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Hello, everyone! Newbie here...
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kauma posted:
I've found myself as a caregiver to a friend with MS. She disputes the diagnosis (partially) because she feels that her primary physician and neurologists are dismissing other physical issues that she has. I have much experience with other disabilities, but not so much with MS. I'm trying hard to help her, and I feel I'm not doing as well as I might.

I have many questions...any takers?
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hackwriter responded:
Fire away, kauma, we'll do our best

Kim
 
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kauma replied to hackwriter's response:
Thank you so much! I have many questions, but I'll pepper you with just a few for now. (I wrote up some semi-clinical intake notes two weeks ago...anyone with lots of time is welcome to read them.)

First, diet. L has a colostomy bag, and avoids certain foods because she thinks they're gaseous. Vegetables, for example. But she eats full-fat dairy, wheat, saturated fats, and potatoes. She takes no supplement other than vitamin D. I'm encouraging her to eat more healthfully, but she's fighting hard for her independence. As she should. Suggestions?

Second, humidity. L. is always parched, as is her skin, no doubt in part because the A/C is on constantly. She worries that a humidifier would exacerbate her symptoms. Thoughts?

Third, padding. L. is very thin and has little muscle mass. It's painful for her to lie in bed - which is where she is all the time. Her landlord (a walking saint) created some strap-on pads of cut-up foam rubber. They work, but they're not ideal. Recommendations?

Fourth, paranoia. L. is fretful and forgetful, and doesn't trust easily. Understandable. She has reason to be mistrustful, from what I've heard, even of family members. She expressed some suspicion about me yesterday, and I'd like to address it cautiously. I've worked for years with people with dementia, but that isn't the case here. Insights?

Thanks again for your response (sorry for my long one). I've posted on two other sites and have yet to see a reply.

Thank you!!!
 
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hackwriter replied to kauma's response:
kauma,

Your descriptions and questions do raise more questions. Sounds as though L might have other medical conditions besides MS. How involved are you in her care? Do you go with her to doc appointments and are you in touch with the team that manages her care? Your questions would best be answered by nurses and doctors.

That said, here are my thoughts on the issues you've raised:

Diet: Sounds as though L doesn't like veggies and fruit. But if gas really is the problem, she could chew on Beano tablets before taking the first bite of food, or another kind of digestive enzyme. Another tasty way to get veggies and fruits is to make smoothies with them. There are lots of recipes on the internet. Eating fresh fruit is a good way to get better-hydrated, too. It's more effective than drinking plain water, and delivers vitamins and fiber besides.

Humidity: Heat and humidity are the arch enemies of an MSer. Our symptoms will worsen on a high heat/humidity day, even when we chain ourselves to the A/C. I do use a vaporizer every night during the winter months, since forced air heat dries me out terribly and causes discomfort. But I'm not convinced that A/C dries us out like furnace heat does. I've never suffered from dehydration with A/C.

If L is parched while using A/C, I doubt that a humidifier is going to be the answer. I'm often dried out from a combo of medication side effects and from not drinking enough fluids with electrolytes. Consult the side effects lists of her medications or ask her medical team about them to find out whether her meds are causing dryness.

I've found relief from using saline nasal spray, sucking on hard candy/vitamin C lozenges, and drinking sugared drinks during high heat/humidity days. Sugar is a better hydrator than water. Gatorade is more effective than plain water. As I mentioned above, eating a few grapes is instant relief from that parched feeling. Fresh fruit everyday! To further hydrate dry skin, I recently switched my soap from Dial to Dove. The added moisturizer in Dove helped and I use half the amount of lotion after washing than I used to. And I don't itch anymore.

Also consult her nurse/medical team for professional feedback.

Padding: My mother was recently in hospice, and they put a mattress-length piece of foam rubber underneath her once she became bedridden and started developing sores on the pressure points of her lower back. So it sounds as though the landlord has provided the best solution. There's also the option of using a memory foam mattress topper. But a lot of MSers complain that memory foam retains body heat, causing the MSer to wake up in a sweat in the middle of the night. I use a memory foam contour pillow and I've never had that problem with heat myself. We're all different.

Again, consult her medical team about her pain issues. A combo of medications, adequate padding, and making sure she changes position every two hours might make a world of difference in her comfort. I would think that her insurance, Medicare or otherwise, would pay for a portion of a mattress topper, they are available in medical catalogues, but L's medical team should be a resource for ordering those supplies, too.

Paranoia: Once more, has she been evaluated by a medical team? Medication might be appropriate if she is feeling anxiety and paranoia. Lots of MSers take anti-depressants for mood disorders, valium for other symptoms besides anxiety. Some meds that treat mood disorders are used off-label for MS-related pain and fatigue, too.

I hope you'll get more responses and suggestions from others here. And by the way, kudos to you for being such a good friend to L and trying to learn everything you can about this disease and its symptoms and treatments. She's lucky to have you.

Kim
 
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kauma replied to hackwriter's response:
Bless your heart...thank you. I've printed your response and will read it to L. tonight.

Much will change, though, because I've been replaced as primary caregiver. (Looooong story.) I'll certainly pass on the information I've learned to my replacement, and I'll certainly stay in touch with L.

And with you, too, if I may!


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