Look for Help!

Look for Help!

Posted by Syuan on May 22, 2018 6:45 pm

My wife and I are recently retired. Last year we took our first trip to Asia to celebrate the retirement. Unfortunately she slipped and fell in the hospital inpatient ward where she was admitted for emergency condition in Taiwan. This fall causes her spinal cord injury from C3 through C6 and slightly injured in T1. Hospital neurosurgeon team doctors told us that they couldn't do much about it. We had to hire air ambulance to fly there to bring her back home. Thank God! at least we arrived home. 
Doctors here did the spine surgery and followed by in-patient acute rehabilitation and home-care therapies. Initially doctors thought she had complete SCI. However, her condition has improved and was then advised she is incomplete SCI. Presently she is in outpatient rehab. Because we are new to SCI environment, we confront a number of challenges which were unknown to us before. By chance, I have the opportunity to find Dana-Christopher Reeve Foundation as the place for valuable information and peer support .We have several questions listed below and hopefully someone can share the thought, experience, knowledge and others with us.
  1. Bowel Movement becomes one of the top priorities. She has taken Lactose, Amitaza, probiotics, prunes juice, kefir, laxative pill, Metamucil, magnesium citramate, suppository, digital simulation, etc. as recommended or suggested by the medical staff. In the beginning, it appears to be effective. However, gradually it turns out nothing works. Sometimes she has no bowels for three or more days. Her abdominal area is firm and hard. I know something inside the intestine, but it won't come out. I don't know how to help her nor the doctor when I called. He responded just keep doing what I am doing. This answer doesn't solve the problem,
  2. She has supra-pubic catheter. UTI is common to SCI patients. However, blood always blends in the urine. Is this why she has UTI?
  3. She always complains about tingly and numb in the legs in the beginning of injury. Recently this happens to her hands and whole body as her motion develops to be in more body parts. She told me it is extremely uncomfortable. Will the tingly condition cease/ reduce as her condition improves, or shall she expect this for the rest of her life?
  4. Spasticity and tremor are another uncomfortable feeling. In the beginning, she only felt slight "electrical shooting" as she described. Recently she experiences more of that reaction even if she sleeps especially when she makes a slight moves. She had taken DiazePam previously and just recently switched to Baclofen. Such change, however, does not improve her spasms problem. Will the spasticity/ tremor condition imrpove if she can gain back motion nerves?
  5. She always complains her body is hot even if I need to wear heavy coat. When she sleeps, she asks not to cover her with heavy blanket or comforter because she is hot. However, it is actually very cold .it is interesting that her muscle may respond with increase in spasticity when it is cold and not having enough coverage on her body. We hope this condition may improve also!
  6. She is very depressed and always mentioned about the neurosurgeon's advice to be in the hospice for a few days and done. She blamed me to convince her change her mind, and this makes her have to suffer from pain and discomfort. I have told her what was in the past should not be looking back. We should work together to move forward. She requires complete living assistance. I have accepted this challenge but sad to say not for her. I understand how difficult she needs to strive for day-to-day living. I really want to replace her illness although it is impossible.
I apologize for the first-time online and complain "too much". I know in this community we have many of you having the same situation as we have. Hopefully we can exchange information in the future and greatly appreciate for your valuable comments and thoughts.


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Re: Look for Help!

Posted by prc_donnal on Jul 3, 2018 4:34 pm

Welcome here!

My name is Donna and I'm an Information Specialist with the Paralysis Resource Center.

If you send me your email address, I will send you our new-injury package of information, which will
help you with your questions and concerns.

You can contact me at dlowich@ChristopherReeve.org or (800) 539-7309 x5911.

Sincerely,

Donna

 

Re: Look for Help!

Posted by Syuan on Jan 5, 2019 7:19 pm

Hi Donna,

Thanks for the reply. My email is stevenjyuan@gmail.com. I appreciate for the help. Additionally, my wife, Sally, encounters a problem for doctor visit. As you know, her disability is recent, and we try to learn how to cope with the new life. She has some irregular tissues growing around the rectum area. This requires further examination by the specialist. We made the appointment with the doctor and request for transferring from the wheelchair to the examining table. I was so unexpectedly to hear the medical office staff replying that they could not help transfer. The patient needs to be able to move and lay on the table by herself. or the family needs to do that for her. This response is not practical and impossible. As a quadriplegia patient, she must be transferred by a lift or special equipment or trained personnel. It appears that ADA is meaningless and insufficient to assist people with disability for dealing with life threatened matter. We reside in San Francisco and it is a shame that nothing can be done. Donna, as a information specialist, you may be resourceful. Could you please provide us some idea if you know?

Regards,

Steven

 

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