My young-ish aunt has been diagnosed with Parkinson's disease. Now what?
January 13, 2010 7:55 PM   Subscribe

My 50-something aunt has been tentatively diagnosed with a form of Parkinson's disease. What now?

My aunt has just been diagnosed with a form of Parkinson's disease. She is vegetarian, exercises, looks after herself and aside from some food allergies, is very healthy. We are just stunned. She has some new-agey tendencies and was writing off the symptoms as stress reactions; she had gone to an ashram for six weeks, sought help from a naturopath etc. But now they have out her on medication, will wait and see how she does and will diagnose further in a couple weeks.

So, what is the prognosis for someone her age? What kind of support might I offer for her and my 20-something cousins, who are going to be very upset about this? If this were you and you had just gotten this diagnosis, would you want people to call you when they found out or would that be weird? I don't want to depress her or upset her and I am not sure how much, if at all, she wants to talk about this with people at my level of the family. But I would like to let her know, if it's appropriate to do so, that I heard the news, that I am sorry about it, that I love her and that she can rely on me in whatever way she might want to. Is this the right thing?

What should I do?
What should she do?

Any suggestions are appreciated. I guess most of us think we have longer before we have to deal with these things. She seems very young for this to happen to.

(anonymous in case any family members read...)
posted by anonymous to Human Relations (5 answers total) 2 users marked this as a favorite
My grandparents were both diagnosed with Parkinson's in their late 60s. In my grandmother's case, she was diagnosed first, and went probably a good 10 years before it became truly problematic. My grandfather was diagnosed about five years later and he went downhill much faster. Both died within this past year after about 15 years post-diagnosis, but when they finally passed away my grandmother was still reasonably mobile (though she could no longer write with her right hand) whereas my grandfather was in a wheelchair and had very little strength. The short answer is, it totally depends, and it's hard to judge.

Both of them were extremely active and healthy their entire lives, never drank, never smoked, stayed physically fit, and this was just tragic to watch happen to them. When you're that "good", things like this aren't supposed to happen. So I understand how stunned your family must be.

There are a lot of treatments now that are very good. The drugs my grandparents were on controlled their symptoms pretty well. The hardest part for them was getting up in the morning, as the meds would wear off overnight, but by 10 AM or so they'd be okay for the rest of the day as long as they took the meds on time. I don't know if your aunt is a candidate for deep brain stimulation, but I've seen some amazing results there. My grandparents weren't candidates due to their age by the time that treatment became common, but your aunt may be able to look into that.

As for your part in it -- as the symptoms progressed, my grandparents just needed more and more help. When they eventually moved into a retirement facility -- a really beautiful apartment building full of seniors, basically -- it was a huge help to them (and to us as their family) since we knew they had "backup" in case of any problems and they weren't having to worry about mowing lawns or replacing light bulbs or anything like that. Your aunt may be years away from considering this, but waiting lists can be long, and it can't hurt to think about it in the near-ish future.

Mostly my grandparents just got frustrated/embarrassed that they were unable to do the things they used to as they lost various fine motor controls. Our family tried to be very understanding and nonchalant about helping out where we could.

The biggest thing to remember is that your aunt could go for years before she's severely impaired, and even if she does end up with a walker or wheelchair earlier than she ever intended to, there's a lot of life to enjoy. Parkinson's is a sad disease to watch and very frustrating for people, but when I compare it to, say, the Alzheimer's my great grandmother went through, I'm so much more grateful for the years I had to continue to get to know my grandparents. I'm sure it'll be the same way with your aunt.

I'm very sorry to hear of her diagnosis, and I wish her all the best in dealing with it and living with it. Talk with her about it, find out how she's feeling, and don't ignore it unless she asks you too. Best of luck.
posted by olinerd at 8:44 PM on January 13, 2010

My dad was diagnosed with Parkinson's in 1995 which was when he was slightly younger than your aunt. He'll be 62 at the end of this month. Agree with olinerd that it may be a while before she becomes severely impaired. My dad has been living with the disease for 15 years and still has not had to use a walker or wheelchair, although he has had to go on partial disability due to being limited in the physical activities he can do. My parents also got a handicapped placard for the times when his medication was at a low ebb and walking was difficult.

It depends on her exact personality, but letting your aunt know that you heard about her diagnosis probably wouldn't hurt. Moral support is probably the thing she will need the most early on. The disease can be very frustrating and depressing. I know that my dad was often embarrassed to have his grown daughter help him do things like buckle a seat belt. He also felt that strangers would stare at him when he was shaking, which made this pretty gregarious guy not want to leave the house. Support groups helped somewhat, and his doctors have put him on antidepressants which kept him functional.

She will probably be put on medication first, and other options will be explored as the disease progresses. My dad had deep brain stimulation done this past October. It is definitely not a cure, but it has helped somewhat in his case. Side effects so far are that he slurs his words more. There are still tremors, but his movement is easier and as my brother said, "he's standing up straighter than he has in years".

The National Parkinson's Foundation has a good website where you can search for support groups, participate in discussion forums, get the latest news, etc. It can be a good resource for those living with the disease.

Good luck, and feel free to memail if you have any additional questions.
posted by weathergal at 11:15 PM on January 13, 2010

Like weathergal above, my dad was diagnosed with Parkinson's - he was in his late 50's and it's been about 3 years for us. It sounds like your aunt is not someone who likes to take medication, but in the case of Parkinson's, it's a big help. It's also a constant reminder for loved ones about the illness, so it can difficult. My dad is on a cocktail that means he's taking several different pills several times a day. My mom has been a lifesaver for him because she's the one who makes sure he's taking his medication correctly. If your aunt goes on the typical medication, she will probably need help keeping track of meds in the beginning.

The other, more difficult, thing about Parkinson's that weathergal referred to is the decreased mobility. If your aunt is normally an active person, it's going to be a huge mental struggle for her to deal with the increasing "stiffness" of her body. Although mentally my dad is the same person, in just 3 years he is moving slower and is having trouble getting out of chairs and has become a very quiet person. One of the drugs he's on is a depression medication, though he says the depression is a side effect of one of the other medications (this is the catch-22 of the cocktail: several drugs must be taken to combat the side effects of the drugs taken to help the Parkinson's symptoms).

I think, for you, the important thing to do with your aunt is remember patience. Because she's most likely very scared right now, she needs your love and support right now. And because she's going to be slowing down over the next several years, she's going to need help from family members that is given without any protest.

Yoga is supposed to be good for Parkinson's patients because it helps with the balance. My mom got my dad a Wii for Christmas to keep him up and moving - so helping your aunt exercise might be something you can do.
posted by bibbit at 4:51 AM on January 14, 2010

My father has Parkinson's. There's some useful information on the NHS site.

It's a slow, progressive, disease. There are drugs that help a lot with the symptoms. However, as the disease advances, she'll need to keep increasing the doses of the drugs, which have side effects.

For the first few years my father could control the shaking once he noticed it by making an effort. However recently he can't stop it.

However, as the others have said, it's a very slow process. She'll probably be able to lead a normal life for years and years to come. Also, treatments are improving all the time.

Over the past few years my parents have been taking the chance to go on all the holidays they've always wanted: my father's always wanted to go a train journey over the Rockies, and they did it last year.

So, you might want to encourage your aunt to take the chance to do things she'll enjoy over the next few years while she still has mobility. Try not to panic her if you're suggesting things like that though.

Very much agree with weathergal that she should get in touch with national and local organizations for Parkinson's: they're able to supply a lot of useful advice.

Try to keep her as positive as possible, and not sink into depression. She still has many years left where she'll be physically OK or only slightly impaired. She needs to enjoy those as much as possible.
posted by TheophileEscargot at 5:23 AM on January 14, 2010

My dad has Parkinson's; he was dx'ed 10+ years ago, and he's 81 now. He's been very fortunate, in that he's responded well to the drugs, so his symptoms haven't progressed that quickly. He continued to drive until last year, and it wasn't the Parkinson's that stopped him but overall frailty from congestive heart failure.

Your aunt really needs to take the medication she's prescribed, because being scrupulous about meds can help slow the progression of disease.
posted by Sidhedevil at 4:34 PM on January 14, 2010

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