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New guy going thru a bad patch.
Mikee
Posted: Sunday, January 22, 2012 3:47 PM
Joined: 1/22/2012
Posts: 6


Hi everyone and I'm hoping this will be a place where I can talk with others about what's happening to me.

My name is Michael, or Mike, and I live in Iowa. I live alone, 70 years old, with a couple of furry critters for company.

My Dad and grandpa were both alz patients. My Mom and her parents were apparently not so afflicted but just suffered from the "normal" senile dementia after reaching their 80's and 90's..

I'm scheduling a Drs. appointment for next week for a normal annual plus renewal of meds and I plan to discuss my situation with the doc at that time. I have not been diagnosed at this point.

I can tell you, though, that the last couple of years has seen a persistent decline in current memory capabilities and if "it ain't wrote down, it don't get done", so to speak. I have to rely heavily on notes, reminders. calendars and the like. This last year or so has seen more decline than the former.

This last couple of weeks has seen anxiety, panic attacks, nightmares, general feelings of unwellness and just plain feeling like crap. I worry more for my pets than I do for myself but I have neighbors that keep an eye out for me and if they don't see me for a couple of days running, will generally check on me to be sure everything's okay. One neighbor eyes my window blinds when she goes to work in the mornings and if they're still down when she comes home suspects I need attention. I'm really glad to have that kind of help. I'm looking into a senior care call service to get a daily telephone check; I don't trust the personal alert bracelet or pendant thing as my aunt had one and then lay on the bathroom floor for 24 hours before help finally came. At times I'm almost convinced I'm going batty!

Anyway, thanks for letting me get this off my chest and I'd love to hear from someone else about like problems.

Cheers, Mike

 


Ttom
Posted: Sunday, January 22, 2012 4:25 PM
Joined: 11/29/2011
Posts: 182


Hello Mike, Tom here. Glad that you were able to find us and post. Congratulations dude! Post again anythime!
Mikee
Posted: Sunday, January 22, 2012 5:04 PM
Joined: 1/22/2012
Posts: 6


Thanks Ttom. I've read your posts.

Can someone tell me what this being "connected" thing is all about? I'm not sure I understand it.

Mike


Mimi S.
Posted: Sunday, January 22, 2012 6:24 PM
Joined: 11/29/2011
Posts: 7027


Hi Mikee, 

Welcome to our Boards.We are so glad you found us.

 

I'm so glad you are ready to discuss your situation with your Primary.

Please also, ask at your local library for Doraiswamy and Gwyther (Duke University), The Alzheimer's Action Plan. If they don't have it, please ask them to get you a copy. 

The book explains the diagnostic process you should be undergoing. And if your doctor doesn't send you for further testing, do it yourself. Look for a Memory Clinic. Where is your closest big research Hospital or University? Find out if they have a dementia clinic. Good testing will take time.

 

The book will also discuss other things that can also cause the symptoms you are experiencing. Some of the tests you should be taking are more elimination than tests for Dementia.

 

And if you do have dementia, what kind is it? It is important to know this before you begin taking meds.

 

So, if your doctor gives you a five-minute mini-mental test; declares you have Alzheimer's and orders Aricept GET ANOTHER OPINION.

Glad to have you on Board. Hang around.

 

And if you want to know why I, an AD patient always wear a wrist band: A REASON FOR HOPE, do google me, Mimi Steffen.  I was diagnosed over five years ago, am older than you, and still going strong. 


Mimi S.
Posted: Sunday, January 22, 2012 6:30 PM
Joined: 11/29/2011
Posts: 7027


Oops, forgot your final question.


The connections, as I understand it,  allow a group of people with similar interest to form a group within our forum. Their posts, I believe, are only readable by those in the group.


For example: Lewy Body is a sub-type of dementia. People with or caring for those with that disease can  get lost in our group of thousands. The hope is that these people, although some of their concerns are similar to the rest of the group, will form their own little group. That way, it's easier for them to have a group that understands their particular concerns. 


Possibly those of us with the disease and still living by ourselves might want to form a group.


Any more insight from anyone?


Ttom
Posted: Sunday, January 22, 2012 7:37 PM
Joined: 11/29/2011
Posts: 182


Mimi S. wrote

The connections, as I understand it,  allow a group of people with similar interest to form a group within our forum. Their posts, I believe, are only readable by those in the group. 


Possibly those of us with the disease and still living by ourselves might want to form a group. 


 Any more insight from anyone? 

Another option gained from being "Connected" is the ability to private message those that ar connected.

 

I can see the advantage for a group of you people that are your own caretakers formulating a private group! Good luck with that!


Iris L.
Posted: Sunday, January 22, 2012 9:58 PM
Joined: 12/15/2011
Posts: 18061


Welcome to our online support group, Mike.  Mimi gave you good advice about the book, The Alzheimer's Action Plan.  The diagnostic process involves searching for diseases and conditions that imitate Alzheimer's but that may be treatable and reversible if caught in time.  Your primary doctor can begin the workup but it's best to consult with a neurologist who regularly diagnoses and treats dementia patients.  You want to be sure that you have a thorough evaluation.

 

Here is a link to the Alzheimer's Association's webpage on diagnosis.  It's brief but it has good advice:  http://alz.org/alzheimers_disease_diagnosis.asp 

Come back and post questions and concerns.  We'll do our best to answer.

Iris L.


Mikee
Posted: Tuesday, January 24, 2012 5:17 PM
Joined: 1/22/2012
Posts: 6


Hi folks:

Had my doctors appt. this morning and he's gonna set me up for a neuropsych evaluation at the University. Also will have an evaluation at the sleep center for the apnea. Had an ekg, blood work draw and discussion. I have a sort-term scrip for Zanax to be taken when needed.

The panic has gone away now and almost back to "normal" or whatever that is. A little hungover because of poor sleep but otherwise in good shape.

Thanks for being there. Mike


SteveSanJose
Posted: Tuesday, January 24, 2012 5:25 PM
Joined: 1/3/2012
Posts: 189


Connections, the tab above, seams to be are all the boards the ALZ ASSN has.. There ia only one so only one is listed. Thats how I see it. (-?
SteveSanJose
Posted: Tuesday, January 24, 2012 5:29 PM
Joined: 1/3/2012
Posts: 189


At 70, there is a fine line between what is a part of normal aging, and what is Alzheimer's. Your doctor will know for sure. If you haven't told him of the memory, and attacks you are getting, tell him. He can help.
Geegee
Posted: Thursday, January 26, 2012 12:13 PM
Joined: 11/29/2011
Posts: 514


Hi Mike.  Welcome to our online family.  Please know you are not alone.  Many of us on these boards have a diagnosis of some type of dementia or memory impairment.  I have Alzheimer's, early stage.


If you ever need someone to talk to or have a panic attack or question you can get help.  The Alzheimer's Assn. has a 24/7 Helpline available for you to call.


  Do not hesitate.  Ask for a Care Consultant  @  1.800.272.3900    They are there for support,  information and referrals.


You can also find this number at the top of the page under "Contact Us".


I'm glad you are going for further evaluation at the University.  A proper diagnosis takes time.  Let us know how things are going.


Mikee
Posted: Friday, January 27, 2012 8:33 AM
Joined: 1/22/2012
Posts: 6


Hi Geegee and all.

    
  As I wrote earlier, I'm waiting for the dr. to get me into the hospital clinic for a workup.

  I've had a totally wrecked sleeping pattern for decades, literally, and supposedly some of that was caused by an apnea, which I think was/is a misdiagnosis. But we'll have that checked out too just to keep the dr. happy. I went to a sleep clinic about 10 or so years ago, this was a 2-night affair, worked during the day and then sleep at the lab. The 2nd night they put on a cpap machine and I've never had a worse night than with that mask strapped on. I rented a machine for a month or two after that and, as I'm a bit on the claustrophobic side, kept rejecting the mask during the night.So, I finally just gave up on it. There have been many improvements in mask design since then I'm told.

   After my exam last week the dr. gave me some Zanax to take when needed and for the last 3 nights I've taken one pill at bedtime.

   The results have been totally unexpected and short of miraculous. Heretofore I'd been a toss-and-turn sleeper, awake many times during the night with the brain in overdrive; plus vivid dreams and the occasional nightmare. If I had a partner they would definitely have had to sleep in a separate bed. As it is my cat sleeps on the far corner away from me because of the constant agitation.

  The amazing thing is that the last 3 nights I have awoken in the same position I went to sleep in (as far as I can tell), and I have slept straight through, not even getting up for the bathroom.

   I'm a bit fuzzy when I first get up in the morning but after mobilating a bit and having a cup of coffee, etc. I feel just fine. The fuzziness may also be due to the extended and uninterrupted sleep which I haven't had for more than 10 years.

   Anyway dear folks that's the situation a week later. Will keep posting as things progress.

   Cheers, Michael

 

   


Mimi S.
Posted: Friday, January 27, 2012 9:21 AM
Joined: 11/29/2011
Posts: 7027


Michael,

Sleep, ah blessed sleep. When we're younger we take it so for granted.

And how have your days been these past few days after a good sleep. Any improvement in your cognition?


Mikee
Posted: Sunday, January 29, 2012 6:53 AM
Joined: 1/22/2012
Posts: 6


Hi Mimi:

 Well, I awakened this morning after yet another "still" night. No tossing and turning, fell asleep, I think, within 5 minutes of hitting the pillow. No nightmares or bad dreams. I felt another anxiety attack coming on yesterday right after lunch so took a Xanax, had a one-hour nap and woke up feeling just fine. Repeated the med at bedtime, 10.p.m..

   I awaken feeling just a bit on the "fuzzy" side in that I feel not quite wide awake which is, for me, kinda normal when I've had a solid night's sleep; it's almost like I've had TOO much sleep. It's been so long since I've had good sleep; maybe once a year I would sleep the whole night thru and not awaken anywhere from four to six times during the night. As mentioned, if I watch my water intake in the evenings, I'm not even getting up for the bathroom. Totally amazing to me.

  My activity level remains high. I'm a voluminous reader of trash fiction, go thru two to three books a week. I'm also active in website programming and maintenance and do that for three "clients." I'm an amateur machinist and am developing a project to make replacement parts for an old piece of printing equipment that has been out of production since the 1950s. I do hobby letterpress printing when the weather is warm enough for me to get out into the print shop. I mention these things to let you know I'm anything but inactive.

   So, I'd say my cognitive functions are  good. I've seen nothing but improvement and/or status quo there. I DO tend to procrastinate, especially in my house cleaning, which I detest greatly. I feel calmer, more focused and hoping the "good times" continue. I do have to stop and think about what day it is and check the calendar to see if there's anything that needs tending to. So far as I know, I'm not repeating questions in a conversation but often, in a day or two, will have forgotten details about what was discussed and have to be reminded again.

   Sorry for the verbosity, and the long answer to a short question.

Cheers, Mike

   


Mimi S.
Posted: Sunday, January 29, 2012 9:53 AM
Joined: 11/29/2011
Posts: 7027


Fantastic news!

Any possibility of having someone come in to clean, even once a month? Just picking up after yourself will keep you busy enough.

 

And, please, do contact your local Alz. Assoc. chapter. They need good people to advocate.


Iris L.
Posted: Sunday, January 29, 2012 11:19 AM
Joined: 12/15/2011
Posts: 18061


Mikee are you getting any psychotherapy for anxiety disorder?  Xanax alone is not enough.

Iris L.


hpuckett
Posted: Monday, January 30, 2012 6:06 AM
Joined: 1/17/2012
Posts: 5


Good thoughts, one and all.

 

From my own experience I can assure you that "sleep deprivation" sounds like the source for most of these problems Mike, including the memory issues, and particularly the anxiety. It is a known weakness in the human design, built perfectly to require adequate sleep. And while this need may vary by individual (and even within the individual), it is non-negotiable! One of the reasons it is used to breakdown POWs. Yeap.

 

The Xanax may not be where you want to remain, and once you are well-rested and ready, I agree with Iris that a good workup is needed to see if something less weighty might not do the trick for you. Xanax has many risk factors and will require increased dosage over time.

 

At your age and mine, we must get plenty of good exercise daily (light resistance work with weights, stretching & flexibility, and cardio are the key ingredients.  These will also insure better, deeper sleep.

 

Oh, and try awfully hard to avoid naps during the day, they are counter-productive to a good night's sleep.

 

Peace be with you.


Iris L.
Posted: Monday, January 30, 2012 11:13 AM
Joined: 12/15/2011
Posts: 18061


Mikee, if you feel drowsy and fatigued in the daytime, consider getting an overnight sleep study at a sleep laboratory to search for sleep apnea.  It is a cause of memory loss.

Iris L.


SteveSanJose
Posted: Monday, January 30, 2012 9:20 PM
Joined: 1/3/2012
Posts: 189


It all seems to be a big circle. One of the problems I had with my dementia, was that it was depriving my sleep. I was up all night. Tired but not able to sleep, or sleep then wake all night.  I have depression also. I take, Citalopram and Seroquel daily for depression douring the day along with Temazepam at bedtime to help me sleep. I add some Alprazolam on my bad days. Also on 2 AD drugs.

Doctor


Mikee
Posted: Sunday, March 4, 2012 8:15 AM
Joined: 1/22/2012
Posts: 6


I'm beginning to think I should place more credence on the sleep thing that I have in the past. I had a sleep study more than 10 years ago and was diagnosed with a mild apnea at that time. I was never able to adapt to wearing a mask at night though and so wasn't able to use a CPAP. My Mom once told me my Dad had periods during his sleep where he wouldn't breathe for a length of time and then suddenly take great gasps and resume respiration--sounds like it's hereditary.

Something has changed in the last week or two and that is that I usually fall asleep within 10-15 minutes of hitting the pillow, often less. Now, even though I'm dead tired and ready to sleep, it's taking much longer. The strange thing is though I toss and turn for what seems like an hour or so and then look at the clock and it's been two-three hours since I retired. It's almost like part of my brain is asleep and part isn't. Weird? There's no way I could have been tossing and turning for two to three hours yet when I look at the clock I'm fully awake and my thoughts are churning like a mixmaster; hope this makes sense.

Part of the problem may be that I'm on a smoking cessation program with Chantix (for the second time as the first was only 50% effective). Chantix is known to cause wild dreams and interrupt normal sleep patterns. The first time I had the dreams but still fell asleep in a short time.

My neuro-psych workup has been moved up to April but I'm thinking I'll ask my medico to get me into a sleep clinic before that happens.

My best to all. Cheers, Mikee


Lisa428
Posted: Sunday, March 4, 2012 4:35 PM
Joined: 12/5/2011
Posts: 795


Hi Mikee and Welcome,

 

Sounds like you have a lot going on.  I agree that you need another sleep study done asap.  You, also, need to check with your doctor about the Chantix.  It can have some serious side effects.

 

I was diagnosed with EOAD 4 1/2 years ago at age 53.  I take Namenda, use an Exelon patch and take Cerefolin.  I am also on an antidepressant.  I do take some supplements as well.

 

Good Luck with you tests.

 

Please, let us know how you are doing.

 

Peace and Hope,

Lisa

 


Iris L.
Posted: Sunday, March 4, 2012 6:39 PM
Joined: 12/15/2011
Posts: 18061


Best wishes with stopping smoking, Mike. It will only do you well. 

 

Ask the neuropsychologist who interviews you about doing the testing while you are subject to the effects of Chantix.  It might interfere with the results. 

 

Iris L. 


Geegee
Posted: Monday, March 5, 2012 11:13 AM
Joined: 11/29/2011
Posts: 514


Hi Mike, good to hear from you again.  Glad you're goal is to STOP smoking.  It will help you so much.

 

Hang in there.  Remember that if you need help, you can call our Help line 24/7 for assistance.   Ask for a Care Consultant.  They are trained to address your problems and direct you to services you may need. 

 

Helpline: 1.800.272.3900   You can always find this number at the top of each alzconnected page under "contact us".


 


 
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