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Sometimes You Just Have to Take a Chance

By ScotCharles

January 10, 2011

In a few days I'm off to Egypt for three weeks on a trip I've dreamt of all my life. The trip is disabled friendly I am told. My partner's doctors don't believe he's up to a long flight so I am going by myself. All of my doctors have told me that my neurological issues may flare up on the arduous trip I am undertaking. But, you just have to tuck your chin in sometimes and take a chance.

One of my neurological problems is that my body does not produce enough neurotransmitters to handle stress such as too much physical effort or too much sensory input. In the past I have had instances where my body shut down to the point that I didn't have sufficient strength to walk or talk. I also suffer from panic attacks brought about by too much sensory input such as you might experience in a large crowd.

I was worried that I would suffer panic attacks during my trip; however, I have been working with my psychiatrist on some strategies to avoid panic attacks. One of them is to limit my sensory input by concentrating on one thing until the panic attack subsides. I have learned also to be aware of a fast heart beat or a flushed feeling as the warning signs of an impending panic attack and to take counter measures, such as concentrating on one thing or removing myself from the situation. If all else fails, I carry 2.5 mg of Xanax, which is very fast acting. So far just the comforting thought that I have that Xanax available has been enough to stave off a panic attack.

The physical weakness is quite another thing. I have just so much neurotransmitters available and I can exhaust them with what other people would consider light effort. The physical weakness is made worse by emotional stress. Working with my psychiatrist, I have increased my neuropsych meds to control the emotional stress. It is up to me to be in touch with my body and know when I have to rest. In the past I have found the physical weakness to be very embarrassing as I walk with a slow shuffling gait and I cannot lift my arms. Now working with my psychiatrist and my neurologist I know to ask for help if I get weak. The stimulating effect of alcohol also depletes my neurotransmitters so I have sworn off my usual two glasses of wine with dinner for the duration of the trip. The tremor in my hands I can hide by keeping my hands in my pockets.

Another neurological problem I face is that I have a hard time making myself understood; sometimes what I think I am saying is not what other people hear. This problem is associated with my control of my tongue which feels as if it is too big for my mouth. I often bite the edges of my tongue and have been startled awake many times after I crunch down on it. I have learned to pay attention to what I say, to be polite if people don't understand me, and to repeat myself if necessary.

The old problem of the ghostly shapes in my peripheral vision has returned. I am often startled by those shapes, which can look quite threatening. I take medication to quell these hallucinations; nonetheless, I still see them. I try to control my reactions; but, I still react to them sometimes. My psychiatrist tells me these shapes at the periphery of my vision are a symptom of early dementia. Humorously, I used to think I was psychic because I saw these shapes.

I also continue to have auditory hallucinations during which I hear people say things they haven't said. I used to think I was hearing people's thoughts. I have learned to distinguish an auditory hallucination from actual speaking by not responding unless I am facing the person speaking and I see their lips move.

I have medivac insurance in case I have a major neurological episode and there is an acceptable American hospital in Cairo. My CD4 count is 375, my CD4/CD8 percentage is 17%, and I have a viral load of 6,000. I have had all my shots. Whether or not a trip to Egypt is a risky venture for me is to be seen. I think sometimes you have to take the plunge with a calculated risk. I may not be able to go on many more foreign adventures in the future so here I go. I'll tell you how this old boy holds up in late January.

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See Also
Neurological Complications of AIDS Fact Sheet
More on Neurological and Neurocognitive Complications of HIV/AIDS

Reader Comments:

Comment by: Jessica A. (Texas) Wed., Aug. 3, 2011 at 1:40 am UTC
This is really a sad story. Really touchable i can't control my tears by reading your story. God bless you.

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Comment by: J. P. (San Francisco, CA) Tue., Feb. 1, 2011 at 10:02 pm UTC
I hope that you are okay & comfortably back in the USA. I know your trip overlapped with the protesting in Egypt.

Be sure to check in with your followers here on the Body. We worry.
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Comment by: Paul (Atlanta,GA) Thu., Jan. 20, 2011 at 10:26 pm UTC
I anxiouly await the report on your Egyptian excursion. God speed ScotCharles!
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Comment by: Jim (Portland, Me) Thu., Jan. 20, 2011 at 3:45 pm UTC
I went to Egypt a couple of years ago and it was wonderful. The people are friendly and for the most part honest. I left my day pack at a coffee shop in Cairo and when i realized and went back about an hour latter the owner had it behind the counter and he gave me a little good luck charm so that i would not forget again.

If you can take a felucca ride down the Nile.

Happy Travels, stay safe, the Mid East is one of my favorite parts of the world.
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Comment by: Paul M (Worthing) Thu., Jan. 20, 2011 at 1:52 pm UTC
Just want to say good luck mate. If there's one thing that HIV has given me is a realisation that I only have a finite time on this arh and it is important to make sure I can enjoy every opportunity I can.

Seeing different countries, cultures and experiencing new adventures is what I want to be thinking of it it's my time to depart.
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Comment by: Leonard (Ft Lauderdale) Thu., Jan. 20, 2011 at 1:21 pm UTC
I, too, hope that your trip has been a great success, and I'm anxious to read the trip report. I've wanted to visit Egypt and other non-western European countries but have been reluctant to go through customs/passport control with my AIDS meds. Did you have any problems? Did you have to reveal your medical condition on your visa application?

I hope this trip reinforces your confidence that you can continue to travel for many years to come. Best wishes.
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Comment by: Kevin S (Sacramento, CA) Thu., Jan. 20, 2011 at 1:00 pm UTC
I truly hope you have a well-informed travel buddy, who may be someone you ask once you arrive on tour. If they are well briefed on your potential experiences, as well as best responses, I think your trip can remain a pleasant expereince even if one of those unpleasant side-effects decides it's on holiday too! Best of health!
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Comment by: ScotCharles (los angeles) Sun., Jan. 16, 2011 at 2:21 am UTC
I'm on the final two days of my trip. I've had some minor panic attacks arising from dealing with the locals. I was heartened that the locals were so kind and reassuring. When they noticed my hands shaking, they told me not to worry and take my time.

Two days ago I was physically exhausted and began to lose the use of my arms and legs; and, began slurring my speech. I took every chance I could get to sleep and I feel a little stronger today.

My speech is still slurred judging from the reactions of people I am speaking to. To me my speech sounds fine, but I am having a hard time making myself understood.

The CNS stimulants that my psychiatrist prescribed for this trip have been of immense help, allowing me to keep up with the other people in the group.

Cross fingers all will be well for the final two days.

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Comment by: Dave (Santa Barbara) Tue., Jan. 11, 2011 at 11:04 pm UTC
I recently lost my husband due to problems associated with HIV associated Dementia, I can tell you that it is an insidious disease which robs a person of their ability to communicate, and understand the world on terms of "normal society", with the help of a loving partner you can navigate through the pitfalls often encountered, but one thing to remember is that having a person with Dementia in your home is much like having a small child in your home, you have to be very careful about poisons and caustic items which we all have in our garages, etc. Please don't hesitate to let others know your condition especially those close to you, and learn to accept help, and try to understand that real friends only want to help, and while it's easiest to "lash out' at those closest to us, they will understand, and when you remember, please tell them how much they mean to you, and how much you really do love them. They are your lifeline.

Take care, and best luck in your travels, Dave
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Comment by: J. P. M. (San Francisco, CA) Mon., Jan. 10, 2011 at 8:06 pm UTC
I'm wishing you a wonderful adventure on your trip to Egypt. It has always been one of my dream locations to visit there & morroco. I look forward to reading how well you held up & about the trip.
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Life Is a River



ScotCharles was born in Mineral Wells, Texas. He has been HIV positive since September 1984, and received an AIDS diagnosis in April 2004. He graduated cum laude from Georgia State University in Atlanta, and got his MBA with honors at the University of Edinburgh in Scotland. He's also a certified public accountant and a member of the Honorable Order of Kentucky Colonels. He's been married to his partner, Jim, for 30 years. ScotCharles' hobbies are gardening and water color painting. He and Jim have a sable tabby cat named Pickles who runs the house. ScotCharles is a retiree and regular poster to's Bulletin Boards.

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