Today's topic is: "Working as a TBI survivor on TBI issues"

Our Guest is: Ms. Wendy Gimbel, Department of Health, TBI Waiver Program

Tonight's Topic Summary: 
I am trained as a rehabilitation counselor and have worked with TBI survivors for the last 6 years in several capacities. For the last 5 years, I have worked as the assistant to the Regional Resource Development Specialist for the Bronx and Queens, helping to administer the Department of Health's Medicaid waiver community re-entry program for TBI survivors and as an Independent Living Skills Trainer for TBI survivors living in the community.

[19:04:14] mod: Rail: What is your circumstance as a TBI survivor?
[19:08:23] Wendy: Thanks very much. I had 2 small strokes due to a tear in the aorta and open heart surgery to repair it in May. I don't have to say "I don't understand" anymore, and I think that is helpful to survivors and families
[19:11:09] mod: Rail: Do you feel you are NOW better equipped to help TBI survivors than before the stroke?
[19:12:53] Wendy: I think they can realize that I can really relate and are more comfortable sharing what is happening with them, which allows me to help them more effectively.
[19:14:28] mod: What residual problems do you have as a result of your TBI?
[19:15:23] Wendy: I have made a really good recovery, but still have coordination problems with my right leg and I get tired easily, especially after driving distances - I also get worn down emotionally quicker than I did before.  My fiancée and I recently moved and I pushed myself a great deal during the process - and I was not able to function under those circumstances asI would have prior to my illness... It was very difficult for me to accept these limitations and they are much less than those handled by many TBI survivors...
[19:17:25] mod: How did your TBI impact the lives of your family members/significant other(s)?
[19:18:32] Wendy: My family and fiancée thought I was an invalid for a long time and had to get used to me recovering my strength and abilities. I was critically ill at the time of the strokes, and I think that in itself affected them as well as the residuals I have from the TBI itself.
[19:20:56] mod: How do you cope with those things that may never be the same as before? How do your family/caregivers cope with these things?
[19:22:24] Wendy: Getting adjusted over time - "learning the hard way" as they say - by getting over tired and being unable to cope, and having no choice but to accept that my coping skills are non existent when I am tired - which happens much easier and earlier than before my illness..
[19:23:24] mod: Susan: Being on both sides of a TBI what do you see as a really big obstacle to overcome? Have your work goals changed with the personal view? Best wishes for a great recovery.
[19:25:28] Wendy: Obstacles to overcome are many - first is the limitations and fatigue factor - those are mostly whatI am left with - and coordination difficulties, especially when I'm tired. my work goals are in process of being re-evaluated; yes they may have to be a bit different from where they were - I was considering going to school - one class at a time but I think a full time job (and a demanding one at that) is about all I can do now since I want to do it well... I still have a very strong desire to help those with TBI get their lives back to the fullest possible extent - even more so now that I can understand more of what they go through....   I guess I should say "what we go through" not "what they go through"
[19:28:08] mod: Do you see yourself acting in similar ways to the individuals you work with who have had TBI?
[19:29:22] Wendy: At times definitely - when I don't want to accept limitations or let others help me out when I need it - and I feel guilty as they often do for the assistance or understanding I need that I didn't need before my illness.
[19:32:01] mod: Susan: Are you back to work yet and still continuing therapy?
[19:33:08] Wendy: I have been back to work since July 30, 12 weeks after my illness began - and was in therapy until the beginning of august.  I probably should have stayed out longer, and in fact wanted to go back before I did....
[19:35:22] mod: Rail: What therapies are you still engaged in that are directly work related? Are these coordinated by your employer or are you doing it on your own?
[19:35:55] Wendy: At this point, I am not participating in therapies - but my boss works with me around the fatigue factor..
[19:38:10] mod: Susan: As a trained rehab counselor have you been able to look at your own situation and see what you need to accomplish to get physically better?
[19:38:38] Wendy: Yes - by gradually building up physical activity, going to the gym, walking, etc - and understanding rehab counseling has been a big help, once enough time went by that I had the objectivity to use my knowledge and apply it to my situation.... Until I tried to push myself as I had before during our move, I didn't know that I wouldn't be able to do what I had done before at the same level as before.
[19:41:56] mod: Rail: With your perspective on TBI- what issues are you aware of that might help Caregivers- based on the caregivers you have interacted with after your TBI?
[19:43:01] Wendy: The main issues to get across to caregivers are that they are not alone, and what they are dealing with many others are dealing with too - and that time when you're dealing with TBI is not the same as regular time - everything is many times slower - especially recovery -
[19:44:09] mod: Rail: I hear your emphasis on your physical limitations that need rehab - but have you noted any cognitive issues that correlate with your TBI?
[19:44:29] Wendy: Some - mostly the intellectual and emotional fatigue I get along with the physical fatigue - also more so initially but still I get overwhelmed by too much stimuli at once -
[19:45:38] mod: Susan: I guess in your career you knew of the resources available to help a person with a TBI. Do you think more easy access is needed for others who don't know?
[19:46:31] Wendy: Most definitely, and I knew that before my illness - most people who have TBI or who have family members with TBI don't know the first thing about what they are dealing with - and neither do many doctors...
[19:47:25] mod: Susan: I realized that caregivers also include those with TBI as in your case. You have to become responsible for your own care and knowing the limits so you don't wear out.
[19:47:40] Wendy: I sure do - first for knowing what my limits are and second for listening to them and to those around me who tell me when I'm approaching them....
[19:51:14] mod: What is the most difficult aspect in adjusting after an ABI? Some people find it most difficult to accept the changes they have to deal with . Is this true?
[19:52:11] Wendy: The most difficult aspect is adjusting to the limitations that I've already discussed - and they obviously lead to changes in life - not being able to do as much, needing help where I didn't need it (or want it) before, etc
[19:53:38] mod: Rail: Have you identified needs of TBI survivors that you weren't aware of before your experience?
[19:54:45] Wendy: I became more aware of how difficult it is to ask for help - and for those around me to understand an "invisible" disability - I knew they were needs and issues faced by survivors but didn't really understand...
[19:55:54] mod: Susan: Good luck with recovery and your job. They cannot be easy hurdles as most people don't know how to react to the situation. Did friends seem to avoid the issues as happens in many cases?
[19:57:07] Wendy: The hurdles are not easy - and yes, I had friends who didn't see the issues or want to deal with them - but luckily I have many good friends who were very supportive and did understand and see the issues...thanks, and goodnight.
[19:58:21] mod: I see that our time is almost up. I would like to thank Wendy Gimbel for providing us with an excellent chat session and we hope that she may return in the future. Thank you all and good night!