ALS News Today Forums | Patricia Koopmans | Activity https://alsnewstoday.com/forums/members/pattik/activity/ Activity feed for Patricia Koopmans. Thu, 23 May 2024 23:56:58 -0500 https://buddypress.org/?v=2.6.10 en-US 30 hourly 2 83a35dd5a50927fdc6915a2dfc82be12 Patricia Koopmans replied to the discussion What’s the biggest ALS-related change you’re dealing with right now? in the forum Living With ALS https://alsnewstoday.com/forums/forums/topic/whats-the-biggest-als-related-change-youre-dealing-with-right-now/#post-25412 Sun, 05 May 2024 00:38:38 -0500 Reply to What’s the biggest ALS-related change you’re dealing with right now?

Hello all! I’m asking a question in this thread. Do any of you experience incontinence or have scalp issues? I developed early on and have recurrent bouts of psoriasis on my head. I treat it topically but when I checked google it seems to be yet another issue for us. On the incontinence issue, I think my nerves are failing me there as well. Just…

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]]> 4a325bb3282b7a22bbff97bc8f3689f9 Patricia Koopmans replied to the discussion How do you want your doctors to talk to you? in the forum Living With ALS https://alsnewstoday.com/forums/forums/topic/how-do-you-want-your-doctors-to-talk-to-you/#post-25331 Tue, 02 Apr 2024 20:30:46 -0500 Reply to How do you want your doctors to talk to you?

The best care I got was with a study I did in Florida at Gainesville University Hospital. I’m in Chicagoland but like others the Dr I see asks the same questions every time. I do like the ALS team members that assist in equipment etc. I wish the Dr would at least remember me!

]]> 264329a4ea11f49d8f9a614c79972e1b Patricia Koopmans replied to the discussion How do you tell children about ALS or other diseases? in the forum https://alsnewstoday.com/forums/forums/topic/how-do-you-tell-children-about-als-or-other-diseases/#post-25264 Thu, 07 Mar 2024 22:55:49 -0600 Reply to How do you tell children about ALS or other diseases?

Interesting enough are adults who don’t know what it is either. My grandchildren are told I’m ‘sick’ but you can’t quite see it. I’m a year in and still walking with a cane. But yesterday I got a haircut and asked the stylist to hold the chair as I departed. I told her thanks and that I have ALS. She looked at me blankly. Had no idea. Every…

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]]> 06db02bcd1994d773fefff1175c3523d Patricia Koopmans replied to the discussion Tell us 5 lessons you have learned this year that help you live with ALS in the forum Living With ALS https://alsnewstoday.com/forums/forums/topic/tell-us-5-lessons-you-have-learned-this-year-that-help-you-live-with-als/#post-24974 Tue, 12 Dec 2023 20:14:06 -0600 Reply to Tell us 5 lessons you have learned this year that help you live with ALS

1. Cherish each day we have

2. Don’t forget to ask! People in my life are thankful to help

3. Stay active as much as you can

4. Love those around you fiercely

5. Have patience with your downfalls. I broke my wrist in a fall but in therapy am learning how to change things so I walk better!

]]> 1d670bd509451c01cb273fe4e47b057d Patricia Koopmans became a registered member https://alsnewstoday.com/forums/activity/p/18788/ Wed, 05 Apr 2023 13:06:10 -0500 2