Charlene Marshall

Thanks so much for writing about this and sharing your experience with us Suzanne. I actually think I may have been told about this before for a dry cough and completely forgot, so thank you for the reminder. What does an “off-label drug” mean just out of curiosity? I’m glad it has alleviated your dry cough though, that would really help me! Do…[Read more]

I hope so too Suzanne! It does sound promising, here’s hoping this research leads to positive things of our PF community 🙂

Hi @carmela,

So nice to hear from you! Thank you for your kind words regarding my trip to Hawaii – it was a trip of a lifetime, and one that I’ll never forget. I am so grateful that my lungs cooperated and that I was able to push myself physically, beyond what I thought was possible. Swimming with the dolphin was my favourite thing I think,…[Read more]

Hi Joan,

Thanks for writing and sharing your experience with gabapentin. I’ve heard it primarily prescribed for nerve pain, actually, so it was interesting to hear it being used to suppress the dry cough associated with IPF. Please do let us know what your pulmonologist says on Friday about it, always curious to hear. Goodluck at your…[Read more]

That is great to hear Jim, thanks for sharing! What dosage are you on?
Charlene.

Hi Robert,

Thanks for writing and for your kind words on my pictures! Hawaii was incredible – a vacation I won’t soon forget, and remain so thankful that I was able to get there and home without any medical crisis. In terms of that distance while using 02 – I am not requiring supplemental oxygen (yet!) 24/7. I typically only use it as needed, and…[Read more]

Hi Tom ( @tschnatz )

Thanks so much for writing and sharing this experience with us. I know I’ve been part of many conversations from patients about gabapentin and whether or not it provides relief from the chronic cough. Has your doctor been willing to increase the dosage for you, as needed, if you mentioned it provides some relief for a period…[Read more]

Thank you so much for your kind words Burma. I am home from paradise now and will forever treasure and hold dear the memories of this incredible trip. Seems fitting that this weekend is our Canadian Thanksgiving as I have much to be grateful for! I look forward to sharing more photos with everyone once the jet-lag wears off!
Kindest regards,
charlene.

Hi Marsha,

Thanks so much for writing – you’re so sweet, and that visual would be perfect. I sure spent lots of time literally floating in the ocean while here in Hawaii. Sadly, the trip is coming to an end and I am now at the airport waiting to head back to Canada. It’s okay though, the memories are enough to truly last a lifetime and I will…[Read more]

Aloha Lesley!
Sending you love and best wishes from Hawaii – I am about half way to you right now 🙂

Charlene.

Keep us posted Merle! I’d love to hear about your experiences – this isn’t something I’ve tried yet but I’d love to hear how it goes for you, especially after a few sessions and comparing your PFTs. Best wishes!
Charlene.

Hi Bill,

Thank you so much for your kind words – it truly is a privilege to be part of such a special online community. Though, I certainly wish none of us were connected as a result this cruel lung disease.

Thank you for your kind words about Hawaii – I am so glad I was able to come here, and will cherish the memories of this trip for a…[Read more]

Hi Jacki,

Thanks for writing and sharing your personal experience with Healthwell Foundation. I haven’t used it, so any personal experience is appreciated. I’m so glad they seem to have helped you, and that you got the financial assistance quickly, or it seems that way, given your application in December of 2018. Stay well and thanks for…[Read more]

Hi Richard,

Thank you so much for sharing your thoughts on this topic – it is nice to hear from someone similar to my age regarding a disability and parking pass. Granted, I wish none of us were having to deal with this cruel disease! Unless a cold, or the weather (extreme heat/cold) are bothering me, I tend not to use or want a parking pass…[Read more]

Hi Suzanne,

So nice to hear from you, thanks for writing! Like you, I don’t want to identify as having a disability but having the parking pass is so convenient when we’re tired, or having really tough days. Sometimes even with my POC, it is easier to park closer to the door when I am carrying it because I do find it heavy! Appreciate hearing…[Read more]

Hi John,

Thanks for sharing your thoughts on this topic – it is so interesting to hear how different people identify with a disability after being diagnosed with this disease. It is always a good idea to get a disability parking tag, and then use it as you need/want to. Kudos to you for passing up the parking spot, that is good karma: may it come…[Read more]