balance Archives - Jumbledbrain

Guest post: Mark Whelan on starting again after a brain injury

Michelle #jumbledbrain — Wed, 12 Sep 2018 12:33:48 +0000

I do like to feature the stories of others as it gives more perspective than just my own. As we all have very different journeys, by covering more stories I hope that more people can relate to the issues raised. Today I would like to introduce you to Mark Whelan who is one of the most active and supportive members in my Facebook group, Brain Injury & Mental Health Support. He is often trying to help others who are trying to work out how to go about starting again after a brain injury.

My name is Mark Whelan. I was born in New Haven, Connecticut and grew up in Branford, Connecticut. (An interesting fact about Branford is that in 1974 Connecticut Hospice opened there, which was the very first Hospice ever in America!) Currently I live in Old Lyme Ct, which is best known for its community of American Impressionist painters.

I was a very successful Accountant before my TBI, and I’m very happily married to my beautiful wife of 33 years, Monica. We have 2 adult children that are very successful and we are so proud of. Life was good and I now realise that I took a lot for granted.

On Halloween of 2016 everything changed. In the middle of the night I fell down the stairs and suffered a traumatic brain injury and a subarachnoid haemorrhage. My wife didn’t hear me fall, but she heard me moaning though. I had made a huge hole in the staircase wall showing the impact! My wife called an ambulance and I spent 6 weeks in the ICU at Yale New Haven Hospital in and out of a coma. I then was transferred to Gaylord Rehabilitation in Wallingford and spent another 6 weeks there. I can’t remember hardly anything from my time at Gaylord, except many hallucinations and nightmares. Next I was transferred to Bridebrook Rehabilitation in Niantic, Connecticut. From Bridebrook I only remember clearly the physical and speech therapy. Also, they made recommendations for my return home. I was still using a walker and a gait belt.

In the beginning of March of 2017, I returned home. First I was in a wheelchair, then a walker and finally a cane. My brother in law installed a hand rail for 3 steps we have from the dining room to the living room. Also, my wife prepared me a nice bedroom DOWN STAIRS! I also had in-house physical, occupational and speech therapy. Fortunately I had a outstanding home health aide for about a year from Companions and Homemakers.

As of father’s day June 17th of this year, I ditched the cane! I’ve had several vision, physical and occupational therapy. Currently I just have physical therapy twice a week. Like I said, I took a lot for granted. Mostly my freedom to be able to walk, talk, etc. without giving it a second thought. I have been blessed with a loving family, lots of friends and I’ve had wonderful Doctors and caregivers. My relationship with my wife has been tested but we just celebrated our 33rd Wedding anniversary so I think we’re going to do fine. Currently, I do not drive but have many friends, mostly from my church who have helped me out tremendously.

The Brain Injury Alliance of Connecticut gave me a useful document at my first support group meeting for me to carry with me at all times. Basically it summarises what I would like the public to know about brain injury survivors. It read:

The purpose of this card is to educate you on some of the symptoms of brain injury so that you will understand, if necessary I am not being intentionally difficult or hard to get along with. I am not mentally-ill, I am a brain injury survivor.

Because my speech, vision, hearing and/or sense of understanding is impaired, I may be unable to hear or respond to your questions clearly. My coordination and ability to control my muscles might be impaired so might not be able to perform or complete physical tests occasionally requested by law enforcement agencies.

My injury may also cause me to laugh or cry excessively. I may be restless and exhibit signs of agitation and anxiety. My responses might be very slow and deliberate. If I’m having difficulty with short or long term memory, I may be confused, disorientated or easily angered. I may also have excessive reactions to confrontation.

I will work with you to the extent I am able to and ask that you contact the persons listed on the back of this card as quickly as possible.

I would not change a thing of what I’ve been through! Today, I choose to view my brain injury as a blessing. It’s like starting over again!

How difficult have you found it to be starting again with a brain injury? What advice would be have for others who are trying to find their way following a brain injury?

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6 steps to improve your gut following a brain injury

Michelle #jumbledbrain — Fri, 22 Jun 2018 13:43:57 +0000

Many people live with an undiagnosed brain injury for years, or even a lifetime. For me it was a year before I was given a formal diagnosis of a diffuse axonal brain injury. (Even though my initial scans showed a bleed at the base of my brain, the doctors still didn’t say I had a brain injury. They just gave the impression that because the bleeding stopped without surgery it was nothing to worry about.) Whilst my progress has been good, my gut is beginning to complain about it all.

The brain and our gut are actually very closely linked. For example, all you have to do it think about what yummy food you’re going to have for dinner to make your stomach release it’s juices in eager anticipation. Also this is why we say “listen to your gut” when we are referring to intuition. Feeling nauseous about something or experiencing butterflies in your stomach, are all because of what your brain is thinking.

But recently I have found something even more weird is going on. Usually they said it takes around 2 hours for your stomach to digest your food. But I can find that around this time I get bloated and a few more hours later the clamps start. Finally, around 10 -12 hours after eating a meal, I vomit it back up and (apologises if this is this too graphic) you don’t need to be a scientist to know what food I had eaten earlier. Basically my stomach hadn’t even tried to do anything with it. (I’d fire that lazy good for nothing if I could!)

Whilst I am having this investigated and nothing has been confirmed yet, I can’t help but suspect my brain injury is playing a part in this. Where I had the bleed on my brain, it irritated my spinal cord. This meant for months I had to try to retain my internal organs how to work because they sort of forgot. So now I think my gut has taken a backwards step.

Anxiety, depression and stress all can have a detrimental effect on your gut’s behaviour. However, I am better on all these fronts than I have been for years. My car accident which caused my brain injury, happened 3.5 years ago. In that time I lost my career, many friends, my mum died in a tragic accident, my dad struggled with Alzheimer’s and bowel cancer, finally passing away last October. So right now I’m feeling much more stable after surviving all of that.

However chronic stress can cause inflammation, leading to autoimmune disorders. I’m wondering if this has now happened to me. So I have been looking into what I can do to make things a little easier on my gut whilst I wait for a formal diagnosis.

6 steps to help stressed guts

Probiotics – These are the good bacteria that help break down your food into energy. They are found naturally in yogurt and other fermented products. Or you can top up with pills.
Sesame seeds – They are rich in an amino acid call tyrosine, which is great for the hormones in your brain. It has a balancing effect on most of them, but give your “feel good” hormone, dopamine, a real boost.
Vitamin B6 – This vitamin helps reduce stress hormones and can treat mood disorders like depression. A great source for this is Shiitake mushrooms.
Reduce the amount of processed food you eat – Unfortunately they often contain a lot of artificial sweeteners which our bodies struggle to cope with. I have always been guilty of having too much of these and so I will have to change that now.
Move away from gluten – If you have irritable bowel syndrome, gluten is a no go area. This is because it can cause bloating and constipation. But even if you don’t, it can affect the area of the brain that deals with your balance and coordination. So either way try to limit it if you can.
Healthy fats – Over the years we have got used to being told to stay away from fats. But that’s not the whole story. It turns out that saturated fats can be good for us, so go for olive oil, avocados, and nuts. They can help memory function as well as being an anti-inflammatory.

A brain injury can affect a person in so many different ways, and it can be a changing situation as we develop. I know I need to do more to look after myself now, but I know I can do this.

If you want to know more about the connection the gut and the brain, you can read an interesting article by Psychology Today here.

Have you found your gut behaves differently following your brain injury? What steps have you taken to help your digestion?

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A brain injury can leave your energy levels exhausted

Michelle #jumbledbrain — Thu, 11 May 2017 11:25:19 +0000

When I know I have something particular happening the next day I plan ahead. I make sure I get plenty of sleep that night, and have everything organised. This always used to work for me before. It meant I would be ready with my “A game” and be on top form. Naturally I still needed a good cup of tea to help me on my way. But soon I’d be on my marks, primed for the off. However my brain injury turned all that on it’s head, leaving me exhausted.

Fatigue isn’t something you can just snap out of.

I was going to the National Pet Show. If you follow me on Twitter you might have seen some pictures I was tweeting of Dexter, my Bengal. They said they were going to display visitors pet photos, so I wanted my little hero up there. But they did nothing of the sort, I was duped into advertising for them. However it demonstrated my excitement. I had been the previous year to the event in Birmingham, and had an amazing time. This year I was going to London, as it’s more local for me. And I imagined everything is always better in the capital, so this would be a show stopper.

But from the moment I woke up I was exhausted, both mentally and physically. I don’t have an explanation for why, only that my brain injury has a mind of its own. My partner James spotted it immediately and kept suggesting maybe we shouldn’t go. But I had been looking forward to this for ages. The brain injury wasn’t going to beat me this time.

Travelling when you’re exhausted is a nightmare.

We drove to a tube station where at the weekend there is free parking near by. Even on this leg of the journey I was struggling to keep my eyes open. I couldn’t hold a conversation as that took brain power I just didn’t have. James was chauffeur, but still noticed I was spent. But I ploughed on and we began the tube journey the to Excel centre.

As the London underground is quieter at the weekend than it is during the week I was coping. But I felt like I was existing instead of living. It went down hill when we changed at Canning Town to get the Docklands Light Railway or DLR. (The DLR is still part of the underground, except it’s overground without being “The Overground line”. Confused?)

These trains are one long beast. The carriages are joined by sections which can twist and turn with the track, whilst allowing it to be wall free between the carriages. This part of the journey was the busiest, as the Excel centre always gets good attendance when it holds events.

So as we tried to find a space, we found ourselves standing in one these connecting sections. But I didn’t notice I had one foot in the carriage, and one on the twisting floor. I stood, hanging on to a hanging strap for standing passengers. Next to me was some guy who smelt like he hadn’t had a wash for a week. As he too was hanging on a strap, but was taller than me, my nose was almost in one of the offending armpits. The odour was overpowering that even when the train started moving, I still couldn’t sense my legs were moving in different directions. I was thrown all over the place. I survived, but if I hadn’t been so exhausted I don’t think I would have made this error. Thankfully, no one was hurt.

Adrenaline is like making a pact with the devil.

Once inside I loaded up on coffee. And the excitement of seeing the amazing creatures got my adrenaline going. Soon I was more like me, and was pleased I’d come. Although I would say in my opinion Birmingham did it better than London. They created a better environment and atmosphere, but the birds and animals were what I came for.

But whilst adrenaline gives a welcome boost, it comes at a price. Days after the event I’m still exhausted. All it means is you have energy up front, but like a loan shark it makes you pay with interest. You pay for it many times over.

So should I have continued, or stayed at home and rest? Life is for living, and whilst I’m feeling down and out now, you have to make to most of things. Life is too short to just live in the safe, boring zone forever. Just be prepared for a prolonged visit to the safe, boring zone after the excitement is over.

If you feel this describes well what we go through, please share it on your social media so others can try to understand.

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Balance feeling unstable due to brain injury, it’s awkward

Michelle #jumbledbrain — Mon, 20 Feb 2017 17:04:23 +0000

Balance is a very complicated thing, but it starts with your inner ear. Effectively we are fitted with our own little spirit level called the vestibular system. If it becomes damaged it can make balance a lot more difficult. I mentioned before in Tinnitus, the loathsome bells of brain injury that I have suffered with tinnitus for many years. But since my brain injury it has got worse. But whilst a Doctor was trying to diagnose my condition all those years ago, I was asked to perform a simple test. I was told to close my eyes and walk forward. A nurse was stood behind me in case I fell. After just a few steps I heard voices saying “It’s OK I’ve got you.” Apparently I had been about to topple over, but I didn’t recognise it at all.

All the elements that go into balance.

What that test showed that I was using my sight to help my brain decide which way was is up. Once vision was taken away I was forced to listen to my inner spirit level, showing how inaccurate it was. But as long as I continued to walk around with my eyes open, I was able to cope.

But my brain injury changed that. There are so many reasons that might be the case as balance is a complicated recipe.

Vision – As your eyes give you a picture of what the world looks like, that information helps massively. Unfortunately as I have double vision now, this sense is not as reliable anymore.
Muscular strength – It takes a number of muscles able to produce a lot of force to keep us balanced. But as I have left sided weakness even that causes an imbalance within me.
Coordination – Being able to confidently place a foot on the floor as you take a step is something we learn early on in life. But my nerve damage means the communication between my limbs and my brain is off-kilter. Therefore I might expect my foot is about to touch the floor, but it’s not.
Brain-stem – As it controls movement it is also essential when taking those steps. I had a bleed which was next to my brain-stem and irritated it, affecting my control of movement.
Inner ear – Your in built spirit level. But we already know mine is broken.

When the world is spinning.

Together this means I can have spells of vertigo. Even if I’m sat down my brain can still be convinced the world in spinning. Some people find that if their head is spinning whilst in bed, putting a foot on the floor stops it. This is most likely because the information your foot sends back about the flat, still ground, helps convince your brain that is correct. Sadly this has never worked for me. I found this would be at it’s worst when my vision was particularly bad. Not a good combination, I can tell you.

But I have improved, maybe it’s because a little more strength is back. Or maybe it’s because my cognitive abilities have improved. You don’t realise all the calculations your brain does, and all the information it analyses in a fraction of a second. So just as my brain had learned to listen more to my eyes, than my spirit level, perhaps it is re-calibrating to the current inaccurate data.

Wish I had a tail.

Lots of animals such as monkeys, squirrels, cats and dogs have the advantage of as extra limb. The tail. And it helps them balance in the most challenging of situations. They swish it around to move their centre of gravity to counteract any imbalances. And don’t they just look majestic when they do this. Think of how a Leopard changing direction to chase their zig zagging prey, flashes its tail to the side to do a handbrake turn.

Instead I have arms. So often when I get up in the night of go to the toilet I look like I’m walking a tightrope. Except it’s not impressive when your walking on a carpeted landing.

I don’t use a walking aid anymore as I need to keep practising for the re-calibration process to be successful. But it would help the rest of the world know as it rushes by to give me a little more room.

Has your balance been affected? Is there anything in particular that has helped you?

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Double vision trouble from brain injury

Michelle #jumbledbrain — Mon, 02 Jan 2017 19:02:33 +0000

I had always had good vision which I (like most people) took for granted. Being a pretty good artist of sketches and oil paintings, my sight was a blessing. I’d never worn glasses and assumed that wouldn’t change until I was old. Well I’m now eating my hat because following my brain injury I have double vision. Usually its just a slight overlap, but it can be a lot worse.

Stress affects me badly

As I previously mentioned in Stress has a big impact on brain injury, stress has a considerable effect on survivors. This day was no exception. I had an appointment in London to get to, and my Partner James had taken the afternoon off to take me. I’m not sure what had happened that morning, but I was tired and confused. But the worst part was my sight. I saw two of everything and couldn’t really tell where objects were in relation to me. So I was relieved that James was able to drive me to my appointment.

Don’t count your chickens when you have double vision as you’ll never get it right

We left in plenty of time, James had booked a parking space for the day so we were going to get there early and have some lunch. Just as James was trying to accelerate to join the Motorway the engine warning light came on. The management system limited the revs so there was no acceleration. This was bad news, so we took the car to the nearest dealership for them to look at it. Leaving the car with them we took a taxi to the railway station. Luckily as we had left early, although our journey was going to take a lot longer now, we might still make it.

Negotiating the stairs at the station and on the train, was difficult with my double vision, but James helped me. As unsettling as it was to travel when I was so disorientated, so far I was coping. But all the time I was worried we might not make it in time for my appointment with the Neurosurgeon. ( I didn’t ever have surgery, but when I had my car accident that was the team that looked after me.) The added pressure was making it impossible for me to relax enough to allow my double vision to improve.

But the worst was yet to come….

Once the train pulled into the station we needed to use the London underground to cross to virtually the other side of London. Getting a bus or taxi was out of the question. The traffic in London meant that it would take too long. Our only hope was to use the over packed “tube”.

When people are in a hurry (which in London is all the time) they are speedily trying to dart in and out of the crowds, and might accidentally (or not) shove you. Normally I would try to make space for people trying to pass me, particularly as I wasn’t able to walk fast due to the nerve damage in my left leg. But with my double vision, I couldn’t tell exactly where they were, or which way I should dive. In the confined space of the “tube system” this was terrifying!

And as for escalators, every time I got on or off them I felt I was gambling with my life. James helped by holding my hand and counting down when I should step. But even then I kept getting it wrong. The vicious thing tried to drag me away like a shark attacking a surfer. James held on and righted my balance, saving me from disaster umpteen times.

I survived

After dicing with death, happily we made it in time. It was close but they were running behind, so it probably didn’t matter that much anyway. But having time to relax whilst we waited really helped. So although the journey back was tough, it didn’t have so many heart stopping moments.

And in case you’re wondering about the car……

The dealership didn’t find what it was but removed the error from the system so it was driveable. It happened again a few times and a family run garage eventually found it was the engine filter. So that did get sorted in the end.

The moral to my story…

We are used to the visually impaired using a white stick, or walking with a guide dog. Please remember that there are people out there who might not have had a diagnosis yet an so could still be battling without these aids. I know that sometimes it feels like time is against us, but we are all racing against the same clock, lets just make sure we all get there.

Do you struggle with double vision? What would to like others to know about how that feels?

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When a brain injury makes your senses misbehave

Michelle #jumbledbrain — Wed, 23 Nov 2016 22:51:02 +0000

As some insight to myself after my brain injury returned, I started to notice that some of my senses seemed different. Once you have got over the elation of being alive, and returning home, many start to feel the changes.

With a brain injury it takes time to see your senses are different.

First I had to accept my sense of balance was off kilter. I was clumsy, and would fall over easily. Muscle weakness on my left side did nothing to help this. Through specific exercises I have been able to improve my strength, but my balance still isn’t good. So I have to be careful. When going up and down the stairs I make sure I hold on to the hand rail to steady myself. Sounds obvious, but I used to just run up the stairs. I didn’t give a second thought to grabbing the rail for safety.

Next I realised my sense of touch was affected. I couldn’t identify things that touched my left side. Instead my leg had altered sensation, and would report pain. My left leg would be in agony as cold or unexpected items touched it. A sharp, painful, stabbing sensation would hit me. But this may have been nerve damage rather than my brain injury as such. But even if I stoked the cat with my left hand I could only sense pressure, not the texture of his fur. That was so disappointing for me.

Smells started to affect me, and I would suddenly be hit by really offensive odours. But as I didn’t as ways shout “something stinks“, I didn’t know I was the only one smelling them. So it did take time to realise that: at best I was over sensitive, at worst I was imagining it.

My sense of taste was affected for while too. I had always had a pretty plain palate, but suddenly I wanted spicy food. Otherwise things didn’t seem to have any flavour. The idea of forcing myself to eat tasteless food was uninviting, particularly as my appetite was already diminished. My partner James would buy lots of different things to try to encourage me to eat more. (Now though, as my taste has returned I eat far too much. I’m such a little piggy!)

Realising my sight was affected by my brain injury was the most difficult and upsetting. I would see double, which when you can’t balance well spells disaster. Effectively I couldn’t do anything. My coordination was rubbish, but when you can’t be sure where the thing you are looking at is, it’s virtually impossible.

People are the real challenge when you are struggling with your senses.

When I could walk well enough to ditch my crutch I was proud of myself. But I still limped badly, and was very slow. However losing the crutch symbolised progress for me, so I was pleased to be rid of it. What I hadn’t appreciated is, a crutch is something visual, and told strangers not to expect too much of me. So when I started going out without it, the fast paced, impatient modern world virtually knocked me over.

The world is always being told to be assertive. That seems to have evolved into a mildly aggressive population, who just walk at you, not round you. I feel like I’m a pin trying to cheat a bowling ball. The conundrum is people need to stop rushing me, but I don’t want to be labelled as disabled.

So perhaps that means I still have some way to go to accept my current position. Or perhaps that is fighting spirit. It depends on your perspective, but prefer the latter. I still like to believe I will continue to better myself. My brain injury makes me hampered, but I am still able.

How has your brain injury affected your senses? Do you feel the difference in your senses holds you back?

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