When A Parkinsonian Is Hospitalized
By Beverly Steward
(from Central Ohio Parkinson Society newsletter, 9-93, adapted)
When a parkinsonian is admitted to the hospital it is very important to explain to the nurses some significant facts about PD...to make the hospital stay as satisfactory as possible for both patient and staff. Below is a list of some common problems PD patients have. Check those which are your particular problems. Make sure you put your name at the top...and hospital room number if you know it. Ask to have this sheet put in your file at your nurses' station, to make things easier for you and for the nursing staff. Consider having a close family member get a limited power of attorney to represent you, and if you have a Durable Power of Attorney for Health Care be sure the hospital and doctor have copies.
An example of the sheet follows:
My full name is________________________________Room_____ Bed_______
AS A PARKINSONIAN I HAVE PROBLEMS WITH ITEMS CHECKED BELOW:
Medication
Communication
Dear Ken
You are on the right track with calling attention to medications. Over 40 years ago when I went to the hospital to have babies the nurses insisted on giving me demoral even when I told them not to because it made me throw up. They insisted it was standard hospital rules to give a shot when mothers were in labor. This went on until my o.b. Doctor arrived and made them stop. After my 4th child was expected I raised merry hell till the supervisor of nurses came in to see what the noise was about. I told her that she better put a big red sticker on my chart with no demoral or I would make all kinds of complaints to administration and news papers all over Southern California. She thought I was hysterical but I told her I was just tired of being treated like an idiot who didn't know what made me sick.
she finally checked with my doctor and came back with a nice red message on front of my chart that nurses do not give me any medications without first asking me or checking with my doctor.
The next 3 babies were born at the same hospital and hospital policy made a rule to use red alert stickers for all patients with problems about medications.
we now live in the mountains and have a wonderful small hospital and they put a red band on my wrist listing all the medications I cannot take. Seems that the same method should work for people with parkinson's.
Most doctors and nurses are great and do the best they can but sometimes they are over worked and may be worn out.
Taking bottles of medications to the hospital is a good idea, particularly if the medications might not be available through the hospital pharmacy (like any new PD drugs that have just hit the market - or drug trial drugs that aren't available at all). As a nurse, I appreciate the family that has necessary medications readily available - hospital pharmacies can be painfully slow in filling prescriptions, and if the patient needs their medications on time (like PD patients do) having the rights pills in a pinch is a God-send.
That said, the nurse and doctor's most appreciated record tool is a list of medications (with administration times included) and a record of past hospitalizations and diseases (including **all** surgical procedures - even that tonsillectomy you had performed at age 6). Don't forget to document that arthritis you've been suffering from - you'll be happy you remembered when you need some Tylenol or Motrin for the pain and it's available because the doctor wrote the order (I spend more time chasing down doctors for minor pain med orders than anyone on this list could believe). Since all of you have a computer and (I assume) a printer, please take time today to make a list of the aforementioned. Keep that list readily available (in your purse or wallet). Up-date it every time a change occurs in your medical regime. Remember - include every hospitalization with the date and reason for admission. Make plenty of copies so you can leave one at the hospital without losing your precious record.
Also, please remember that all living wills and Durable Power of Attorney records *must* be added to the patient's chart *every time* that patient is hospitalized. Old chart records do not transfer authority in regard to either document. If a no-Code status has been determined, it must be renewed *every time* the patient is re-admitted - it does not automatically carry from one hospitalization to the next.
Doctors and nurses need certain information. Helping them get it can mean faster and more accurate medical decisions. On a card or piece of paper in your wallet, here's what the pros would like to know: name and date of birth; name and phone of primary physician if you have one; previous hospitalizations and surgeries; any medications you take; and family medical history, especially things like cancer, diabetes and heart trouble. It may seem like a lot, but it's worth it.
"As much information as a patient can give us about their medical history, the better it is for them. Because it's all pieces of a puzzle [that] help us determine what's going on at the time and how we can treat them and make them feel better," says Jean Marie Lucas, clinical nurse specialist for the Johns Hopkins Emergency Department.
Lucas says some people are hesitant to share their habits and histories on paper. But she reminds patients that hospitals are there to help, not judge.
Copyright 1999 The Johns Hopkins University. All rights reserved.
The first page is tabbed "Medic Alert"... A page that states that I have Parkinson's. In addition it gives my g.p.'s name & phone #, my neuro's name and phone #, lists the medication's I take (drug,dosage, timing) blood type, and allergies.
The second and third pages are tabbed "Personal Data" and list my name, address, tel.#, fax#, e-mail, my social insurance #, my Health Care #, my age and date of birth and my language for communication. In addition my CareGiver (my wife) is listed, and the names, addresses, and tel. #'s of my 5 children and my sister who lives nearby, under the heading "If You Are Unable To Contact Caregiver and an Emergency Exists, Please Contact..."
The next several pages are monographs of the medications I take and are marked with tabs for each individual med.
At the back of the binder are plastic pocket pages tabbed "Pertinent Phone Numbers". These pages have business card pockets and contain the following business cards. My g.p.; my neuro; my pharmacist; my dentist; my optometrist; my physiotherapist; several Parkinson Resources such as UBC Neurodegenerative Disorders Centre; NPF; B.C.P.D.A.; my employer; my trade union; my wife's employer; etc.
Each card has a computer generated label "Doctor" "Neurologist" "Pharmacist" etc. Each label is bright yellow high-lighted. It's like a very condensed who's who yellow pages customized for one individual - me!
In the pocket in the binder cover is a photocopy of the latest blood tests I've had (on the Labs letterhead with their address and phone #) There is a running log sheet where I mark the date and reason for any medical related office or hospital visit.
The beauty of this binder is that ALL the information is in one place, its ALL in plastic protector covers, there are no loose pieces of paper, it is very portable, and available in an instant. I find it a very handy reference tool when I want to call my dr. or neuro, etc.
This binder sits under the phone when I'm at home and goes in my personal carry on bag when I travel.
I have a wallet card that states all my medical info is in a 3 ring binder and where it should be located.
I recommend that everyone (not just PWP's) should consider organizing similar databases. Ya never know when it just might be very handy...
If you're ever rushed to the emergency room, unconscious or unable to speak clearly, what would you like the medical team to know about you? Having Parkinson’s rarely sends you to the hospital, but it does tend to complicate your care.
Your neurologist may not be at the hospital; the attending doctors and busy nursing staff may not be knowledgeable or have had much experience with people who have Parkinson’s. To help avoid a bad experience, plan ahead and allow the doctors and nurses to make faster and more accurate medical decisions by having all the information they need readily available. If they are unfamiliar with Parkinson’s, there is also the possibility your symptoms could be misinterpreted and you could be labeled an “uncooperative” patient or you might get additional blankets for a chill when you are really shaking from a tremor. In order to avoid these possibilities, have a card in your wallet that tells where someone can find comprehensive emergency-hospital information.
Get a three ring binder and include additional data from the following suggestions.
INFORMATION FOR MEDICAL CARE AND ASSESSMENT
My full name is ______________________________________
Address:____________________________________________
Phone: __________________
Insurance Info: __________________________________
Phone: __________
Social Security No. ______________________
Date of Birth: _________________
DOCTORS
I was diagnosed with Parkinson’s disease in ________. (year)
It is important to have a neurologist/doctor familiar with my condition.
Family doctor: ____________________ Phone: ________
Neurologist: _________________________ Phone: ________
Other:_____________________________ Phone: ________
Blood type: ___________
Allergies: ___________________________________________
Please contact:
Name:_________________________________
Address: _________________________
Phone:_________________________
Name:__________________________________
Address _________________________
Phone:_________________________
Name:__________________________________
Address: _________________________
Phone:_________________________
MEDICATIONS
I must be given my medication promptly at the times specified. If this is not possible, consult my admitting physician for authorization to administer my own medication or alternatively, have it administered by my CareGiver. The timing of my medication is very important to help my “off” times. Following are all prescription and over-the-counter drugs I currently take.
| Medication | Strength | Time Taken |
Possible Side Effects: nausea, dizziness, mental changes, confusion, hallucinations, involuntary movements, loss of appetite, dryness of mouth, lowered blood pressure.
If I am on Eldepryl, I MUST NOT BE GIVEN DEMEROL.
Eldepryl with Demerol can be deadly! To be safe, Eldepryl should not be taken for a period prior to taking Demerol. It is imperative that my attending physicians verify and stipulate this interval. A number of other drugs may be contraindicated with some I take, please check it carefully.
WHAT IS PARKINSON’S DISEASE? Parkinson’s disease is a slowly progressive disorder due to the accelerated loss of the brain chemical dopamine (a neuro-transmitter) that activates the message system controlling movement. Its symptoms are tremors, rigidity, slowed gait and balance impairment (which may resemble intoxication, but is not). These worsen and lessen several times a day in “on-off” cycles. It is important that those who care for me outside of my home have a basic understanding of the disease so that observations and impressions can be accurately treated as characteristics of Parkinson’s and not as personal behavior traits. Please note that stress, anxiety, lack of exercise and/or the need for rest may worsen my condition. Therefore, I HAVE CIRCLED PERTINENT INFORMATION AND MY SPECIFIC SYMPTOMS . Name: _______________________ Room ______ Bed______
MEDICATION Administer Parkinson medication EXACTLY on schedule. Without medicine I may become rigid and disoriented. Response to medication may affect physical therapy timing.
AMBULATION Have difficulty with balance, stooped posture, swollen feet. Difficulty walking (a decrease in natural arm swing, short shuffling steps, difficulty turning). May freeze and fall. Require help getting started and walking. Dizziness. “On-off” symptoms (able to perform one minute, but not the next— which may be related to timing of medications.)
ELIMINATION Urinary problems (hesitancy, frequency, inability to wait, or incontinence.) Suffer from constipation, need special diet or other treatment. Impaction is a significant danger.
COORDINATION Tremor, rigidity (cannot open food or other containers easily). Cannot always repeat a former action. May not have strength to push call button. Have slow responses. Have trouble turning in bed. Dyskinesias (involuntary, unwanted, writhing movements) caused by sensitivity & over-medication-not to get attention.
COMMUNICATION Speech problems: low voice volume, slurred indistinct words. Face shows little or no emotion ("mask of Parkinson’s"). Depression and dementia from the disease.
EATING & SWALLOWING Difficulty swallowing. Choke on food. Very slow eater. Need special diet due to the effect protein has on my medication. Drooling.
SLEEPING Trouble getting to sleep. Sleep fitfully. Have anxiety sweats.