Hi- I’m reaching out on behalf of my partner’s sister Bianca who suffered a double rupture March 6th and spent a good 5 weeks in the ICU in a coma. Mid-April she was moved to a sub-acute nursing facility and started opening her eyes for periods of time a couple of weeks later. I’m looking for any stories where the patient would have been in a coma for 6 to 8 weeks in hopes of gaining a better understanding of what to expect, how better to help Bianca and her family, etc.
Welcome Bianca! Did you read Mental health after. She’s also new and was in an induced coma for a long time. I ruptured but didn’t go into a coma. Sent home after 26 days in NSICU and a couple in step down unit. Left to on my own to figure out what I needed to get better and thankfully have a great Neurosurgeon who would write the orders. My PCP only said get a new neurosurgeon. It’s a long road to recovery. Some days we step forward only to find we then do two steps back.
Unfortunately there is no typical what to expect. After reading many of the stories here the range is wide. From amazing recoveries to never leaving the care facility. My wife is somewhere in between. 3 weeks in ICU most of which barley responsive. Then off to a different hospital for 2 weeks to ween her off trech masking. Then to a terrible rehab facility for 4 days of neglect which sent her back to a hospital for another week. It has been 2 1/2 years she still needs a caregiver at home. Many days of PT, OT and speech. She still has significant cognitive issues. I find it so odd that she can read fine but can’t use the remote control or the phone very well . She can shower herself but puts on her clothes backwards. Her short term memory is minuets. Her long term has holes.
I hope your Sister in law well.
Thank you for your responses. Any and all input is helpful! We are so lost and feeling helpless. We are learning how to focus on the baby steps forward and continue to be strong for Bianca. @Spousecaregiver I am so happy to hear your wife can now enjoy reading and taking showers herself. @Moltroub thank you for your role as Moderator and the link to Mental health after…
Music helped me quite a bit in ICU. The RN’s taught me how to access Pandora once I had permission for it. I can’t begin to describe the pain in my head. I had no affect for several years, people would try to give me words they thought I was trying to say but all it did was shut down my brain which I’m told by sets is very common for people with aphasia. Hang in there. Caregivers are how we get better. You and your family will need to take breaks. From what BH tells me, it’s very hard to see a loved one in hospital being told that they may not make it to the next day. I can tell you not to shake your head in agreement if you don’t understand all the medical terminology. RNs are really good about communication, Doctors not so much so tell them to dumb it down if you don’t have a medical degree.
Once your loved one is at a good place, the three therapies will typically come do an evaluation.
If you know already, please skip! This was new to me last year, so I share if it helps you become more familiar:
- Physical Therapy (PT). I am confident you are already familiar with this one, and, of course, they will focus on your loved one’s physical condition, and strengthening muscles, balance, etc.
As an example, I had to be stationery in bed for ~2 weeks. As a normal adult who tries to maintain a healthy lifestyle (translate: walker), I was quite surprised how much my muscles atrophied, and how unbalanced and weak I was after only 2 weeks. They will work hard to push the body’s return to a safe state.
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Occupational Therapy (OT). OT is sort of a catch-all from my experience. They will focus on activities-of-daily living (ADLs), such as ensuring one can take a shower safely, how to do laundry, etc., and using other assisted devices that one may need to navigate a post-aneurysm life (wheelchairs, canes, etc.). But, they do so much more! They also helped to work on my upper body strength, and also with puzzles and games.
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Speech Therapy. Speech Therapy (IMHO) is somewhat of a misnomer. Of course, speech is a major part of that therapy, but they also help with other parts of recovering from a brain injury. Depending on what part of the brain was injured, there will be exercises to help improve memory, or decision making or focus or word recall, etc.
What my family did for me was throw brain games and books my way. (Admittedly I am a reader and a curious type so puzzles and games appeal.) More below.
Our state support group just had a speech therapist present a program, and she explained it this way which I found very helpful. First of all, an individual AFTER an aneurysm is just as intelligent as before; nothing has been lost! If you think of your brain as a filing cabinet, what has happened is that the filing system is now cluttered. Where the brain used to go to access material does not work anymore, and so it needs to figure out new pathways on how to get there.
So, that is where reading and games are a big help (layperson’s understanding, not a medical one). One of my speech therapists said it doesn’t matter what you read (fiction v. nonfiction), what matters is that you read something you are interested in. For games, make sure it is a variety of games (e.g. Word Search, Crosswords, Trivia, Sudoku, etc.). As an example, number games are not my favorite, so I would tend to skip over them. However, with practice, I have figured out a system for Sudoku that works for me, so I almost look forward to a Sudoku puzzle now. I constantly have several brain game apps open and paper game books strewn throughout the house, and even have it as a task on my daily to-do list. As I understand, it really is a big help, but again, just a layperson.
My biggest lesson learned - as much as it drove me nuts - was to follow the rules at Acute Rehab as this is the quickest way to get home. The first time around, I fought rehab more, and would get up out of bed unsupervised (alarms sounding!), because that is what I was used to doing! That was wrong, and I regret that. The second time around I knew what I needed to do, and that is do what they say - and then do a little bit more to push myself to get back home sooner. You want 20 minutes on the elliptical? Let me sneak in an extra 2 when you aren’t looking!
I also don’t know if it will help, but based on my neuropsychiatris’s recommendation, I started leaning into the MIND diet. (I was along the Mediterranean before the aneurysm, so it wasn’t a big stretch, but just in the past few weeks I tightened up anout it.) Will it do any good?? I have no idea, but emotionally I feel better eating brain-healthy foods … especially my ultimate favorite, blueberries!
Sending lots of healing energy to you and your family!
Fin Whale Fan
Thanks for sharing FinWhaleFan. I find it all important what you shared. I have experienced some of the things you’ve gone through with regards to therapies. I am now 1yr & 10 mos recovered!!! Completed all my therapies but still ongoing with mental health therapyI am stronger physically but have a lot of mental issues (depression & anxiety). Family support is very important and faith in God is where I get my strength. Anyways I have a question about the MIND diet you are talking about can you please elaborate. Thank you and may we all continue to heal and be a support to someone in need of one.
Jo
First of all since this is her topic, for you @bianca, some additional things I forgot. (Yes, @Moltroub, you know I am pulling out the brain injury card!
) Namely, meditation was encouraged from my neuropsychiatrist to reduce stress, for emotional support, and general meditation purposes. (I was not a meditator previously, and I am not a natural for sure, but I do think it helps some. It would be better if I were more diligent about doing the homework throughout the day - oops, forgot again!
)
I downloaded a free app (Healthy Minds) that is more neuro-science based, and it offers up both meditation training and lessons about the brain, so I find it interesting to both practice it, as well as learn more about how our brains function. Of course, there are tons out there for your loved one to find the one that works best for him/her.
Sleep is also healing, so I bet your loved one’s medical team is all over that. Resting is a big deal, and it sounds like many of us struggle with fatigue for a long time afterward. Encourage rest and sleep whenever, wherever, needed. They have been through A LOT, and resting is absolutely part of the fight!!
@JoSanti - Now to you! With a slight correction (I will take the heat, and not blame it on the injury this time though ). My neuropsychiatrist definitely recommended I consider switching over to the Mediterranean Diet, which I had already been leaning into, so that was easy enough. The Mediterranean Diet is consistently in the top one or two diets that are recommended for good health, year over year. As an easy intro, Harvard posted a practical guide on it, linking below
https://www.health.harvard.edu/blog/a-practical-guide-to-the-mediterranean-diet-2019032116194
(Side note, before BA, I started using The Mediterranean Dish website a LOT for recipes. She has a wonderful palate for developing wonderful flavors, but she publishes many recipes that are NOT on the Mediterranean Diet. Just be sure to add to add that category as a filter on your results or browse only in that section.)
So, I am not sure how, but somehow recently I learned about the MIND Diet. (Maybe my neuropsych and I just chatted about it??)
In short, it is fairly new, just published in 2015, so it has not been as well-studied. That being said, the MIND diet was developed as a combination of the Mediterranean Diet and the DASH diet (emphasizes reducing hypertension). You can read more about the DASH diet here:
Now FINALLY I will stop rambling and get to the MIND diet! The MIND Diet seeks to combine the two different approaches to develop a plan to help prevent Alzheimer’s and dementia through better nutrition, and initial research suggests it is effective. As such, the focus is heavy on brain-friendly foods such as:
- Nuts
- Beans/legumes
- Green, leafy vegetables
- Poultry
- Berries
- Whole grains
Probably no surprise, but it also recommends limiting certain foods (not eliminating, but limiting to only a certain amount per week:
- Fried and fast foods
- Red meat
- Sweets
- Butter/margarine
- Cheese
I have not looked, so perhaps someone out there has studied the impact on BA survivors, but we all know we are not the first thought when it comes to research, so potential topic for all you in this field.
What I have found so far is that I really both the structure and the flexibility of it. I have a whiteboard with all the categories for the day, and then it takes a quick review to figure out - oh, I am having chicken & quinoa for dinner, I need to focus on leafy greens and veggies at lunch.
FWIW, I am mostly sourcing from MIND Diet for Beginners: 85 recipes and a 7-day kick-start plan to boost your brain health by Kelli McGrane, MS, RD. You can find a copy at the MAJOR online shopping experience here in the States, and booksellers everywhere. As with all cookbooks, some recipes I just adore (juicy Greek turkey burgers (with spinach tucked inside) - yum!), but it is super easy to find recipes online as well. Some recipes are only meh, but that is what you get from most cookbooks. Typically, she uses a minimal amount of items (<10), and cooking time is pretty quick … about 30 mins for most. Perfect for our fast-paced world.)
As an example finding recipes online, I woke up hangry one Sunday (late big lunch on Saturday so no proper dinner, and I wanted pancakes) so I found this recipe at Eating Well which are simply delicious (linked in an article about brain-healthy foods … I made a tweak or two based on what was in the house).
Jo, I probably should have waited for your question first!! Sorry for taking so much space, but delighted to share what I know if this does not answer your question. In short, since these are brain-healthy foods and they come from 2 great diets, the science is still early, but how much of a risk could it be is my logic?? I may have lost a pound or two as well, so bonus win…
Bianca, we are all sending healing thoughts and strength out to you and your partner’s family. We will continue to be here for you, as you are all not alone!
P.S. to @JoSanti. Jo: Sincerely, thank you for the affirmation that telling my story and experience is of value. (…and to all the rest who voiced that in other posts - I know who you are!
)
Pre rupture, I was the oddball in the room that didn’t like to talk about myself, so I am trying to grow in this experience. I just adore reading all of your stories, and find so much similarity (as well as differences) in our collective journey. Whatever I say, my intent is to say that none of us are all alone: despite our different experiences and roles we are all part of a beautiful BA tapestry, and I am grateful to be on the journey with EACH one of you!
P.P.S. Just another article (2023) summarizing some research findings. It is still early on, though, but thought it might help to catch up on some of the research.
https://nutritionsource.hsph.harvard.edu/healthy-weight/diet-reviews/mind-diet/
[Note to self. Research Junkie, put the pencil down, and keep it to a bare minimum… ]
Awesome!!! Thank you so much. You did answer my question and more. I am trying to follow Mediterranean diet now but I started on DASH diet after my discharge (because I am so afraid of salt since I know that high blood pressure caused my rupture). So MIND diet being a combination of both is so great! Continue what you are doing and sharing your experience because someone just like me learned from you. Blessing and positive vibes sent your way.
Jo
P.S. I bookmarked your reply for reference.
Hi All on this thread- Thank you SO much for your kind thoughts for Bianca and all of us surrounding her. It is so encouraging to hear from people who have been there and are recovering. We are at month 6 since Bi’s double Annie rupture and she is hanging on. She opens her eyes and does seem to take us in. I focus on telling her about the amazing community I have discovered and that we all have to be super patient and strong together. I tell her I hear she may be feeling frustrated and horribly sad but that she is safe and we will continue to be here for her. To stay strong and hopeful…
@bianca -
More tomorrow (melatonin will kick in soon! ), but thank you for this update on how Bianca is doing!!
I was thinking of you all just earlier today, and channeling positive thoughts to you (N), A and all the rest of the family - obviously we are on the same zone! Sooooo glad to hear that Bianca is opening her eyes and taking you all in!
We are ready to embrace Bianca as part of our “family” too - whenever she is up to it!
Rest well tonight.
I coincidentally received something as I headed out the door tonight that might be of interest to you as caregivers. You likely have deduced by now that I will have a smidge of a backstory that I want to also include, so it will take a smidge to pull it all together.
Thanks again for sharing how she is doing!!
Fin Whale Fan
Thanks so much for the update! Don’t forget to play her music. It might be beneficial to read to her, Janet Evanovich has some funny parts in her books though after many, they all seem to say the same thing. She may like mystery or romance, or any of the other genres. There’s something soothing about hearing people just speak even if we can’t follow the conversation. Share your day with her, she knows there’s ups and downs to life and may appreciate being added in.
At long last, the exciting email I promised you! Well, likely not all THAT exciting, but I share in case you get any tidbits of help for Bianca - or yourselves!
So, I think I mentioned before that I recently attended my state’s support group for BA patients. Those were the folks that described a rupture as messing with the filing system of the brain. All the files and documents are still there - i.e. - the person is still just as intelligent as before! What has changed is the networking/filing systems which are now completely unorganized, and so you want to try to build as many pathways back to find those folder/documents as you can.
One of the other tidbits I got out of that session was a reference to some apps for therapy purposes - especially speech therapy. One app that was mentioned by a speech language pathologist (i.e., speech therapist aka SLP) is Constant Therapy. Evidently she uses it with her patients, but it was a new one to me as I did not hear about it before at either of my two rehab places.
Constant Therapy is just an app you can download on your phone (both iOS and Android) , so it is easily accessible. The app is designed for individuals with brain injuries, and it uses both artificial intelligence and scientific evidence. The app can be used by everyday citizens or it can be tied into a more formal speech therapy rehabilitation, so that your SLP can assign you certain lessons and help target the exercises you can do at home, at rehab, etc.
They do offer a free 2-week trial, so I took advantage and spent a lot of time testing the app out before my trial was up.
One of the things I appreciated about the app was that it would learn what was easy for me (suspect that was AI in place), and quickly progress me onto different levels or let me slow down in areas that were more challenging. I thus had a better idea when I met with my neurologist to say that “I noticed I perform poorly in XYZ” or “I had a hard time recalling ABC word” to explain issues I am still having post-rupture. (In case you were not aware, brain injuries are known as the “invisible injury” as we frequently hear “but you look fine!” I know it is meant to be encouraging and a positive comment, so I can conclude that only those who experience it truly understand that we’re not making this stuff up. )
At the end of the day, I opted not to subscribe. What is relevant for you (FINALLY, we made it to the important point! ) is that they are - not surprisingly and fair enough! - sending me emails trying to get me to subscribe. They referenced an article posted on BrainWire that made me think of you instantly - again, right about the same time you were sending along your messages! (Told you we must be in the same zone …
)
Caregiver resources: Maximizing your impact on your loved one’s recovery
The article, in turn, links to a few other articles and resources to both help you understand the neuro world and advocate for Bianca that you may find helpful. Although not focused on aneurysms per se, since an aneurysm is similar to a stroke you may still find value in it. Naturally - and fairly enough! - one point suggests using using Constant Therapy. I, however, have no financial skin in the game so read/not read as you see fit! (I can only guess how overwhelmed with information you are at this point!!)
I will keep sending healing thoughts to all of you. I guess that you and A are swamped with all sorts of things to do in the caregiving role, but - as you have time - please let us know how she is doing and that we surround her with much already!
Fin Whale Fan
@bianca -
I am sure things have been very busy, but just wanted to check in and see how you and all the family have been faring. I hope you all are doing much better, and are able to see a new way forward!
I also wanted to cycle back, and correct to something I said previously. I asked my neurologist yesterday if/what there is anything further that I should be doing, especially about the heavily advertised “brain supplements” here in the US. I told him that since the fine print always says that the statements have not been evaluated by the Food & Drug Administration, I presume that there is no clinical proof they work and he agreed.
We then talked about all the things that have clinically are effective, and I was shocked when he said games and puzzles have not been clinically proven to have an effect. His approach is that if you like doing them, keep doing them; if you don’t like sudoku, then don’t do it! [Drat, I learn this AFTER I have grown to like sudoku … ]
Of course, I would absolutely follow your doctor’s and therapist’s recommendations over this indirect comment. I just wanted to document the record for posterity though.
Sending you all healing energy!