What steps need to be taken for appropriate stroke rehabilitation?
My 30 year old sister had bi-lateral thalamic stroke about 2 months ago due to a rare syndrome caused by the Lupus she's had for 8 years. The syndrome is Antiphospholipid syndrome. She currently has a Tracheostomy, a feeding tube and a catheter. She doesn't move much, but does have some movement on her left side and does not speak. My question would be - what steps need to be taken for appropriate rehabilitation? We feel that after her discharge from the hospital, we were pretty much "left on our own" to try and find her a good rehabilitation facility. She has been home for 1 month, and it's been hard to say the least. We try to make her as comfortable as possible, but find it very challenging to do so without her being able to communicate or move (though she moves her left side a lot). Any help or suggestions would be greatly appreciated.
Very sorry to hear about this situation.
I think the best thing to do is make an appointment as soon as possible with her Internist (Primary Care Physician). Although the Internist will likely not be able to help very much for these specific issues, he/she can refer your sister to a Physical Medicine and Rehabilitation Doctor (Physiatrist) urgently, who could hopefully come up with a "plan of attack" for her rehabilitation. This would likely involve some combination of physical therapy, occupational therapy, and speech therapy, done either at her home or at a facility. Those therapists are essential for her long term improvement.
In addition, if by "catheter" you mean "foley catheter", this needs to come out very soon. I would also ask for a referral to a Urologist at the earliest convenience, so that her foley catheter can be taken out and diapers used. Foley catheters are not a good long term option, leading to innumerable urinary tract infections and weakening of the urethra and bladder. I would ask your physician how that can be removed ASAP.
Adult Day Care may be an option for your sister. Most medical adult day cares offer therapeutic programming for stroke patients as well as outpatient rehabilitation.
You have hit the black hole of stroke rehabilitation knowledge. Nobody will tell you anything because they don't know. Not being told anything about the stroke or how to rehab is extremely common. Don't bother going to the stroke associations they are not for survivors. If your doctors were good they would show you a 3d image of your scan mapped onto a brain and describe the penumbra damage and what functions were damaged. Then they would describe the dead brain areas and the functions those covered. You can try asking your doctors but they will use the Sargeant Schultz reply, ' I know nuthin'. The problem is that everyone looks at the symptom of the deficits rather than the cause, which is the damage to the brain. You probably need to train your doctors in these concepts. Best place to get answers would be to read Peter Levines blog - http://recoverfromstroke.blogspot.com/ and read his book, Stronger After Stroke. join a number of stroke forums strokeboard.net dailyStrength, MedHelp, Healthboards, 3 different ones on ning.com What you will need to understand is neuroplasticity, that is the basis of all recovery. Sorry about being negative but the medical community is still 2400 years in the past when Hippocratic dictum that "˜It is impossible to cure a severe attack of apoplexy and difficult to cure a mild one' Good luck. Dean
I would like to make a non medical suggestion. I have been working for a compnay named Home Instead. We go to homes of Seniors and people needing company. I have seen such a change in people. We are just companions. We laugh, watch TV, read books or play games. The family has time off from the patient. We do no medical advise or therapy just companionship. Our patients look forward to our visits and I have seen such changes in them. Just an idea...
In addition, I recommend that you read the books My Stroke of Insight, by Jill Bolte Taylor and Living With Stroke by Senelick, Rossi and Dougherty.
Also, think about how much cognitive impairment your sister has. Is it just her physical abilities that have changed, or has she got mental difficulties too? If her mind is not impacted, her emotions might be - she might react in funny ways or be easily frustrated. Be patient with her - it's not her fault and there's nothing she can do to change it.
Good luck to you and your sister!
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