Question:
I've read that CFS cognitive deficits are similar to thoseassociated with early Alzheimer's Disease or late-stage AIDSas well as brain injury. One PWC friend spends more time witha brain injury support group than those for CFS as so many symptoms and issues, at least in her case, are the same. Appreciate your letting us know about this, Cath! Very interesting.Might like to ask you more later as I'm to have neurocognitive testingat Johns Hopkins within the next few months. Would be interesting inknowing which specific tests had been recommended. Did you search CFS literature and share info with the neuropsychologist? Was either he oryour referring physician already knowledgeable of CFS brain issues? BTW were you at Mayo Clinic??? A speech pathologist/therapist did a few "brain organization" assessments for me this past Winter. I had some of the same deficits you report, e.g. (especially) holding two or morethings in mind at once. That one is really making life hard for me given the complicated issues and paperwork I have to keep up with. Am always floundering! It is incredibly frustrating to recognize that certain thingshave to be done but not be able to effectively (if at all!) plan and execute them.

Answer: I am 45 years old, married and the mother of 3. I sustained my severe brain injury as the result of a fall down a flight of concrete stairs over 7 years ago. I was in a coma for a couple of weeks, and in rehab for the next year. When my rehab ended and I was going crazy searching for answers and help, I and my family had the good fortune to connect with the Head Injury Association of Toronto (HIAT). We finally talked with others "who had been there". So, before I got involved with this list, I already knew that I learn more about living with brain injury from other injured persons and their families than from anyone who was paid for the job of working with me. Fortunately, I also learned that there are a number of good, caring professionals out there too, and that the best dialogue happens when we all listen to each other and respect each other's perspectives.

During the past 6 years, I have kept up my relationship with HIAT, but I also have helped develop an affiliated support group in the region north of Toronto which is where I live. I represent that group (The York Region Head Injury Support Group) on the Survivors' Advisory Council of the Ontario Brain Injury Association.

During this time, I have done my best to be able to return to work (as an educational assistant in Primary Special Ed). While I have been unsuccessful at that, I have to admit that my involvement with the brain injury associations and the support group has helped me to believe that I can still be worthwhile and productive on some level. I am very grateful for these opportunities I have had to learn and grow and maybe help someone else at the same time.

I am sorry that my answer was so much more than you asked for, but I have been meaning to introduce myself a little to the group. Your question was a push that I needed. Thank you for it!"

So, that was what I posted the other day. When it didn't appear in this group's correspondence, I started to wonder. When I checked to see where I had really sent it, the only address shown was a private one. I sent another message to this guy trying to find out who he was and where my message had gone. It turns out that I had sent this long epistle to some stranger, who was randomly looking for someone else, who had no interest in brain injury or support groups and probably now would be quite justified in thinking brain injured people might be nuts.