Dear Joyce: Unneeded Weight Gain For This Stroke Survivor During Pandemic

Dear Joyce,

As if life isn't bad enough, I gained 18 pounds during the pandemic because I'm going to the refrigerator more often than I should. I live in an apartment and the refrigerator is right there! The problem is, I had a stroke 6 years ago and, from being in so much, it was an unneeded gain.

I can't think of anything to do other than to stuff my face. I need some motivational advice because the 18 pounds makes my walking and talking sluggish.

Fatter in Frisco

Dear Fatter in Frisco,

Most people in my "bubble" gained weight during the pandemic. What did I do when I put on several pounds and then some? 

Try this, compliments of my son who adheres to it every day: I made myself a schedule. Every day from 6pm to around midnight, since most of the eating comes then, I have these "things" to do:

6-7: enjoy leisurely dinner and nothing after; 7-8: reading time; 8-930: writing time when I attempt my 3rd book; 930-1030: answer my email; 1030-11: watch political YouTube videos; 11-12ish: take my meds and bathroom stuff.

Only you can make a commitment to follow the schedule, but it works for me. You have nothing to lose but pounds! Let me know how it works for you. 

Why Do I Have Post Stroke Fatigue?

 This question was asked by me to the Strokefocus.net Forum and the answers come from my researching Post Stroke Fatigue. I believe you will find this information useful. So here goes:

Dear Me: 

I don’t want to take a nap. I need to take a nap. Why is that so?

Need, Not Want

Dear Need, Not Want:

In the world of acronyms, it’s called PSF, or Post-Stroke Fatigue. PSF is a given post-stroke. So what is the solution? Knowing that you need a nap, there are some suggestions on management. Follow along and track the 1) how 2) who, and 3) what respectively in these 3 recent studies.

The How

In the Chinese Journal of Physical Medicine and Rehabilitation, Yan et al wrote:

Issue: How you breathe makes a difference.

Findings: “Diaphragm training can significantly improve motor function and the daily life of stroke survivors. The mechanism may be related to improved respiratory function and decreased the severity of fatigue.”

Translated from medical jargon, that means you might take shorter naps, or even a 15-minute power nap, if you breathe the correct way. I took an armchair yoga class several times and each time, the instructor went over breathing: a count of 4 breaths in (inhalation), a count of 6 breaths out (exhalations). This breathing exercise is good for other things, like alone time for meditation and frustration moments. I try to do that breathing pattern all the time, and when I forget, I know, so I get right back on track.

The Who

In the Journal of Psychosomatic Research, Cumming et al discovered a couple of things, among others, that might interest you:

Issue: Confirmation of link between FMS (Functional Movement Systems) and disability and depression

Findings: "Post-stroke fatigue was associated with lower limb mobility, while post-stroke depressive symptoms were associated with cognitive performance."

Findings: "The current results underscore the importance of recognizing fatigue clinically, and the need to understand the underlying pathophysiology. Its importance is also highlighted by a high prevalence and persistence, remaining elevated in one study at 6-year follow-up." 

The What

In Lenus, The Irish Health Repository, Khan and Delargy found the following:

Issue: Rehabilitation can be severely affected by PSF

Findings: “Post-stroke fatigue is a frequently reported symptom by stroke survivors undergoing rehabilitation. This cross-sectional observational study was undertaken in a rehabilitation facility to look at its prevalence and relationship with various variables like personal factors, type of stroke, social context, hemispheric involvement on CT scan and mobility status. The results showed that PSF was present in 83% (25 out of 30) of the patients included in the study.”

Predictable, for sure. But when the medical researchers say it, you REALLY believe it. Please show this article to your family and friends if they say something negative like, “Get up already” or “Stop being lazy.” PSF is a real thing.

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

Scared About Losing Part of Your Vision After Stroke

(This next request comes from the Strokefocus.net Forum. Though it wasn't addressed to me specifically, the answer  is useful and I believe I should share it).

Dear Joyce,

What can I do to improve my peripheral vision? I phoned my opthalmologist (who did my lens replacement some years ago) and was told nothing can be done. Is this correct? 

Scared About Losing Peripheral Vision

Dear Scared,

I suggest you read Dr. Heidi Moawad article. She is a neurologist and expert in the field of brain health and neurological disorders. The link is here: https://www.verywellhealth.com/loss-of-peripheral-vision-3146459

The bottom line? It is often common for a stroke to cause a visual field loss because the neural pathway between the eyes and the brain that clarifies what we see is a long one that can definitely be damaged by a stroke. 

Look for a second opinion, too. All doctors know different things but, as I say, no doctor knows everything. Perhaps there are exercises you can do to regain that loss.

Though loss of  peripheral may be permanent for some people, Dr. Moawad says, "A stroke that causes a loss of peripheral vision can improve over time as the stroke heals and stabilizes." 

We'll leave it on that very encouraging note! Write again if you regain some or all of your peripheral vision. We'd love to hear about your success. Best wishes!

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

Hope for Stroke-Paralyzed Arm?

Dear Joyce,

What are the chances of my arm, that hasn’t move at all after a hemorrhagic stroke, getting better? I've been doing exercises on and off for 5 years and I occasionally fell for lack of balance.

I was told that I have a three-month window from the date I had the stroke for improvement to happen. Is that the standard now?

Concerned in Dallas

Dear Concerned,

Most occupational therapists who were recently trained starting about five years ago and later don't say that phrase anymore about windows for improvement. The reason? It's not necessarily true. 

Some people improve constantly whereas others, no matter what they do, improve slowly or, at some future point, stop improving. Putting a very narrow, spoken timeline for improvement is just harsh and takes away the motivation to improve. That's why a common saying is, Don't give up!

Falling in the biggest barrier for improvement. Aside from getting the initial shock, falling takes people back a step or two. Then people try again with a few days rest but, for example, they aren't where they were a month ago.

The most important thing you said: "I've been doing exercises on and off for 5 years." Keep doing the exercises that have been given to you constantly as long as you have zero chance of falling. Consistency will sometimes pay off! Or maybe you're at that point where improvement has stopped. 

If you have insurance, or can afford to pay out-of-pocket, see an Occupational Therapist (OT) another time. Maybe there are exercises you haven't tried yet. If it's possible, I found that a variety of OTs can have a different spin on the same function.

Time will tell.

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

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