Aphasia Survivor Worried

Dear Joyce,

My stroke was over 10 years ago, and though my cognitive skills are sharp and my stress is low, my aphasia is slipping slightly. Should I be worried and anything to do to keep the aphasia level from dropping?

Worried in Pennsylvania

Dear Worried, 

By "slipping slightly," I believe you mean that aphasia is more prominent. 

It sounds like Expressive Aphasia when people know what they're trying to convey but cannot communicate effectively. It is the inability to access ideas and thoughts through language, not the ideas and thoughts themselves,  that is impaired. 

Some therapy strategies include listening to a recording of yourself speaking, repeating and rehearsing phrases, and reading out loud. In that way, you'll know, over time, where the problems are.

For example, I had trouble with saying any words with the "scr" blend, like in prescription and subscription. I said the words over and over, and now two years later, even though they're not perfect, I can say those words and be understood, and not have a quizzical look by the listener as I had in years past. 

One Strokefocus member says, "Most important: keep trying! Ignore anybody who tells you that in x number of months, you've reached your limit on improving." 

Finally, reach out to the National Aphasia Association (https://www.aphasia.org/aphasia-id-card/). Carrying an Aphasia ID is a great way to lessen communication stress. You can customize and print an ID card for free by following the link provided below. 

The National Aphasia Association says, "You can then present the card when buying groceries, paying for gas, meeting new people, or in any other situation when you think a person might need to be informed that you have aphasia."

Click on the link aphasia ID card to customize and print your own card at no charge. 

Please let me know how you're doing, and best wishes with your aphasia and its improvement.

Brought to you by Strokefocus and one of its associations, Northwest Brain Network

Triggers Understandably Bother TBI Survivor

Dear Joyce,

I have noticed that my high and low points are more noticeable after my TBI. As a result, a rather small health issue seems to trigger other parts of the body. For example, if my leg is sore, it triggers my headache and then, it triggers an upset stomach. Is that common to people with TBIs or is it unique to me? 

Agitated with Life

Dear Agitated,

How long ago has it been since you had a routine physical? Start with your Primary Care Physician (PCP). You might learn of new problems you just didn't consider. Aside from your visit to the PCP, I believe most people who suffer a brain injury--like stroke and any kind of TBI--are more attuned to their health and how the body reacts.  

You might try this recent article from the National Health Service in England that you may find interesting:
https://www.nhs.uk/conditions/severe-head-injury/complications/

Bottom line: The brain rules the whole body, and the effect of a brain injury will depend on:

• the location of the injury 
• the severity of the injury
• the type of injury 

One thing for sure: you aren't alone. 

Brought to you by Strokefocus and one of its associations, Northwest Brain Network

I Hate Eating While Speech Therapist for Stroke Watches

Dear Joyce,

I'm so happy that the rehabilitation hospital stay had ended. Aside from all the other things after my stroke, the one event I disliked the most was the speech therapist watching me eat several meals. The doctor was afraid that I couldn't swallow my food. I got nervous and anxious when she stared at me. 

I couldn't tell her to leave for two reasons: I couldn't talk for 5 weeks after the stroke and she watched me per the doctor's orders. I'm enjoying being home, without the "watcher."

Sincerely,

Happy at Home

Dear Happy,

I can appreciate you don't want to be observed as your eating every morsel of food. But there's a very good reason fot it. 

The term "aspiration" is when something enters your airway or lungs by accident. Aspiration can happen when you have trouble swallowing normally, and this event can cause serious health problems, such as pneumonia or choking. So the SLT (Speech Language Therapist) is the best one to evaluate. 

I'm so happy for you, now that you're home, to begin your life again. It can never be exactly like the old life before your stroke, but try and make it a good life. Like my own life, my place on earth is better than before. 

Brought to you by Strokefocus and one of its associations, Northwest Brain Network

After Stroke, Therapists and Aides Are Too Busy to Train on Toileting

Dear Joyce,

 At my rehab hospital, OTs evaluated how stroke survivors get on and off a toilet with the help of a grab bar. Aides dealt with all other toileting skills. Aides have large caseloads, so to stay on schedule and they do everything for their clients. Toileting after a stroke survivor goes home can be distressing when you learn all safety issues were not addressed.

Signed,

Have Questions about Toilet Safety

Dear Toilet  Safety Person,

Right you are! Aides have a big caseload and so do Occupational Therapists (OT). So you have to contribute your own two cents!

There are basic things one should know and have when going to or getting off the toilet:

1. Wear sweatpants or other type of elastic pants so you don't have to struggle with going to the toilet or getting off and safely back to your wheelchair or your place of origin. 

2. Have a hand rail or grab bar on the strong side if the toilet is too low to accomodate you.

3. A commode (without the bucket, of course) over the toilet is a way to make the seat higher without replacing the toilet. 

4. The bathroom ranks as one of the top places for falls. So get yourself Life Alert or something like it. Over the years, I slipped and fell off the toilet twice. Life Alert to the rescue! It costs 50 bucks or so, but everybody with a brain injury should have one.

As the therapists say, safety is their first concern, and falling isn't a picnic either! 

Here the photo right after one of the falls involving the toilet:

Right after

Two months later

Difference, huh? A shout-out to Arnica gel for making my banged up face and neck heal quickly! 

Brought to you by Strokefocus and one of its associations, Northwest Brain Network

Mother Has Difficulty Helping Father With Stroke

One of our members from South Africa submitted the following:

Dear Joyce,

My dad who is now 71 years old had a stroke and heart bypass last year. He is fully mobile and in good health. He is just extremely difficult and makes life very difficult for my mom who is taking care of him. Any guidance is greatly appreciated. 

Signed,

On Behalf of Mother

Dear On Behalf,

Was your father always this way, or did he get difficult after his stroke and heart bypass? If it was before those health complications, you or your mother might suggest he go see someone he respects like a psychologist or clergy or someone in social work as guidance. Or have your mother go and see someone, too, if that helps her.

If the problem started after his health complications, give him time to get accustomed to the activities he has trouble doing or can't do anymore. 

It took me several years to realize my limitations. For example, I have trouble walking a distance with the cane so I can't zip in and out like I used to. It was stressful, though it took time to adjust. Give your father time to adjust, too. If he doesn't adjust soon and still makes taking care of him difficult for your mother, use the psychologist, clergy, or social worker as your guides. 

Again, your mother can go to see those people, too, to discover if she's doing something that is annoying your father, like lack of patience or screaming at him.

Best wishes to both of them. 

Brought to you by Strokefocus and one of its associations, Northwest Brain Network

Confusion About Ending the Agony

Dear Joyce,

I had two strokes, the first in August 2013 and the second during back surgery in late 2019, and I now, 10 months later, I am still feeling the effects of depression. At times and infrequently, I want to end it all, but other times I even laugh at someone's joke or funny anecdote. It's the former, wanting to end it all, that makes we worried that somehow I will. 

I don't have health insurance for a psychologist since I thought that would be your answer. Help is needed, and the sooner the better. 

Signed,

Hapless Stroke Survivor

Dear Hapless,

Don't fret. I was going to suggest an impartial psychotherapist, but without insurance, I have other ideas, too. A licensed social worker is a close second to build up your self esteem and give your life worth where you won't have thoughts “to end it all.” A member of the clergy would do as well. Please investigate your local hospital and see if they have services. Just recognizing your thoughts as a last-resort action shows that you know it's not the way to go. 

Best of luck, Hapless.  And hopefully, the next time you write to me, perhaps you will sign Happy Stroke Survivor!

Brought to you by Strokefocus and one of its associations, Northwest Brain Network

Anger from Stroke Encompasses This Person

Dear Joyce: 

I am 32 had my stroke only a year ago, but I still have an angry mood. I argue with my wife, mother, and friends when I know they mean the best for me. Does this anger go away or will I have it forever!

Signed,

Angry is LA

Dear Angry in LA,

The answer is complicated, and some people get rid of the anger quickly, while some take longer. But no, you won't have it forever. 

I have a theory: the better your life was before the stroke, the longer I will take you to get rid of the anger. There's a reason for this theory: Let's say you enjoy your job. You just got a promotion. You go shopping on the weekends and buy another new purse or an article of clothing. All is right with the world, and in a split second, no longer. You have a stroke, and everything goes in the reverse immediately. You no longer have the job, your promotion bit the dust, and you are not able to browse in stores as you once had. 

Only by looking back, you realize the anger is going away. But by asking your question, and realizing that an anger mood is not where you want to be, you have an awareness and are cognizant of the fact you don't want to be angry any longer. Good luck as your anger is slowly losing its grip on you!

Brought to you by Strokefocus and one of its associations, Northwest Brain Network

Missing the Treadmill After Rehab

Dear Joyce,

I'm two years into recovery from a stroke and I miss the treadmill that I used in the hospital. I had Physical Therapy while I was in the hospital for a month but no more since. Should I buy one or wait longer? And how long?  I still have deficits in walking and sitting.  

Signed,

Missing the Treadmill

Dear Missing,

Yikes! No physical therapy in almost two years with deficits? Leave it to the expert for what you are able and not able to do. By expert, I mean a Physical Therapist--at home or as an outpatient—to do an evaluation first before you buy one. Maybe you will eventually be able to do the treadmill, or maybe you can use one now, but first things first!

After the evaluation, tell the Physical Therapist of your longing to do the treadmill, and the PT will reply honestly. Going without physical therapy for almost two years and then buying the treadmill and using it are unacceptable ideas without the evaluation.

Brought to you by Strokefocus and one of its associations, Northwest Brain Network

Perplexed about Stroke and Life

Dear Joyce,

I am 2.6 years post stroke and no day is the same. There are many challenges and situations that arise, so I would like to explore all situations here. Survivors, what do you think?

Signed,

Perplexed in South Africa

Dear Perplexed,

I'm so glad you asked that question because no day is the same. It changes for me, too, 11 years later! Sometimes, I urinate in the morning three times in a row as a result from my stroke for urinary retention. In the 11th year, the stomach pains were finding me doubled over. It turns out, after many tests, that GERD (Gastroesophageal Reflux Disease) from too much acidity had spiked suddenly, so I changed my diet and I am well now. Yes, every day is a new adventure with stroke and, if you get a handle on the reasons, you will come to accept it as the new normal.

A Strokefocus member, Eugene Sekiguchi, adds, “My stroke was in January of 2011. The treatments available now seem to be more numerous than then and a bit confusing. So I think of that. Occasionally, I wish that I had the stroke at a different time. But now is now. The daily challenges of each day are quite different from day to day. I think that hourly or even changes by the minute are baffling, but they all seem to pass.

“My long term goals are to erase ignorance about (normal) aging and put into context strokes, TBI, and other brain injuries. Along the way, prevention, what to do and when to do it are questions that will be answered as time passes.”

Brought to you by Strokefocus and one of its associations, Northwest Brain Network

Emotions, Stress Consume Reader After Stroke

Dear Joyce, 

I often read your helpful information, but I never saw something that I am going through. From time to time, I become emotional and feel like crying or am impatient after my stroke, which causes a lot of stress. Will those feelings go away?

Signed,

Emotionally Stressed 

Dear Emotional, 

Remember that crying, impatience, and stress are typical early on. My stroke is 11 years old, and for the first 2 years, I had those same emotions. They’re part of the grieving process that we all go through as stroke survivors, and will become less and less in time.

Establishing a one-on-one relationship, preferably with another stroke survivor who’s not “new” to the game, could be beneficial. Keep in mind that stroke survivors just can’t be rushed into a support group setting because someone else thinks it would be a good idea. 

When discussing your question, another stroke survivor in the Northwest Brain Network said that it helped him to focus on things he gained before stroke--such as job experience or hobbies--rather than the challenges after stroke. 

Brought to you by Strokefocus and one of its associations, Northwest Brain Network