Hello,this is my first message. I just started reading the message board and it is very comforting to read words from people who are going through the same things. My mom was just diagnosed 3 months ago and my twin brother and I are going through the testing process. We should get our blood drawn this month.

Paula

Hi Pab, glad to meat ya. Sorry about your mother, but that's what we are here for too. Nobody wants to be in a lifeboat unless they are in the ocean.. How did you decide so quickly to test?

Sorry took so long to respond I had to go pick my son up at the airport. Well, it wasn't easy and to be honest with you it doesn't seem that quick of a decision. I do not like not knowing. It is on my mind all of the time. Do I have it or not. I want to know how I can better plan for the future. For me not knowing is awful.I am 47 years old and I have a 26 year old son that I haven't told anything. I will tell him after I find out the results of my test. If it's negative then I only have to explain about his grandmother. If it is positive I will have to explain his risk in addition to my results. My brother and I have talked about getting tested often. He has been sted fast with his decision. I have flipped a couple of times, but now belive this is the best decision for me. Sometimes I feel my entire situation is a bad dream.....

Hi Paula -
I know that "bad dream" feeling! I am so sorry about your mom and wish you and your brother the best of luck. This forum is an amazing place for information and support. There are many people here who are also going through the testing process. I hope you are both negative but I just want to share with you that my husband tested positive last October and even the positive result ultimately gave us relief from the all-consuming unknown. The worrying and wondering was taking a huge toll on us - more than either of us realized. We are doing better now than we had been doing for quite some time because now we can put our energies into living and learning what we can do to give him the best chance to stay as healthy as possible . The most difficult is having children at risk.

Lots of luck to you!

Wow Hope2, well said. That is how I feel. For a lot of people I have talked with about this tell me I shouldn't be tested. They say it will change my life. What my response is, "It already has!" I want to get past the not knowing and move forward. Do you have children?

Hi pab and welcome.....I too am fairly new here and like you am going through the testing process, although my situation is a bit different, we share are a mother with HD, being at risk, and we both have children of our own, who could one day have to deal with this. I am 28 with two children "at risk"

Arriving at the decision to test is a difficult one. It is a huge step just to make that call and set up the appointment. I too needed to know and if I could I would have done it two months ago, but the soonest I could begin the whole protocol was in august, so I had to wait. I was completely upset at first as I was ready and wanted it done right then, but I have to admit the wait has proved beneficial. It allowed time to reflect upon my decision and for me confirmed my choice, I know now this is the right thing for me.

Anyway, I have my first of 3 appointments tomorrow, well the first 2 are on the same day (genetic counselor, then the psychologist) exactly one week later I will see the neuro and have my blood drawn. It is odd, but I am almost excited, more so because the uncertainty is finally coming to an end, and I too can start planning appropriately for the future.

I wish you the best of luck! This is a great place to find support! It definitely helped me to read the experiences of others.....but the greatest for me was knowing that I am not alone in this and by coming here, you now know that as well.

-take care-
Krista

Welcome Paula,
I am now 65 years old and tested 9 years ago when I realized that a freind of mine was symtomatic. I have 37 CAG and am non-symptomatic. Good luck.

Paula

I am 50 yrs old and not at risk.. but I have always thought I would have to test for my kids who are 20 and 15. Not so much for me alone. I probably wouldn't test the older I got just for me, as my risk for age related illnesses increased too. My wife's aunt was 65 and still wondering/worrying about HD, and I told her it's time to start worrying about Alzheimer's, heart disease and the other stuff... If I knew my status young.. like my kids do .. I have taught them that testing is important once it will affect others lives.. like their future family. I think having your son in mind at his age is a good thing. Since he is unaware of HD yet your testing very soon might relieve you of that discussion and him of ever worrying... otherwise, very good you will let him know so he can look at his own decision making. At 26 he will want the opportunity to plan for himself. Almost everyone in retrospect feel they wish they knew then what they know now.

Welcome, Paula. As I often say to new people, I'm sorry for your reasons to be here, but so glad you found this great place.

I've been here less than a year, myself. Started to realize last October that my Mom has HD, and could not get it out of my mind. Even though I knew my grandmother had passed from it, I never worried about my own risk til Mom had it for some reason. It took me til December to save the money, then February til the first available appt for testing protocol at a place near my that does it anonymously. Similar as you, I HATED waiting. But it DID give me time to see how little I wavered from my decision over that time. And it gave me time to get insurance in place too. If you do not have plenty of life, disability, and long-term-care insurance, get it before you test; you can always cancel it later.

I tested positive, but think I've been handling it about as well as anyone could, and it is really not much/any more stress than the NOT KNOWING (well at least after the first couple of weeks, in my case; others are really down for longer though).

Also for me, I thought I needed to test & come to terms with my own results, whatever they were, before being able to fully focus on my Mom.

I hope you can get through the testing process as painlessly as possible, and that both of you have good results. As a distant-second-choice, I hope you can both handle any results as well as possible. I do have a lot of faith that the future of HD is looking more hopeful every day.

Hi Paula - Yes, I have 2 kids at risk - they are 5 & 8... I agree with Eric that one "should" test when other people are involved... before that time it is a personal decision but for many (for us) it is the right decision. Testing doesn't change the reality - knowledge is power...

getting the insurance in line is very smart to do too. we had all the paperwork for Long-Term Care insurance but never actually got it which I regret now.

Best of luck! and, if you are negative, please post that news too - I know I am not alone here wanting to get some good news!!

Thank you everyone for all of your messages, thoughts, and prayers. As I expressed in my earlier messages, it is nice to have people to talk with that can understand what you are going through. I have set up life insurance prior. It was something that I was putting off, but when mom was diagnosed I speeded the process up. My mom is 67 and she was having symptoms 4 years ago. The doctor's thought it was restless leg syndrome, but increasingly got worse. She teste 40 cag. We didn't know that HD was in our family until then. We now know that we had an aunt die of it and quite a few "odd" deaths in our family that I believe were somehow related. My mom doesn't want my brother and I to get tested. I can understand her point of view. I know she has guilt with the fact she may have passed hd on to my brother and myself. She said she wished she didn't know.She was fine just living her life like it was. My reply to her is it is not the same. She found out because the doctor was ruling things out and trying to diagnose her so he could stop the movements. Now, we know we are at risk and we want to know for the sake of our families. It is not just about us anymore. I too want to get over this hurdle and better prepare myself for caring for my mom.



Edited 1 time(s). Last edit at 08/03/2010 07:20PM by pab.

Hey, i'm really glad that you're testing. Even though it's a difficult decision, I always say knowledge is power.

Hi Paula,I'm 47 too and tested positive a few years ago with a CAG of 40. I have no physical symptoms yet, just a few of the "softer" symptoms which I am being treated for successfully with medication. My two children, 17 qnd 11, are at risk and that is the worse part. I have never once regretted testing. Good luck and we will be praying for a negative result. Lori

Hi Lori,

What are softer signs? Does you mon or your dad have HD?
I am glad you said you never regreted getting tested. I feel settled now that I have made the decision to go through with testing. Well, have to go to work, I will chat with you later
Have a nice day.

Paula

sorry for the late reply-i was out of town hiking in yosemite (which was awesome by the way....) Anyway to answer your questions, it is my mother who has HD, and is still alive at age 79 and in a nursing home. As far as the "softer" symptoms of HD, that is when you experience the cognitive and behavioral symptoms before the onset of the physical ones. For me, I was experiencing some depression and the inability to multi-task, but I am being treated with an antidepressant combined with abilify and like I said in my previous post, am doing exceptionally well, as in asymptomatic! One more thought on the subject, I think the term "soft symptom" is very misleading. The cognitive and behavioral symptoms can be just as debilitating as the physical ones. And they have a devastating effect on the families.

Hi, thank you for explaining. Yeah, I agree. My mom was hard to deal with for quite some time before she had any physical signs. I am glad you are doing well. How many years had passed before your mom was placed in a nursing home? My mom expressed to me last week she was worried she would be placed in there too early. I reassured her that would not happen. She has quite a bit of movement in both her arms and legs but she is as sharp as a tack! My step father is having a very difficult time dealing with the entire situation. My mom finally made the decision to get her will in order. She had a previous one, but it was made over 28 years ago and definitely needed some revisions. I know I will have to help my step father quite a lot to relive some of his tension and decisions. I have already became a mediator of sorts between their verbal conflicts. I mainly listen and validate what she is saying. My step father takes what she says so personally. Again thanks for listening and talking. It helps alot. Paula

Yeah, your stepdad does take it personally. It's very hard knowing you are committing to limbo for someone else, and they can't appreciate that much. It's not so much what she says.. it's that it's said at all and so often, without appreciation to make it feel worth it. One gets caught up in the small stuff.. it's the only way to vent. It's a very personal lifestyle to accept... and very grueling at times. It's hard to have rational perspective in an irrational environment.

any suggestions? I no with me being the "go between" its hard to hear as well. There aren't any group meetings for care givers near our home. I thought trying to get him in touch with folks on this site might help. My only reservations are, I don't want mom to beable to read what he might be saying.He needs to be honest with his thoughts and she just gets defensive.

As a new-comer and caregiver I have found tons of support here. Has made a world of difference in my life - most of my conversations happen in Private Messages where you can choose who you talk with and at what level you share. You don't have to use your real name to post - just a name so that you are accountable for what you are saying. I would encourage it ? this disease impacts everyone and takes away the ability to connect like you use to. Jossie

Thank you JavaJosie,

I forgot about the priate messages. Your absolutely right. This is a "family" disease that is challenging to deal with. Sometimes we are so focused on the person with HD we forget on how the people around them are affected.

Thanks Paula