New person intro

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
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Toad
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New person intro

Post by Toad »

Hi Everyone

My Dad has E4E4 and had earlyish onset Alzheimers which has progressed quite quickly. (I am a relatively young Adult BTW with 2 young kids)
I have not been tested, partly for insurance and partly for sanity reasons, however I do have multiple metabolic issues which need addressing either way.

Pre diabetes - shown in fasting blood glucose - (this has intermittently been under control, but I have slipped back worse than before with stress eating over the last 2 years...) and a history of gestational diabetes x 2
BMI of more than 30, but to look at me you would not think me massively overweight. Just the tummy...
Thiamine Deficiency (B1) - both my parents have a mild version, but mine is quite severe.
Xanthelasma near eyelids
I have just today realised that my lipid levels are now screwy. (Unfortunately not picked up by GP in results but my Xanthelasma got worse and I went back earlier today and checked my last results) This is a shock as I had been advised by a geneticist that this was something that suggested I might not be in quite the same position as my Dad.
Multiple physical and digestive impediments which are being a pain in the butt to even diagnose, let alone manage, I seem to be getting somewhere, hopefully, finally, and am waiting to see more specialists.
Low fat diet as I have no gallbladder anymore and it upsets the system.
Gluten free, low dairy, low fodmap, issues with sulfur preservatives etc

Which along with being a night owl, having a sugar addiction, and not exercising regularly are not doing me, or my family, or my future any good.
I live in a small town (a village by international standards) in a small country with barriers accessing healthcare. And it rains a lot, (yes really, I essentially live in a rainforest) so getting outside for exercise is not always easy.

I'm mentally exhausted from advocating for myself (with the with physical impediments above) and caring for my Mum - (recent breast cancer among other health issues), My Dad (during Mums surgery and recovery - He just didn't understand) Supporting Mum with Dad prior to and post surgery, traveling to them, caring for my kids, and trying to do some home maintenance while there is a lull at work- which is on a volunteer basis currently (another story) and dealing with the significant dramas with my Husbands work from the last 12 months - our only income. Oh yeah, and trying to get our garage rebuilt after the garage fire last year. I realise this sounds like an implausible storyline for a novel or movie - when Mum got her diagnosis we resorted to madly cackling with laughter. (We have a dark sense of humor)

I'm a mess, stressed, and trying to be kind to myself usually results in sugary treats. Unfortunately I am practised at pacing myself with activity and getting things done, but this does not always align well with exercise:(

I know that eating better, getting better sleep and losing weight as first steps, will help with so many parts of my life.
But man, changing habits is hard, and takes energy. And I think the hardest part is going to be putting myself first and advocating (even more) for myself.

I have read the primer which is great. on the home truths front. And I do have one thing in my favour -from the primer - section 9: reducing inflammation in your body.
'addition 2018: Searcher, one of our members, posted this excellent study which show an increase in effect of anti-inflammatory pathways with increased happiness. It's very interesting - happiness that comes from a sense of purpose in terms of meaningful and pro-social goals, rather than self-gratifying hedonism appears to switch off inflammatory genes at DNA level. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4374902/'
My 'work', although currently volunteer, has been going on for 5 years. It is really tough, and an uphill battle, but is definitely 'meaningful and pro-societal'

I wish I could be more upbeat with this intro, but honestly I am just happy about finding this forum and others on this journey - although others are perhaps a little further ahead than me.

I realise that there are a lot of I's in this intro, and normally I would change them. But not today- this is me putting myself first in a small introverted way.

So, hi everyone. This is crazy old me.
abalboa
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Re: New person intro

Post by abalboa »

Good morning!
I admire your bravery in sharing your story, advocating for yourself and reaching out in this forum. It is so hard to balance caring for children, parents & yourself all while juggling the unending circumstance that life throws at us.. It sounds like you have educated yourself on a lot of the changes that can support your health and are working through your how and why! Please continue to share here and , if you are open, read some of the others stores as well. As a caregiver, mom and all the other things myself... it has been so helpful to know your not alone and that as they say on an airplane "put your own mask on first". We have to take care of ourselves to take care of others....
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GingerGrace
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Re: New person intro

Post by GingerGrace »

Toad wrote: Tue Mar 07, 2023 2:32 am Hi Everyone

My Dad has E4E4 and had earlyish onset Alzheimers which has progressed quite quickly. (I am a relatively young Adult BTW with 2 young kids)
I have not been tested, partly for insurance and partly for sanity reasons, however I do have multiple metabolic issues which need addressing either way.
Welcome Toad! Thank you for taking the courage to join our site and post in our forum. We are happy you found us and look forward to supporting you on this journey. I am sure other members will provide you with some feedback.

As a Welcome Intern, I'd like to officially welcome you to this caring, giving and knowledgeable group. If you would like to explore the site in more detail, I can share several tools/resources to help you get the most out of your experience. I'm glad you have read the primer and found the resource valuable for your circumstances. There are many others so please reach out if you have any specific questions and I will connect you with others to save you time searching.

Some helpful tips to navigate the site include the How to Guide that offers tips on how to navigate forums, including how to quote members when you respond to posts so they get an email notification of your post (tip: use the quotation icon in the upper right of any post). The How to Guide also demonstrates how to use the Search function for topics and how to subscribe to topics of interest in the forums.

The Wiki is another resource full of information that you might helpful.

Finally, if you would like to learn more about other community members' experiences or even continue to share more about your own, feel free to link to Our Stories.

Again, I am so glad you joined our forum. I look forward to hearing from you in the future. Please feel free to reach out anytime.

Warmly,

GingerGrace
TLS
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Re: New person intro

Post by TLS »

Welcome Toad! You sound very self aware which is great! You have a lot going on there. I can relate to some of it as I am also trying take assist my parents from a distance away and manage my own medical issues and job. Some days can be extremely stressful and thankfully other days are good.

Perhaps you can try to do something nice for yourself each day. You're a busy person but I bet you can find 5 - 10 minutes to do something just for you. Journal, read, meditate, read some funny things or watch some funny youtubes.... whatever brings you joy. My own personal tactic is to have a morning routine for myself. I do a 5 minute meditation, read, stretch and sometimes journal.

Take care and again, welcome!
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Re: New person intro

Post by TCHC »

Hi Toad,

Firstly, really well done in finding out so much information to help yourself, whilst juggling lots of other family stuff going on. I know what that's like.

You sound a bit overwhelmed/stressed... is that right? There's a lot to work on, I know.

Maybe just pick one small thing and work on that. And that could be a pleasant thing, something you'd actually look forward to, something that would be relatively easy to do. Then, once you have that under control you might feel a bit better about tackling the next thing. Before you know it, you'll be looking back, realising that you have changed so much and are feeling so much better.

Do let us know how you're getting on - I wish you all the very best in your journey.
Lindsey
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Jane S
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Re: New person intro

Post by Jane S »

Toad wrote: Tue Mar 07, 2023 2:32 amAnd I think the hardest part is going to be putting myself first and advocating (even more) for myself.
Toad, I'm so glad you found this community. I hope you find the info, inspiration, and support that you need.

I resonated with many things in your post, but especially the part about the challenge of putting yourself first. One thing that has helped me with this challenge is reframing it a bit. I don't think about putting me first, but instead about putting me on the care list. I care for various loved ones; they all deserve my help, but so do I. The healthier and strong that I am, the better able I am to help the others on my "list." Maybe you could consider elevating a few of your needs a bit.

Take care.
-- Jane --
(daughter, granddaughter, and niece of people who lived with Alzheimer's)
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Toad
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Re: New person intro

Post by Toad »

Thankyou everyone for your responses. Yes - overwhelmed is a good description.

I really like the concept of putting myself on the care list.

I have realised that my personal pain management has been part of the picture lately. I have managed to meet with my doctor and have now got another option while I am waiting for a specialist appointment.

I had not realised how much pain was affecting my day to day activities. I think my first goal needs to be daily exercise - a walk, or even just stretches. keeping my body moving seems to help keep the brain going too:)

T
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