Getting ready to fly, any advice

    • Anonymous
      September 10, 2006 at 5:06 am

      In a couple weeks I will be going back to California for a visit. I was so happy to be going to see some people again that I forgot that I will be flying and other than climbing the stairs to get on one of those small planes I don’t know if I will have any problems. I had GBS in March 2004 and dx with CIDP in November 2004. My problems are mostly sensory, bad tingling in hands, arms, legs and feet. Stiffness in my fingers, wrist, neck, chest and abdoman, with numbness on my feet top and bottoms. The main pain is in my back and knees. I do get tired at times and minor difficulty breathing, I have a general heavy and pulling down feeling all over. Has anyone had any experience with flying especially if it relates to any of my symptoms. Thanks in advance, unless I’m having one of those really really bad days, I will be going.

    • Anonymous
      September 10, 2006 at 9:42 am

      When I Fly, I’m real careful how I land.

      Welcome to the war, have a safe trip. Make sure u get a purdy stewardess to help u, and remember u will need lots of help.

    • Anonymous
      September 10, 2006 at 10:40 am

      Since I will be flying to Thailand in January (24 hours total on 3 different airplanes) I just asked my doc about this. Her advice was to take two regular aspirin, drink lots of fluids and move around as much as possible. I will be checking in my rollator and requested a wheelchair. I can walk with just a cane but only very slowly. In familiar territory like around the house I manage without support.

    • Anonymous
      September 10, 2006 at 11:06 am

      Hi Bruno and Norb,

      I am so very impressed that you are flying and wish you a good flight.

      How are your lungs? Do you need oxygen? I think a consultation with your pulmonologist is in order. Before security reached its current heights, a person could bring portable oxygen with them. I don’t know what current procedures are but, if you need to carry oxygen, script from your doctor is necessary,

      Using a wheelchair is an excellent idea.

      British Security would not allow me to carry some of my asthma meds on a plane over 20 years ago. Carry another set of prescriptions in case your meds are not permitted on the plane and you need to restock once you reach California, notifying your rx provider before you leave Colorado.

      I’m so excited for you!


    • Anonymous
      September 10, 2006 at 11:44 am

      Hello John, Going by where you live, looks like it won’t be a long flight. It won’t be a problem at all if you are going with someone, but if you are alone, you should still be okay. I flew from New York City to Anchorage, Alaska. I was with someone, but she mostly just stood by. I am semi-dependent on a wheelchair, can’t walk with a cane, but can do short walks with a walker. I surprised myself and found that I had become strong enough to climb up the steps to get on a small plane on the tarmac. To be safer, when you get off the plane, see if they will allow you to desend the steps facing them. If you use a walker or cane, you will be allowed to take one on the plane. I was able to manage the bathroom because there were the sink and walls that were within reach to hold onto. You could practice a few things before you leave. PRACTICE getting up from a standard height toilet, if you can do it by just raising up (no leverage needed), YOU WON’T HAVE A PROBLEM. PRACTICE climbing up steps, so you’ll know how you’ll do boarding the plane. AND, to ease your mind, time yourself and find out exactly how long you can hold before you MUST run to bathroom.

    • Anonymous
      September 10, 2006 at 8:31 pm

      [QUOTE=marguerite]How are your lungs? Do you need oxygen? —
      British Security would not allow me to carry some of my asthma meds on a plane over 20 years ago. Carry another set of prescriptions in case your meds are not permitted on the plane and you need to restock once you reach California, notifying your rx provider before you leave Colorado.
      Marge, I don’t have problems with my lungs, fortunately. I also won’t go via GB, it will be San Francisco, then Taipee (Taiwan) and finally Bangkok two days later, 2 a.m or so. 😮 — I am going to put prescriptions for just a few days in one of those travel pouches and put the rest of the two months supply in my check-in luggage. They are just pills and I don’t see why they should be a problem. I wished I could bring my eyedrops on the plane but that won’t be a good idea – no liquids. I do get dry and itchy eyes.

    • Anonymous
      September 11, 2006 at 3:57 am

      Hi, John.

      I’m an old timer–twelve years with CIDP–and I fly to the States to visit family annually; we leave again next Monday for a visit.

      Because I can’t get up and walk a great deal on a plane (any movement throws me off balance), I wear flight socks to keep down the risk of dvt and, like Norb, I take aspirin. Don’t be shy about asking for wheelchair help–I can’t stand for long periods of time, which can make check-in fun, so this year I called the airline ahead of time to arrange for a wheelchair so that I can sit through check-in and security.

      I have damage to the nerves of my diaphragm, which can make breathing interesting sometimes and a bit frustrating in the recirculated air of the airplane, but I’ve never needed oxygen. I’ve learned some of the breathing techniques used by asthmatics, which seem to help. The main thing is, if you have problems, don’t panic, which will only make the problems worse. Be sure that someone on the plane knows about the breathing problems, or keep a note in your pocket explaining the problem.

      And above all else, have a great time in California!


    • Anonymous
      September 11, 2006 at 5:16 pm

      I find that good hydration and assistance with a wheel chair in the airports are my 2 biggest needs. I always carried a spritzer bottle of lavender water for my face and I used it frequently. Now, well, maybe I’ll just carry a damp cloth in a baggie and pat my face:p And every 1/2hr faithfully do the excercises the airlines recommend. And 🙂 and enjoy!!

    • Anonymous
      September 14, 2006 at 9:15 pm


      I, too, have sensory CIDP with the heavy, pulling down kind of feeling. I fly on business (from Texas) two or three times a year. I don’t find the plane a problem. I can sit for three hours, but get tired after that if I can’t move around. Actually, I get less tired if I’m a little active.

      I do have a problem with the city I go to. The humidity may be higher and walking on the least of inclines can really wear me out. Drinking lots of water is crucial. Getting a good night’s sleep is vital as well.

      Did you read my post on Cerefolin NAS (Folic acid)? It has been hugely helpful for my sensory CIDP. I don’t have tingling anymore and don’t get restless in bed at night so I rest better. Never had pain, fortunately. Just the awful draggy feeling. I am so much improved now for the last couple of years….thank you, Lord! 😉

      Bon voyage,