An Unexpected Difficulty of Living with PF: Cognitive Challenges

An Unexpected Difficulty of Living with PF: Cognitive Challenges

younger than 30

It’s no secret that chronic illness complicates the lives of patients, regardless of the disease. While illnesses have many recognized symptoms, only patients are aware of the lesser-known complexities of each one.

Since my idiopathic pulmonary fibrosis (IPF) diagnosis, I have been consistently learning and adjusting to what I can and can’t do. As my disease worsens, this list changes. I am very thankful for the friends who assist and adapt with me along the way. However, I have one unexpected difficulty of IPF that people can’t help me with because it is an invisible challenge. If I don’t voice my struggles with it, no one will know that I now have a hard time with mental tasks.

Before IPF, my employable skills were described as “innovative,” “strategic,” and “a forward thinker.” Previous employers used these words in reference letters which accompanied applications for volunteer roles and graduate school. This is another identity that IPF has stolen from me, as I can no longer say these descriptions are accurate.

Connect with other patients and share tips on how to manage PF in our forums!

I struggle with “brain-heavy” tasks or during meetings that require intensive thinking. Following are some of the cognitive challenges I experience:

  • Brain fog: My amazing fellow columnist Kim Fredrickson wrote a column about PF patients’ struggles with brain fog. I hadn’t realized until then how real this problem was for other patients. I struggle to think things through clearly due to my mental “fogginess.”
  • Confusion with instructions: When I have to follow multistep instructions, I sometimes miss a few in the sequence. This even applies to numbers. To combat this, I’ve started to write instructions down. For example, I recently took two measurements for a project I was working on and I couldn’t remember them minutes later. I find this very frustrating as my work is detail-oriented.
  • Short-term memory difficulties: This is related to the confusion I have with multistep instructions. Shortly after a meeting, I struggle to remember the details of a topic that was discussed. I find this embarrassing.
  • Mental fatigue: I feel mentally and physically exhausted after meetings that require a lot of thinking or strategic planning. Sometimes I have a quick nap before I feel safe to drive home. I attribute this to my body’s chronic lack of oxygen.
  • Staying focused: When I get tired during a long meeting, I lose my ability to stay focused and my mind wanders. I can no longer fight the fatigue. I dread long meetings and prefer to keep them to an hour, though I know this isn’t always realistic.
  • Losing track of things: I’ve always been a very organized person. I hate clutter. In my home, there is a place for everything, so I know where it is when I need it. However, lately, I lose track of things easily — another invisible and unexpected complexity of IPF.

Can you relate to these unexpected but very real complexities of living with pulmonary fibrosis? Continue this discussion in our PF forums.

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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.

30 comments

  1. James Collier says:

    Hi my name is Jim, I have IPF and MS. I am 63, when I was 43 I found out I have MS. I was forced to retire in 2002 , I had real problems with my cognitive skills , my neurologist of many years recommended Aricept, which has worked wonders. I had no idea how bad I had gotten . Then two years ago I was diagnosed after a lung biopsy to have IPF. I am on oxygen most of the time. Found out if I am at sea level I can keep my O2 levels above 92-95 with no added oxygen. So I have moved to the beach part time. Also I found out years ago I can only handle 1/2 dose of my Aricept, so I cut my pills in half. Good luck, hope this helps.

    • Charlene Marshall says:

      Hi Jim,

      Thanks so much for reading my column and for getting in touch. I always love hearing from others, although sorry that it is our disease that brings us together. I haven’t herd of Aricept, is this a drug specifically for MS or is it used to help cognitive issues in patients with other diseases as well? Definitely something to look into, especially if the side effects aren’t too bad. Really glad it has seemed to work for you! Also interesting to hear the difference in your ability to maintain your oxygen levels at sea level – I really want to move to the beach, maybe this would be effective for me too 🙂 Thank you again for sharing, this really will help, especially for those who replied to my column about also experiencing the cognitive difficulties!

      Take care,
      Charlene.

  2. Terry Moriarty says:

    Geez, Charlene,
    I thought these issues were part of the aging process. I suffer from all of the items in your list. I prided myself for not having to keep to do lists. Now I can’t remember something I was planning to do a few minutes before. I used to have a photographic memory. Not any more!
    I’m so sorry that you are experiencing these so young. I guess I’m lucky that I didn’t start having these issues until after I retired.
    My biggest issue is the fatigue. If I go out, I know I’ll have to take a nap and probably have to sleep the entire next day. Once again, not a problem now, but I’m not sure I could have handled it while working. Commuting with oxygen was very exhausting. Thank goodness for telecommuting.
    I appreciate your sharing on such a regular basis.

    • Charlene Marshall says:

      Hi Terry,

      Thanks so much for reading my columns and getting in touch! So sorry you’re experiencing these things too, they are so difficult to deal with when trying to navigate life as normally as possible. I also need to make lists, and thankfully just always use the ‘notes’ app on my phone to start writing things down that I need to remember. It is frustrating, but is at least an option for me. I certainly can relate to you re: the fatigue. This is so frustrating and I hate having to “pay” for social outings by requiring rest the whole next day. The saga continues for us, doesn’t it? Thanks for getting in touch, I love hearing from you!

      Until next time,
      Charlene.

  3. Christina R Milano says:

    I know this feeling very well. For many years I led organizations as President or CEO. Now, I have difficulty remembering things and cannot stay focused during long meetings. My daughter told me she thought I had lost my executive function. She is probably right but it hurt to hear that.

    • Charlene Marshall says:

      Hi Christina,

      Thanks for reading my columns and for getting in touch, although so sorry you’re able to relate to this difficult side effect of living with IPF. It sure is disheartening isn’t it? I can imagine how difficult it was to hear and accept that, and I think the hardest part of the cognitive difficulties for me is that I don’t see any type of solution for it. I don’t know how to fix it unfortunately, but it does help to know that others are experiencing this as well and might have ideas for us. Hang in there, and feel free to write any time!

      Charlene.

  4. KATHERINE says:

    Separate from confusion with instructions, I get confused with directions, even driving to places I’ve been to before. Not unusual to go a couple of hours out of my way. I hesitate to make long trips like I once did. I’ve had a ‘memory test’ for dementia and even at 80, that’s not at issue at least.

    • Charlene Marshall says:

      Hi Katherine,

      Thanks so much for writing and sharing a bit of your experience, although I wish it was more positive for you. The cognition issue is really starting to worry me, because it is effecting much of what I do on a weekly (I wouldn’t say daily yet…) basis. I fear others in my workplace are going to start noticing too and then that could be grounds for special accommodation or worse. I can understand others’ instructions, but I usually need what they’re asking reframed or asked more than once. It’s tiring as I used to be so attentive to detail, but not anymore. Sorry to hear about your struggle with directions too, that must be worrisome and cause hesitation as you say. Have you brought up this worry to your physician? Curious to hear if he/she had any good advice…
      Hang in there!
      Warm regards,
      Charlene.

  5. Thanks for the article. I have had to stop preparing tax returns for the same reasons. Even with my genealogy hobby, I am having trouble keeping the various lines straight & instead of being organized, I have piles of paper and folders laying haphazardly all over instead of in my file cabinet.
    I can no longer handle stress. My brain just seems to shut off.

    • Charlene Marshall says:

      Hi Joan,

      Thanks so much for reading my column and for getting in touch via the comments. Sorry to hear you’re also experiencing this though, sure seems unfair for those of us already dealing with so many other IPF-related symptoms, doesn’t it? Can’t imagine how frustrating it must be for you to have had to stop your work due to the cognition issues, I fear that is not too far in the distance for me as well unfortunately but I dread that day. I like to be organized, but sometimes tackling the task to be that way is just overwhelming and like you, my brain just seems to shut off. This is especially true in trying to deal with the internal “crap” of my workplace lately and yet, no one seems to understand that. Thanks for providing me the reminder and comfort that I am not alone in this.

      Warm regards,
      Charlene.

    • Lynn Chidsey says:

      Oh my. I was an accountant. Can’t do it. What you wrote is me. I can’t take the least amount of stress. Just horrible😱

      • Charlene Marshall says:

        Hi Lynn,

        I am so sorry to hear you can relate to this unexpected difficulty I am also experiencing. It is terrible, isn’t it? Like you, I find my brain just shuts off with stress and I can’t handle it. Life is stressful, so I know it isn’t realistic to avoid all of the stressors but I am starting to embark on new efforts to remove anything unnecessarily stressful (or even the potential to be) in my life. It isn’t an easy task, but I am hopeful it will help. Are you still working? I can imagine an accountant role would be so tough with these cognitive issues. Hang in there!

        Charlene.

  6. Sylvia Scott says:

    I was glad to read your explanation of IPF and memory. I am 83 years old and a 14 year one lung transplant. I know I have experienced a loss of creativity and mental function. Of course everyone just think it is old age but I know better. I have found that getting a special routine helps. Since I am a polio survivor and now post polio so I am in a wheel chair. At night when I have a routine to get through. Like…rinse my mouth, brush my teeth, wash my face etc. I just keep repeating the steps. I was a very creative writer but it is hard now.

    • Charlene Marshall says:

      Hi Sylvia,

      Thanks so much for reading my columns and connecting via the comments. It’s nice to know others gain something from what I write, although I certainly wish it wasn’t this cruel disease that brings us all together. I agree with you re: the creativity and struggling with that a little bit. I try to keep busy mentally but my brain just seems to get so tired. Sticking with a routine is a good idea! So glad you’ve gotten 14 years out of your lung transplant, and wishing you many more. Thanks again for connecting!
      Warm regards,
      Charlene.

  7. Hi Charlene,
    My son came up when I was reading this and we had a good laugh, he said loose things? I couldn’t find my glasses last week, but it wasn’t my fault, they were under my bed behind the leg. I said they should have a sensor for that and guess what, they do $40.00
    I laughed at that. I lost the top for the coffeemaker, but I used the waffle Iron when my son and daughter came for Thanksgiving and there it was, on the tray. I blamed them, ha ha.
    So yes, not sure if it’s my age 71 or probably, partly disease. I try to write stuff down more often, I just saw someone with the address of Walter Reed for cards fro soldiers so I thought, “ I better write that down, and I did, now need to do that later, I’ll remember.

    Have a good week, and don’t worry people know now it part of this disease, I have lots of laughs with it.

    • Charlene Marshall says:

      Hi Mary,

      Thanks so much for reading my columns and getting in touch via the comments! I always love hearing from other readers, especially when their replies give me a chuckle like yours did. I really applaud your approach to this unfortunate side effect that comes with IPF! In your defence, losing your glasses is the worst because I always say (I wear glasses too!) it is impossible to find my glasses, without my glasses haha… interesting to know that there is a sensor for that. There seems to be an assistance-type/app for everything now-a-days, doesn’t there? I also write things down, everything goes in my notebook or my phone in the notes section so I don’t forget. Sometimes it is frustrating, but you’re right, I should laugh it off… I’m going to remember your story and try that next time instead!
      Have a good week, and thanks again for connecting!
      Charlene.

  8. Frank Runnels says:

    I was diagnosed with IPF about 18 months ago. I don’t have many of the same problems others speak of here. My Dr. put me on esbriet right away and although the side effects were bad the first three months, I feel like the drug helped. Not looking forward to all the effects others have had.

    • Charlene Marshall says:

      Hi Frank,

      Thanks so much for reading my column and for getting in touch with us. I am really glad to hear that you don’t have a lot of the same problems many of us share pertaining to our IPF, this is wonderful news for you and I hope it remains this way for a long time. Glad you’ve been put on Esbriet, and that the side effects are now tolerable for you. I’ll keep my fingers crossed that this continues. Enjoy this phase 🙂
      Charlene.

  9. Katherine says:

    For a period of time I had difficulty reconciling my bank statement which i had always done monthly. Simple math wasn’t so simple anymore. However, i pushed through that for three or four months and can now manage my account just fine and am even back to doing simple math in my head as i once did. i don’t think some of our new-found challenges are ‘forever.’ Pushing through them and given a little time, they may very well resolve themselves.

    • Charlene Marshall says:

      Hi Katherine,

      Thanks so much for sharing this with me, as it gave me a new-found hope that maybe my cognitive struggles I’m experiencing as of late aren’t permanent. The idea that they might be, and that I may not ever reclaim was I was able to do before I got sick, is quite overwhelming. I really find it is worse as well if I am tired, but I know the general, unofficial rule is that “fatigue makes everything worse”. When I’m tired its like my brain shuts off, and I can’t work through anything and that is really hard for me to accept. Interesting to know it lasted 3-4 months for you, and then it returned to normal. As I said, this provides me a lot of hope so thank you for sharing!
      Warm regards,
      Charlene.

      • Gayle HAMILTON says:

        Who do I talk to, PC Dr.or Pulmonary Dr. about cognitive function? My O2 is usually 85 to 95,and I’m on oxygen 24/7 with a 5 setting on the concentrator. I’m a 73 female and was diagnosed with IPF in 2010. I have been on Ofev (100 ml)for 3 years.

        • Charlene Marshall says:

          Hi Gayle,

          Thanks for reading my columns and getting in touch via the comments. So sorry you’re also concerned about your cognitive function, it is both frustrating and scary isn’t it? While I’m not a doctor and can’t say for certain, but to answer your question, I’d be more inclined to speak with your pulmonary doctor about your concerns? I think they might be more equipped with the information you need specifically around how your O2 levels could be contributing to your cognitive function. Let us know what he/she says if you do end up speaking to them about this topic, as it is one that it seems many of us can relate to, unfortunately.

          Warmest regards,
          Charlene.

  10. Jan Burd says:

    Thank you for being there with your blog. I was just diagnoised and am trying to understand treatment,side effects and what I can do for myself.

    • Charlene Marshall says:

      Hi Jan,

      Thanks for reading my columns and for getting in touch with the comments, although I am so sorry to hear you were just diagnosed with IPF. It is an overwhelming time, I unfortunately remember it quite well 2.5 years ago for me. A great place to start is to join our PF News forums, they’re free and there are lots of incredibly helpful and supportive people on there willing to share their experience. You can sign up here if interested:https://pulmonaryfibrosisnews.com/forums/

      Feel free to write any time, and take care of yourself as you adjust to your diagnosis.

      Warm regards,
      Charlene.

  11. Nelson says:

    In reading all or should I say most of your comments, in away there are uplifting…. why would I say that. Well it’s been around 3 years I have been diagnosed with IPF, been on Esbriet now for 2 years with no side affect. The doctor tell me things are looking good with the treatment. Now I came down with cancer in my prostrate, in which I am dealing with this with 9 weeks of radiation, every single day. I have 4 more treatment to go and I am done. With all this going on in my life, I thank Jehovah for the beautiful brotherhood I have that have kept me in there prayers…. Not leaving my lovely wife behind she has been a trooper by my side…..

    • Charlene Marshall says:

      Hi Nelson,

      I am so glad to hear that your lovely wife has been by your side through it all, and yes a band of people praying for us and uplifting us when we need it is so important, I agree. Glad you aren’t having any adverse effects of the Ebsriet and that the IPF management seems under control. Wishing you the best as you endure your 4 remaining treatments for prostate cancer. Sending up prayers for you!

      Warm regards,
      Charlene.

  12. Jeannine says:

    So happy to read these comments and learn that these brain fog moments are part of this awful disease as I didn’t know what was happening to me. This happens to me and I get extremely fatigued and have to stop and rest. I was diagnosed in 2010 and only started to feel the decline this last year. Hoping for an eventual transplant but fearful it may not happen because of my age. Fortunately I am very good healthy otherwise . I pray for all of you who suffer this and greatfull for this forum to connect with all of you. God bless

    • Charlene Marshall says:

      Hi Jeannine,

      Thank you so much for reading my columns and for getting in touch via the comments. I am always so glad to hear my topics are helpful to others, although I certainly wish no one was able to relate and that IPF just simply didn’t exist. It is an awful disease, isn’t it? It is something I didn’t even know about, the brain fog moments, until this year as I’d not experienced them prior. I found my body got tired, but my mind was still as “sharp” as it always was, if you could say that LOL. Now it is a different story unfortunately, and it is very clear to me when my brain is tired, and like you, I have to stop and rest. So glad to hear you’re in good health other than the IPF, that will serve you well as you embark on the eventual transplant journey. I am hopeful you can go that route as well! Hang in there and feel free to connect anytime. I’m really glad you’ve found this forum!

      Warmest regards,
      Charlene.

  13. Kate Flanagan says:

    A piece of information that I found very useful years ago…….after attending a lecture, conference or meeting, people only retain 30-40% of the information…BUT…..if you re read the notes within 48 hours, you will remember 70-80%. I was nicknamed “the scribe” by co-workers years ago and taking notes is especially helpful now. Make an effort to re read your notes.

    • Charlene Marshall says:

      Hi Kate,

      Thanks for reading my columns and for reaching out via the comments. Really interesting advice, and some information that I actually had no idea about. I will be sure to do this in future, and hope I can remember/retain more. Thanks so much for sharing!
      Charlene.

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