Sunday, January 26, 2020

Finding My Own Way


From the winter edition of StrokeConnection Newsletter:
Finding My Own Way

Advocating for my own care has been my toughest recovery battle.
I am 52 and suffered a cerebellar stroke at 48. The stroke arrived with a violent headache, vomiting and vertigo. I passed the F.A.S.T. test, so my family ruled stroke out. Hours later, I was in an ambulance and was admitted to my local hospital.
I vividly remember when the doctor told me I’d had a stroke, a left inferior cerebellar infarct. I didn’t understand a word of it. As he turned to leave, I asked: “Did I have a bleed or a clot? Where in my brain? What does this mean? How did it happen? Could it have been from stress?” I didn’t know what I didn’t know, but I needed answers.
I was sent home five nights later. I never saw a neurologist. There were no supports offered at discharge other than six weeks of home physiotherapy — no neuro rehab, no paperwork to read, nothing to explain what had happened to me or what to be mindful of. I was to follow up with my family physician.
A couple of weeks post-stroke, I visited my doctor with a list of questions. I still walked and talked like a robot; he said it would pass. I asked about seeing a neurologist, but he assured me that if a neurologist were needed the hospital would have referred me. I was sent on my way with assurances I’d recover. I believed him when he said that time would make me better.
Starting at three weeks post-stroke, I initiated my own return-to-work program. After six months, the cognitive fatigue was starting to lift, but other deficits became clear. Noise sensitivity was the biggest struggle. I wasn’t able to understand fast speech or differentiate background and foreground noise, so 11 months poststroke I visited an audiologist who suggested a central auditory processing exam. It identified several deficits that validated the noise problems I’d had since the stroke. Now I had tools to help myself.
The audiologist noted I had nystagmus (rapid eye movement). She was shocked I didn’t have a neurologist and recommended one. That’s when I realized I had to be my own advocate to get help.
That first neurologist told me his focus was only stroke prevention and encouraged me to seek a referral elsewhere. That led me to advocate for a referral to the Chief of Neurology at the hospital. Within a month, I had my first appointment where I’d been a patient 15 months prior. It led to more answers.
Since my stroke, I have sought many tools and supports for my recovery — from monthly massage therapy and regular physiotherapy for balance to occupational therapy for memory and executive function struggles. I sought tests for my hearing and speech and vision issues. I also got therapy for swallowing problems, proprioception (recognizing where one’s body is positioned in space) and balance and binocular vision retraining. And I had a neuro-psych assessment to tease out where my brain has difficulty.
In 2017, I joined several online support groups. They’ve been a great resource to fill in the gaps when I don’t know what I don’t know. I now have a place to ask questions and get responses from other survivors who’ve been where I am and to share information about what I’ve uncovered on my journey.
I hope to positively impact health outcomes for others. I’m grateful for supportive friends, family, coworkers and the online communities I am a member of. They all accept me where I am in my recovery and encourage me to seek new ways to improve.

Monday, January 20, 2020

Life Must Be Lived in The Present


Phil Bell is a retired pastor, University Baptist Church, and a stroke survivor. He continues to write his Street & Steeple articles for his local newspaper. I believe this is good therapy for him, and reading his work may be good therapy for you, too.
Street & Steeple for January 10, 2020 

By Phil Bell, retired pastor, University Baptist Church

“Life Must Be Lived in The Present”

We are well into the new year. Back in the day when we wrote a lot of checks this would be the time when I’d get frustrated with myself for having too often to having dated the check with the last year, only to scratch out the year and have to replace it with the current one. Maybe you were one of those, also. 

I know people who, the day after a time change, spend the day mentally calculating what the time would have been the previous day. That may explain to themselves why they’re hungry or not, but no matter what time it was yesterday they will be eating by today’s time. 

We do not have the option to live our lives in yesterday or tomorrow, no matter how much we want to. Most or all of you know I suffered a massive stroke just over eight years ago from which I am still paralyzed on my entire left side, unable to walk nor drive a car. Interestingly enough, when I dream it’s usually with my body being whole! In one recurring dream I am driving through a McDonald’s drive thru ordering either a bacon, egg, & cheese biscuit with hash browns, and a small coffee or a breakfast burrito with hot sauce, hash browns, and a small coffee. 

I don’t know if that dream is only of my past or, hopefully, of both my past and my future! What I do know is that my present, in which I live is, regrettably, a whole lot more nutritious. It is either grits, juice, meds, toast, and milk or oatmeal, juice, meds, toast, meds, toast, and milk with me making my own instant grits or oatmeal at home. Actually, that’s not so bad. I can remember, just after my stroke, not being unable to eat at all, with a feeding tube down into my stomach. 

You see, I like my present far better than that past, but not as much as further back when I would drive through McDonalds on my way to my church office! (Please don’t tell my wife, Nancy about that. She doesn’t know that I did it!) Whatever my desire is about the time in which I live, the only option is to live in the present, as is yours. I don’t know what your life is like nor whether you long for the past or for the future or are fearful about it, but I do know that if you’re facing the future without a relationship with Jesus, you have a right to be worried. I don’t just mean whether you’re headed to heaven or hell, but I know He could help you in the present and for the rest of your life. Neither Nancy nor I could get through a day without depending on God to strengthen and provide for us! You can have such a relationship, too. Talk to your pastor or give me a call if you need help. 

Actually the Bible has a good deal to say about living in the present. You may be aware of Ecclesiastes chapter three or remember the sixty’s song by the Byrds, “Turn, Turn, Turn” from which it was taken. Its message is that there is a season and time for every purpose under heaven, meaning to live in the season in which you are. In Matthew 6:34, Jesus says not to be anxious about tomorrow because there is enough evil for today and tomorrow will take care of itself. Way back when God spoke to Abraham, He identified Himself as “Yahweh,” written in Hebrew as “Yhwh, meaning “I am.” I think, not only did He mean I always have been, not a created being, but meant, also, I am the God of the present and at work in the world today! My point is that you and I must embrace the present because that is our only option and where we live. 

I do not mean that you should not try to improve your situation, if possible. For example, I used to love fishing and thought it over after my stroke when I could not hold my rod in my left hand or use that hand to retrieve my lure or fish. However, my son, Andy, found, bought, and gave me a holster which attaches to my power wheelchair beverage holder and fits my rod. Now I can cast, retrieve my lure, get a bite, and reel in my huge catch. Admittedly, my “huge” catch so far has been a size which would not feed a single person without Jesus performing a miracle! 

My point is that you, no matter your situation, can make the most of your present and, with God’s help, thrive. Besides you have no other choice except to be miserable. I know, I’ve been there, but am not miserable now, thanks to God and my wife. In other words, life must be lived in the present, why not make the most of it? 

Phil Bell, retired pastor, University Baptist Church

Saturday, January 11, 2020

Clothing That Works for You


Clothing That Works for 

Getting dressed and undressed — a daily task mostly taken for granted. But after a stroke, the garments we wear can demand effort and attention that forces unwelcome choices: Do I have to give up tailored pants for sweatpants? Will I need someone to help me in the bathroom? I’m invited to a wedding and I can’t put on clothing that is appropriate for the event.
There are four common challenges associated with dressing after a stroke:
  • managing dressing with one hand
  • grasping and manipulating fasteners
  • moving garments over less mobile body parts
  • accommodating orthotics/braces
These challenges may exist alone or in combination. There are two common responses to these challenges: wearing simple clothing and seeking assistance. Simple clothing includes garments that stretch and have few or no fasteners. Assistance may be necessary for clothing that is less forgiving or to manage tricky fasteners. But independence should not require a wardrobe of sweatpants or having to sacrifice personal style.
An alternative approach is to modify the demands of dressing to match one’s abilities while maintaining personal expression and style.

Dressing tools

Long-handled shoehorns, reachers and dressing sticks are often the first dressing tools encountered after a stroke, especially during rehabilitation. These are tools that extend reach to manipulate garments around the body or over limbs. These are also tools to manipulate fasteners. A button hook enables the user to fasten and (with a bit more effort) to unfasten buttons with one hand. Most of these tools are available online. Some are available in medical supply stores or drugstores.
The tools listed above can be used with one hand. Tools designed specifically for one-handed dressing include the Bra Angel™, for donning and fastening a bra and Norco™ Easy-Pull™ Sock Aid, for donning socks.

Adapt Existing Garments and Techniques

You may already use this strategy. For example, if you leave some buttons always buttoned on a skirt or shirt so you can pull it over your head or feet, you’ve adapted the garment and technique to fit you. Some adaptations require basic sewing skills (yours or those of a helper or a tailor). What follows are some simple, low-cost adaptations to garments that make dressing simpler and easier.


Buttons: Re-attach buttons using elastic thread, so buttons can remain fastened while garment is pulled over the head or over arms (cuff buttons). Another option is to sew buttonholes closed, sew the unused button over the buttonhole and replace with hook and loop or magnetic fasteners (like Velcro®).
Snaps: Replace with magnetic or hook-and-loop fasteners.
Zipper: Attach a small ring through the hole in the zipper pull so zipper can be grasped by hooking a finger into the ring/loop.
Shoelaces: Elastic shoelaces include single straight elastic laces that are tied and curly elastic laces that stay in place without being tied.


A common post-stroke challenge is preventing pants from falling down while tucking in a shirt or manipulating fasteners. This can be especially difficult when adjusting clothing for toileting. This task can be managed with a simple “DIY” tool: two small, spring-loaded clips attached by about 12 inches of cord. Before unfastening the pants, attach one clip to the front hem of the blouse or shirt and the other to the front waistband of the pants. When the pants are unfastened, the front of the pants will not fall to the floor. The length of the cord can be adjusted to the stature of the user.
An alternative to the clips and cord is to sew a loop of cord or ribbon inside the waistband on the affected side. The loop can be hooked over the affected hand or wrist to keep the front of the pants from falling away when the pants are unfastened.

image of long-handled shoehorn
The long-handled shoehorn is among the essentials for dressing after a stroke

Purchasing adaptive clothing

zipper with pull ring
Adding a simple ring to a zipper pull makes it easier to grasp
Adaptive clothing has been available for many years. Early producers focused on clothing for individuals using wheelchairs or prioritized ease for caregivers over style for the wearer. The next evolution of adaptive clothing focused more on function and style. However, stroke survivors have not always been aware of these products or their sources. Producers have depended on catalogs, websites and word-of-mouth to market their products.
Recently, larger clothing manufacturers and retailers have started to recognize both the need for adaptive clothing and the significant market for such clothing. Target, Nike, Tommy Hilfiger, Zappos and others have introduced lines of adaptive clothing or footwear. Simultaneously, some clothing manufacturers have developed products that are more “universally” designed. These items are targeted to the general public but have features that make them a good fit for the needs of stroke survivors.


The large companies that have introduced adaptive clothing are targeting a broad market, including those with sensory sensitivities and wheelchair users. Not every item will meet the needs of stroke survivors. But many of these lines also feature simplified fasteners and ease of access, all with a focus on style. The products are featured on an “adaptive” section of these companies’ websites. Some include filters or menus to tailor the search to specific needs, such as easy closures, ease of movement and seated wear (Tommy Hilfiger) or magnetic closures and “AFO friendly” (Zappos). Adaptive clothing is available for men, women and children. Currently these companies are selling their adaptive lines via websites.
Man modeling a no-tuck shirt
No-tuck shirts are a time-saving option for both men and women.


Some companies have developed garments and accessories that are not marketed as “adaptive,” but the design reduces some of the demands of dressing. For example, designing men’s shirts to be worn untucked may be a way to blend style and comfort, but it also reduces some of the demands of donning and adjusting shirts with long tails. A footwear manufacturer producing shoes with removable insoles also may produce an AFO-friendly shoe.
The production and marketing of stylish clothing for people with varied abilities is still in its early stages. But it has begun. Visiting the websites where these items are marketed, giving feedback and purchasing the items sends a message to manufacturers and retailers that this is a significant market. The need for adaptive and universally designed clothing, clothing that works, is real.