelievable, and stress is the one thing that makes hd worse more than any other trigger.
I quit driving on my own. One day I was driving down the highway, and there was a car stopped in front on me, I plowed into the vehicle at 80k with no brakes, why, because I suddenly couldn't REMEMBER how to stop a car! Oh and guess what, this was My Very First memory problem. I had had NO memory problems before this, did not know hd was in the family yet, and did have any more memory problems until two years later. I stopped driving immediately after the accident, and believe me, it was very hard to give up my freedom. BUT, I would rather not have my freedom than possibly kill another person.
Five years later, I was trying to convince my dad to stop driving, because he now had hd, and was having trouble driving. I even said to him, if I child ran out from behind a parked car, and because you are having trouble with multitasking, and you want to drive from point A to point B, and you say you have trouble figuring out what to do if something suddenly comes between your point A and B, you could kill a child. Even your granddaughter. He couldn't process that. His response was, well that hasn't happened yet, so I don't know how I would respond.
Sorry, but you need to think about all this, I'm someone WITH hd telling you this. You said your driving is still ok. Ok isn't good enough. Not when it comes to driving and hd. Driving is not a right, and driving is a dangerous weapon, and it is a priviledge, not a right.
Please don't take this hard, but just think about this. I'm not just saying this to you, but to anyone with hd. Like I said, my very very first memory lapse was on a highway, and I forgot how to stop a car, thankfully nobody was injured, but both cars were destroyed.

And sorry to go off topic in my above post
About this topic, being artistic. I don't think I'm artistic, but I like to make quilts. Three years before I got hd, I took a sudden interest in quilts. I saw a quilting show on tv one day, and that was it, I was hooked, and so I went on the internet and taught myself to quilt. It was fascinating, how different patterns could look so different, just by changing the colours of the fabrics, etc. I was fascinated with drawing up my own quilt patterns on graph paper, I would doodle dif patterns for hours, and made a few quilts, each quilt getting better than the next. Then when my granddaughter was a toddler, I wanted to make her a big girl quilt for her new big girl bed. But hd started taking over. I had all the fabrics, and had all my squares of fabric all cut up ready to sew, but I suddenly started having trouble. I couldn't hold the sewing pins without the pins dropping out of my hand, and I would put my pieces of fabric together to sew, but I would get confused, and couldn't figure out which pieces to sew together, it became very confusing, and I couldn't figure it out, and so it went into a box and into the closet, and when I would try to think about pulling the box out of the closet to work on her quilt, I couldn't put the thought in my head into action. This went on for three years. Then one day I heard about an alzheimers med called memantine. I went to my hd doctor quite mad, why hadn't I been told about this med number one, and number two, I demand to be put on this right now. My doc said it was still experimental, but he'd be happy to start me on it. Within three weeks of being on this med, I was suddenly doing things again. I had been having trouble initiating making phone calls, suddenly I was phoning people again just to chat. Suddenly I was able to not only pull that box out of the closet, in three weeks I was able to finish that quilt and give it to my granddaughter for Christmas. I was suddenly able to climb stairs without holding the railing, it felt like I was coming out of a horrible fog. I don't know if this will help anyone or not. Memantine is not for everyone, some people their hd does worse on it. My doc was very insistent it had to be low dose, because he said too much actually makes hd worse. I saw this in my dad when he decided to try memantine after seeing me do so well on it. He was on twice the dose as me, and his hd went downhill very fast. What memantine does is it gets rid of the excess glutamate in the brain. Too much glutamate in the brain makes hd worse, but not enough glutamate and your brain cannot function without it. I was taking 5mg in the morning, and the same at night, for three years, and it worked fantastic for me. Suddenly I was becoming very very agitated and ocd. My doc lowered my memantine to once a day, and I was myself again. But a year later I had to be taken completely off of it, because any dose was giving me a bad reaction. At the same time, my hd doc said my hd had gone from early stage symptoms, to almost non existent. He said I am the only person in all of BC who has not only not gotten worse, but their hd got better. Soooo, his conclusion was this. When I started the memantine, I had a lifetime of built up excess glutamate in my brain, and the reason my dose slowly had to be lowered was because the med had gotten rid of the excess glutamate. He also said it was my lifestyle. Yes, I like to eat junk food, I'm not a health nut, but I very rarely buy or eat packaged foods or restaurant foods, because of the glutamates and chemicals in the foods, except yes, I love my peanut butter sandwiches lol. I also take daily aspirin to lower inflammation and improve circulation. I don't take any vitamins, and yes I need to exercise more. But, having said all that, I have not been myself the last couple of years because of three bad concussions, and each of them was because I banged into something that I didn't see. The concussions put me into a real fog, and I'm just now finally feeling better the last few weeks, and that's probably why I have been gone for so long and just starting to participate again a little bit. Having post concussion for so long is very disabling and disheartening, as I was also worried how much it would effect my hd, and hopefully not permanently. So seeing myself coming out of my fog from my concussions is very hopeful. My desire to participate in things is starting to come back too, but anyone knows, when you've been sick, sometimes just existing is your existence, so I'm doing better
For many of us, it's hard when you have hd and have had interests that you can either no longer do, or don't have the same desire to do. Some things get better, and some things we just have to accept. Coming to a place of acceptance is a good place to be Hope this is helpful



Edited 2 time(s). Last edit at 09/29/2014 10:05PM by Barb.

Wow! Many thanks to each of you for posting! I just wonder if maybe the way HD affects the brain actually helps one to be artistic? I was mad at God when we figured out my husband had HD, but I wonder if he would be the man I know and love without it. How much of who we are is made up by DNA and the way it works in our brain? Just some thoughts I had. Of course, I have no answers. Will be something to talk with God about when I reach the other side. While I do not have HD, I totally understand what you are saying Mikee and shlinky1 and Margie. My husband has all the same issues. When we found out about HD and I started researching it, it made so much sense. My husband is the farthest thing from lazy, but sometimes won't do or finish things he should. He has a hard time learning new things too. He also says that regarding his art, he feels like he can't see things the way he used to and isn't as good as he used to be. I'm sure the fatigue and all the other symptoms make it more difficult too. Still...it seems like maybe art would be a good way to bring awareness to HD. I'm an event planner by nature (and in previous jobs). I could totally see planning an event to raise money and awareness where people with HD would provide drawings, painting, pictures, sculptures and entertainment (singing, etc). Hhhhmmm..something for me to think about. Just surviving day to day is enough for now.

Amber, I think you have a good understanding of what's going on, at least as much as you can. I don't know what your husband's physical or mental condition is but we can't completely give up. The disconnect I talk about is really involved in almost everything we do. Our fear of doing something wrong or just "messing up" is stressful in itself.

There was a time my brain worked '' ALL THE TIME". Couldn't wait to get home from work or the weekend. If my thoughts weren't on my family or work they were creative thoughts. I didn't know how exhilarating that really was till it was gone. Everything was planned. Tonight, as with most nights now, I go to bed with no plans. Only hope to awake in the morning and do just a little activity. I can't stand the thought of having to stop everything. Don't get me wrong, I'm not complaining. Glad to be as functional as I am and love all of those around me. Even you guys.

Mike

Hey Mike, did you see my post up above about memantine? I know it really helped me, and might be helpful for you

Yes I did and thanks for the info. I will ask my Doctor about it next time. I'm glad you were able to get some relief by using it and make some more quilts. Homemade quilts are the best.

Also glad to hear the concussion symptoms are improving.

I was wondering if as a side effect that it can sometime make HD worse then does going off of it then return you to the state you were in prior to the med or do you stay as is.

Thanks again,

Mike

Hey Mike, I don't know if I can answer all of this, but i'll try. When the memantine started to make me agitated, I had been on it for 4 or 5 years, and at first we didn't know it was the memantine doing it. Was finding me antidepressant and tranquilizer were suddenly having to be upped, even though I had been settled on the same dose with them for about 6 years, so I went into my hd doc and asked what could be going on. He suggested we lower the memantine, and the more we lowered, the more my other meds were able to go back to their original dose. He hadn't seen this happen before, but he knew memantine gets rid of excess glutamate, and the only thing we came up with is maybe it was getting rid of a lifetime of build up, and now there was no longer excess glutamate to get rid of, so now it was getting rid of too much glutamate. So what we decided is if I have a couple days in the month where I'm having confusion and trouble executing things I want to do, to take the memantine for two or three days, until it feels agitating again, and then go off it until it feels like I need another small dose. I did that about once every few weeks for about a year, and now I no longer take any. I know some on the forum here that tried memantine for their loved one, and had a very immediate bad reaction, tripping, falling, agitation, etc, so they immediately stopped taking it. It obviously was just not meant for that person, but never heard of lasting effects from a short experiment. I know others here on the forum have had good results with it. My dad had bad results with it, and the results were lasting, and the reason for that is this. I knew after my dad had been on it for only a few weeks, that he was not doing good. He was suddenly having a lot of paranoi, that he hadn't been having before this. And the reason was this. He was put on it, and he never went back in for a follow up! My doc had me come in every two weeks to see how I was feeling, and help decide the best dose. He started me on 5 mg the first week, then the second week 5 mg twice a day, and I was feeling good. He said he never puts anyone on more than 10 per day, but if I wanted I could try 15 and see how I feel. I tried 15 for just a few days, and immediately felt agitated and ocd ish. So I went back in to him, and he said just as he thought, 5mg twice a day is best dose. He believed fervently that too much memantine was bad for hd, and low dose was good for hd. He believed this even before research proved this to be true. When I started taking it, what I noticed the most, was I was once again able to take thoughts in my head, and execute them into action. Before the memantine, thoughts would circle and circle in my head, things I wanted to do, but couldn't execute getting things done, things like making a simple phone call, etc. The other thing that took my dad downhill very very fast, was his hd doc put him on wellbutrin. It is the WORST med for hd. It actually effects dopamine in a way that not only makes symptoms worse, but makes the disease worse too, makes hd progress faster.
So no, after going off the memantine I'm not back to square one at all, my improvement is still the same. After I was on the memantine for 6 months, I passed every neuro test thrown at me, tests that I used to struggle with before that. I'm still not completely without symptoms, little trouble with multi tasking and following a long conversation. But my improvement is like nothing my hd doc has ever seen before. He had 6 patients come to him and ask to be put on memantine, including me. A year later he told me this. Two people their hd slowed down significantly, but their hd symptoms were still progressing, but only slightly. Two people their symptoms stopped getting worse, and their symptoms stayed the same instead of getting worse. And two other people had actually had their symptoms improve. He said out of those two people, one person improved so much you almost wouldn't know they had hd symptoms any more. That person was me. And he sees every hd patient in all of BC, and he said he has never seen anything like this. And we wonder if my low cag count helps this too. My concussions were caused by my hd. Two years ago I bumped into something really hard that I just didn't see. That's because I have slow eye movements that gives me a bit of tunnel vision. My post concussion symptoms were really bad, I couldn't go for a ride in the car without getting severe headaches and dizziness. So for the last two years I have been very laid up, because any time I had to go in the car, it would set my concussion symptoms back to square one. It caused a lot of balance issues, confusion, lethargy, etc, and then I had two more concussions. I had to wonder the whole time, is this going to make my hd worse, that terrified me, would I recover from this. Well I am almost totally recovered now. My boyfriend still has to be careful to not slam the brakes on, but I'm able to go out in the car more and more without getting my symptoms, and the concussion also made me feel I was in a fog, and I've been feeling myself coming out of the fog, and my personality picking back up a bit too. I know for you too you've had trouble figuring what is concussion symptoms, and what is hd, and yes, my worst fear was my concussion and hd becoming one thing, but I guess that is hopeful, that my concussion is getting better, and now I can tell my hd is not worse from it



Edited 1 time(s). Last edit at 10/02/2014 02:20AM by Barb.

Thanks for the clarification Barb.

Mike