Losing cognitive skills

General
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So I’ve been dealing with some setbacks for a few months now. It started with an odd feeling at the back of my head. My stutter and my tremor became much worse. The tremor has moved to my left hand. We thought it was the excitement of going to Lobby Day and then the next week meeting some folks from Bens Friends. When those events were over, I didn’t improve.

I’ve seen the NP with my Neurosurgeon and they deduced it wasn’t a surgical issue. My PCP referred me to Speech and a new Neurologist. I saw the Speech Therapist earlier this week. The Neurologist will be seen in June.

Monday after Easter, I woke up around 3:30 am and my right eye had a lot of swelling. Went to the PCP and her NP thinks it’s allergies (gotta love the South). Started the benedryl and compresses, no improvement, doubled the benedryl, no improvement with my eyes. It has taken the odd lateral feeling out of my brain! Called the allergist. Did what they recommended over the weekend. The other eye has swollen. Called them back and was put on antibiotics. Half way through the antibiotics, no improvement.

Speech Therapist did the Cognitive test. I forget the name of the test. I scored the bottom of their cutoff, which normally means she wouldn’t take me. However, since I’ve worked with her before, she has accepted me. The poor woman has way too many patients and no help. But they managed to get me in!

I’m hoping the eye swelling is just allergies. I will call them back when I’m done with the antibiotics either way. Really happy that the odd feeling is gone!

What do you do to help with cognitive skills? I read, I play Sudoku, do some crossword puzzles. Any suggestions?

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Hey Moltroub,
I’ve been in a similar position, in that, I’ve had symptoms occurring. Seen dr’s, seen specialists and to be honest been told more times than I care to remember "We don’t think its ‘X’, but I think it’s ‘Y’…
‘Y’ has been everything from allergies to drug reactions to stress to muscle tension to misalignment of the spine to visual issues to nerve damage to… ….the list goes on and on and…
My suggestion to you is to keep a detailed diary of symptoms, when they occur(times of day), their frequency, medications you are taking and their dosages (including naturopathic meds, vitamins etc) , the weather, any physical exercise. EVERYTHING.
Write it down. Someone maybe able to link the dots.

Having a documented record can help. We often go to dr’s appointments, walk in, start to talk about what is occurring, leave and think ‘Ohh I forgot to tell him about ….’ Also having a bit more of a holistic picture can assist in obtaining a more holistic answer.

Some dr’s love giving out pills ‘Here try this… …ohh that didn’t help, then, try this instead…’ so be aware. They can dose you up on that many meds you’ll rattle like a pill bottle when you walk (Well, I did) and every specialist will have another ‘miracle’ pill or potion. ‘Just try this for a few weeks’ they’ll give you uppers and downers, inners and outters and by the end of it you won’t know if your names Arthur or Martha. Some of the meds can interact and the side effects can end up being worse than the symptoms they’re trying to assist.

I have found that often when I’ve gone to see the neurosurgeon they say “Well, it’s nothing surgical…” Then I’ve gone to the ophthalmologist “Well, it’s nothing to do with your eyes…” but they are both looking at things solely from their singular view. When things are considered as parts of the same picture and not on their own, a more holistic answer may be possible.

As for your cognitive skills there are some online brain training sites that can be helpful ie Lumosity.com which can be useful. Personally I find I need a bit of variety, so brain training but also physical activity, even if it’s just walking our little mutt and doing stuff around the home. So a bit of stimulation.

Look, I hope you find the answers you are looking for, but don’t get disheartened if the medicos push you away. Look elsewhere, you know ‘something’ isn’t right, you need a dr to agree and investigate.

Merl from the Moderator Support Team

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With cognitive skills , my advice to start learning how to play a new instrument , or art therapy , whatever is moreinteresting for you …
There must be a reason for your physical symptoms … may be medication reaction ?I really hope you find a specialist with may be not standard thinking , who will see the full picture and will have an answer…:frowning:

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Thank you so much Merl and gk79!

Merl, your message reminds me of when I was a High Risk Intervention Worker, first thing I did was get my client off all their medication and start fresh. I would give them a couple months drug free, enough time to get it out of their systems. To me, it was the only way to see what was true behavioral issues and the side effects of the very strong medications they were put on. Most times the medicine was the culprit. The children were never put back on anything at the strength they had been on. Caregivers learned to parent differently with a lot of hard work on their part, I do keep meds down to a minimum. Unfortunately, the eye swelling is keeping me from being on any type of electronics for very long. Hopefully this will improve.

And gk79, your words aren’t unheeded. I’ve been relearning my woodworking tools since I could after rupture. Though I haven’t picked up the Recorder again. It is an alto, so maybe I’ll give it a go!

We were just talking…wondering if it’s a delayed reaction to the gadolinium. I’m allergic to it and the iodine. Always premedicate for angiograms or MRAs/CTAs with contrast, even carry my own bottle of benedryl. I know on the last angiogram, they didn’t need the dye and she was able to see fine, so it might be hanging around

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Luminosity got themselves in some trouble in misstating that their site will improve cognition. The Chair of Neurology at research hospital also felt that Luminosity will not improve cognition in a lecture that I attended. However, I think that Luminosity will establish a baseline of your cognition. In this way, you can compare your cognition today and compare every 3-5 years to see if it is maintained or in decline. In my monthly Aneurysm/AVM support group that I attend, the major complaint is cognition/memory/emotion where they feel that their cognition is in decline but they cannot quantify it, With the luminosity or other standardized cognition test, survivors can start tracking results quantitatively over time. It is great feedback to medical professionals looking at your health in the long run.

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When I had my brain aneurysm I turned to Luminosity to improve my cognitive skill. Recently I subscribed to BrainHQ and found that it is superior to Luminosity. Brain exercises significantly improved my cognitive ability. I highly recommend them. Marjorie Nicholson

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By no means was I saying ‘Luminosity is the answer’. Personally I found the simple act of stimulation via such sites useful in that it kept my mind active with a bit of lateral thinking, which was needed at the time as all I was doing was rolling the same persistent negative thoughts over and over. Sites, such as Luminosity (and others) can assist in moving the mind into another process and this can be helpful.

Merl from the Moderator Support Team

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I think what you are doing will help you with improvement in cognitive skills. It was suggested to me to hit the ground running so to speak with practicing cognitive challenges. I’ve been trying to learn music. Anything that will challenge your mind in some new way.

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Thanks all! My Speech Therapist has set some goals for me. First to do simple speech, then conversational speech and then we will get into the cognition. But it all helps…She is going to suggest a few different apps or sites in a couple of weeks. I will make sure to post them here.

When I had my foreign accent syndrome diagnosed, the supervisor of my speech therapist had me doing some math I became really frustrated and stopped doing it. There was no assistance in why I was getting it wrong so I told him, if it can’t help me relearn by explaining what I did wrong how am I supposed to relearn?

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Then you can have the opposite with medications. My neurosurgeon gave me a tension headache pill, my PCP says I don’t want anything to do with it. Both say I can’t take Ibuprofen or Acetaminophen. So I went to bed at 8:00 the night before last and spent the entire day in bed in pain from my head to toe and went to bed at 10:00 last night. This rupture certainly took away my dancing shoes

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I usually say Neurosurgeon trumps (insert type of doctor). You probably need a neurologist to deal with the headaches. My Neurosurgeon only deals with surgical issues, though she has on occasion subscribed a med or two for a very brief duration.

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I’ve been doing my homework and have surpassed expectations, so we jumped a bit forward. As promised, my speech therapist provided an app for me to look at and reminded me there are many different ones out there. She also suggested trying the free version of an app for several weeks before buying into one. She also cautioned that just keeping your brain active will help with cognition but she has not heard of any apps that scientifically prove cognition improvement

The one recommended today is called Brain Yoga. It has various different things to do, you can set it from easy to hard, no timer, just relaxing interaction

My other homework is to read out loud. I read to my dogs, they’re nonjudgemental lol, She suggested just a short story and take things in breaks so three to four times a day. Reading helps the aphasia, reading out loud helps aphasia and stutter.

I didn’t realize that when I lose my words or my stutter becomes worse, I am tensing my shoulders. There’s apparently a connection to being tense and losing words. Who knew? So that’s something else I need to be mindful of. And the stutter can be somewhat controlled by breathing. It doesn’t go completely away. I will have to learn how to do that during a conversation. Right now, it’s take a breath, read a simple sentence and exhale while saying the words.

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I actually play cookie jam and candy pop soda online. It keeps me occupied.

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So I’ve pretty much wrapped up Speech Therapy. She is really strongly recommending any word games, journaling, writing as well as social interaction. They will all help with Speech and cognition. One of the many papers of homework were six sheets of tongue twisters, you know the type…Peter Pepper picked a peck of pickled peppers…it makes my brain slow down to think, they all have the same cadence and it should help with aphasia as well.

New Neurologist says pretty much what the Neurosurgeon says, brain damage is catching up. He believes I have rubral tremors due to the location of brain damage in the corpus callosum. He says low dose of benzodiazepines will help the tremors and the Neurosurgeon doesn’t have any problems with me going on them. The Neurologist is going to do an EEG next week to check on seizure activity, if any.

So basically it’s stay active, read lots, play games and socialize!