PF Brain Fog Struggles and Solutions

PF Brain Fog Struggles and Solutions

Just breathe, passionate help for the PF journey

Lately, I’ve noticed I’m not thinking through things as well as I used to. It is very hard for me to accept since clear thinking was a strength for me. I was diagnosed with pulmonary fibrosis four years ago. Here’s what my brain fog looks like.

Forgetting information

About two years ago, when I was still working as a counselor, I noticed that I occasionally forgot important information when talking with a client. For instance, if I were talking with someone about a topic in the news, such as a flood, I would forget that they had been through that experience five years before. I would remember later as I reflected on our conversation, and feel bad I hadn’t remembered. This didn’t happen very often, but when it did, I always called the person back and apologized for forgetting. I was a counselor for 30 years and was very good at remembering what happened in people’s lives, so experiencing brain fog in this way was very distressing for me.

Difficulty thinking through things thoroughly

About a year ago, I started having trouble thinking through all the factors pertaining to a certain problem or situation. I would think about some things, and completely forget to consider other important dynamics. I’m now able to recognize this tendency and ask my husband about once a week to “help me think through something.” I will lay out what I’m thinking about or planning and ask him if I’ve missed anything. He is very nice to process these situations with me. About half the time, I miss considering an important aspect.

Trouble solving problems

In the last two weeks, I’ve had trouble coming up with solutions to problems when I’m not at my best. Last week, I was at the grocery store with my portable liquid oxygen stroller. I cranked it up to 10 liters per minute and walked slowly, leaning on the cart.

As I walked back out to the car, I became out of breath. My reaction was, “Oh, that’s weird.” But I never checked to see what the problem was. When I sat down in the front seat, I noticed the cannula had pulled off of the stroller, and I wasn’t getting any oxygen. No wonder I was out of breath! It was very upsetting to realize I hadn’t looked down to figure out what the problem was.

Just a few days ago, I woke up and was very cold. I snuggled up in my blankets and couldn’t imagine getting out of bed because the room was so chilly. My husband came in after a while to check on me, and I told him I couldn’t get out of bed because it was too cold. He looked at me and turned on the space heater that was right near my bed. I couldn’t believe I didn’t think of it.

It’s been very discouraging to see brain fog affecting my ability to think clearly.

Ways to cope with brain fog

  • Tell your loved ones this is happening so that they understand the changes they see in you. I forget things from time to time, and often tell my husband, “I know you already told me, but could you let me know again?” Ask loved ones to help you think through things.
  • Make rules for situations you have trouble with. For instance, I have a rule that if I ever start coughing like crazy, I put on my oxygen mask until the cough goes away. This helps me, but I doubt I will think of it at the time.
  • Keep a notebook by your side to write down important things you don’t want to forget. Every week, I make a list of all the things I need or want to do. This really helps me remember things that are important.
  • Use your oxygen as much as you need to in order to stay above 90 percent saturation rate. Exercise as much as possible to make sure your brain is getting the oxygen it needs.
  • Eat a healthy diet to give your body and brain the nutrition it needs.
  • Try a brain training program to keep you as sharp as possible. Here’s a great article about which brain training programs really work. Harvard Medical School has published a very helpful report on how to improve your memory.

Why does this happen?

Good question. It’s complicated. Check back next week when I address this important issue with input from Dr. Noah Greenspan.

I’d love to hear from you

Do you struggle with brain fog? What tips and tricks have helped you manage your tendency to not think as clearly as you used to?

Please leave a comment below or on social media.

***

Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.

20 comments

  1. Katie Broach says:

    I have trouble finding the WORD I am looking for. I’ve had this difficulty for some time but it is decidedly worse. Since I had a brain bleed this winter w/no loss, I know folks attribute my loss of words to that, but I suspect much of it is this brain fog. At 80, my executive function (frontal lobe) is lacking. Sometimes conversation is a struggle. Usually I can remember what the letter the word BEGINS WITH and little more. I experience the same loss of words during emailing. I am not on oxygen yet. I am distracted by frequent AFib, though. PRAY FOR A CURE especially for the young people challenged with this disease. I’ve had to give up coffee which I think helped clear the cob webs. God bless and keep on keeping on.

    • Karen Dowdy says:

      Katie, Having parents who both died of Alzheimers, I’ve always been scared I would go down the same path. I was only diagnosed with PF early this year and not on O2 or meds at this point. But your description of “loss of words” is a picture of me! Last week I was doing my grocery list and went to write down a word that I knew began with “H” but the only word I could come up with was “hives”. Knowing that was NOT right, I kept thinking. I’ve been asking my husband for help when it happens but decided to do this on my own. I finally wrote down “oregano” bc it “explained what I was looking for” altho not the right item. A week later the word “herbs” came to me out of the blue! What is going on??? This is happening more and more frequently!
      Hx: Age 65! I’d had dry cough and “breathlessness” that we kind of ignored for a yr…then began losing wt (40 lbs in a yr). They’ve scanned and tested almost everything they could on the “cancer search”. Thankful no cancer but still no known reason for the wt loss. It’s leveled off w none in the last 3 mos, but no gain either. No one knows why. It was on the (various organs) CTs that the PF showed up…not on 1 but 3 over about 9 mos. Sent to Pulm and Hi Res CT showed PF and brochiectasis. Also diagnosed w adult onset asthma. Plan is to scan again in Aug and if any change will be sent to a COE for consult.
      I was a RN for 38 yrs–writing grants, Joint Commission and Magnet application documents, care plans, policy manuals, stats, etc was one of my greatest strengths. To think that now I can’t even come up w the simplest of words is frightening. Emailing (even writing this) is difficult and taking forever, but not being able to come up with words in a conversation is so embarrassing. At least the two of us now know we are not alone. Keeping you in my thoughts and prayers. Take care!
      IF anyone has input on what might be going on, please share!

  2. Annette Cea says:

    I was diagnosed 2 yrs. ago & was told 24/7 oxygen.My life has become very difficult I am 79 yrs old. Had to have prednisone at one point after my apt had to be sprayed for fleas since my puppy baby had gone to an outdoor park & brought fleas home. On prednisone for 8 months am off now…but aging is a process adding to my fog brain besides P.F.
    .

  3. Andy from Virginia says:

    The biggest thing I have noticed of late is that my mind wanders when I lay down at night and I can’t concentrate on any one thing like I used to. I am finishing up the second year of my diagnosis. I don’t know if it is due to the IPF or the drugs, but it is very apparent it is occurring. I seem ok during the daytime however.

  4. robert o'brien says:

    I don’t know how old you are but at 72 I forget things. JEOPARDY answers that I used to know like my own name escape me (very frustrating). The same with words at times. I have IPF but other than that I am in pretty good shape. Having “passed” all the tests for transplantation, I have been told I am too stable and next month I go back to MGH for follow up and continuing evaluation so as to keep me in the loop, so to speak. Loss of memory, at least to me, is a product of aging and not necessarily due to fibrosis. Every day I get up is a gift. I sense I have had this disease for 4 or 5 years although diagnosed in November of 2015. Esbriet seems to be working for me as well. I use O2 when exerting myself i.e. pulmonary rehab. But I don’t believe the O2 helps me breath or contributes to SOB but rather keeps my SpO2 levels at 88+ which may sound odd but I am always acutely aware of where those levels are and that if I let them drop too low I could suffer a heart attack. Sitting here right now without O2, my SpO2 level is 95%/65. I wish you well and continued good luck with your testing. It isn’t fun but it is a positive step and anything that keeps us positive is a plus.

    • Hi Robert. Thanks for sharing with us. I’m 62, so aging isn’t as much a part of my brain fog as it is for some. So glad you are stable now. Thanks for all your kind words. Best wishes to you.

  5. Sheila Blanchard says:

    Hi Kim I was diagnosed with IPF two years ago. I am 79 years old.I have been having brain fog which I contributed to age but now understand could be IPF,I was put on OFEV when diagnosed but had some effects had bad diarrhea which made my magnesium go almost flat and ended up in hospital, so had to come off.I am not on oxygen yet.Thank you for the information

  6. Rose Miller says:

    Hi Katie,
    Your challenges with this disease sound very familiar to me. I am going to be 77 next week and was diagnosed in Oct/2015. I had been tell my primary care doctor that I was having a cough and shortness of breath, so I was sent for a stress test . I didn’t last on the treadmill for more than 3 minutes, but the tech said he had enough info, which later showed no indication of heart problems. I am overweight, but not grossly, so I was told I needed to pump up my exercise and eat a healthier diet. The cough continued to get worse and more frequent. Finally they sent me for an X-ray of my lungs which showed some fibrosis and scarred which they said could have been from a previous infection. Long story short, they did a CTscan, and sent me to Temple Lung center where I was finally diagnosed. Shortly afterwards, I was put on OFEV, and I remain stable since then, but am on 2 ltrs. of oxygen through the night and only if I need it during the day. I have the same memory losses and minor inabilities to concentrate, and I do forget names, places, etc. I keep my phone handy so I can google words, spellings, etc. Things that were simple are now getting more difficult, so I just hang in and take one day at a time and am grateful that I am still here to enjoy family and friends. Like you, I pray for the young people who have a lifetime ahead of them cut short by this nasty disease. As I say to everyone, never give up hope, research shows strides being made, maybe we won’t see the cure, but hopefully the younger ones will. Take one day at a time. 🙂
    Rose

  7. E. hays says:

    Aahhh, Brain fog! It seemed to come about gradually, until suddenly it was very obvious. I was diagnosed nearly nine years ago with IPF. I read via Internet investigation that I had approximately 3-5 years of life remaining. So I just never thought about the diagnosis anymore and got on with my life. As soon as Esbriet was approved by FDA I began taking it. One of the biggest side effects came within first six months when I completely lost my appetite and had to force myself to eat. After quickly losing 20 pounds (fine with me) Esbriet was backed off to maintenance level and I’m doing much better. However there’s no doubt, shown by latest PFT, that things are no longer stable. I suspected this when I noted “brain freeze”. I did think this may be partially caused by my age (84), it manifested itself also when reading, I began to note my comprehension was getting worse. Taking rereads of many news articles to get the gist, and now occasionally becoming a bit confused when driving (even with oxygen usage). My latest PFT confirmed oxygen diffusion has dropped 2 points. And that’s life ……

    • Hello E. Hays,
      Thanks for sharing your story. We all have a different path as we try to negotiate our diagnosis. Sorry for the brain fog you are dealing with. Best wishes to you!

  8. Colleen Puniard says:

    Thank you Kim. Another great article. I’ve been wondering if my brain fog is coming from low o2 levels. Not on oxygen yet but normal breathing is about 87% exertion is below 85%. My Dr hasn’t seen this yet. Maybe my oxymeter is faulty. Doing Sleep Lab on Sunday night so that might clarify some things.
    I’ve experienced brain fog just as you describe it. Often have to rephrase fb stuff to avoid using words I can’t spell. It was never my forte but this is ridiculous. Spell check is not always friendly!

    • Hi Colleen, Thanks so much for your encouragement. So glad the information was helpful. So glad you are getting a sleep study. Your oxygen levels should be above 90% whether sitting or upon exertion. Hope your doctor prescribes oxygen for you. It is a hassle, but you’ll feel much better. Best to you…

  9. Jo Ann Whitfield says:

    Collen You should tell your Dr. right away of oxygen below 90% Low o2 can effect your brain and entire body. God Bless all

  10. Anita Gillard says:

    I have IPF and have been on oxygen for almost 2 years. Until I read this article I had no idea that the brain fog has a name and I’ve noticed it more and more. I thought it was chemo brain because I have cancer, as well.

Leave a Comment

Your email address will not be published. Required fields are marked *