Submissions from Readers

Cannot release weak hand 3yrs after stroke. Help.

by Alberta Carter
(Chester south carolina USA)

Question I had a stroke 3yrs ago and I still can't release my my left /weak hand . Is there any hope that I will be able to operate my hand functionally to take care of myself and my 3yr old daughter?? Therapists have told me more than likely I won't be able to and that I will always require assistance.


2. I also walk with a non quad cane and I want to know if its possible for me to regain my balance well enough to walk without assistance/my cane?
★By the way I'm only 25.......I need answers and feel like my therapists are very negative and discouraging. :-(

Answer I am sorry that you feel discouraged by your therapists. From a therapist's perspective, I think it's important to not overpromise or mislead patients. I encourage patients to learn adaptive techniques to perform their daily living skills while at the same time encouraging them to work on regaining movement and arm function. I cannot predict if someone will regain movement, but I do know that most patients do not get enough exercise or activity with their weak arm to allow for neuroplastic changes of the brain.

I do not know if your hand is contracted or if you are just unable to actively open it on its own. If your hand has high tone and is contracted then that would need to be addressed with a physician first before trying to gain movement. You can visit my spasticity page for ways to deal with tone if that is a problem.

If you can passively open the hand (meaning you can take the other hand and stretch the weak hand open) then you could try doing exercises daily (multiple times per day). The progression I take my patients through when rehabilitating the hand include:

1) Learning to weight bear through the hand to decrease any tone - this can be done on a mat, table, or on a ball.

2) Passive range of motion using the strong hand to stretch the weak hand open/close.

3) Trying to keep the hand on a surface without falling off. Once you have relaxed the hand through weight bearing then try to
place it on a surface (using the other hand to help) and see if you can keep it there without it falling off. To make this harder, place the hand on a soccer ball (or similar) and try to keep it from falling off the ball. You can also progress to placing the hand on an inclined surface if a flat surface or ball is too easy.

4) Similar to number 3, I have the patient put both hands on a ball with fingers outstretched and have them first try to just keep their weak hand on the side of the ball. Once they master this, we move to trying to lift the ball with hands flat on each side of the ball.

5) I use tapping to the back of the forearm and try to have the patient open the fingers and lift the hand back. I also use electrical stimulation but a physician's prescription is required for this and the patient must not have any contraindications.

These are some of the basic exercises I start addressing with patients. One must first be able to get the hand open passively and be able to hold the hand open flat on an object then he/she can progress to more advanced exercises. One needs to do the exercises repeatedly and throughout the day to have the best chance of getting results. You should try to incorporate the use of the hand/arm in any task that you can throughout the day even if it's only placing the weak hand on an object to hold it in place.

I cannot predict if you could walk without a cane, but my suggestion is to get a physical therapy order from your doctor and let the therapist know your goal is walking without a cane. That way you could safely work on this goal. It doesn't matter if you've had therapy in the past. You can always ask for more therapy especially if you have a specific goal to address, have experienced any changes, or are trying something new like botox or medicine changes to control spasticity. I see many patients come back for therapy many years after their stroke. Good luck to you!

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I can no longer walk. Please help

by Melissa Kulik
(Fairbanks, Alaska)

Question: I had a stroke in October 2011. I lost all feeling on my right side. Over time I eventually learned to walk and my muscles would always tense up, but I was still able to walk. In this past week I have no feeling again, my leg is just limp. I have not seen a doctor yet but plan on it 1st thing in the morning.

Answer:: Any time you have a major change like this, you should see your MD or go to an emergency room right away to rule out a new stroke or other problems.

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Getting worse after being better

Question A friend of mine had a stroke this past week. The stroke affected the left side of his brain. He was given TPA shortly after he arrived at the hospital and the difference in watching him regain his speech and movement were amazing. Now a few days later he seems to be as bad as he was when first taken to the hospital. What happened? Why are we seeing him regress?

Answer: It's not necessarily unusual to see a stroke patient's condition fluctuate in the first few days after stroke, but make sure that the MD's/nurses are aware of any changes so that they can monitor the patient. Sometimes the medical staff is not as aware of the changes in condition as the family members so it's important to speak up in case a new complication has developed.

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Symptoms getting worse since Stroke?

by Jen C.
(Marietta, GA)

Question: My husband, currently age 43, had a large ischemic stroke on the left side of his brain 2 years ago tomorrow. He suffers from short term memory issues, right side visual field impairment, aphasia, and numbness on his entire right side.

He had a long term disability policy through his employer and now the disability company is questioning his recovery. 2 months after his stoke he was evaluated by a neuropsychologist and then the disability company just ordered another evaluation. The results were markedly worse from his initial testing nearly 2 years ago so the new neuropsychologist has concluded that my husband must be faking it as his results are "not typically what they see from someone recovering from a stroke".

I can state with 100% confidence that he is not faking these issues. I am with him 24 hours a day (we both work from home now). It is infuriating that this Dr. would accuse him of faking! While most patients do recover, is it possible that his difficulties could worsen over time? (We feel that they have). If so, do you know any resources that I can research for evidence supporting this? I fear that we are going to have difficulties with the disability company.

Thank you!

Answer: If you feel he has worsened, I would recommend he see a neurologist to discuss the worsening of symptoms and possibility of new incidences. I would also let the neurologist know about what is going on with the disability claim. You need an advocate in your corner, and I would say that a MRI showing a stroke would be fairly sufficient in proving someone is not "faking it". You could ask for a new MRI to make sure that nothing new has occurred. If the disability insurance provider is not cooperative or receptive to helping then I would consult with an attorney regarding your options.

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I had a TIA few months ago

Question I had a TIA a year ago then six months later had another then few days ago while resting suddenly my eyes couldn't focus at all felt like they where crossing over each other and double vision also numbness down my left side I am concerned and worried could this be another TIA happening can anyone give me advise please. Many thanks.

Answer: Some people can have multiple TIAs. Since you are having unusual symptoms, I suggest you consult with your MD or a neurologist.

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Recurrence of stroke effects

by Margaret
(Exeter uk)

Question: In the 3 and 1/2 years since my husband had a severe left side affected stroke, he has had an annual recurrence necessitating a hospital stay & lengthy rehab. He has not had another stroke, but the old stroke site has been irritated, the most recent as after a pilgrimage to Lourdes. What can be done to prevent this?

Answer: This sounds more like a medical problem than a problem with rehabilitation so I would recommend talking to his doctors about what is going on and how to prevent it if possible.

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Eyesight worsened 5 weeks AFTER stroke.

by Rita
(Dedham MA)

Question: My husband is six weeks into post stroke and still in rehab facility. The doctors have no clue why all of a sudden his vision had become extremely poor. He had a brainstem stroke affecting his left side body and swallowing. But his eyes were fine! Now 6 weeks into rehabilitation, and he can't even read large print newspaper. 2 weeks ago he could read the fine print off his medication summaries.. What can we do to help his eyes to improve. He has PT OT and SLP daily but no one has suggestions for eyes. One doctor mentioned to patch an eye. But then he will be even more hindered. Any suggestions?

Answer: I would talk to your husband's neurologist and check to make sure he has not had a subsequent stroke. I have had several patients have strokes where the main or only symptom was visual changes, so I would ask for an MRI or CAT Scan to see if there have been any changes. In addition, I would set up an appointment with a neuro-optometrist to see what is going on with your husband's eyes. Make sure it is a neuro optometrist as they deal with conditions of the eye related to stroke and will identify problems that may be missed by a regular optometrist. You can find out more about neuro optometrists at www.noravisionrehab.com

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Progression /Regression

by Sharyn
(Iowa )

Question: My dad fell and had a bleed on his brain which effected the left lobe of his brain. A week later, he had a stroke, which also effected the left lobe of his brain. This was 6 weeks ago. He is now in a nursing home getting therapy. Sometimes I see him, we have good conversations., 2 days later he's all confused and isn't making any sense. Why is this happening??? NOBODY is giving us any answers.

Answer: It would be best to talk to your dad's physician about his condition. Symptoms of stroke can be magnified when a patient is sleepy or fatigued. Certain medications can also make a difference in the level of alertness/cognition, so being aware of when he has had medication and the effects may be something to investigate. In addition, dehydration and drops in blood pressure can cause a change in a level of alertness as well. Sometimes swelling in the brain may be an issue after a head injury. If you (or the nurses) can keep a record of changes in cognition along with time of day/blood pressure/time meds were taken, you might get a clearer picture of what is going on.

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Getting Worse Not Better After Stroke

by Marice
(Hammond, Indiana)

Question: My aunt exercised every day. She eats right does not drink or smoke. When she had her first stroke, she was able to reach the hospital in time to get the shot. She was then transferred to another hospital. She had a mini stroke there and it affected her speech. Every time she goes to rehab she starts to get better. She goes home and within three months she has another stroke. Then the process starts over again. So far she has had 5 strokes and several mini ones.

Her husband keeps telling us the strokes happen because she has small veins. She can not walk on her own. Her speech has gotten worse. She shakes more. She can't see to well. There was a time after one stroke that she thought someone was trying to harm her. Her one physician has prescribe 11 medications for her. He has also prescribed two differnt multiple vitamins. She has become depressed. All she does is sleep and listen to crime stores on tv. She also keeps her weight under control. How can I help her?

Answer: Some people have multiple strokes, and from my experience, they do tend to decline in function. I don't know if there is anything the physicians can do to figure out why she is having strokes and stopping it, but if her physician is not a neurologist, then I would definitely have her see one since they specialize in working with neurological disorders. I would also have her consult with a cardiovascular specialist if she hasn't already. Sometimes people rely solely on their general physicians when they need to consult a specialist to find out what is wrong. I have seen cases where doctors were unable to stop or determine what was causing multiple strokes, so I do not know if they will have a solution, but that is where I would have her start if she hasn't already.

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Good hand 3 years post his stroke is getting very weak.

Question: My father is having a hard time pulling himself up out of his wheelchair. His good hand keeps getting weaker. A number of his doctors say they don't know what causes it. The O.T. can measure how much strength he is losing. What could be causing his loss of strength in this hand?. He won't be able to continue staying at home if it gets much worse. Thank you.

Answer: I would take documentation from the OT regarding hand strength and sensation to a neurologist. If it's just a minor change, this is not unusual over time as we age (you can see a chart of hand strength for various ages to see where he falls or ask the OT to show you the chart). If there is a significant change in strength, I would take the results to a neurologist and see if they will do testing such as a nerve conduction study to check for neuropathy or other problems with nerves. I would ask the OT to check for sensation issues with Semmes Weinstein (or similar) monofilaments. If your father has any numbness/tingling or sensation deficits plus weakness, that would be a sign of problems with nerves which is not uncommon. Sensation testing is more accurate if you use monofilaments. You can't just go by report of I can feel with my fingers or trying to touch the hand with your own hand to see if he can feel it. He would need sensation testing on a finer level such as with the monofilaments to detect subtle changes.

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recurrence of symptoms after 15 years

by Jean
(Sarasota, Florida)

15 years ago, I had a right brain ischemic stroke due to a carotid dissection. I was briefly paralyzed and recovered completely with TPA. I experienced brief paralsyis once again following placement of a stent in the artery. My recovery was very good, about 98%. Until about a few months ago, when my mobility went haywire, and has been getting worse. An MRI showed no new stroke and was all around negative. A carotid ultrasound showed normal blood flow. I was playing tennis a month ago but now I cannot play. I feel unstable and my gait is awkward and unbalanced. I fell for the first time in 15 years. I also have involuntary movements in my left arm. My current neurologist has no idea what is going on, and I have an appointment soon with new one. Any ideas?

Answer There are many types of neurological disorders that can cause similar symptoms, so I think you are wise to seek the advice of another neurologist. Some disorders such as Parkinson's don't have a specific test that you can take to get a diagnosis. Most likely, your neurologist will rule out certain diagnoses and hopefully can determine what is going on. My best advice is continue to work with your doctor in determining a diagnosis. Sometimes other tests such as bloodwork or cerebrospinal fluid testing may be indicated. Keep a journal with dates of your symptoms so you can share it with your doctor and get a better picture of what is going on.

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2 years after my husbands stroke and he is worse not better

by alicia
(sarasota fl)

Question: After my husbands stroke he had 3 sessions of physical therapy which was not enough , then developed a C Diff infection which took 5 months to diagnose, he slept on the toilet for 5 months , it was awful , now his legs are swollen and no doctor can help. I took him to the emergency room 3 times with burning pain in his legs he still has the runs constantly. He drifts in and out of reality. He is 55 and I am 46 I am so depressed. It never ends. He was my best friend, and we had wonderful times together. I feel I lost him even though he is still alive. I don't go out with friends or go out anywhere except work. I feel like I am just existing. I've tried to help him but I am not a doctor, and he won't help himself. I feel so guilty, but should I accept my life as before has ended or continue on and get back to things I want to do.I would love to go out with him, but he refuses to go anywhere except to the doctor. We haven't been in a restaurant for 3 years or a movie. I find myself staying in bed all day long not eating, this is depression. I need to make a move . I'm so very confused as to what I should do.

Answer: You can get help by talking to a licensed counselor to help you through this time. I also recommend going to a caregiver support group or at the very least looking into online caregiver forums. Others that in your situation may be able to give you invaluable insight in how to change or improve your situation and help your husband.

As a caregiver, you have to take care of yourself. This means taking care of your health and doing things you enjoy whether he comes with you or not. I think you really can't make a good decision about your situation until you start taking care of your emotional and social health. Once you have started taking care of yourself, then you can concentrate on figuring out a way to help your husband and make the life decisions you are talking about. These are my own personal opinions, however, and not expert advice.

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Stroke - decline in balance and strength

by Linda Bibbs

Question Hi,I had my stroke Aug. 5, 2010,caused by a brain bled in my left thalamus and over the years I have experience various levels of pain, spasms strong enough to wake me from sleep, and constant times of seeing double and triple visions accompanied with headaches and dripping sweats. Since my original stroke, I have been told I two areas of my aorta have developed aneurysms, I have a 7mm thalamus posterior cavernous malformation, and need to sleep with a cpap machine because I stop breathing in my sleep and my brain doesn't wake me up to breathe. Now to add to my health dilemma,I have noticed in the pass couple of months that my right is weakening, and I am struggling to keep my balance. I feel I am getting worse. Is this normal?

Answer: Since you are noticing changes in your strength and balance, I would recommend you visit with your doctor regarding these symptoms. I would also ask the physician for a therapy prescription since you are having these changes so that the weakness and balance decline can be addressed.

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after stroke

by cole
(memphis)

Question: Five years after my stroke, my right side has stiffened up more and at times feels like someone is clutching hip and arm. Hand is numb for the whole time. My right side is hypersensitive, and I walk with a limp and leg points inward just to name a few issues. Docs can't pinpoint.

Answer: Since you have had changes in your condition, I would request a PT and OT referral from your MD. It could be due to late effects from your stroke or the doctor could just write a referral due to pain and stiffness that is new onset.

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Three years later and my sister has no movement.

by Rene'e
(Philadelphia PA)

Question My sister is 54 yrs old and started having problems with opening windows, jars, etc. She started losing muscle mass and now she's not able to walk or use her arms and hands, but she can move her head and wiggle her feet. She said she had a stroke and her nurse said it's ALS. She sleeps with oxygen at night. Is this condition reversible? I was told people can get ALS symptoms after having a stroke.

Answer: I would assume that the nurse would know your sister's diagnosis if she says she does (unless the nurse is telling you that's just her opinion). What you describe does sound like ALS, however, there are other neurologic conditions that can mimic ALS symptoms, but I'm assuming she has already been diagnosed by the doctor since the nurse is telling you that your sister has ALS. If she has not been diagnosed by a doctor, then you won't know what's wrong until she gets an official diagnosis.

What you describe does not sound like stroke. It's possible she could have both conditions, but a gradual loss of muscle mass, use of hands, and inability to move over time is not the pattern for a stroke. Strokes come on abruptly due to damage to the brain from either lack of blood flow (ischemic stroke) or bleeding (hemorrhagic stroke). ALS on the other hand is due to degeneration of neurons and at this time has no cure and is not reversible. It also is genetic in about 5-10% of cases. You can read more about ALS at https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Amyotrophic-Lateral-Sclerosis-ALS-Fact-Sheet.

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More numbness than right after stroke

by Diana
(Keizer, OR)

Question: My stroke was 1 1/2 yrs ago. The numbness in my leg is now worse than right after the stroke. Why? I am also dizzy & my leg being more numb throws me off even more. What can I do? I still do exercises as much as I can.

Answer: I would check with your MD to see why numbness has increased. You will want to rule out neuropathy (diabetes is often a cause of neuropathy and can lead to dizziness if blood sugar is low, so that is something to ask about). Decreased circulation can also increase numbness. There are a myriad of reasons that could cause numbness and increased dizziness, so I would first investigate why you are having an increase in these symptoms. Many people will assume exacerbated symptoms that show up months or years later are a result of their initial stroke when in fact are due to something else. If the doctor rules out new nerve or circulatory issues, then I would suggest asking for physical therapy orders for a change in condition.

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Still dizzy and have headaches when exercising after a stroke Nov2017

by Anna D
(Waltham MA )

Question I had a TIA (Transient Ischemic Attack)stroke last nov 2017. I experience temporary paralysis on the left side to my arm, hand, mouth and face. I have recovered from these. During the work up phase it was thought that a hole in the heart may have been one of the causes of the stroke. After several weeks of working with a hand therapist and speech therapist. I started to walk again. I have been experiencing dizziness followed by headaches. The headaches come on when I weight lift.

Has anyone experienced this? If so what was your resolution?

Answer: This is a serious symptom, and I would recommend that you see a neurologist especially since you have already experienced a TIA. Heavy lifting and straining can lead to increased blood pressure , and if you have ischemic disease, this can put you at risk for stroke. Straining could also lead to increased pressure in the brain putting you at possible risk for hemorrhaging.

It could be simply that you need to drink more water since dehydration during exercise can lead to headaches, or it may be that muscle tension is causing headaches, but I would absolutely see a neurologist to rule out more serious causes. My own father started having headaches during bowel movements. He ended up dying several months later from a brain hemorrhage, so I tend to take headaches during straining activities quite seriously especially since you already have past cardiovascular issues.

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Brain stroke

Question Hi, I'm Sangeetha. I had a minor right-side brain stroke two years ago. Until now I did not have any issues. The doctor prescribed me 1 aspirin tablet each day, and a tension tablet rarely if I wanted. Due to the cold climate from the past 4 days, I'm feeling dizzy, my foot feels very cold, and the back side of my head pains sometimes.

Answer: Interestingly, studies have shown that the incidence of stroke increases with cold weather. Some reports indicate the blood vessels constrict in cold temperatures which can increase blood pressure. Other research indicates that blood becomes thicker in cold temperatures which could put a person more at risk for stroke. Since you already have had a stroke, you are already at higher risk for having another stroke. It is important to monitor your blood pressure to make sure it is within normal range, and I would definitely consult your MD about the new symptoms you are having (or go to ER if these symptoms have come on suddenly and are persisting).

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Impulse control

by Lucy
(Lowell MA, USA)

Question: My husband had a vertebral artery dissection causing a minor stroke 9 years ago. Recovery was rapid without incident. Now he seems to be having issues with impulse control - anger with yelling, etc. No other reason to suspect another cause other than late effects of stroke. Could this be the cause?

Answer: If your husband did not start exhibiting these symptoms until recently, then I would not believe that the stroke 9 years ago is the cause of these symptoms. If, however, he was exhibiting these symptoms since the stroke, and they have seemed to worsen gradually over time, then it may be possible. You didn't mention your husband's age, but as we age, there are definitely changes in the brain as well as in hormones which can affect the way in which a person acts. Since you are noticing these changes, it would probably be good for your husband to visit a neurologist to see if there have been changes in the brain. If no changes are detected, then I would ask about having bloodwork and hormones checked by his general practitioner or an endocrinologist.

Sometimes people will attribute sudden emotional, cognitive and physical changes to a stroke they had years ago and will just ignore these changes. It is important to investigate the cause of any changes in health regardless if one had a stroke years ago, as in many cases these new changes occur because of other reasons. That's why it is important to know what effects the first stroke had and any new changes or worsening of symptoms that develop and to relay this to his physician and to be clear that these are new symptoms.

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Balance/coordination/vision

Question:Post hemorrhagic stroke balance is getting worse 3 years after stroke. Also vision problems, including double vision, have occurred in the past year. Is there anything I can do to heal my problems or at least prevent these problems from getting worse?

Answer: Anytime when you have a change in your condition, I would ask your MD for a therapy referral. So for your balance problems, I would ask for a PT referral. For your vision, I would see a neuro-optometrist (not a general optometrist), and they often have vision rehab or can refer you to a therapist that does vision rehab.

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Stroke delayed systems

by Teresa
(Scotland )

Question: My partner suffered a stroke 14 months ago. He had headaches and blurred vision and thought he needed glasses. He went to optician and they sent him straight to a&e hospitals as he had a shadow in back of brain. He found out he actually had a massive stroke but not sure when it happened. My partner is an alcoholic. It turned out he lost half vision in both eyes. His vision has improved well, but the past 2 months he's having problems with his speech being slurred. We are waiting on CT scan results. Is this common to happen after this time?

Answer Once someone has a stroke, he or she is at a higher risk of having another stroke. Any time new symptoms show up, it is imperative to seek medical attention to make sure another stroke is not occurring especially in the case of your partner whose first stroke was over 14 months ago and who has a history of alcoholism. Lifestyle changes can help reduce the risk of stroke and would be highly recommended.

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Bleeding stroke

by TERESA
(Lawton ok)

Question: My dad is 75 and had a bleeding stroke 3 months ago.. It affected his memory and balance.. he got alot better in rehab and was even walking up down his street.. now all of a sudden his balance is off again and his memory is bad and he's confused alot..

Answer: Since it has been three months since his stroke, and these symptoms have all of a sudden worsened, I would check with his MD to make sure there haven't been new neurological/brain changes. In addition, sometimes symptoms can worsen when someone has a UTI or other type of infection, is dehydrated, or has side effects from medication. There could be a host of other reasons why these changes are occurring, but I would recommend following up with his MD to determine what is going on. Many people blame an initial stroke for changes months or even years later, but any new changes are often unrelated to an older stroke and need to be evaluated. If the MD finds nothing wrong, and your father simply started to decline after returning home from rehab, he may not be getting the exercise/continued rehab he needs at home. Sometimes it's necessary for stroke patients to seek more rehabilitation in the future after their stroke. I have known many stroke patients who seek rehab every year or two to help them maintain their level of function and prevent decline.

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stroke and uti infection

by Marjorie Crane
(Hobe Sound FL.33455)

QuestionMy daughter had a bleed on brain (stroke) on 3-3-2019. She had surgery and they took out part of her skull and several months later replaced it back. My daughter has been in and out hospitals and rehabs, and now is home. Her past memory is great but present memory is not so good. She continues to get UTI infections and on different antibiotics. She yells continuously at times and hallucinates a lot. Doctors say it is from stroke. Can't there be something to help her? Marjorie Crane and Thank You!

Answer I would suggest consulting with a urologist to see why she keeps getting UTIs. UTIs can also cause mental changes and even hallucinations if not treated. Once UTIs are under control, if she continues to have hallucinations and yelling, then I would consult with a neurologist or neuropsychiatrist to see if there are meds that could help, but I would first make sure the problem is not being caused by UTIs.

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Had stroke on left side of brain ...

by Kim
(Jennings)

Question: I had stroke on left side of brain at birth....suffered mild right side deformities. ( Ex: right side of body is slightly smaller than the other; weak immune system throughout my life; much later in life...due to meningitis...was diagnosed with full blown epilepy)...now..50+ years later...for a few months having really bad pains...with inflammation...just realizing...it is ALL on the right side of my body. ...SO...my question is this? Is it connected to the stroke? What IS IT? What can be done? I'm even limping. Its getting worse...thank you.

Answer: Since these are new symptoms that have started more recently, you should visit with your MD to find out what is going on. Make sure you find someone that listens to your symptoms, evaluates your problem, and doesn't just blame it on your stroke at birth. Maybe it's related to muscle weakness/physiological changes on the right side, but no one should definitively say that without a thorough evaluation.

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Symptoms after stroke

Question I had a stroke about 8 weeks ago in my cerebellum. Physical rehab seems to be going good. They think I have APS that caused the blood clot. I’m in my 40s never had anything wrong before. Recently I had random symptoms (wobbly eyes, dizziness, lightheaded, my arms hit and feel funny, my body feels like something is wrong, my head feels different by doesn’t hurt) it lasts a few hours and I have to lay down with a cold towel on my eyes. It’s happened at different times but every day the last week. Thus seems to have just came on. I went to the hospital once they did a CR scan and blood work and said I was fine.

Answer: A stroke in the cerebellum can result in problems with balance, coordination, headaches, dizziness, and nausea to name a few. Your symptoms are pretty consistent with what one would see in a cerebellar stroke. Hopefully with time, symptoms will improve, but it is always a good idea to check with your MD if you have new onset of symptoms to be certain you aren't having any new event/changes.

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Stroke after a year

by Donna
(Sebring, Fl)

Question: My husband had a stroke a year ago. He has no paralysis, just a lot of joint pain. He has complained of left side stabbing pain in his head even before. Today after having pain in head yesterday, cannot remember his age and looks kind of droopy in the eyes. Should I be worried? Is he having a small stroke? Doctor said in hospital that he had many mini strokes. Should I let doctor know or take to hospital? How do you tell when small strokes are happening?

Answer: TIAs (transient ischemic attacks) can occur and symptoms may appear for a few minutes up to 24 hours but then resolve, and sometimes multiple TIAs or strokes can occur without noticed symptoms and are not discovered until someone has a brain scan. I would definitely go see the doctor or take him to the hospital with the symptoms you are describing. TIAs can present in many different ways including slurred speech, altered mental status, changes in vision, paralysis of face or other body parts just to name a few.

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Rehab

by Diane jacques
(Atlanta, Georgia)

Question: My son is 33, and he had a stroke. He graduated with a special ed diploma on a 5th grade level and he wants his dad there but the facility won’t let him, so today he cried. He isn’t trying to do anything. He just lays there with eyes closed. What can I do? I need help doing rehab at home with nurse and therapists.

Answer: You can get the MD to issue home health orders for a nurse, CNA, and therapy. They normally will only come out several days a week, however, so if you need help daily or around the clock, you may have to look into paid caregiver options. Some states have special assistance. You indicate that you live in Georgia, so you should check with your state to see if they have programs to help you with his care or that may pay you to be a caregiver. Here are some websites that might be helpful in Georgia:

https://www.georgiaadrc.com>

https://www.empowerline.org/resource/coordinating-care-for-adults-with-disabilities/

https://healthforcega.com/

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Decline months after stroke?

Question: My dad had a stroke June 2020 on the right side of his brain, and he seemed to be slowly getting better over time. However, in the past couple of months (Feb/March 2021) he has been getting worse not better. He’s a lot more forgetful and he keeps fumbling his words, and he is incredibly fatigued. I’m at university so he’s always with my mum who is really struggling to cope, but the doctors are doing nothing to help either of them. Any ideas for what could be causing this regression and how we can get help?

Answer: Has your father had a new brain scan since these changes have occurred? If not, then I would suggest requesting the MD order one letting them know that there has been changes, and I would communicate it in writing as well as verbally, so that you can hold them accountable if they do not respond. Outline why you want a new scan, mentioning specific changes and the burden it has caused for your mother. It is not uncommon for medical professionals to try and blame all symptoms on a previous stroke which may not be the case. You and your mother know your dad, so you will be more aware if there has been a decline/change vs. a doctor that may only see your father for a 5-10 minute appointment once or twice a year. You could also request new therapy orders (seems like speech would be most appropriate in this case) or for the MD to evaluate your father's sleep/medications. Caregivers have to be the advocate, but you really have to go in with specifics to the doctors, so they will know what the problems are and how they can help you. Often patients and caregivers will go in and say vague statements, and doctors will not realize the extent of the problem.

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Some symptoms worsening, others getting better

by Jason
(Boston, Ma, USA)

Question: My 72 year old mom had a stroke 9 days ago. It was an anuerysm that had leaked. The night it happened she was pretty bad, could barely move her left side, couldn't find words and was speaking in jibberish. Over the next 2 to 5 days we saw amazing improvements that gave us all hope. Her speaking got much better, almost normal most of the time. She had no issues finding words or remembering things. She even started walking with the help of a walker around the ICU. On day 5 things seemed different, she started losing words more and more, started to forget her birthday which she knew the first few days very easily. She now shows inability to read, it's sort of like a 4 year old trying to read, but she tries to read backwards from the last letter and gets the letters wrong. She's also losing things in her vision, usually to her left. This has been present since the first night and seems to only improved very very slightly. However her ability to move her left side has improved tremendously. She can move and raise her arm and leg quickly and easily (with the exception of her hand/fingers). Speaking with her doctor just returns "this is normal in stroke patients" but we don't feel they've noticed the decline in some areas as much as we have even after explaining it fully.

My question is, do some symptoms start to get better but then get worse before they get better again? It seems odd to us and is very frustrating for us and her. We know it takes time but why would she show vast improvements in speech and cognitive ability right off the bat, only to have this part regress? We can't have her consult her MD or neurologists, they don't have answers. We're wondering if this is normal in recovery even this early. If not we want to take precautions immediately to get her better care.

Answer:There are many reasons that cognition could become worse. There could be further leaking (even after a repair), increased swelling in the brain, seizures, changes due to new meds administered, development of urinary tract infections or UTIs (common in the hospital especially if on a catheter), and dehydration to name a few. Since you are family and are with your mother more and are going to be more observant of changes, I would not back down in your quest for answers. Obviously scans of the brain would let you know if there is swelling or leaks, bloodwork would help indicate if there is an infection/dehydration, urine samples would help identify UTI. You can also inquire about seizure risk. If you feel that there has been obvious changes, it is within your rights to talk to the MDs (sometimes the PCP or generalist might be best if you are not getting anywhere with the neurologist, and you want to look at possible multiple causes rather than just neurological reasons). Just let them know that you would like all these areas looked at just to be sure. It's possible that they have already addressed any of these issues since they typically would be doing bloodwork or scans, and they just need to explain the results to you. If they have found nothing unusual after the date of change, then you can be satisfied with their explanation of it just being normal for stroke, but if they have not looked at other possible causes of a change in status, then it would be prudent to do so. I personally think that one of the biggest problems with hospital care is the medical staff not taking into consideration the observations of the family. Yes, many families are not trained in medical care and may not understand what is going on, but families are quite astute at noticing changes which should always be taken into consideration in my opinion, as I have seen many missed diagnoses and lack of appropriate treatment for this very reason.

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stroke in evolution

Question: My mother had a stroke that left her paralyzed on the right side. Twelve days later, she was able to lift her right leg about six inches off the bed (we have video evidence of this). However, since then, she has not been able to repeat that. She can occasionally manage three inches, and mostly not at all.

The doctor says it was a "stroke in evolution," i.e. the stroke had not completed 12 days later, and only now (fully four weeks after the stroke) is it complete. Moreover, because she hasn't shown progress in the last week, they want to give up on her treatment and discharge her because they think she won't walk--and they are making this determination just one month after the stroke!

My question: wouldn't a stroke in evolution imply that she could use her leg immediately after the stroke? But she couldn't. She was completely paralyzed, and 12 days later was able to lift, and now can't. My alternative interpretation: they recently diagnosed her with a vitamin D deficiency (she hasn't seen the sun in 28 days after all). So maybe she's just tired! She was able to lift 12 days after the stroke because the deficiency wasn't severe yet, but afterwards she has just been too tired to lift.

Is this plausible to you? The key piece of evidence is that she actually *progressed* between day 1 and day 12, which does not seem consistent with what I am reading about stroke in evolution.

Thanks in advance for any advice, or citations to research, that you can give!

Answer: There is a lot of change that happens the first few months after a stroke. One can go from complete flaccidity with paralysis to increased tone which can also impair movement. Positioning can affect tone, and a person will be able to move a body part in one position but not in another. There can also be a stroke in evolution where you see a decline. I've seen vast fluctuations with stroke from one day to the next depending on a variety of factors including fatigue, illness, spasticity, cognition, and a host of other factors.

Unfortunately, it can be hard to measure progress in short periods of time, and you have to look for repeated progress over a longer period of time. I do this frequently when evaluating patients because one day it appears they have met a goal, but in future visits, they do not show the ability to perform the same task. It's quite different than someone with normal body movement and tone.

Many people have Vitamin D deficiency, and I personally do not believe that would be a factor though lying in a hospital bed excessively could lead to increased weakness. I do agree that a month is not long enough for therapy. A few weeks to one month is a typical stay in an inpatient rehabilitation facility after a serious stroke but shouldn't indicate the end of therapy services as a patient can usually have home health, outpatient, or neuro day treatment after leaving inpatient facilities.

If she is in a skilled nursing facility that she is not leaving, then I would definitely ask for continued therapy.

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Can you get paralyzed 2 wks later after having a Stroke

Question: My sister had a stroke on July 30, 2022, on her left side she was hospitalized and receiving care after her stroke she was able to move both hands and feet then 2 weeks later while still in the hospital she became paralyzed on her entire left side and could not move. Is this normal to become paralyzed 2 weeks after having a stroke?

Answer: If she didn't have paralysis originally and then developed paralysis two weeks after her initial stroke, then I would suspect an extension of the first stroke or possibly another stroke. I would consult with the MD for their assessment and ask for a brain scan.

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5 days post stroke

by Christy
(KS)

Question: My dad had a stroke 4 days ago, he had a brain bleed on the right side caused by high blood pressure. The first two days he was able to raise both arms above his head and do the simple nose-to-finger assessments. Today, on day 5 he can’t move his left arm or his left leg at all. He also seemed to have a hard time keeping his head straight up without it leaning to one side. Is it normal for him to be regressing in this situation? He’ll go to an inpatient rehab in a couple of days and I’m afraid he won’t even have the strength to move anything.

Answer Hemorrhagic stroke symptoms can sometimes worsen in the first 72 hours sometimes due to expansion of the bleed, edema, and/or inflammation. It's important to notify the MD of any abrupt physical or mental changes as you want to make sure your loved one is stabilized before leaving acute care in the hospital. Once a person stabilizes, then you'll have a better idea of the deficits you are dealing with.

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Appetite regression after stroke

by Aimee
(Louisiana )

Question My husband,57, had a stroke almost 3 months ago. He was eating very well the first month. Now he barely has an appetite at all. He's losing weight quickly and becoming discouraged. What can cause this regression? Most foods taste bad to him now. Even foods he loved before. My Husband is also diabetic with high BP. Doctors aren't giving us any ideas what to do. He is wasting away. Please help. Thank you for any advice.

Answer: I would suggest doing a consult with a dietician or nutritionist. They may have ideas to make food more appetizing or at least ideas for high-nutrition foods. Sometimes MDs will prescribe an appetite stimulant which is also something you can inquire about. My own mother had kidney disease and was on dialysis. Often people with kidney disease have altered taste buds. She did not like any food after a while, and there wasn't much we could do to alter it. I mention this as many people with diabetes have kidney disease/dialysis and wanted to point it out as a possible cause if your husband deals with anything like this.

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