In This Issue:
Sharman’s News, Sharman Collins
To Japan On an Innertube, by Elinor Young
The Knife is Not So Rough if…, by Richard L. Bruno
A Butterfly on My Nose, by Elinor Young
Washington State Fish & Game on Disability Issues, by Dave Graham
Linda’s Library (Linda Scott)
Futures Unlimited, Part 2, by Sharman Collins
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Sharman’s News
HAPPY HOLIDAYS! Hard to believe, but it is once again time for pumpkin pies, turkey dinners, and the never-ending football games. Coping with the holiday season can be exhausting for anyone. If you have post-polio syndrome, the extra work and excitement can be physically disastrous. You must be careful to rest when fatigued.
My family (husband, all four sons, two daughters-in-law, and one girlfriend) is spending Thanksgiving in Arizona. Picking fresh grapefruit and lounging by the pool sound like great holiday activities to me. This year I will be able to help with the cooking, too, which will be alot of fun!
Mark your calendar for the next meeting… MONDAY, NOVEMBER 25th. (Please note that the meeting is on Monday instead of Tuesday.) Sue Lienhard, Pharmacist, will be our guest speaker. She has a wealth of knowledge to share with us concerning pain control. Originally scheduled to speak in September, Sue canceled because of illness.
Have a warm and wonderful holiday season! Much love from your friend,Sharman
To Japan On An Inner-tube
by Elinor Young
I don’t know about you, but there are times when I feel that things seem plainly out of control. Like the time I got caught in an ocean tide. But, before we get to that, let me tell you about me and swimming.
On land, gravity keeps my legs under me. In water, my legs float, which might be OK if they could kick. But even self-floating legs would be all right if my arms could pull my weight through water, which they can’t. I just don’t have the right combination of working muscles to be able to swim. I can hang onto an inner-tube, though, as tenaciously as a barnacle to the Santa Maria. That ability came in handy once during my missionary career in Indonesia.
I had flown from my home in the mountainous interior of Irian Jaya to have a short vacation on the north coast. While there, one especially hot day, some like-minded friends and I went to the beach to swim. I got into the Pacific on my trusty inner-tube. Boy, did it feel good! .
The waves were wonderful… until I noticed they were getting more boisterous and I was farther from the shore than I should be. I tried stroking. Sure – my arms vs. the Pacific?! Shore was getting farther and farther away as I headed for Japan. I wondered how long it would take me to get there. Then I noticed, about a mile off shore, a line of Indonesian fishing boats. The whole-family-lives-on-them-all-the-time kind. Not pictures of reassurance, but there was a chance one of them would notice me floating by and pull me into their boat. I could visualize my potential rescuers heading into shore with me-and-my-inner-tube, asking swimmers, “We found this out there. Does it belong to you?”
By the time my friends saw my plight, I was past the coral. Frank tried to swim out to rescue me, but he got caught in the current, rolled around and cut up quite badly on the coral. I’d have to take my chances with the fishing boats.
Then my direction changed. I was in some kind of huge whirlpool that was taking me towards shore again. But now the tide was lower, barely covering the coral. My destination had changed from Japan to the bottom of the coral reef, still clutching the remnants of a sure-to-be-tattered inner-tube. It was time to get serious.
As each wave surged me forward, I pushed up on the coral with my hands to skim the inner-tube over the top. First one, then another, then another…. I made it back across the coral and to shore with barely a scratch — not even on my trailing legs. Their talent for floating served them well that time. My relieved friends pulled me out of the water, and I sat sheepishly on the sand, feeling badly for poor Frank who was lying lacerated and exhausted on the beach.
Actually, that’s not the only time life seemed to be taking me to Japan on an inner-tube. And I expect I’ll again find myself in a situation that seems out of control, propelling me in a direction I don’t want to go. As before, friends may be helpless to come to the rescue.
God didn’t send a helicopter to pluck me out of the water, either. Instead, he gave me the presence of mind and creativity to use the power of the very waves that could have spelled my doom, to lift me up and over the coral away from harm. So it has been with all of life’s waves, because, as the Biblical Jacob told his son, “The eternal God is your (my) refuge, and underneath are the everlasting arms.” (Deuteronomy 33:27) Under God’s control, the waves are meant for good. “For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.” (Jeremiah 29:11) I need to keep my head and use the opportunities God has wrapped in the waves.
The Knife Is Not So Rough If…..
This is an excerpt from an article by Dr. Richard L. Bruno. Dr. Bruno put this article on the Internet and asked that it be shared with polio survivors.
If you have to go under the knife, we suggest that you give a copy of this article to each member of the surgical team and to the nurses on the hospital floor where you will be staying. Discuss the article with your doctor and ask that a copy be put in your medical chart.
PRE-OPERATIVE PREPARATION – This is the most important period, since this is the period when you must establish communication with the surgical team. After a second opinion, meet with the surgeon and the anesthesiologist to discuss in detail your complete polio and general medical histories and any problems that might arise before and during surgery, in the recovery room and on the nursing floor.
LUNGS – It is recommended that all polio survivors have pulmonary function studies as part of your preoperative testing. This will help the surgical team evaluate the proper type of anesthesia for you and will help eliminate any unpleasant surprises coming off a respirator at the end of surgery.
PHYSICAL ASSISTANCE – X-ray and examining tables are built at heights that are convenient for the professional, not the patient. Many polio survivors cannot step on a stool to get on a high table. Polio survivors must ask for help in transferring. Since most polio survivors are not good at asking for help, they need to find a phrase with which they are comfortable that will communicate their needs. If you run into someone that does not want to help or work with you, ask for someone else to help or ask to speak to their supervisor.
GENERAL ANESTHETICS – Polio survivors are exquisitely sensitive to anesthetic. A little anesthetic goes a long way and lasts a long time due to the damage of the brain stem – called the reticular activating system. Polio survivors have been known to sleep for days after surgery.
For polio survivors we use the RULES OF 2 for surgery.
ANESTHETIC RULE OF 2 Polio survivors need the typical dose of anesthetic divided by 2. This is merely to remind anesthesiologists that polio survivors need much less anesthetic than do other patients. Also, polio survivors can be sensitive to atropine-like drugs used during surgery.
POSITIONING – One overlooked problem is the positioning of the post-polio patient on the operating table. Muscle atrophy, scoliosis and spinal fusion may make certain positions problematic. It would be advisable for the patient to be awake during positioning on the table to prevent post-op complications..
POST-OPERATIVE CARE:
COLD – Polio survivors are extremely sensitive to cold because they have difficulty regulating their body temperature.
No polio survivor should have same-day surgery for any reason except for the most simple procedure that requires a local anesthetic.
POST-ANESTHETIC RULE OF 2 – Polio survivors require 2 times as long to recover from the effects of any anesthetics.
BLOOD AND GUTS – Polio survivors with muscle atrophy will have a smaller blood volume that would be expected for their weight and height. Therefore bleeding during surgery may be more of a problem. Polio survivors cannot control the size of their blood vessels, since the nerves that make the smooth muscle around veins and capillaries contract were paralyzed by poliovirus. Therefore, polio survivors blood vessels open under anesthetic and dump the heat of their warm blood into the cold recovery room. Polio survivors must be kept warm.
VOMITING – Another post-op problem related to brain stem damage is vomiting. Polio survivors are more apt to faint (have vasovagal syncope and even brief asystoles) when they attempt to vomit. It is important that post-op emetic control be discussed with the anesthesiologist and administered before going to the recovery room.
CHOKING – Polio survivors who are aware of having swallowing problems, and sometimes in those without apparent swallowing difficulty, cannot clear secretions and may choke when they are lying on their backs. Polio survivors secretions need to be monitored in the recovery room and they should be positioned on their side if possible so that secretions can drain.
PAIN – The single most troublesome problem after surgery is pain control. Under-medication is a serious problem for the post-polio patient since two research studies have shown that polio survivors are twice as sensitive to pain as those who didn’t have polio.
RULE OF 2 FOR PAIN Polio survivors need 2 times the dose of pain medication for 2 times as long.
RECOVERY – Polio survivors need more bed rest than most patients, because of autonomic nervous system damage. Polio survivors are the best judges of when they can move, stand and walk safely.
RULE OF 2 FOR RECOVERY – Polio survivors should stay in bed 2 times longer than other patients.
RULE OF 2 FOR LENGTH OF STAY – Polio survivors need to stay in the hospital 2 times longer than other patients.
RULE OF 2 FOR WORK – Polio survivors need 2 times the number of days of rest at home before they return to work or household duties.
RULE OF 2 FOR FEELING BETTER – Polio survivors need 2 times longer to feel back to normal again.
CONCLUSION
All of the Rules of 2 are suggestions for polio survivors and the surgical team; they are not a substitute for specific information about the individual patient and communication among all members of the treatment team, including the patient.
A Butterfly On My Nose
by Elinor Young
Respiratory weakness is a common problem among us with PPS. A very helpful solution is the periodic use of a BiPAP ventilator to give those tired breathing muscles a rest.
So far so good. But then comes the mask problem. Up until recently the best method of delivering the air to the lungs was a mask that fitted over the nose. Fine, if all you do is sleep when you’re wearing it. But I don’t. Besides using it at night, I need the BiPAP for several hours in the afternoon, too. I want to use that time reading, using my computer or watching TV. Kind of difficult when I’m looking cross-eyed past a mask between the eyes. So I tried “Nasal Pillows,” little thingies that fit right in your nostrils (thus the Polio Connections ‘Polio Yearbook’ article, “A Rubber Hose Up Your Nose”). But again the tube is between your eyes.
Finally – voila! Somebody invented the Respironics Monarch Mini-mask. It’s a thin plastic bubble that fits right up against your nostrils, and nothing comes higher than that. No mask, no tube, nothing. Good-by eye strain and claustrophobia.
Got a BiPAP? Try the butterfly on your nose … you’ll like it.
Washington State Department of Fish and Wildlife active in disability issues
by Dave Graham
Last year at this time I was writing a nice fluffy article about how wonderful it was to be out in the woods with my sons enjoying our annual deer hunt. I told you how beautiful it was as I sat there, mobility impaired, watching nature. The fact was that I was a spectator… not a participant.
Not this year!
…….In 1988 the Department of Fish and Wildlife appointed the Citizen’s Task Force for the Disabled. Since then this advisory group has been instrumental in changing the laws to accommodate disabled hunters and fishers.
…….What they have essentially done is give me back a sport that I love.
…….With a Disabled Hunter Permit I am allowed to roll through the woods and shoot from my stationary vehicle.
…….Now, that immediately conjures up some wild visions. Those of you who have hunted can picture legions of armed road-hunters, all entirely legal. In actuality, the Department has gone to great lengths to preserve the integrity of the ‘on-foot hunt’. It is not all that easy to attain such a permit with forms and visits to the doctor for qualifying signatures. But, once a person has the permit, it brings a freedom that is not usually part of our disability.…….There is a list titled Permitted and Prohibited Activities that the Department issues with the permit. The very nature of these activities requires precise wording in their description so I will not attempt to relay them here.
…….I will, however, give you the needed information and encourage you to contact these folks. At the urging of the Americans with Disabilities Act, they have done their very best to give us the thrill of a sport that has historically been enjoyed only by the able-bodied.
…….In future editions of PEN & ink I will be reporting on other disability programs such as those that are currently being offered by the National Rifle Association.
Contact: The Washington State Department of Fish and Wildlife – 600 Capitol Way North, Olympia, WA 98501-1091 – Phone (206) 902-2200. The regional office is located at 8702 N. Division St. Spokane, 99218-1199.
Phone (509) 456-4082.
Linda’s Library
A unique and valuable resource for anyone interested in post-polio syndrome.
from Linda Scott
Contact Linda by writing to 1320 N. Hollis
Spokane, WA 99201-3012
When family and friends ask…say, “All I want for Christmas is a terry cloth robe.” Just slip it on, letting it dry your skin, saving strength for hair, etc. One source: Support Plus, 1-800-229-2910, #R345, $59.95 sizes S-1X for ladies, but gents should find sizes L-1X OK.
NEW in the LIBRARY
‘INDEPENDENT TOGETHER’ is a video for polio survivors made by polio survivors about PPS. Topics include transporting scooters, bracing and in general how we at Polio Outreach of Spokane do a meeting. The video is 36 minutes long. You may have your very own copy to share with family, friends. It can be a very good companion if you are not able to attend a support group meeting regularly. The personal essays are touching and may express the feelings you’ve kept inside. Do add it to your existing support group library. All net profits go to Polio Outreach of Spokane library fund, which includes all the services and information provided on this page.
…….Send $15.00 plus $2.00 for shipping and handling. Make checks payable to: Linda Scott/POS.
…….While all of us are new to video making, we’re very proud that ‘INDEPENDENT TOGETHER’ was a finalist at the Disability Film Festival in August because of its heartfelt content.
NEW MOBILITY MAGAZINE: The September issue features Parenting Perspectives. The October issue features Working (including from home), Real Problems, Real Progress. Watch for comments from polio survivors and about PPS. Call 1-800-543-4116 for a subscription.
THE PPS BIB: 75 pages on a floppy disk of articles about or relating to PPS. Just call me if you’ve not found info on the topic you need. I’ll check the BIB. To order your own disk or paper copy of the index send $20 to PPS BIB, Bonnie Hatfield, 2 Coral Way, Half Moon Bay, CA 94019-2300. She charges a nominal fee for each article she sends out.
HANDOUTS BY MAIL
Your appreciative letters and phone calls make handouts by mail worthwhile. But with the growth in requests, costs increase, too. If you have received or will be requesting handouts, please send a donation. Under no circumstances will any requests be turned down as our goal is to provide much needed information about PPS, but those of you who can make a donation, please do so. Thank you very much, Linda.
“THE 1996 KEEP WARM UPDATE:” two pages of comments by medical professionals explaining why PP’s are cold and what we can do about it, plus sources for all kinds of keep warm products for ladies and gents and fellow PP’s suggestions. This is the update to the handout, “Winter is..” the essay on one side and coping tips on the other.
“THE SUN AND US,” by DR Gregory Carter and annotated by Dr. Vivian Moise. This article deals with our body’s ability to ‘thermoregulate’. Necessary for all of you in the sun belt now and the rest of us next summer. (Reprinted with permission from CMT, Intl.)
Changing Your Life By Conserving Energy, by M. Matheson, MD
Innovation & Adaptation to the Challenges of Everyday Living, by Carol Penn
Bouncing Back Without Guilt, by Wendy Clyne, Psy.D.
…….All three of these articles can help you with holiday planning and New Years resolutions. They offer practical tips on adapting our lives written by professionals who understand PPS. (All three have been previously offered)
FUTURES UNLIMITED, INC., THE SEQUEL
by Sharman Collins
In the September-October newsletter, I related my experiences at Futures Unlimited, Inc., in Columbus, Mississippi. Futures provides out-patient physical therapy and rehabilitation primarily for clients suffering from post-polio syndrome, spinal cord injuries, cerebral palsy, head trauma, and developmental disorders. In the field of rehabilitation, the clinic’s efforts are primarily directed by Ed Snapp, P.T. Mr. Snapp is a polio survivor. My therapy started on August 11, and finished on August 25, 1996 The results of the treatment are truly remarkable…very little short of miraculous! In the last five and one-half years, my physical condition deteriorated rapidly. I had no physical limitations six years ago. As of August 1996, I was spending 12 hours a day on a Bi-pap, wearing a rigid full-torso back brace, using my scooter to go from one side of a room to another, and unable to cook, clean, or use my muscles in any sustained way at all. When I left Futures after my treatment, I was astounded by how good I felt. I went to the clinic expecting no improvement. Over the years, I have tried many different types of treatment. None of them gave me any significant relief. But I was determined to keep on looking–not only for me–but for all of us. Post-polio syndrome is the great robber of vitality and ability. If there was a viable treatment option out there, God-willing, I would find it. I have gained measurable strength each week since I have been home. My scooter is parked in the garage to use to take the dogs out for a long walk up and down the back of my hill. My back brace and Bi-pap are in the closet, unused since the end of August. In the last month, I have been able to shop—on foot—for hours. My kitchen is once again MY OWN. I have made pies, cookies, muffins, and dinners for my family, all in the last several weeks. I am knitting again and able to sew a bit, too. My body temperature is back to normal–no more freezing legs. My body is still weak, but I am able to exercise hard in the pool now. And I am gaining strength. Everyone asks me, “Will this last? How much stronger will you get in the future?” I am leaving that up to the Lord. I will do my part, and He will take care of the rest, in whatever way He desires. May He do what He will with this new-found physical strength. It is in His hands, as is everything else in my life.
If anyone is interested in finding out more about the clinic, contact Ed Snapp at 1-601-327-7333.
Polio Experience Network, by policy, does not endorse any particular medical treatment but seeks to inform and educate.
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