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 Need to talk 
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Joined: Fri Jan 23, 2009 11:46 pm
Posts: 10
Location: East Yorkshire, UK
Post Need to talk
Hello my name is Jane, and we live in East Yorkshire England. My husband John was diagnosed with LBD in October 2008. he became ill v quickly starting with parkinsons symptoms first. within one week of symptoms he started to say things to me in a way he would not have said them, others did not see this but as his wife I knew this was not how John would say things to me.(a partner knows). The doctors would dismiss this and say it was because he was depressed, I was never convinced this was the reason. He then started with hallucinations, talking to his father ( whom died before john was born). He spent 10 weeks in the hospital and was told he had parkinsonism (which one was not clear). In October when we went for a check up and I told the doctor the symptoms John has been showing he then diagnosed LBD. I was not shocked by this as I knew he had some form of dementia. What shocked me the most is John is only 44 yrs old and I like many thought dementia affected the elderly. He has been given Aricept 10mg daily (Oct 2008) along with various other parkinson drugs, but up to now he has not shown much improvement. with the Aricept and I wanted to ask how long after talking this should we start to see improvement, and can this dosage be increased? We have three children and the youngest Alex is only 11yrs old and is finding things very difficult to understand. I have tried to explain to him that Daddy cannot help the things he says and does, and he asked me "will Daddy forget who I am" i did not know what to say to him. I also have not told John about the dementia side of the disease he know he has Lewy body. Am I wrong for not telling him? I just dont know. Also i would like to ask if any one else has a family member suffer with this (so bad, so early) as i would like to know approx how long before full dementia set in.If anybody can give me any advice I would be most gratefull.


Sat Jan 24, 2009 6:13 am
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Joined: Fri Feb 29, 2008 7:02 am
Posts: 537
Location: MI
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Welcome
There are some other young victims of the disease on this forum. You might search for posts from Randy (rgraves) and Lars.
You may want to hunt for a doctor with experience with LBD. The aricept for my Mother helped quickly. There are a number of articles that on the web site that you can read and maybe print out and share with the doctors.
My Motherdoes know what she has and what the future brings. -for her it was better to know than to think she was going crazy.
Sharon

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syt


Sat Jan 24, 2009 9:13 am
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Joined: Sat Jan 27, 2007 8:38 pm
Posts: 712
Location: CA
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Jane --
I am so sorry for what your family is going through, especially your children. Look for the Boeve paper from "Continuum" on this website -- print it out and share it with your doctors as it has detailed medication information. Has the doctor suggested adding something like the Exelon patch or Namenda along with the Aricept?

As for whether to tell, you will know better than anyone what would be best for your husband. In our case, I knew it was the best thing for Jerome to be frank about it, explain it, and provide loving reassurance. I've never regretted the decision -- it was right for us. Others made the opposite decision and it was the right one for their LO.

The more critical question is whether in the UK you need to get important paperwork completed, such as the British equivalent of a advanced healthcare directive, power of attorney, and other such so that you will have those powers when John ceases having the capacity to make decisions or legally binding agreements on his own.

Here in the U.S., the best time to have those completed is while the person is still very competent as they must understand what they are signing. That may come to play in your decision about telling John about his full diagnosis.

We are all with you, and welcome you as a fellow journeyman on the Lewy road.

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Renata (and Jerome-in-Heaven)


Sat Jan 24, 2009 12:40 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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Hi Jane,

I'm sorry to hear about your husband. At tthe age of 44 he is one of the youngest I've heard of with LBD. Often times in other disorders (PD and AD), when the disorder strikes someone in their 40s or early 50s it is because they've inherited a genetic mutation causing the disorder. Did (Do) any of John's relatives - mother, father (who is already dead, you said), or aunts/uncles - have AD or PD, and was the diagnosis confirmed upon autopsy? (I encourage you to discuss with John the subject of brain donation. One of the best brain banks in the world for DLB research is Queens Square Brain Bank in London. And some of the top DLB researchers in the world are British.)

Perhaps you could indicate what major medical facilities are near you (especially those affiliated with a university) and someone may know of an LBD-savvy MD to recommend. You might consider having your husband see a psychiatrist as well as a neurologist.

As Renata said, get the "Continuum" paper and discuss both Exelon and Namenda with the MD. My *impression* is that these meds take about 6 weeks to kick in though sometimes the effect can be immediate. The "how long does it take to work" question is a good one for the prescribing MD. You might also check a website such as drugs.com or rxlist.com as they may address that question. And materials from your pharmacist may address that question.

LBD includes progressive dementia, so it will get worse with time. I'm not aware of any natural history data on the progression of dementia over time in confirmed LBD patients.

You might consider joining either a local or an online (or both) support group for those dealing with EOAD (early onset Alzheimer's Disease) as many of these families have small children and are facing the same struggles you are.

Good luck,
Robin


Sat Jan 24, 2009 7:59 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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You might also contact the Lewy Body Society in the UK. See lewybody.org.


Sat Jan 24, 2009 8:23 pm
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
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Hello Jane,

Sorry to meet you under this sad circumstance but glad you found this site which will give you invaluable information and support.
My heart goes out to you, your LO and your children. I cannot imagine how difficult it must be for you to try to explain this to them at such a young impressionable age. Is it possible that perhaps the neurologist or primary care physican could spend a little time with the children and aid you in explaining the disease to them so they are not frightened by some of the behavior of your LO? You are all in my thoughts and prayers.
A big hug to all of you.

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Dianne C.


Sun Jan 25, 2009 4:34 am
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Joined: Wed Oct 29, 2008 1:42 am
Posts: 5
Location: WV
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Jane,

First, I'm sorry about your husband's LBD. My father has LBD for awhile now. He was first diagnosed with Parkinson's when he was 41; he is 54 now. He had small signs of LBD at the time as well. However, the doctors said it was in the "back seat" and PD was the main disease at this time. However, in the last 4 years the diseases has switched and now Lewy has taken over. We ended up having to stop the Parkinson's meds; because, they were causing to bad hallucinations and it was either mobility or memory. He always wanted his mind the longest. Therefore, my mother and I picked that route. He still can walk to the bathroom and bed from his lift chair and even down the halls on good days. However, he falls very frequently now. No one can give you a real time line when your John will get dementia fully. Everyone is different and with LBD it is even harder sometimes. I heard one time in a conference one time. Alzheimer’s is like a downward curve. It never really gets better, it is a continuous progression. Lewy is also a continuous progression. However, its curve goes up and down. One day someone will be able to brush there teeth fine. The next day, the person will not even know how to do this simple task they knew how to do the previous day... That is what I have found the main different over the years with grandparents having Alzheimer’s and my father with LBD; it changes more as Alzheimer’s really doesn’t as much. As for the medicines and when you would see results. Generally, the doctors usually tell us within a week or two depending on what meds could be short could be longer. The main thing is if it doesn’t work try a different mix of meds. This is really all you can do for this disease. It may take some time, but hopefully you are able to find the right mix of meds for the moment in time. It will change over the years also... However, once you get on the right one usually you are set for a little while... My father was having horrible violent hallucinations once, and was very aggressive and agitated. He is a very calm and friendly person usually. We had to take him to the hospital for almost a month so his psyc doc could play with his meds and hopefully change them to help him. I really thought there was going to be nothing they could do he was going downhill fast for the year adding up to this. However, after his stay in the hospital, it was like i had my dad back for the first time in probable three years. It was like he went three stages backwards in the disease was something that I couldn't believe. So never give up on changing and trying different meds you will know when you have the best ones at the time and the worst ones as well. I'm 23 now and I feel for your children. My family has always been close. Therefore, I have always been involved in everything with my dad. I have done a lot to try to learn everything about the diseases. My mom and dad did everything they could to let me live a "normal" life. I chose to help whenever I could though, but I did have a good teen childhood as well. You know your children best... You will do the right thing and for telling John about stuff. We always tell dad as sometimes he will remember and other times he would just forget. However, he knows what he has and he knows what will happen and the symptoms etc. The same with your children though, you know your husband and what would be best for him. I will keep you in my prayers...

Nathan


Sun Jan 25, 2009 5:41 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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Jane,
Have you seen the new LBDA brochure for the newly-diagnosed? It's quite good. See this post about it:
http://www.lewybodydementia.org/forum/v ... php?t=1288
Robin


Sun Jan 25, 2009 5:24 pm
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Joined: Fri Jan 23, 2009 11:46 pm
Posts: 10
Location: East Yorkshire, UK
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Thank you all for your support, after reading the replies I decided to tell John more about LBD, he was upset but also relieved at knowing why he was doing "stupid things" as he called them. Johns Grandmother had PD/AD athough she did not aquire this untill she was in her early 70's. This was not confirmed at autopsy. This does cause me concern with our son Alex (my daughters are from a previous marrrage) as I worry that it may have a hereditary element to it. Thank you for the support given, it has been v much appreciated. To all LBD sufferers , carers & familys you are in my thoughts and prayers. xx


Tue Jan 27, 2009 5:53 pm
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