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Ginny
@ginny1952

Posts: 17
Joined: Jul 07, 2016

Several Issues: Early onset Alzheimer's, neuropathy & RLS

Posted by @ginny1952, Aug 9, 2016

My spelling has gone out the window…I have complex partial seizure’s, early onset Alzheimer’s (just diagnosed) and preferial neurophy (sorry tried 10 times to get the spelling) and RLS. I am sick and tired of all the meds. they have me on. Its awful. any ideas where I can start to help me. Struck by lightning over 30 years ago and very thing is showing up in the last 5 years.

REPLY

Good morning @ginny1952.
Sounds like you have your hands full. I am not a physician but I can certainly relate to wanting to get off some medications. I to have complex partial seizures amongst other complications. It took many years to find the right medication. Here is some information that you and your physicians might find useful in weeding through medications that you might be able to eliminate or give you peace of mind that you are on all the right things.
http://mayoresearch.mayo.edu/center-for-individualized-medicine/pgx-profile-service.asp

Thanks
Dawn

Not that I am a believer in acupuncture, but just wondering if you have ever tried it!!

Hi @ginny1952,
I’d like to introduce you to a new Connect member who also has early onset Alzheimers. Please meet @nocaregiverneedednohelpavailable.

@nocaregiverneedednohelpavailable when were you diagnosed with early onset? Ginny was just recently diagnosed.

You are not alone. I have a seizure disorder and neuropathic pain. A support group really has helped me. I hope you are able to find one. Good luck to you

Just received additional diagnosis of Alzheimer’s so is there a group you recommend, as I live in the country and driving is not allowed for me.

Ginny, Here is a listing of local support groups from the Alzheimer’s Association http://www.alz.org/apps/findusall.asp.
Additionally, I hope that Connect can be your online support group in addition to a local in-person support group or should there not be a support group in your area. You’re not alone. We’re listening.

The diagnosis of Alzheimer’s is scary. I can find lots of info or contacts for caretakers but what about us I would like to I there contact group in this chat if there is please I want to be a part of it. Please contact me.

@ginny1952

The diagnosis of Alzheimer’s is scary. I can find lots of info or contacts for caretakers but what about us I would like to I there contact group in this chat if there is please I want to be a part of it. Please contact me.

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Hello @ginny1952. Nice to meet you, at least electronically!

I am sorry to read of your medical challenges and, yes, a diagnosis of Alzheimer’s disease must, indeed, be scary for you. While I do not have the disease, my mother-in-law had dementia for many years and my wife and I participated in her care. Also while I am not a medical professional at all, I did spend years as a fundraiser for the national Alzheimer’s Association. Do not lose hope! There are new strides made in Alzheimer’s disease research almost every day now!

There are several folks here who can help with a bit of advice, support, and perhaps more ideas for you. One of the best aspects of Connect is you can simply ask anything, come to talk, or simply read and listen in!

I find that sometimes just typing out my fears can help me cope with them better.

I wish you strength, courage, and peace.

Thank you!

@ginny1952

Thank you!

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I too am dealing with this with my Mom. I pray for discoveries to help her!

Hello,
I am joining this site to find help from a patient advocate at mayo clinic in Rochester.
My aunt needs to be evaluated for Alzheimer’s. She has begun to show signs of the disease. She has a family history of Alzheimer’s, with her father and two brothers dying from Alzheimer’s.
The issue she is having is getting her primary doctor to refer her to Mayo in Rochester for a consult/ evaluation. She will not.
My auntie is suffering and needs someone to champion for her. Any suggestions would be appreciated.
She lives in Minnesota and I live in California, otherwise I would be at Mayo until she can be seen.
Thank you, Karen

@karenahmari

Hello,
I am joining this site to find help from a patient advocate at mayo clinic in Rochester.
My aunt needs to be evaluated for Alzheimer’s. She has begun to show signs of the disease. She has a family history of Alzheimer’s, with her father and two brothers dying from Alzheimer’s.
The issue she is having is getting her primary doctor to refer her to Mayo in Rochester for a consult/ evaluation. She will not.
My auntie is suffering and needs someone to champion for her. Any suggestions would be appreciated.
She lives in Minnesota and I live in California, otherwise I would be at Mayo until she can be seen.
Thank you, Karen

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Hello @karenahmari I am Scott and it is nice to make your e-acquaintance here. I am sorry to hear of your Aunt’s diagnosis. My mother in law had dementia and also lived in Minnesota, as we did at the time. My wife, who had brain cancer also exhibited many symptoms of dementia and benefitted greatly from the expertise of the doctors at Mayo Rochester.

My first suggestion would be to ask your aunt’s doc why she will not make the referral. In our case several times a GP was reluctant it was because they were in over their heads in a particular area, but refused to see or admit it. I know questioning medical folks can be tough, but it would be my first step as you are right — she needs a champion!

If you have POA for your Aunt you can perhaps do even more for her in this arena.

The dementia program and doctors in Rochester are truly gifted and amazing.

I wish you well on this journey,

What is a POA?
Karen

@karenahmari

Hello,
I am joining this site to find help from a patient advocate at mayo clinic in Rochester.
My aunt needs to be evaluated for Alzheimer’s. She has begun to show signs of the disease. She has a family history of Alzheimer’s, with her father and two brothers dying from Alzheimer’s.
The issue she is having is getting her primary doctor to refer her to Mayo in Rochester for a consult/ evaluation. She will not.
My auntie is suffering and needs someone to champion for her. Any suggestions would be appreciated.
She lives in Minnesota and I live in California, otherwise I would be at Mayo until she can be seen.
Thank you, Karen

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Hi Scott,
What is a POA?
Karen

@karenahmari

What is a POA?
Karen

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Sorry @karenahmari. It stands for Power of Attorney. They can be for specific periods, open ended, for all issues, or just one or two. I had one for my wife’s care and it helped immensely!

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