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AFRAID of new diagnosis
oncape
Posted: Friday, May 15, 2015 2:20 PM
Joined: 3/4/2015
Posts: 4


I was recently diagnoses with early onset Alzheimer Disease, 56 years old. I am totally flipped out by it, as is my partner, although she "has known" for a while. I am also on Aricept and have side effects, BUT am also Bipolar and have just done a total med flush and am going on new meds for that, and they have some of the same side effects, so I am hoping they go away with time...totally holding out for that! The agitation, anger, depression, anxiety, panic, muscle rigidity, blood sugar issues, excessive sweating, BP changes, dizziness, and on and on...well, I see so many DR's I can't keep up...many lists and a wall of chalkboard paint with a listed appointment schedule helps. My partner helps, is wonderfully tolerant with my shortcomings, but has issues with the anger/agitation and she is here so gets the brunt of it...totally unfair. I am basically mad at the world at this point.
Anyway, I appreciate all of your posts and wisdom.

GwenD
Posted: Friday, May 15, 2015 3:36 PM
Joined: 11/27/2014
Posts: 88


I was diagnosed in December 2014, age 51) I also have bipolar and it took many years to get it under control. I was on aricept 5 mg but I too had the side effects angry agitated, etc. I did not consider a total med flush, how did you handle that? I don't know if I could handle it or worse yet my husband.

I also got the side effects from the aricept of muscle cramps and frequent urination.

I was on it for 2 weeks and the dr took me off it because of my anger, mood swings, etc. so now I feel I am doing nothing proactive again.

Mimi S.
Posted: Friday, May 15, 2015 6:50 PM
Joined: 11/29/2011
Posts: 7029


Hi again Gwen ad welcome to pur wrld Oncape.

I know nothing about meds for Bipolar and how they interact.

I'm just thrilled that you two have met and can be each other's support.

alz+
Posted: Saturday, May 16, 2015 1:52 AM
Joined: 9/12/2013
Posts: 3560


This is a great place to share mental health issues and discuss how they blend into the ALZ treatments.

I had been diagnosed bi-polar12 years before the ALZ diagnosis and whether that is a helpful diagnosis or not I have had a life of severe depression and some manic highs related to producing novel length works of fiction or remodeling!

I had to go off my anti depressant (Prozac - ultra small dose) when I got diagnosed because there was some interaction between ??? anyway, the psychiatrist had me wait 5 weeks to start a new anti depressant, ZOLOFT, which he said was the only safe one for me considering the changed status.

That withdrawal and the Aricept made me so agitated and upset, one of worst months in my life. I recently read Celexa is supposed to be safe for ALZ depression but who knows. Lower doses can work better.

The treatment for ALZ is a place to live free of clutter, easy to move in, easy to use, loving, safe, a living space to minimize the brains work to move around. Best Practices are a healthy diet, exercise of any kind you enjoy and will do, as much socializing as lifts you up but does not overwhelm you, a good night's sleep, and in general what anyone does to promote health.

The fear that comes after the diagnosis is natural and part of any terminal diagnosis. We handle it differently but an anxious feeling is a common symptom of neurological struggles. I found giving my anxiety a high priority was my cornerstone to my treatment and I do what I can to resolve conflict, understand what is it I fear (mine was becoming helpless/dependent) and soothing that anxiety. I use medical marijuana mostly as I can take it for instant relief and no bad side effects, and also use lemon balm capsules, Lavender essential oil (inhale, put on sheets too), and have a prescription for Ativan.

We are all going to die, obviously we knew that, but a diagnosis is a call to get our lives in order, to consider how we want our days lived from now on to be, find some meaning in how we spend the end of our functional days.

I think you might prepare for a new understanding of this illness and new treatments that actually stall or even reverse the course in your time.

thank you both for sharing your personal stories. hope to read more about how you set yourselves up to go through this. There are often really good days, enjoy.

love and courage




Lisa Ramey
Posted: Saturday, May 16, 2015 9:19 AM
Joined: 6/20/2014
Posts: 160


Dear OnCape,
Welcome to the boards. You will find a diverse group of souls trying to find their way the best that can. I will say I am the Resident Humorist. I love laughing.
I am 1 year into my journey. I have run maze of emotions. I also am the odd one who just takes my meds and do like I want. I still smoke I eat whatever I like I live for today and work on my BUCKET LIST.
Welcome I do hope you will post often. No judgment found here. Be good to yourself.
Lisa Ramey

Can't Be Marie
Posted: Saturday, May 16, 2015 6:17 PM
Joined: 10/6/2014
Posts: 29


Hi Oncape -

I to like to have fun & laugh. I can remember being stunned & numb. Days. Don't judge yourself. I remember laughing at my neurologist about the side effects of Ariceft 10 mg. I asked him if he was trying to kill, me. He looked at me with startled eyes. I had diaarhea & my stomach ached so badly. I have been on rx stomach meds for years for a stomach trying to eat itself.

I cant imagine titrating off your dipolar meds, my doc who does my psychology meds suggested that to me when we were discussing changing my meds. I told her she might as well shoot me. I had done that before was not going there.

I am on disability for anxiety & depression. Have since found out these are precursers for EOAZ.

Breath & give your partner a chance to breath.

Marie

An DI
Posted: Sunday, May 17, 2015 5:50 PM
Joined: 5/10/2015
Posts: 29


Hi Oncape, welcome to the message boards.

I have had the bipolar for quite a few years, and got my diagnosis of early onset/younger onset Alzheimer's Disease (EO AD) two years ago.

So my family really rallied around me and we have now sort of gotten to a level playing field about six months ago.

In the very beginning, I had an awful time with muscle cramps when I started Aricept in addition to the lithium. In my own personal opinion, I think lithium seems to boost any other medication. My cramps were so bad, I was actually barking like I had Tourette's. My neurologist suggested I try drinking 4-6 ounces of tonic water, which really helped. She did caution me NEVER to drink more than 8 oz of tonic water because that can cause heart problems.

I think you will sort all this out, Oncape. I am so glad you have a partner who is able to be supportive. Remember that YOU have good points too. (My self-esteem did take a big hit with this diagnosis.)

You will find the perspective you need. The appointments with the doctors will level out. However, research ALL your medications to see what might be causing your problems. As I have been on lithium for 20 years and I have had urination problems, I am having my psychiatrist check my renal/kidney function. We did have to change from generic lithium carbonate to Eskalith. But DO WORK WITH DOCTORS and do not rely solely on the internet or these boards.

It's very unsettling to get this diagnosis. I like have a saying: I could get run over by a train before I ever get bad with the Alzheimer's!

Please let us know how you are progressing along! AnDI



Paul Hornback
Posted: Sunday, May 17, 2015 7:18 PM
Joined: 8/9/2013
Posts: 584


Oncape, welcome to the boards. I've been diagnosed for over 5 years now and am still kicking. I take the highest dose of Excelon and Namenda. I follow best practices and still enjoy life even with some of the restriction brought on by early onset alz.

I know you will find hope, encouragement, humor and great information here. Thanks for joining our group.

God bless, Paul


oncape
Posted: Tuesday, May 19, 2015 12:48 PM
Joined: 3/4/2015
Posts: 4


THANK YOU ALL for your posts of encouragement and info! My sister, who is almost 58, was diagnosed with EOAD 2 years ago, so I do know how it goes, but never thought my "cheer leading" would have to be turned on myself!!! The med flush I was talking about has landed me on Zyprexa for the main mood stabilizer, although I am on different meds for anxiety, panic, and another mood stabilizer. you might say I'm a basket case...LOL. I have been on the others (except the Zyprexa) which has many of the same side effects of Aricept, so I'm really hoping they ARE from the Zyprexa and will subside...am almost doing a mind-over-matter, reverse psychology thing on myself. Whatever works I suppose, right?
The Bipolar thing was diagnosed 35 years ago, and has been a problem ever since with many med changes, med additions, etc. and the med flush was my idea as the number of meds I was on was ridiculous! I had a NP who just added and added, so finally I told her she was a jerk and found someone else who thought the same thing and we are totally cutting back on everything as far as what I am going onto. I was on 1400mg (NOT a typo!!!) of Seroquel and am now totally off of it. I would love to take Lithium but took it a long time ago and had TERRIBLE side effects...shakes was the worse and am an artist so that was unacceptable. Hopefully the Zyprexa will level off and work. It sucks having to go through all of these trial and error games and on and off this and that...haven't done this in years and now remember why.
My partner is reading "The 36 Hour Day" which is a great resource book for caregivers. Also talking a lot with friends. She has a bigger support system than I do. Unfortunately I am feeling abandoned by my previously wonderful family. I think they are overwhelmed with my sister having the disease, and now me. I have three brothers who ALL had the same response when I told them...Sheri, we're ALL going to get Alzheimer's!!!
(My dad, and his mother had EOAD) I thought, WOW! How sensitive!!!
Anyway, I have left leg paralysis so exercise has been an issue, but got back on my bike last year (used to be an avid bike rider) so am taking my bike up to the local shop to get the front brake fixed (my huge dog somehow broke it????) and then I plan on taking that up again as my exercise of choice. There is a fantastic Bike Trail here that runs the entire length of the Cape. I have to start eating a bit better. Usually I only eat dinner. Coffee has been my other two meals. Friends are scarce so I've been calling some old friends to reconnect which has been fun.
Anyway, thank you all so much for your support!
For all of you Bipolars...I would suggest getting on something for that. There ARE some mild medications and there's really no reason to suffer from BOTH Bipolar and EOAD. I know I told a horror story here, but remember, I've been on meds for 35 years so have worked up a really big resistance to the meds.
Godspeed.
All in due time I guess.

Mimi S.
Posted: Tuesday, May 19, 2015 3:31 PM
Joined: 11/29/2011
Posts: 7029


Hi Oncape.

There are several of you also with Bi-polar, so do stay connected.

A lactose free diet has helped with my GI symptoms.

Young Your Partner might want to get: Lisa Snyder's: Living Your Best with Early Stage Alzheimer's

Unfortunately, it is not uncommon to lose friends when we disclose our diagnosis. i feel we find out who real friends are.

Have you and others in your family been tested for the familial AD gene? It might be a good idea so your brothers could be alert for symptoms. I think there is some clinical trials going on with those with that gene. If you call our help line: 1-800-272-3900 they may be able to get you information on the study.

I'm glad you have the support of your partner.

When you call the help line ask about support groups for yourself in your area. Also ask if your state has a telephone support group. Some do.

Mimi S.
Posted: Tuesday, May 19, 2015 3:35 PM
Joined: 11/29/2011
Posts: 7029


PS. Just checked your profile to see which cape you are talking about.

Oh, I am so jealous. Not of traffic getting off and on the cape, but jut living there. Are you a swimmer? And all that seafood is great for you! And cranberry juice, good daily.

llee08032
Posted: Thursday, May 21, 2015 6:22 AM
Joined: 5/20/2014
Posts: 4405


Oncape,

Welcome to the board. Look for healthy ways to channel your anger. Biking sounds like a great idea! What kind of "huge dog" do you have? I have a 107 pound Bull Mastiff/Boxer mix, Diesel, who is adorable!