"I wish someone had told me..."
... Stroke Patients: Questions to Ask Your Doctor
by Gerald L Finch, PhD
Gerald and PaulinaWelcome to all stroke patients and their caregivers. Before I begin, I must clarify my credentials and motivation for writing this piece. I have a PhD in management with a concentration in psychology and I am a certified grief counselor. I am a professor of management and psychology at Universidad San Francisco de Quito, Ecuador. Although I have spent countless hours over the last three-and-a-half years studying ways to help stroke patients, I have not had any formal medical education.
My motivation for writing this is straightforward. A year after I married my wife, Paulina, she suffered a massive stroke (AVM haemorrhage). Paulina, a physician, was in near perfect health before the stroke. Being a physician, she had lots of physician friends and many offered help during the initial weeks after her stroke. She did not have a high chance of surviving the initial shock of the stroke. But she did survive and spent five months at the Mayo Clinic in Rochester, MN. Following this, she continued with daily physical, speech, and occupational therapy. She has realised many improvements during the last three-and-a-half years and I am certain that most of these improvements have been not only due to her excellent medical and therapy team but also because of the quality of questions that have been directed to her team. The aim of my web site is to highlight some of these questions in order to help you help your medical and therapy team to do a better job.
The quality of your questions can make all the difference in the world. In fact, quality questions can result in a new and better world for the stroke patient. I can’t overestimate the value of questions that are posed in a tactful and persistent manner.
Nursing care: I have had the good fortune to know many nurses who work with stroke patients. I remember one such nurse from the Mayo Clinic. She mentioned that the biggest mistake a nurse can make is to do too much, to try to help too much. Therefore, you should ask questions relating to the amount of help the nurses are giving. I realise that nurses are often working to a tight schedule and do not have time to watch a patient do something on his or her own. For example, it is faster to feed a patient than to watch the patient eat. But this can be applied to many areas, including hygiene issues. Your questions need to address how we can help the patient. Some of the answers might mean that the medical professionals will have to accept being less efficient. Hard to do in some hospitals but the consequences of being too efficient can be negative over the long term.
Swallowing: Some stroke patients suffer the risk of food entering the lungs (aspiration pneumonitis) and tests such as video swallow tests can detect when this risk is high. Often, these tests are useful to help decide the kinds of food and liquids that can be consumed via mouth versus PEG. Many times, professionals recommended that my wife consume only foods with the consistency of cream of wheat and mashed potatoes via mouth and thin liquids such as water via PEG. Your questions should be directed at the position of the patient’s head during the video swallow test. Does it make a difference during the test if the head is bent (chin close to the chest) while swallowing? If a patient can safely drink thin liquids with the head bent, should those liquids continue to be given only via PEG? The other critical question relates to drinking water when aspiration is possible. Ask if the patient (with a very clean mouth) should drink water as a way of practicing swallowing. Ask what the risk is of lung complications, including pneumonia, if clean water should enter the lungs. Some physicians may answer that the benefit of 'swallowing water practice' outweighs the risk of lung complications.
If swallowing difficulties are related to motor control problems, including spasticity, ask if some medicines could help to relax the various body components involved with swallowing to reduce the chances of aspiration. Specifically ask about baclofen for spasticity. Motor control problems complicate swallowing, so ask if certain medicines such as Prozac and L-Dopa could improve motor control functions.
Some stroke rehabilitation centres use occupational therapists for swallowing therapy. Ask your physician if he supports this approach, or if demands should be made for a speech pathologist/therapist.
Finally, ask your physician if you should add a dietician with experience of stroke patients to your team. Most dieticians do not have such experience and have difficulty suggesting appropriate diets.
Spasticity: This is certainly a main obstacle for stroke patients. You need to ask if the physical therapists available are fully qualified to help stroke patients. Neurorehabilitation is very different from standard physical therapy, yet many standard physical therapists will not disqualify themselves from offering services to the stroke patient. Ask all the necessary questions to ensure that your therapists are fully qualified.
Some hospitals/stroke rehabilitation centers rotate physical therapist every 2-3 weeks. Some patients have many and complex issues and it takes a long time for a therapist to learn the patient well enough to help him or her. Ask your physician if she supports this practice and if she does not, advocate for more consistency in physical therapy, or move the patient to another facility where such consistency is available. (This was an obstacle in my wife's rehabilitation.)
Some physical therapists do not use splints for arms, hands and feet. Indeed, these can be essential as part of the rehabilitation process. Ask enough questions about the use of splints until you have clear, logical answers.
Most neurologists and rehabilitation physicians I have met do not know how to administer baclofen. Many physicians want to stop baclofen if low doses such as 20 or 30mg are not successful in reducing spasticity. Some physicians want to stop increasing baclofen doses once the patient becomes weak or drowsy. You should ask what dosage is likely to reduce spasticity and how the patient could try to get to that dosage. For example, if a patient appears to have reached the maximum dosage because of weakness, ask if dosage should be decreased for a few weeks and slowly increased again later. Each patient is different: my wife did not get relief from spasticity until she received 60mg a day and it took over six months for her body to accept this amount, with frequent changes in dosage.
BOTOX® (onabotulinumtoxinA) might be another useful tool in rehabilitation. I have found that many physicians are willing to inject BOTOX® to temporarily relieve spasticity but you must ask enough questions to determine which physician is most qualified to do so. My wife has had the same amount of BOTOX® injected into the same muscles by three different physicians. Two physicians obtained no results at all but one achieved dramatically positive results. It is important to find a truly qualified physician. Other important questions must be asked to determine if the physical therapist and the physician injecting the BOTOX® are willing to work together. The physical therapist often knows where the BOTOX® should be applied and is the best person to explain this to the physician. Also, the physical therapist knows the right therapy to apply after BOTOX® treatment.
Finally, sometimes all the right medicines and therapies are insufficient and surgery should be investigated. My wife had such a problem in her right leg. Normal orthopaedic doctors and neurologists did not have a clue as to what to do. But a neuro-orthopaedic physician was able to reverse a muscle and had her leg moving at least 200 percent better within 24 hours, without even one night in the hospital.
Depression: If the patient is taking an antidepressant and having a negative reaction, or is not obtaining substantial relief from depression, ask your doctor what other kinds of antidepressants might help. There are several good options available, depending on the patient’s condition. (Some very highly credentialed neurologists and rehabilitation physicians gave up on antidepressants for my wife after she had a negative reaction to the first one. This mistake caused years of needless depression.)
Problems voiding: Ask your physician if any of the medicines could be causing this problem, including antidepressants. Ask if some kinds of yoga or other exercise might be helpful and if L-Dopa and/or Prozac could improve motor control and thereby improve the ability to void.
Speech: Two very well-credentialed speech pathologists from a leading hospital said that because my wife was not speaking six months after her stroke, she would probably never regain her speech. Ask your physician to what degree spasticity and lack of motor control are hindering speech. Ask about combinations of medicines such as baclofen, Prozac and L-Dopa to reduce some of these obstacles.
Hyperbaric Oxygen Therapy: If you decide to try this treatment, ask your physician to measure brain activity in the part of the brain surrounding the damaged area both before and after months of treatment. My wife achieved a small increase in brain activity, not in the damaged area of the brain per se but in surrounding tissue.
Stem cell treatment: In the last couple years, a neurologist and a neurosurgeon recommended adult stem cell treatment for my wife. This brings up many questions to ask physicians, including finding out what keeps the stem cells in the damaged area of the brain long enough to begin networking, thereby forming new brain tissue. Some hospitals outside the US give stem cell therapy within six months of a stroke and report that patients improve. Ask how much of this improvement is due to simultaneous recovery. In other words, some patients improve the most in the first six months after a stroke, with or without stem cell treatment.
Asking lots of good questions is one secret to improving rehabilitation for stroke patients. You should be tactful but persistent in your questioning. Your questions will help everyone to find better solutions.
... I wish someone had told me… more about my daughter’s sickle cell
by Jackie Grey
Jade, Jackie and DonshellIt all started when my daughter Jade turned ten months old and she was diagnosed with sickle cell. She was born with it but I never found out until she got this high temperature that wouldn’t go despite all the antibiotics she could get. I took her to the hospital and they said that her blood count was extremely low. The doctors ran some tests for different diseases like heart, cancer, sickle cell and more. I couldn’t choose one because they are all bad. I remember saying to myself, ”I would rather sickle cell” but when it was confirmed I broke down and even more so when I learned about it.
I have been through tough times. She is nine years old now and is learning about her own illness, which is a bonus to her keeping well. I have enquired a lot myself about the illness and have learned a lot about how to take care of her better. The disease is a genetic blood disease, so it would be a miracle from God for her to heal.
I have been talking to a lot of people about stem cell treatment. If I had known more about this it would have had a big impact on her condition today. I’m currently trying to learn more about stem cell therapy but for now, I will continue my vital parental instinct practice.
... it's OK to ask a zillion questions, however silly they seem, when you see the consultant
by Jenni Harrison
... when a doctor says that a disease is "treatable", this does not necessarily mean it is curable. If in doubt, ask for clarification.
... it's OK to seek a second opinion. Irish medicine is not as advanced or liberal as some of our international counterparts. Seek a second opinion before it's too late.
... it's OK to ask for and accept help. Even if you think you are wonder woman, you cannot be everything to everyone anymore. If a friend wants to cook for your family or sit with your loved one, let them. This is not a slight on your ability. If you don't accept help when it is offered, it may not be offered again.
... if anyone involved with the care of your loved one is not up to scratch, don't be afraid to ask for a replacement. Unfortunately, not everyone in the health care industry is there because they love what they do. There are some awful so-called professionals and you must ensure that your loved one is treated with dignity and respect at all times. If in doubt, sit in with the nurse/carer, etc. to make sure that things are done the way you want. For example, patients should not be washed with harsh toilet tissue instead of their own facecloth; patients should not be left unattended in a bath if they are unable to hoist themselves out, etc.
... you should talk to your loved one before it's too late. We all go into 'doing' mode when something goes wrong and often we forget to tell the patient what's going on. But more than that ... if the person is still compos mentis, you may want to talk to them about their care.
... that we were never alone
by Rowena Arkesteijn
Dean got a date six months after his initial surgery, which had led to the loss of 75% of his small intestine and half his colon. Both the Gastric and Surgical teams felt he was ready to have the procedure to reconnect his intestines. It was clear that they had healed and were adapting and recovering from that fateful assault before his second birthday. This would be the final step to pushing his system to make the last leap to full recovery. He no longer needed to be fed intravenously, something that took us six weeks to be trained to do under sterile conditions. I longed for the nights I wouldn't lie awake, petrified something would go wrong or that I had made a mistake in the hooking up process that might kill him. I would tremble with terror at the prospect that every time I held 'Freddy' in my surgically gloved hands - the name given to the central line in Dean's chest that lead straight to his heart - I wouldn't also push some fatal bug along with the saline through his system. It gave a whole new dimension to the meaning of 'lifeline'.
As the date drew closer, I became almost paralysed with fear. Dean had to go to theatre again and all I could remember was how all the other times he'd been there we had been told he's too weak to survive as we signed the consent forms. We even signed a consent form once which read 'procedure to open abdomen...' because they didn't know what they would have to do once that happened. It was obvious I hadn't recovered from the trauma we'd been through for those first three months and it was manifesting itself now because in the recovery over the past few months we'd grown comfortable and this time, I had the time to fully take it all in, to process.
A great person once told me our greatest teachers are often our children and so many times during all of this, I would look at Dean in awe. The unbelievable ordeal he was going through and he never complained, moaned or gave up. He never cried, no matter how many times we jabbed him in the leg with his anticoagulant, or when the antibiotics he was being administered burned his little feet through the IV, or even when we fed the gastric line down his nose and into his tummy. He just got on with it. Survival. How he watched Nemo over and over and got hours of fun from a helium Thomas the Tank Engine balloon, or how he'd blow kisses to the Gastric consultant while she was in the middle of a serious dialogue, only to stop her in her tracks with his lack of inhibition. His smile would light up any room.
I can't remember exactly at what point this happened but maybe a few days before his surgery, Dean, then aged two-and-a-half, told me he had a ghost. His simple little words: "Mammy, look. My ghost is here." That was pretty much the most description I could get out of him but he repeated it to me constantly. It became even more profound once we admitted him and he only spoke to me about it; it didn't matter if anybody else was in the room. Dean would smile, point, and be completely content. It was beautiful to see him so reassured in this mystical character's company, and there was no explaining it.
I sat waiting in silence in his room as the hours passed for news of him. I never considered the outcome of the surgery; I just waited there for him to be safely returned to me and I drew comfort from knowing he had a keeper with him.
Finally, the Chief of Surgery burst into the room, full of excitement for me that everything was a success. He spoke in amazement at how he felt Dean's intestines had grown so much, even questioning himself if he'd maybe been mistaken by his initial measurements during the first surgery. All was well and Dean was safe - the only things I needed to hear, needed to know, to allow me to breathe again. It was over.
Dean's companion accompanied him for the following few days of his recovery and his passage back home safely with us and then disappeared (he did return later but that's another story). Suddenly, a thought came over me that perhaps this invisible being wasn't only there to keep Dean safe but perhaps, just perhaps, he was also there to comfort me, and that was OK too.
... the signs that death is imminent
by Rosalind Matthews
The anguish of teetering - will he/won't he recover - was worse than the final acceptance that he was dying.
It all began years ago when my husband complained of thirst and tiredness. I looked up my 'home doctor' book and rightly diagnosed diabetes. Then, two years after that, a junior doctor pointed out to his superior that Willie's skin was tanned, despite its being winter. A biopsy confirmed that he had haemochromotosis, or too much iron stored in the liver. It had caused him to develop what the medics then termed 'bronze diabetes'.
Ten years was the lifespan predicted for sufferers of this liver disorder. The medics never told us that; we learned it ourselves from another source. Time passed and he and I got used to the routines of blood-sugar tests, insulin injections and phlebotomies to lower his iron level, there being no cure for - just control of -  this genetic disease.
We read somewhere that cancer of the liver would eventually develop. We never spoke of that unthinkable. Time passed, then one night in bed his tummy felt very hot but I knew he wasn't feverish. We went to hospital the next day and he was admitted. The staff were shocked at how swollen his legs were. I hadn't thought that serious. However, prior to that hospitalisation, I recall going for a walk with him. He walked far quicker than usual, almost as if he had no control over his legs.
He discharged himself after four days in hospital. It was Christmas week. He told me to come with him to the bank, I presumed because he didn't feel very well. Once there, he put his accounts into both our names. Why didn't I recognise the significance of that?
Once the festive season was over, he decided to go to the diabetic clinic. I didn't notice that he had packed a small shoulder bag but he had said to my daughter, "Your mother can't cope anymore." In the bag were toiletries and a pair of pyjamas. A few days later, he died.
... different speech therapists have very different approaches to aphasia
by Aviva Cohen
In the beginning, my husband, Steve, made slow progress but he did improve. He first learned the difference between a cat and a hammer. Then he learned how to count up to five and to repeat a word. His ability to understand increased too and he could follow a simple conversation. His speech therapists became his lifeline and our friends.
Then Steve was moved to a different speech therapist. Every session seemed to start with, "You know that he can't make progress, so we should send him to a day care centre." After months of frustration, I managed to change therapists. He then gained a couple of new words, including my name, and we experienced renewed hope. His therapist's constant search for new exercises and her attitude of encouragement were priceless.
Another wonderful therapist led him into a training programme for student speech therapists. Two young girls came over every week and brought adult laughter back into our home. Steve was a teacher once more and, as a result of their visits, he allowed friends and family to call in again.
My advice is this: if your therapist doesn't provide the right encouragement, don't be afraid to discuss it with her or him. If you are not satisfied, find another therapist.
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