LIVING WITH HYDROCEPHALUS
Debbi's Hints, Helps & Tricks
Debbie Fields shares tips for everyday life with hydrocephalus. These are not specific to Normal Pressure Hydrocephalus, but may be helpful for anyone with this condition.
During Recovery from shunt implant or ETV you may need (and most of us do), learn to do “things” in a different way – OR – the correct way. Hopefully, you will find the help and answers you are looking for.
Physically, after surgery, it takes about 4-6 weeks. Some patients recover quickly and, of course, some patients take a bit longer to physically recover.
During the first week to 10 days, you may want to take a nap or two during the day. (This in on an average – for some, it may take a little longer.) It’s okay, and nothing is wrong with you or with the shunt.
When you feel pretty fit, possibly about 2-3 weeks after surgery, you might want to consider taking one or two short walks. For example, up and down one block. Do this every other day. Increase these walks every week or two weeks by walking a little farther. Maybe your spouse or a friend would like to join you. Of course, this is healthy for your body, but it helps in (gaining) strength and balance. Another area that has helped others is walking with a spouse or friend and discussing a current event or happening, and not just with the outside world, but with each other’s families. Seems to help your focus on “short term” memory.
Play a board game will also help your short-term memory. Suggested games are: Monopoly, Match Game, checkers, chess, etc. Anything where you need to remember and it is all “short-term.” Warning: It will pose as a challenge, but you can over come this roadblock.
Headaches: First, if you keep having re-occurring headaches, for example, one that develops during your sleep, or, perhaps soon after you get out of bed in the morning. These are things that need to be discussed with your neurosurgeon. IF you suspect you are having such occurrences, then get a small notebook that you can write the date, approximate time, and what you were doing at the time (that the headache came on). Making these notes will not only help your doctor, but they will help you to realize that there is, or isn’t, a pattern.
Headaches that come on while sleeping: Get a FIRM bed pillow, AND, a travel pillow to keep above your head (in case you need it in the middle of the night). These headaches nag “us” awake. If this happens to you, then grab the small pillow above or next to you, and put it under your head, but on top of (or under) the bed pillow. Keeping our heads slightly elevated during sleep seems to help prevent or alleviate the headaches.
Headaches that occur within a couple of hours after getting up in the morning: As stated above, this “could be” a sign that needs to be discussed with your neurosurgeon. But, after keeping a record (as mentioned above), and there is no set pattern (per say), and they do not occur everyday. Following are some “tricks” you can try.
Headaches – occasional (or ???): Everyone gets headaches, and there are all types of headaches. On the other hand, there are those who are outside-the-norm. Hopefully the following will help you like they have helped others.
The first thing to take into consideration: What is the weather like, is there a storm approaching? Many people (even the children) become living barometers. When a weather front is approaching and the barometer drops or rises about three degrees one-way or the other, “we” feel them. Not only physically, but mentally too. A person with hydrocephalus cannot think straight, do some tasks (such as straightening up a room – they walk out of the room and get distracted in doing something else), often feel like they have a sinus problem, or just feel “icky.” When you find yourself in such a situation, we suggest to others that they just sit down and let the TV “baby sit” them. Do not try and concentrate on something (even a crossword puzzle), as it generally drives a person mad (so to speak) as they know the answer, but it escapes them or they cannot spell it. Even knitting or crocheting something – do not even attempt it, or later, you will find all the mistakes you made and (trust me), you will NOT be happy. Just give yourself a day to totally relax… don’t feel guilty about it, either.
On the other hand, should the weather be fine, and yet you have a nagging-plus headache, try these tricks, hopefully, one (or more) will work for you:
Get a heating pad (set it on low or medium – depending on how hot you can stand it or like it to me), popcorn pillow (like the ones sold at the mall, in Wal-Mart, Target, etc.), warm it up in the microwave. If you have none of these, then get a washcloth and run it under warm water until it feels just right (for you). Now, either sit in a reclining chair (half way laying back), or lay down on your bed or sofa, BUT with a pillow or two under you. Put the warm/hot item on the area that hurts the most. Relax for about 10 to 15 minutes, remove the item, and continue to lie there for a minute or two, then SLOWLY sit up, relax for a moment, then slowly stand up, maybe walk across the room. Feel better? If not, you can repeat this process again. If nothing works after about 3 tries, then take a nap. Even if it is a short one, this should help to alleviate the headache.
Can stand the heat, it does not seem to help, or it’s hot outside and this makes your headache worse (when you apply heat)? For some people, the heat simply does not work; it’s too hot (outside) to even want to apply heat. Whatever the reason, then you can try this trick using ice. An ice pack or ice cubes rolled up in a thin to medium cloth or towel should do the trick. Use the same steps, as described for using heat… and it should help you.
TRICKS (OR RE-TEACHING YOURSELF)
Tying your shoes: slip on the shoes then sit down and swing the one-foot over the opposite knee and then tie the shoestring.
Bending over to pick up something that is on the floor, driveway, or yard? Feel like you are losing your balance – OR – you actually do fall over? Then until you are physically stronger, it is suggested that you re-train yourself. Try to pretend that you are a mover and going down to the floor to pick up a heavy box. Keeping your back straight and using your legs, bend down to almost like a squatting position. Pick up the item and come straight back up.
Now, if you feel like you are losing balance while doing this – it is highly suggested that you use an item to “brace” yourself with – such as a cane, stool, chair…something where you can hold onto the item but, also use your legs and back to pick up that item from the floor. ALSO, there are grip-type devices that can grab things (you have probably seen
these advertised on TV or in magazines.
Exercise: Can no longer jog, bike ride, or exercise like you use to? Try walking, swimming laps, maybe even take up a new type of easy or beginning aerobic exercise… or, maybe, even try something you haven’t done in years – ice skating, bowling, etc. It never hurts to try. Remember, your body will let you know what it can and can’t do (right now), and/or what you will need to adjust for (in order to do this task).
The information and advised published online through NPH_Friends is not intended to replace the services of a trained health professional or substitute for medical advise of physicians. Users should consult with their physician and/or therapist before making changes to the prescribed medial routine/therapy. NPH_Friends. NPH_Friends makes no representations or warranted with respect to ay information offered to individuals an/or families. Neither NPH_Friends, nor any of its members and/or affiliates will be liable for any direct, indirect, consequential, special, exemplary, or other damages arising there from.
Article contributed July 30, 2009 by:
National Hydrocephalus Foundation