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FU HD (sad and long)
So, as you know, my BIL has a rapidly progressing case of Huntington's Disease and is on disability, unable to drive, and recently become so aggressive that my sis (Karen) and her son have been living with her FIL until they can get him some heavy-duty meds to calm him down. Not fun.
Last night, I get a call from Karen and of course, I could tell she was upset. Their doctor thinks my nephew has "early onset/ juvenile HD", which I did not even know existed. I googled it, and it is extremely rare, but almost always passed from father to son (rather than from the mother like it normally passes) and the earlier the symptoms arise, the faster it will likely progress, and the symptoms and progression happen with 3 times the speed and severity. My nephew absolutely has the symptoms described (trouble speaking and swallowing, rigidity of movement, etc... but thankfully, no seizures... yet), but my sister just doesn't want to test him. She is so afraid of hearing the results, and knows they can't treat him if he does have it, so she just doesn't want to deal with it yet. She is totally heartbroken. not only does she have to deal with a slowly deteriorating husband, now she is faced with her only son possibly having just 10 years left. I could only cry for them and there is nothing I can do, but if this gets really bad for her, I may have to go back east. I would not be able to be this far away from her while she is going through this. At least in NY, we were only a 3 hour drive away. DH doesn't quite know I feel this way, but I doubt he would argue with the move. *sigh* I am not a religious person, but they are, so please pray for them. They need it now more than ever.
Re: FU HD (sad and long)
Knitting Blog
Updated 3-12
Thanks b, I appreciate it. I take it your husband didn't get it from his dad? I am walking in the Walk for HD here in SF tomorrow, so it will have a whole new level of meaning. Our families raised over $1300! Doesn't seem like much, but people gave when they have very little to their name. It's going to be a special day.
Man, I have got to stop crying. OH! And I got a computer virus this morning and can't get into my facebook profile, where I have 62 photo albums. If I can't fix it, I will be crying some more.
pinterest
We keep hoping for that, but they just seem to get worse.
We are very lucky and DH and his 3 sisters did not get HD which is a miracle in itself! HD runs throughout DH's family...all his dad's siblings had it, he is the only one left with it still. His dad is actually one some natural treatments (shots with fetal shark cells) and they have reversed several of the symptoms and held his HD at bay for 12 years. Basically it took his from disabled status with the chorea to back to just showing small symptoms. The shots are AMAZING and work well with kids if your family is interested...they come from Mexico (a dr in TJ) but the bad thing is they are EXPENSIVE.
Again, let me know if your family wants any help. My FIL has tons of resources and always is jumping in to work with HD families. There are a lot of clinical trials as well going on for HD. There is one that studies the progression and it's back east and they pay pretty well from what I remember by FIl saying. Most of the studies aren't on drugs, just monitoring progressions and working with the caregivers as well.
It's amazing how much is being done for HD now days. It's on TV shows nows, Mafia wars had something for it, there are walks. I love that it is getting out there now! It's time to find a cure, it's such a nasty disease that people never really heard of until the past year or so unless they were affected by it.
He actually did the HD walk this morning! My sis and I raised over $1500!!!! it was nice to actually feel like I was helping in some way.
As for those meds, expensive is not something they can work with. they are on an extremely limited budget with just my sister's teacher's salary and BIL's disability. I would love to know what your FIL thinks about the aggression, because that is by far the worst symptom for them to deal with.
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