I have a couple of questions for you, but please don't feel obligated to answer if you prefer to not do so. How long after your injury did you return to your practice and is your office in your home? Also, do you use voice recognition software for your writing and, if so, which product? These may seem to be random questions (they are), however, their answers provide information that is helpful as I am trying to put the puzzle pieces of my life together. This is an odd place to be at my age and I can use all of the input I am able to obtain to figure out where I'm going. I feel like kind of an outlier because of my age at injury (56) and being female. What is important to me now is entirely different than if I had been injured at an earlier age.
Dr. Dan’s Response:
be happy to answer your questions. I got out of rehab in August 1980. The following month I saw a patient or two a week in my house. I think that was okay despite the fact that I felt so fragile physically and emotionally. It was about six months later that I went back to my full-time job running a drug treatment clinic in Philadelphia. But because my health was so unstable, I didn't want to jeopardize my disability insurance so I volunteered for about a year before I resumed full-time.
I use Dragon dictate naturally speaking. It's relatively inexpensive (about $200) and works really well. It does have some conflicts with AOL and Microsoft outlook, but not anything major.
Daniel Gottlieb Ph.D.
Comments from ratherbflyin:
Thank you for answering my questions. I am envious of your ability to resume your practice. Mine has been stripped away and I'm struggling to figure out "what now".
I have been totally involved with going to doctor’s appointments, physical therapy, occupational therapy, and pool therapy since my accident in December of 2005. Land PT has ended and pool therapy is winding down. Next phase is a self-directed combination of home based and pool exercises to maintain functional gains.
All of this is to explain why I’m in a questioning mode. I’m filing away answers to random questions or shared experiences as I attempt to extrapolate information that might help with construction of a new and very different life. The answers from Dr. Dan are a few more pieces of the puzzle.
I just discovered that my new laptop computer has a Microsoft voice recognition and computer function command software program loaded in the hard drive that is one of the unadvertised accessibility features. It is wireless and bluetooth compatible. Computer information, as follows:
Dell – 17 in
Intel Pentium Dual CPU T3400 @ 2.16 GHz
64 bit OS
Windows Vista Home Premium
Service Pack 1
Are there others out there searching for answers to questions? Ask Dr. Dan! His answers and your comments might be just the information needed by a reader of this forum.
Another question for anyone out there. Have you experienced a change of friends/friendships over time since your injury or illness? I'm noticing changes here and am trying to pay attention to whether I'm isolating myself because I am feeling really depressed lately and don't care to be around others more than I have to (and who wants to be around someone who is down anyway?) or if they are just going through the normal changes over time. It seems that my closest friends are moving on with their lives and I'm an outside observer.
BTW - Trish & Dr. Dan, hope your webchat tomorrow goes well and speaks to those out there who may feel so very alone with the challenges and rewards of being in a caregiving role.
All of the above. Sure I lost friends after the accident. People who didn't know what to do more what to say or how to tolerate their own discomfort. And there were friends I stopped calling also for similar reasons. My buddies who I played softball with, even a couple we vacation with -- I just didn't know how to relate to them anymore.
But when I became depressed and started to isolate, people couldn't find their way in. Fortunately, a lot of my friends are therapists and knew what was going on. My dear friend who was my mentor and teacher (and mother figure) finally said to me one day: "Dan, either you get in to treatment for your depression or I will drag you there!" Frankly, it was an act of love and felt like one.
I've made many many new friends. People I love dearly and who love me. I don't know if that would have happened anyway or if it was accident related. But I'll tell you this, I feel very close to many people. And I also feel like an outside observer like I did when I was depressed. But this time, being an outside observer is really not sad at all. Its much motr interesting because-of what I learned about people
Questions for this week for Dr. Dan and others:
As I've mentioned before, I have so many questions - new ones everyday - and am looking for answers from anyone with even partially similar circumstance. I'm a 59 year old female quad with C5-7 injury and an additional brachial plexsus injury (seriously limits function of left hand) three and a half years post injury. Anyone with answers you would share, please respond.
1) How much caregiving do you receive daily, from whom, and for what issues?
2) Do you drive and, if so, alone and how often?
3) Do you travel alone or with a caregiver?
4) If you travel, how do you manage your bowel program while you are gone? Do you have help with this or do your own program?
5) Do you have a regular routine daily and if you travel, how does your routine vary or how do you keep your routine the same regardless of where you are?
6) How much, how often, and what kind of exercise or stretching do you do?
7) Do you manage your own medications - set-up, ordering, administration?
8) Do you have help with housekeeping, laundry, repairs, meal preparation, shopping, pet care, and, if so, how often?
9) Are decisions regarding your care, living situation, major purchases made by yourself, someone else, or with consultation and help from others?
Thank you in advance for your responses!
My comments from a C3-C4 complete perspective and also a couple of new questions:
1) How much caregiving do you receive daily, from whom, and for what issues?
Approximately 50 hrs a week. From agency LPNs or RNs. For all issues.
2) Do you drive and, if so, alone and how often? NO
3) Do you travel alone or with a caregiver? We have not traveled since the accident. Mostly because I am too afraid to take care of my husband and kids away from home. I envision too many things going wrong. If we ever did, I would take a caregiver.
4) If you travel, how do you manage your bowel program while you are gone? Do you have help with this ordo your own program?N/A
5) Do you have a regular routine daily and if you travel, how does your routine vary or how do you keep your routine the same regardless of where you are? We have a very strict daily routine out of necessity. That is what happens when you have hired caregivers scheduled for only certain hours. If they are scheduled to come at a certain time for the bp then you do the bp then whether you want to or not.
6) How much, how often,and what kind of exercise or stretching do you do? ROM daily and standing frame for about an hour at a time whenever we can fit it in.
7) Do you manage your own medications - set-up,ordering, administration? Nurses and I set them up and administer. My husband orders his own stuff either through the local pharmacy or his mail order Rx plan. I pick them up for him.
8) Do you have help with housekeeping, laundry, repairs, meal preparation, shopping, pet care,and, if so, how often? I am the “hired” help for all of that with the exception that we have housekeeping every 2 weeks.
9) Are decisions regarding your care, living situation, major purchases made by yourself, someone else, or with consultation and help from others? Generally, we make these kinds of decision together. My husband also suffered a TBI and has some short term memory loss and lacks motivation some of the time. I kind of give him suggestions and put it on his computer to do list and often he will take care of stuff from that.
More questions for Dr. Dan or anyone else.
Thanks, Trish. I'm treading water a bit trying to find out what is "normal" for others in my same situation. Seems like a never ending process and while I have so much to be thankful for, the blessings don't really change the searching. I doubt that there is any norm - that each individual comes to their own definition eventually.
Wish I could join the discussion tomorrow, but will be on the road again trying to have the plan "B" reversed or changed to plan "C" conversions for my SUV. I spent four days last week out of town attempting to get the conversion I need to drive from my chair. I have about worn this chair out using it as my primary means of transportation for more than 3 years. As a result, my wheelchair's precise turning capability does not work well enough with the driver side automatic lockdown.
Last week was a major challenge and most of the questions asked were as a result of some portion of the trip or the quiet thinking time during the drive there and back. I traveled alone for the first time since my accident - a 3 1/2 hour drive into parts of this state that I had never visited. I'm looking at the experience as a whole to see what I learned from the trip. Tomorrow will only be a day trip to the same mobility shop and back home. The weather will be good - kind of cool (60s) and sunny - a welcome break from the rain, storms, and tornadoes that will return on Wednesday.
My daughter slept through a tornado that touched down less than a mile from our home while I was gone last week. We also have more than 20 cases of swine flu in our tiny community that caused school and public event closings just before I left on last week's adventure. Maybe the homefront will be quiet this time.
I also wonder many times what is the norm or is this normal. I have a couple of questions regarding this that I really want to pose to Dan, but I haven’t yet. I think I am too afraid he will say “Good God woman, that isn’t normal.” So I’ll keep quiet for now. I guess we all just want to be normal.
I love you guys but after reading all of your questions, in addition to quadriplegia I think my head just exploded!
But I have a nurse (LPN) at home so she can help me clean up the exploded head and put it back together. She also does my medication, but I check it carefully with each dose. I am in a very small minority as far as caregiving is concerned. My accident took place in an automobile many years ago when there was something called no-fault insurance. They have legal responsibility to take care of all medical and rehabilitative expenses. So my car insurance pays for 24-hour nursing, Van modifications and wheelchairs. In my case, I need 24 hours nursing because I live alone. So I have a housekeeper comment once a week, but my nurse cleans up during the week and takes care of many meals. But given my age, my way of socializing is usually at restaurants so I am now for many meals. And yes I drive independently. Recently, I am not doing any more long-distance driving I have my nurse do that but I do drive in the area, to local lecturers and to the shore which is about an hour away.
But what I really want to talk about is travel. My first trip was to my sister's apartment in Florida about five or six years after my accident. Took a nurse and after months of obsessive planning got on an airplane. My wheelchair went into baggage and (for once) was brought back to me in tact when I arrived at Florida. Also waiting for me was a rental van I had arranged. Frankly, the trip was difficult and stressful but I was thrilled that I did it and it opened the door for subsequent travel -- Grand Canyon, California, Hawaii twice, Israel twice and Alaska (no, I did not see Russia).
And now -- the big one. I will announce more formally in a couple of weeks that I have been invited to receive the "fervent love of life award" in Taiwan. So after months of arrangements, I will be leaving on May 30 two fly to Taipei by way of Anchorage. I will be in the airplane approximately 20 hours going in 17 hours coming back. I'm pretty scared and pretty excited. Well, very much both. I will be taking a nurse and my hosts have arranged for me to have an adjoining room at the hotel. I don't think I'll have to worry about the bowel program because this trip has already scared the s**t out of me!
I plan to start a new thread right before I leave so that I can post there from Taiwan.
And Trish, whatever you are doing, it's probably not normal. So now you don't have to worry about that anymore and you can just say what you need to say.
and one other thing --
And yes, spinal cord injury did contribute to the breakup of my marriage. But it was just a contributing factor. My wife had cancer when she was 24 years old and our daughters were only one and two years old. She lapsed into a deep depression and I became a workaholic. Then she developed symptoms of MS five years later and six months after that I had my accident.
If a marriage is solid, and there is some history there, it can survive and even thrive. Sadly, marriages in which the man has the spinal cord injury are more likely to stay together that if it happens to a woman. Ladies, no need to comment on that it's pretty obvious you are the superior gender.
Ratherbeflying~ I think we each set our own new "normal" and as we age our normal changes. What I needed 19 years ago and what I need today are dramatically different. It takes patience, a willingness to explore, investigate and be flexible in your needs. I have found that thinking outside of the box works best.
Keep asking, it does eventually feel less overwhelming and all consuming.
For those of you who haven't read Tuesdays with Morrie, it's about a man who is dying of ALS and being interviewed weekly by his protégé, Mitch. At one point in the interview Morrie blurts out anger and indignation: "my God, one day someone will have to wipe my ass!"
My immediate reaction was "you'll get over it". I remember having that same sense of outrage and indignation back in the beginning. Now, it's just my life. No big thing, really. And that's not because I am particularly resilient, that's because that's what we do. Those of us who live, adapt. The ego gets in the way sometimes and becomes indignant and angry. But after while if the ego can get quiet, we adapt. We might not find joy, but we stop clenching our fists at the gods or the institutions or whatever.When I was commuting to work, I would leave a half-hour early so I could sit in front of my favorite lake and meditate. Like most lakes, it was beautiful everything about it spoke of peace. One day, someone threw a tire in the middle of the lake and half of it was sticking out. I was furious. For weeks every time I stopped at the lake, I focused on the tire and became angry again. And after while, my focus widened and I began to see the whole lake again. One day, a year later, I noticed that the tire was now covered in moss. I am not a botanist, but it looks like the lake was doing the same thing I was doing, making the tire part of the picture rather than fighting against it.Nature is so much smarter than we are. I think it's about the ego thing.
Do you think it is appropriate to ever involve your children in your SCI care? If so at what age and to what extent?
what a wonderful response he received below it would be difficult to add any more to that. But I will share a few overall observations about SCI or any disability and the family.
Any trauma to any individual is a trauma to a family. We all suffer and, by instinct, we all try to protect one another from their suffering. But the result is that everyone feels more alienated from each other. Children should neither be protected from the impact of SCI nor should they take on unreasonable responsibilities. Keep in mind, everyone in the system needs to have enough space and safety to express whatever feelings they want to.
My daughter is where five and six years old when I had my accident. The summer after I got out of the hospital my wife was driving us all to a swimming pool when I had an accident and we all had to go home. My daughter said "daddy, I hate you for breaking your neck and ruining my life." I cried, but I didn't say anything other than I was sorry that this happened to all of us.
My children are now in their 30s and they have gone through everything with me. That said, they have never had to change catheter or help me with a bowel routine. Thank goodness. But if they had to, they would and all of us would be embarrassed and angry and sad that we all had to endure that. And all of us would get over it in a very short time.
What traumatizes our children is not the accident, but the way we deal with it. Sure, no matter what it adds a burden to their lives -- something we wish would never happen. But having a parent with a disability is not all bad news. These children tend to be more compassionate, responsible and more involved in the larger world around them.
Hope that helps!