Bay Area Disability
Network
Archived Chronic Disease Advice
Relationship Advice
Prednisone
Neuropathy
HIV and morbid comments
Relationship Advice
Father's close shave
Help with Meniere's disease...
Son (age three) has cystic
fibrosis
Afraid of going blind because
of AIDS.
I just found out that my son (age three) has
cystic fibrosis, and I'm in shock. I read online that the average lifespan of
a person with CF is 32 years! Is this true?
-
These type of statistics only serve to freak people out more. Yes, its probably
statistically true, but that average number isn't important - what is important
is how your son's life will be. You should educate yourself more about treatments
and caring for him, making sure that he gets access to the best care and information
available. Plus, you say your son is 3 - in 40 years, the "average lifespan" of someone with CF will probably be 60 years, and by the time he's 60, it will
be a normal lifespan.
I am deaf and HIV positive. I am afraid of going blind because of AIDS. I'm
taking lots of drugs to keep me healthy, so far all my numbers are good. How
can I avoid going blind?
-
CMV retinitis is a result of having CMV (cytomegalovirus,
a sexually transmitted virus) and having a lowered immune system. The new
treatments for HIV keep your resistance higher, and so tend to keep most
people from developing CMV retinitis. The best thing you can do is see your
doctor regularly and keep taking all your meds. Most people with HIV get
into trouble when they "skip" doses of their drugs. Don't miss
a single dose! That's how you can stay healthy.
- If you start noticing changes in your vision, don't wait - go see your
doctor FAST! If you are developing vision problems, the sooner they are diagnosed,
the sooner treatment can start. Don't let fear of blindness keep you from
seeing your Doctor.
Help with Meniere's disease...
-
Hi, there are some great local resources on this (such as the Hearing Society
for the Bay Area in SF, (415) 693-5870). They can give you lots of help but
let me just say that, when my father-in-law started losing his hearing, he also
lost all his friends. They tended to get together for big dinner parties, and
once he couldn't understand what was being said, they stopped inviting him.
People can be VERY impatient when their friends can't hear them. So loneliness
is a big issue. Make sure you keep in close touch with him, and try to find
things he can get involved in that keep him connected. My father in law got
severely depressed when he first lost his hearing.
My father has arthritis, and he's coping with it fine. His biggest complaint,
however, is that he can't hold a razor to shave. He has
an electric razor, which he hates - he is one of those guys who still uses a
shaving brush and a regular Schick razor. But he can't hold on to the handle
- any suggestions?
-
If your father can grip at all, you could try building up the razor's handle
- probably the best thing would be hot water pipe insulation (you can get
it at any hardware store and you're going to have a lot left over, I think
the minimum length you can but is six feet. You may have to use a little
duct tape to make get a good fit between the insulation and the razor's
handle. The stuff is waterproof so it should work pretty well.
-
If your dad is having trouble shaving he's probably having trouble in other
areas that he's not talking about. You should get him a referral through
his doctor to an OT. Occupational therapists (OTs) help people improve their
ability to perform tasks in their daily living and working environments.
Fathers in particular seem to be notorious for keeping problems hidden as
long as they can.
Relationship Advice
I'm pretty much at the end of my rope here, and really need some help. My girlfriend has rheumatoid arthritis, and recently has been having more problems with it. It's really affected her moods. She gets really really angry a lot of the time, and when she's not screaming at me she's completely depressed. Seems like everything I try to do to help her results in yet another shouting match (which she wins - the RA has not affected her vocal chords). Any ideas on how to cope with this, short of moving?
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This is in response to the archive under Chronic Disease/Relationship Advice. A man wrote in about his girlfriend's RA and her growing anger and their subsequent fights. I am 26 and I've had RA since I was a toddler. My boyfriend of a year has gone through quite a difficult season with me in recent months as my health was lagging and overwhelmed, I found myself feeling more trapped and angry. It is one thing to advise the man that his girlfriend try natural foods to alleviate her problems, but that is, in a sense, beside the point as their is no cure which can take away the emotional hurt the body stores up response to disease. I encourage him to be understanding, to realize that that kind of nagging pain can make one turn on the person they love even as they become furious with their own body. I encourage him to protect himself emotionally without being too detached and perhaps consider how counseling might help his girlfriend deal with the inevitable ups and downs of her body and give her the freedom to express her feelings in a space that is not directed at him. I wish you both well. Amber DiPietra
Hi, I have a dear friend who developed RA [[Rheumatoid Arthritis] at 17 yrs. old. She totally changed her diet and has been in remission since, she's now 37 and a mom. She firmly believes that with a healthy diet of organic whole foods RA can be kept at bay. You might try encouraging your girlfriend to change her eating habits if she hasn't yet. She will feel better.
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My understanding is that recent research has found a relationship between food sensitivities and rheumatoid arthritis. Some people are finding that they can reduce or even eliminate the symptoms by modifying their diet. James Otis, DC is a chiropractor in Oakland that's had some success in working with people with RA (and lots of other things). He has a lot of knowledge about nutrition and can help people figure out lifestyle changes that can improve their health. Check his website www.jimotisdc.com for more information and how to reach him. Diane Dew
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Has your girlfriend tried homeopathy for her arthritis? I highly recommend our Homeopath, John Melnychuk, in Palo Alto . He himself suffered from severe arthritis years ago and found that homeopathy helped him greatly where Western medicine could not. http://www.paloaltohomeopathy.com/aboutjohn.html 3707 Lindero Drive Palo Alto , California 94306 (650) 213-8380
HIV and morbid comments
My brother is HIV positive, and he makes a lot of really ghoulish jokes about it. He often references his funeral, makes comments about how family reunions will be smaller, etc. I think he's trying to be funny, but man it freaks me out! For example: we'll be talking abut cars, and he'll just say "after I'm dead, you'll have my car, so you should hope I die soon so the mileage will still be low" This is tough to hear from someone whose only 29! What do I say in response to this?
-
It seems your brother wants to talk about death especially his. I suggest you dont try to avoid the situation and try to meet him in kind by lightly engaging him in the topic. Contact a HIV support group or phone line and ask them how to support your brother. We dont have a lot of experience in this culture how to face death much less talk about it openly. It might help to get get some books from the library by Stephen Levine. I highly reccomend 'Who Dies' by Stephen Levine. Just because your brother is talking about death doesn't mean he is going to die soon, but it is an opportunity to talk about what for every one of us is inevitable. Talking about it, especially for someone who is living with a terminal illness, can be liberating. Remember you dont have all the answers, so dont try to 'fix' anything just listen. He will appreciate it. Michai Freeman
Neuropathy
I have neuropathy in my hands, and lately I can't pick up coins or separate bills in my wallet. This may seem like a small problem, but believe me, it's a big pain. Lately, I've taken to handing my wallet to the person behind the counter and asking them to remove the right bills - not exactly a satisfactory solution. Does any have any suggestions?
- I have neuropathy in my hands, too, and have taken to using my ATM card instead of cash, as it is easier to get my card out of my wallet and push the buttons on the machine than dig through coins and bills. I also found out -- by accident -- that a TENS Unit I was using for chronic pain has helped to improve my sensation significantly.
Prednisone
Question:
I have chronic respiratory disease that has begun to get much worse. My Doctor
has recommended that I go on prednisone. I've read about the side effects and
I'm pretty worried. Could anyone share their experience of using this drug?
Pat
Answer:
Prednisone is a double edged sword. It can be very effective at reducing inflammation,
but it has some major side effects. If the dosage is anything over 30mg per
day you can expect to be anything from quite irritable to a rage filled monster.
You'll have lots of nervous energy, greasy skin, acne, massively increased appetite,
disrupted sleep patterns...good times. Two of the odder side effects I've notice
is that I often forget where I parked my car (I don't lose anything else, just
the car) and an increased desire to buy things. I 'm usually quite frugal but
when I am taking Prednisone I often get the desire to spend lots of money. Having
said all that, the stuff is really quite effective -that's why they're still
using it. Make sure that you read up on the internet about calcium supplements
etc. Another side effect is osteoporosis. Good luck
