Submissions from Readers

Motivation

by Marilyn
(Prescott AZ)

Question: My husband had a stroke 2 years ago. It affected his right side. He walks with a cane and a little without one but can not use his right hand. He is left handed so he can do a lot of things. How can I keep him motivated?


Answer: Here are some tips to help keep him motivated:

1. Have him participate in activities that he enjoys. If he had a favorite hobby before that is now difficult, try to adapt the hobby so that he can participate. You can also help him find new hobbies.

2. If applicable, involve younger children and grandchildren to make activities more fun and motivating to him.

3. Do activities with peers. Continue to be active socially and have friends help you keep him motivated.

4. Keep a chart of exercises and progress.

5. Set goals and work on achieving each goal. Goals make one's action have a clear direction. If a goal ends up being too difficult then choose an easier goal.

6. Give a reward when a goal is achieved (e.g go to a favorite restaurant, go on a trip, make a favorite meal, get a massage, etc.)

7. Don't nag and try to keep a positive attitude and outlook.

8. Have him read positive mental attitude or encouraging books (or listen to them online together or via audio tapes together).

9. If you use certain equipment for therapy, keep it easily accessible and visible (out of sight=out of mind and will lead to not following through with exercises)

10. Have him exercise with a partner that will hold him accountable for exercising (a friend or maybe another stroke survivor).

11. Hire a personal trainer that has experience in working with stroke patients.

12. Vary his routine to prevent boredom.

13. Make sure he gets enough rest and does not get over fatigued.

14. If you tend to help him too much, stand back and make yourself less available so that he must become more independent in doing for himself.

15. Continue to treat him as your equal. Don't coddle or treat him as a child. This can be demeaning to a person who has had a stroke.

There are many people that live enjoyable, fulfilling lives that have disabilities. Attitude plays a big part in how a person responds to a disability. This is true from the perspective of a caregiver as well.

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Forget motivational books
by: Stroke Bloke

I came to the realization that those of us stroke victims who have good cognition actually go through a 'grieving" process not much different to losing someone very close to us, denial, guilt/bargaining, anger, depression and acceptance. Not always in that order. We grieve the loss of our old self.

I also lost right side and I'm not left handed! My personal work for recovery is another story. I was already one that tended to be grumpy, but I got worse, not inclined to be depressed I got really depressed. Luckily my partner did most of the denial and refused to molly coddle me which I originally took as not caring and not understanding, but in fact she was continuing to treat me as a partner that she still valued-THAT is the best thing you can do!! When you feel valued, not just loved, you feel like life is still worth living. Go out to a restaurant - not as a reward for being a good boy but because you want to go out as a couple as you normally did?! My advice to the stroke survivor is to be upfront with all about your stroke; tell all and sundry and keep on trying to do what you can. When people greet me with the tentative, "how are you doing," my answer to the chagrin of my family, is to say with a smile, "not bad for a bloke with a stroke!" Embrace the new you; sure there is still frustration but I rationalize it with the fact that I would be slowed down any way as I age. I can't run the 100 in 11 seconds flat, or play in the A league soccer like I could at 19 years of age- that's life and unfortunately so is having a stroke.

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Thank you for your story
by: Anonymous

I agree that always encouraging your loved one and keeping them motivated is very important. When my grandmother had her stroke, I saw her get frustrated all the time. Keeping them motivated is so incredibly important. Also letting them know how strong they are. I wish you all the best. I posted a bit of my own story here http://kespeechpathologist.weebly.com/blog/it-happens-in-a-moment
I hope it helps someone. Thank you

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denial of limitations

Question: My husband had a stroke 6 months ago and has never accepted his limitations. He tells doctors he can perform a cardio-stress test on a treadmill when he cannot walk more than 100 feet, and that with 2 crutches! He is sure he can drive, although he shows poor coordination and sudden fatigue. He refuses any assistance with doors, chairs, etc. and asks "Why are people treating me like an invalid?" He wants to travel although he cannot lift a suitcase. He will not go in the "handicapped" line anywhere. Although he gets exhausted and must sit down to rest after a few paces, he will not use a wheelchair. We cannot go to museums or zoos because of that. He holds on to furniture in the house because he will not use canes. He will not wear support hose because he "does not need them". He will not wear a napkin or bib because he does not realize he dribbles whenever he eats, even when he sees it on his shirt. This is driving me nuts. Even when the consequences are staring him in the face, he will deny it. What's to be done? He has never moved out of this "phase".

Answer: This isn't necessarily a "phase" but may be likely due to the part of the brain that was affected. You do not mention what part or side of the brain was affected, but he demonstrates many of the symptoms of a right brain CVA with left side extremity weakness. Some of the characteristics of R brain strokes are impulsiveness, trying to do things without help which may be dangerous, showing little awareness of problems from stroke, restlessness, agitation, and denial of disability. You may benefit from asking the MD what areas of the brain were affected and then researching the effects of damage to those areas. I suspect your husband has had damage that is causing these behaviors. You can look online regarding ways to deal with patients that have had a R brain CVA (or with damages to other areas). This may help you learn better techniques in dealing with him. You could also have him work with a speech language pathologist, cognitive therapist, or a neuro-psychologist.

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Post stroke father refers to left arm as child

Question: My father is 3 yrs post stroke with left side paralysis. He refers to his affected arm as her/him. He asks "child" questions and talks to arm throughout day. Md and I have explained to him that feeling in his arm is result of stroke. He will accept answer but in next breath refers back to his "child". I just want to know how to handle this. Do I try to reorient him or go along with his delusion?

Answer: Since he has been doing this for three years, I personally wouldn't bother in correcting him. You don't have to go along with it (meaning you can still call it his arm though he calls it his child), but I wouldn't go out of your way to explain things over and over again as he doesn't seem to be taking it in.

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Why NO TPA!!

by Nana Rose
(Houston)

Question: In the past I would see ads on stroke and TPA here in Houston. I memorized these ads and shared with my kids and other family members. In June, something happened to me. 911 was called at 10:00PM at night. I went to bed at 7:00PM and awoke for bathroom break at 8:30PM, talked with hubby, went back to bed and awoke again at 10:00PM for bathroom break but could not function my eyes. I was petrified. Hubby dialed 911. They put me on a moving office chair and took me to the ambulance in the driveway. There I sat for 30 minutes while they talked and made calls. Hubby wanted me at our doctor's hospital in the Med Center but they said they had to take me somewhere else. From there they lifeflighted me to another hospital in the Med center. CT scan showed a clot in the Cerebellum area.

I did not have any TPA although hubby asked for it. I do not remember much. The helicoptor ride, yes. I do remember the 911 lady cutting my jammies off of me with scissors. Now, 6 months later, I am not well. I feel had I was given the TPA shot (well within the time zone) I would be so much better. What prohibits them from not using TPA when one is in the safe time allowed. I had 4 weeks in a rehab place and 6 weeks in home health care PT. I may be 25% better but no more. I am scared in fear that this will happen again and no TPA. Do they still use TPA? We were told if I feel I am having another stroke to get to the nearest hospital ASAP. WHY? if they do not use TPA?

We know we will have to drive ourselves if we want to go to our own hospital where our doctors work, i.e. Cardiologist and neurologist. I also need to know if insurance plays a part in treatment. I am a Medicare patient and Policy permits me to go anywhere. I am diagnosed with a moderate insult of the cerebellum. My balance is way off as well as co-ordination. Does it and can it improve months later? Thank You. Nana Mary

Answer There are several contraindications to using TPA. The best way for you to find the answer is to present your question to the treating physician or facility so they can elaborate on why they did not choose TPA for you. You can visit this link that lists some of the contraindications to using TPA: http://www.icahn.org/files/Stroke_Library_/Tools/stroke_inclusion_exclusion_stroke_.pdf.

If you are concerned about having a future stroke and the care you may receive, you can research what the closest facility is to you that is accredited in stroke treatment and asked to be taken to that facility. Obviously, some individuals do not live close to such facilities, but doing research ahead of time will at least help you know your best option. If you live near Houston, there should be options.

As far as your question regarding recovery, I would not be able to predict how much you can improve, but yes it is possible to make improvement. If you do an online search for cerebellar stroke recovery, several blogs and forums pull up from stroke patients who detail their experiences. I believe this would be encouraging to you and allow you to see what others have achieved.

Hopefully you are working with an experienced therapist or have worked with one and have a home exercise program to continue. Since you have Medicare benefits, I would see if there is an outpatient facility near you that offers therapy. An outpatient facility will provide you more equipment to work with and will probably be more intense than home health. You could also look into working with an exercise professional who is experienced in working with stroke patients once you exhaust your therapy benefits.

I actually just came across a facility online today that is in Katy, Texas called Medical Fitness Pros. They have personal trainers and other professionals who have been trained and have experience in working with clients who have medical conditions. There are other facilities like this as well. These are not a substitute for physical or occupational therapy, but if you have exhausted your therapy benefits and would like to continue to exercise and work on balance, then places like these are an option but are not covered by insurance.

One thing to consider with your Medicare benefits for therapy is that they have caps and thresholds, and you are usually responsible for 20% of the copay for outpatient services. To find out more, visit https://www.medicare.gov/coverage/pt-and-ot-and-speech-language-pathology.html.

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tPA efficacy
by: dean r

tPA only completely works to restore function 12% of the time. So even if you got it, it may not have worked completely. I got it in 90 minutes, didn't completely work.
http://wrkf.org/post/more-stroke-patients-now-get-clot-busting-drug
The paragraph from there:
Alteplase treatment doesn't guarantee a good outcome. But studies have shown that 30 percent of stroke patients who get it have less long-term disability, and some patients have remarkable recoveries. Twelve percent recover with little or no disability.

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Mom lives over seas - 2 strokes within 1 year.

by Lucia Aleixo
(Eastchester, NY)

Question: My mother is 79 years old, diagnosed by-polar over 30 years ago and lives in Portugal with my father. She has a healthy diet, has lost weight but is not active. She had a TIA last February and 11 months later her second TIA stroke. First stroke affected her speech and the second stroke affected her left arm with some short term memory loss and slow speech. Both times the stroke affected her mood (became more depressed). Since it is difficult for me to communicate with the doctors over seas, what should I be asking them to do for her and give me in order to ensure that my mother is getting the appropriate x-rays, tests, re-habilitation and the best care possible? In addition when she returns home should she try mild exercise?

Any advice you can provide is greatly appreciated. I'm very worried for my mother's health and well being.

Lucia Aleixo

Answer: After having a stroke, it is important to follow up with a neurologist and also to see one's family physician on a regular basis to be monitored. Normally physicians will monitor things like blood pressure and blood work. After a patient has stabilized from a stroke and has their M.D.'s okay, it is usually not a problem to do exercise (assuming they don't have other medical complications that would limit their ability to exercise). If depression is an issue, it may be a good idea to do a consult with a neuro-psychologist or neuro-psychiatrist who specialize in working with emotional and personality disorders related to neurological problems.

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New Movement

by Susan Saxton
(Illinois )

Question: My sister now 58 had a stroke 15 months ago she could not move her left side of her body. She was in therapy for only 3 weeks because that is all Medicare/Medicaid would pay for. She has been in a nursing home since. 2 Weeks ago she starting moving her left foot slightly. This past Saturday the nursing home dropped her and she broke her Femur bone on her left side. The Nursing Home did Xrays 3 hours later and called her doctor and the doctor said get her to the hospital the Doctor gave these instructions at 2am, she did not make it to the ER until 6am. We asked the Nursing home what happened. They blamed it on my sister not holding on to the nurses neck and they said they felt her slipping and "laid" her on the floor. Needless to say we are filing a lawsuit. But now after the surgery last night, she was moving her foot a lot. You say move your foot Sissy and she was able to bounce it around. If we get a settlement I would like to put her in a rehab facility for as long as possible. Am I being too hopeful? Do you think there is a possibility of her getting any mobility back on her left side? (BTW the doctors did not expect her to live this long after the stroke) so she is a fighter.

Answer: Three weeks is a very short time to have therapy, so your sister may have achieved better recovery if she had been given more time. I don't know what your sister's experience was in the nursing home. If she was left in bed a lot or had very little stimulation, then she may be able to make some very good gains if now given the opportunity to do more. This doesn't necessarily mean she will regain movement, but if no one was working on moving with her then you don't really know her capabilities. Also, now that she has fallen, she has a new diagnoses which will allow her to have more therapy which I would definitely get her involved in. Once she gets back into therapy, you'll be able to determine how much she is moving and what she can do.

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Soooo worried

by Nikki
(Trinidad)

Question My mom had a stroke that affects her right side two weeks ago today and she's not staying put she keeps getting up and trying to walk around and falls , we can't leave her alone for a second she tries to get up ,she's sleeping for short periods at a time and these last two days I realize she's not responding like before. She was talking quite normal but now she refused to open her mouth to say anything and she doesn't seem to be aware of anything since yesterday,could it be the lack of rest is causing her to worsen?

Answer: Lack of rest or being tired can cause symptoms of stroke to be magnified. For example, some stroke patients at the end of the day may present with more slurred speech, more impaired cognition, or more visibly noticeable physical effects. However, worsening of symptoms could also signify something more severe such as a TIA, a new stroke, or conversion of the current stroke, so if her symptoms seem different or magnified such as you have described, then I would take her to the hospital emergency room. It's also helpful to monitor heart rate and blood pressure which might also give you clues about her condition. Obviously high blood pressure or irregular heartbeat would be a concern if it was present.

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MOM'S RECOVERY IS INCONSISTENT IS THAT NORMAL?

by Damon .M
(Long beach, ca)

Question: Hello, my mom is 73 years old and this is her second stroke. Her first stroke was in 2011. The doctor called it a speech stroke. h]Her mobility was not affected but her focus, cognition, memory, thinking and comprehension were affected. This 2015 stroke first affected her right leg only. She had minor weakness for the first week and no right arm problem at first, but after the first week in the hospital her right arm got really weak. After her blood pressure was stable she was transferred to the rehab center. When she was there, her balance was slightly off but she sat up on her own for about 30 mins. She needed about 50% assistance standing and walking. She would have done better but her focus was not there when it came to rehab instruction or commands. Also, she became apathetic and slightly depressed and didn't want to participate willfully. So the insurance dropped her down from acute rehab to SNF. When she was transferred to SNF, her progress went down for the first week she was there, and I got scared. I thought it was another stroke but I couldn't tell if was. The week after she started to progress again but slower than she was at the acute rehab center. It has been one month and her balance is improving, her standing is 30%, she has good days and bad. Her left arm and leg is really strong. Doctors have told me she will walk again since she had a minor stroke, but give it 3 to 9 months. Right now I can't see that. Is this normal for stroke patients to do good for two weeks and don't do that good the next two weeks?

Answer: It is not unusual to have fluctuations in rehab performance after stroke. Many factors can contribute to this including fatigue, lack of sleep, dehydration, becoming accustom to a new environment, brain changes and healing, effects of medicine, etc. Also, when an individual changes from one facility to another, the new staff have to get to know the patient. They may be more cautious and not be aware of the patient's capabilities so it may seem that the patient has declined, but in reality it could just be the new caregivers doing less complicated tasks until they know how well the patient can balance and transfer. Give it time, your mother should continue to improve, and there will be day to day fluctuations in her performance. If you noticeable a considerable change such as new paralysis or a significant change in mental status, bring it to the attention of the doctor as this could be a new stroke or other medical problem.

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Help for my son after two massive strokes age 40

by Suzen Middleton
(Byron Georgia USA)

Question: Where can I find shoes for my son that his right side is paralyzed? Where can I find help for him for his memory loss, reading, writing and loss of use of his right arm and leg? He is disabled on SSI.

Answer: There are some online stores that sell clothing and shoes that are easier to use for those that have a handicap or that have experienced a stroke. You might be able to find a shoe that works at http://www.silverts.com/show.php/list/men/footwear

As far as help with memory/reading and his arm/leg, I would get orders from a doctor for speech, physical, and occupational therapy. They have home health or outpatient therapy centers available. If for some reason, therapy is not covered by insurance or he has exhausted his insurance, I would see what programs his state offers. You are writing from Georgia. Here is a website that explains programs offered in Georgia:

https://www.olmsteadrights.org/self-helptools/advocacy-resources/item.6532-Georgia_Disability_Resources_and_Advocacy_Organizations.

I would pay close attention to the information under Physical Disabilities Services which can be found toward the bottom half of the page.

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Lifting a patient with left side neglect

by Regina
(Melbourne, Florida)

Question: My mother and 86 year old retired nurse midwife had a right hemisphere stroke and is now in rehab. I have seen numerous nurses and CNA care for her and lift her incorrectly.

Not only was her left side affected, when she fell she fractured her first and second rib and sternum on her right side.

I met with Risk Management at the facility asking if they can do anything about the poor communication with the staff and change of shift information that is supposedly carried on from one shift to another.

They moved my mother closer to the nurses station in a room with a window view and no room mate. They continue to move her incorrectly. I don't want to create animosity between staff that care for her nor do I want my mother to bear the brunt of my concerns while I am not there to watch.

I asked an RN coming on the next shift if she knew what happened to my mother because I noticed her moving her incorrectly and my mother experiencing pain in the right side that had the fractures where the RN was pressing on her while lifting her.

RN reply: I don't know

Of course I was in horror and the RN was embarrassed per Risk Management.

The CNA's the same. One goes on break another covers the shift and knows nothing of my mothers condition or the terminology.
WHAT DO WE DO?????

Answer: In facilities where I work, we have a white board where precautions and information about how to transfer is posted. I would suggest you get your own white board or just a piece of paper with instructions in large letters, and place it on the wall above her bed so that all staff can see it when they come in to move your mom. If they have a problem with HIPAA or privacy, have your mom sign something saying she wants the information posted for her care.

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Losing Driving Privileges

by Gre
(Albuquerque,NM)

Question:How do I tell a very independent brother that he can't drive anymore or fly his plane anymore due to stroke and cognitive changes in his brain.

Answer: Driving and flying a plane are a matter of public safety. I would just tell him that he at least has to check with the regulating agencies to see if he is okay to drive and/or fly. If he didn't listen then I would report his condition to the appropriate authorities who could evaluate him to see if his license needs to be revoked. I would check with your state's department of motor vehicles and whoever is over licenses for pilots which I assume is the FAA. I know you want to consider your brother's feelings, but this is a matter of human lives which is more important than feelings. There are regulations for driving and flying after a medical event, and if he drives or flies and has any wrecks or incidents, he would be in trouble. He can always take a driving exam again to see if he is safe driving. He also should report to the FAA his change in condition and find out their rules as far as flying.

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What should I be doing around the house for my paralyzed mother

by Hayley Ann Klein

Question: I'm 13 years old and my mom Debbie had 2 strokes when I was 8 months old. I have been doing everything a mother should be doing ever since I can remember. I do the dishes, laundry, cook,clean, dress her, bath her. But I got a text from my mom's friend saying that I do to much for my mom and that she needs to go to a nursing home, and that I could live with them. But I don't want to live with them, and I don't think she should be the one deciding if my mom needs to go into a nursing home at the age 45. So basically my question is,"Am I doing to much for my mom? And should she be in a nursing home now?"

Answer: If you personally feel comfortable, don't mind helping your mom, and are able to help your mom, then there is no reason why she should go to a nursing home. If on the other hand, you are overwhelmed, then I would talk to other older family members and see if you can get some help from others or outside resources. You may not have the same lifestyle as other 13 year olds, but that is okay. It just means you will most likely be more mature and able to deal with what life throws your way. Many teenagers back in the 19th century did these activities and more, so there's no doubt you are capable.

I personally think it is noble and loving what you are doing for your mother. Many people don't exhibit that kind of compassion. If you are comfortable with what you are doing, then don't worry about what others think and just keep doing what you're doing. If on the other hand, you are overwhelmed then you need to discuss it with your mom or other close relative.

As with any caregiver, you want to make sure you still have time and fun for yourself so that is where it's important to have other friends and family help. If your mom is able to discuss these issues with you, I would talk to her about it if you are feeling overwhelmed.

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Mini Stroke in the elderly.

by julia m harrison
(northwich cheshire UK)

Question: My Mum-in-law had a mini stroke 5 weeks ago, She is recovering slowly and her speech is coming back. She is 87yrs of age. She says she feels tired more but has trouble sleeping. I saw something on social media that when someone of this age has any kind of stroke they will probably have another one with in a short time and it could shorten there lives. How true is this. ? Do some people survive with the right help. She is well in other ways. Eating etc.

Answer: It is true that someone that has a TIA has an increased chance of having a stroke, but there are those that have TIAs that do not go on to have a stroke. I would just have her follow the advice of her doctors (for example if they recommend medication for high blood pressure or for blood clotting issues). I definitely wouldn't worry about the unknown. My grandfather had a stroke at age 80 and then went on to live to 98 without any further known strokes.

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Family Discourages Walking

Question: My mother had a stroke the end of June and since then has had several weeks of physical therapy. She is able to walk with assistance and I had been doing this with her every evening. Walking to bathroom, kitchen, bedroom. However, a sister who lives with her insists a nurse from her insurance company, as well as her in home physical therapist, says that I should not walk her. I am told the PT only walks her a few feet each time on his twice weekly visits. She was in the habit of walking more each evening with me, but now family lifts and wheels her around in wheelchair and gets hostile if I try to walk her, as we had been doing. Why would a PT or nurse suggest that my mother not walk, as she is capable of walking up to 150 feet? I am worried that this will adversely affect her long term recovery. My mother is happy to let them wheel her around and is now taking very few, if any steps. I am not there when the PT comes, so am unsure if she's even walking the few feet twice a week.

Answer: I would schedule to be there one time when the therapist is there, and show them what your mother is capable of doing. Then you can discuss a walking plan with them that is more appropriate and get it in writing to show your other relatives.

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Walking
by: Rick P

I would say that walking whenever possible should be the goal to do it whenever possible, my experience with early rehab, was walking for at least 200 ft per day helped to avoid anti coagulant shots (heparin) and with with time and distance walking will get better and create less dependence on a wheelchair.

A qualified in home PT should agree and can put a path forward for her that should encourage supervised walking.

Hope this helps

Rick P

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Friend of stroke victim with Thalamic Pain Syndrome

Question: I have a friend who had two strokes about 12 yrs ago and has suffered with horrible migraine type pain that he says is 24/7 365 days a year at the level of 7-10 on the pain scale. He does not remember before his strokes, and he loses a lot of memory day to day. It just slips away. I sometimes don't understand why he even remembers me at all. Our relationship when we met was intense and we talked many hours a day as he can't work and I was only working part time. But slowly he has been falling away from me and says he can't remember most of what we have done together and just recently sort of admitted he doesn't remember how he feels about me although he still talks to me almost every day and calls me pet names that he has had for me. I am having a hard time dealing with this. I want to be very helpful and caring and understanding but he is falling away from me and I have put a lot of effort into this relationship and he is forgetting it. It feels like he is being a jerk ... could he be using his illness to pull away from me or is he really losing his memory of me and doesn't remember how close we have been? I feel so bad for him, his life is mostly sleeping because he is on so many meds and can't function because of the pain. I was trying to be a helpful person in his life, I love this man, but I am heartbroken that it has come to this and wonder if I should completely stop expecting him to live up to the standards of what I deem to be appropriate behavior for keeping friendships and living up to what you have said and have acted in the past... obviously this is quite complicated but I don't want to just walk away because I care so much, but this breaks my heart and I feel like I have been taken for granted.

Answer: If it has been 12 years since his stroke, then your friend's condition is most likely not a symptom of his original stroke. It's more likely due to changes in his brain over time. He may have some dementia setting in or he could have been having ischemic events that have affected his memory over time. Based on the symptoms you describe, I doubt he is trying to use his illness as an excuse. I think he is slowly losing memory. This can be tragic for family and friends especially when a loved one begins to forget relationships and even people. I don't know who else is in his life that can help, but it sounds like he may need evaluation by a physician and that he should be monitored closely to make sure he is safe at home. If he is beginning to forget relationships and people, his memory in other areas is most likely affected which can be dangerous when living alone (e.g. leaving on ovens or hot appliances, forgetting keys or directions to home, forgetting to pay bills, etc.)

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massive stroke with bone removed to relieve pressure

Question My husband suffer a massive stroke and had his bone removed from the right side. He had a tracheotomy. He can speak words with the speaking valve and its low. He is sleeping a lot until he can't get through therapy without falling asleep. I asked him is he sleeping at night. He said No its the noise. The Rehab place is pretty quite at night. I spoke to the MD about but she just shunned me off.

It has been a month since the stroke and now he is in intense Rehab 3 hours a day for six days. He can remember things and write things down its a little shaky. He doesn't have any movement on the left side at all. He has a feeding tube and still learning to swallow. His vision is off. I know he sees a little colors. He say he sees me. I really concerned about how things are going. He has to have surgery again to place bone back.

Will he be able to survive since he already had a massive stroke? This is the second one. The first one 4 yrs 2013 now 2017. I am scared of all of this and know my husband would not want to live this way. I have to go back to work soon and night school. I am afraid that I want get a chance to visit him daily. I feel guilty. What things will he be able to do and how long it will take. I pray that he don't have to go into a nursing home.

Please let me know how to cope with a sudden change in our lives. Thank you for your help!!

Answer: I am sorry that your husband and you are going through all of this. I know many caregivers are fearful and have many questions. I cannot make any predictions regarding recovery. It's best to talk to his neurologist about the prognosis. Probably the best advice I can give you is to join a support group. Other caregivers can help answer your questions and provide support as well as make suggestions for helpful resources. Sometimes people improve greatly after stroke. Many times people are left with long term impairments, but they can learn to adjust and still live fulfilling lives. Be there for your husband for encouragement and support. When you go to school and work, you are providing means for your family to make it and for him to get the healthcare he needs so try not to feel guilty. He will go through different phases of recovery and will deal with lots of negative feelings and emotions (as will you). Don't rely solely on yourselves. Reach out to friends, family and other stroke survivors and caregivers for support to get you through this.

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rehab

by Laurie H
(Minot, ND)

Question: My husband of 62 suffered a right mca stroke - he has been an active science teacher up until november 20, 2015. We have been fighting with Blue Cross Blue Shield about covering rehab for him. He is making slow progress. has went from unable to sit to sit unsupported, hoyer lift to being able to transfer him by myself. I am just wondering if there are some avenues for rehab that we are not aware of. I have taken him home from a nursing care/rehab facility. He is unable to walk, has some movement in left leg, nothing in arm. Has sensation and feels pain in both arm and leg. I will not have him living in a nursing home, and have taken him home. BCBS has denied coverage in an inpatient acute rehab. He has hopes of returning to teaching this fall. Do you have any advice. We live in Minot ND. with limited access to stroke rehab. Would be interested in some trials if he would qualify also. We feel like we have been given up on and sentenced to a life in a nursing home!!!

Answer: I know you said that inpatient was ruled out by insurance, but have you checked into both home health and outpatient therapy options? I would start by looking into those if you haven't already. Outpatient would be preferable due to access to more equipment, but I know that is not always an option for some people. If insurance resources are limited, you might hire a therapist to come out for a few visits (you can do private pay if insurance won't cover it) and have the therapist set up an exercise program that you can follow with your husband. Then periodically, you can have the therapist come back and upgrade the program as needed (this assumes you have time to work with your husband yourself). This option would allow a therapist to at least design a home program for you and get you started if you can't pay or insurance won't pay for regular therapy visits.

There is also a lot of information online including this website that gives you stroke rehab and exercise information that you can use at home on your own. I would also check with your state and see if there are any programs available. Many states have programs for persons with disabilities that want to return to work including providing therapy and making adaptations so one can return to work. Here's a link to the ND website for this:

https://www.nd.gov/dhs/dvr/individual/index.html

Good Luck!

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