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Mimi S.
Posted: Saturday, November 21, 2015 6:31 PM
Joined: 11/29/2011
Posts: 6561


Hi fellow PWDers. We need to reactivate this Board. It is designed for folks of about 60 and older who have been diagnosed with some form of dementia.  Do check in.
Iris L.
Posted: Saturday, November 21, 2015 9:12 PM
Joined: 12/15/2011
Posts: 15449


I am here, Mimi!  I have been feeling somewhat sluggish after returning from my overseas trip, so I have not been posting much.  

I am over 60, but I continue to post on the YOAD board, because that is where I started.  Should I move over to this board more consistently?  

Do we still need to divide the patient boards based on age?

Iris L.


Mimi S.
Posted: Sunday, November 22, 2015 8:03 AM
Joined: 11/29/2011
Posts: 6561


Iris, I think at first, before my time, there was just one board. Those who are diagnosed early, do have a unique set of problems. They are often still working or recently dismissed, when diagnosed. They are still apt to have children at home. So, I imagine that those folks felt they had nothing in common with the majority of folks like myself who are diagnosed at retirement age or later.

However, when you examine the content of both boards, the content is mostly about the person with dementia and not age.

And  you are free to post wherever you are most comfortable.

I would just like to see some Newbies who are browsing, join us.  


Radar007
Posted: Tuesday, November 24, 2015 7:52 AM
Joined: 11/20/2015
Posts: 348


Mimi S. wrote:

Iris, I think at first, before my time, there was just one board. Those who are diagnosed early, do have a unique set of problems. They are often still working or recently dismissed, when diagnosed. They are still apt to have children at home. So, I imagine that those folks felt they had nothing in common with the majority of folks like myself who are diagnosed at retirement age or later.

However, when you examine the content of both boards, the content is mostly about the person with dementia and not age.

And  you are free to post wherever you are most comfortable.

I would just like to see some Newbies who are browsing, join us.  

Mimi S!!!! You are incredible. You were diagnosed about the age my mom is now. I'm so thrilled to find your post because I recently (essentially) forced my mom to get cognitive testing. She's 76 and has been showing symptoms for about a year. She hasn't done her testing yet (and I hope it's not Alz, but it could be as we have VERY strong family history) but her argument for not being tested was "there's nothing that can be done so why bother!" I do hope that if she is diagnosed, that she will be able to stabilize her mental state and retain it for as many years as possible. I do hope she thanks me for making her get testing as I think there is hope at least for some relief.

My entire family was totally traumatized by my grandmother's (my mom's mom) experience- she began showing symptoms Alz in the late 1970s and her symptoms were not recognized until she was evicted from her apartment after letting water run out of her bathtubs and into the apt the below.

You're an inspiration and I will share your story with others! I hope you're still doing well.


Mimi S.
Posted: Tuesday, November 24, 2015 9:36 AM
Joined: 11/29/2011
Posts: 6561


Radar, I am still doing incredibly well. This time twelve years ago, I was in the middle of my diagnosis. I knew that I had not done well. I knew I had memory problems, but the inability to turn a cube to follow a pattern? That had nothing to do with memory!

I went to the final meeting fully prepared to hear a diagnosis of dementia. In my then knowledge, that was a minor state compared to the dreaded A word.

I do remember the trip home from the clinic that day. I was in shock, but made decisions contrary to most. I vowed that my diagnosis would not remain a secret. I had no thought of changing the world's opinion about what AD was.

Early Stage AD looked like.  I was just so d... tired of family secrets.

It's now twelve years later and I'm still around.

I attribute a lot of my success to two things, my very early diagnosis and Best Practices.

Also in the picture and I would love some study as to what extent a drug I take in massive doses for another neurological disease has caused the progression of the AD  to slow to a crawl.

Robin, I hit disregard on your Connection invitation. I have a policy of only accepting invitations from those who have the disease. I feel what I have to say should be said for all to read.

Do get your mom to the best diagnostic clinic; this is usually a medical center or University. Even if an overnight stay is required, the best diagnosis is worth it. Too many local doctors make a diagnosis on the basis of a short quiz. And even if a diagnosis of dementia is correct, it is essential that the type of dementia be discovered.
Best Practices:

 

1. Take meds when and if so directed.

 

2. Vigorous physical exercise. If your mom has been inactive, build up slowly. If you are in a cold weather state, join a gym, Y, etc. I have a Maintenance Plan where I received my PT. I'm there 3 times a week. This 87 year old lady can walk a treadmill for an hour at 2.8 and + MPH.  Of course, there have been times when I can't do that and have had to settle for a half mile at a much slower speed. But, I'm stubborn and I keep at it.
3. Varied mental exercises. It has to be something that stretches her mind. Ex. If she does the NY times Crossword puzzle in ink, do something else. Learn a new language; pick up a long forgotten hobby, take up that violin again. Try writing one's life story. Gather those old photos, label and include in story.
4. Mediterranean Diet. Search on internet. If this is a dramatic change, do it slowly. I also take antioxidants and Omega 3.
5. Maintain or increase socialization. Most of us diagnosed do not do well in large and or noisy crowds.

 


BillBRNC
Posted: Wednesday, December 2, 2015 2:14 PM
Joined: 12/2/2015
Posts: 1015


I'm a new poster, as of today. I've had cognitive issues for the past 5 years, but I thought it was due to severe heart failure. The HF improved enough for me to be removed from the transplant list, then stabilized, but the cognitive issues continued to slowly progress, then my cardio expert told me that my HF had nothing to do with my slowly progressive symptoms, and he told me to see a doc in my hometown immediately. CT Scan normal, blood tests normal, not vascular, but my mother had Alzheimer's. I spent a several hours with my family doc on his day off (he's a friend), and he told me that I certainly had some form of early progressive dementia, probably Alzheimer's. He wanted to do a PET Scan, but he couldn't get one for me without me being referred to a major center. I'm now set to go to a major medical center about an hour away, but not until March. I stopped working 5 years ago due to heart failure, but I was close to stopping due to my memory issues and speech issues. I'm 65 now. This totally blows. My wife and I were primary care givers for my mother when she had Alzheimer's, but she died about 20 years ago, so we know exactly what is in  store if this is confirmed to Alzheimer's. We also know what is in store if it is "just" dementia. Of course, Alzheimer's is dementia, so I really don't know what difference it makes, since all the treatable versions have already been ruled out. Heck, I don't know why I'm going to the medical center, other than to see if I can get a PET Scan. I just need to know for absolutely certain. Don't know why, I just want to know for certain. Anyway, I've signed up here, because I had a good experience with a heart failure board over in the UK, even though I live in NC here in the USA. The UK just happened to have a good one, so that is where I went for information. I hope this board works out as well. I can type fine, but my speaking isn't too hot. My memory stinks, I can't handle having chaos or confusion in the house or anywhere else. I drive somewhere and I don't know why I drove there, and I don't remember driving there. I'm not lost, because I know where I am and how to get home, so that's good. There are issues arising at home, because I'm not great to be around sometimes, don't know why, just sometimes lose it when I'm pressed too hard on almost anything. I tried yellow post-its, but there were so many papering my desk area and the kitchen, I stopped most of them. I can have a reminder note on my computer screen, and I don't even know to read it, so they aren't any good anymore. Well, I know those of you who read this probably know exactly what I'm talking about, so I will stop now. Glad to be here, and I'll try to keep things positive from now on.
BillBRNC
Posted: Wednesday, December 2, 2015 2:20 PM
Joined: 12/2/2015
Posts: 1015


Oh, and the meds I take aren't the issue, even though I take a lot for my heart failure. I also have a pacemaker and an ICD. All the meds I'm on now started at least a year after I started having cognitive problems, and my doc thinks the meds have nothing to do with my problems, and he didn't prescribe any of them so he had no reason to lie about it. Just wanted to add this. I'm gone now.
Mimi S.
Posted: Wednesday, December 2, 2015 3:01 PM
Joined: 11/29/2011
Posts: 6561


Bill,

From your local library ask for a copy of The Alzheimer's Action Plan by Doraiswamy and Gwyther. it explains the seesentials of a good diagnosis. You need all parts done.

There're some things that cause dementia-like symptoms that need to be excluded. If dementia, what type. This needs to be determined before any meds should be ordered.

Dusty with us.

The PET scan with the Pittsburg compound is great. One usually needs to be in a clinical trial to get one


BillBRNC
Posted: Wednesday, December 2, 2015 3:46 PM
Joined: 12/2/2015
Posts: 1015


Thank you.
Iris L.
Posted: Wednesday, December 2, 2015 7:39 PM
Joined: 12/15/2011
Posts: 15449


Welcome to our online support group, Bill.  I was just diagnosed with heart disease a few months ago.  I had been visiting the cardiologist for a few years, but I had been asymptomatic.  Now, I have begun to have chest pain.  The cardiologist says it is due to elevated blood pressure.  The neurologist says he cannot rule out elevated blood pressure as an etiology in my cognitive impairment not otherwise specified.

As Mimi says, the best hope we have is Best Practices.  I can attest that Best Practices has helped me over the past six and a half years that I have been following them.  I am stabilized, and even better, except for the chest pain.

It's great that you do not need a heart transplant.  What a load off your shoulders!  Your life is not over yet.  Get your legal and financial affairs in order, and then do your bucket list..  Do all the things you have put off while being on the heart transplant list.  Do as much as you can.  

We make use of all accommodations and adaptations to help us with memory loss and other impairments.  There are many that can help.

I call us Dementia Pioneers.  I believe dementia is different from when your Mom had it twenty years ago.  We are the first generation to be pro-active in our fight against dementia and who are diagnosed early.  Just about every treatment and tip I know I have learned on the pages of these message boards.  

Please keep reading, Bill, and keep coming back.  Write down your user name and password and keep it close by so you cannot be blocked out.  Keep posting.

Iris L.


BillBRNC
Posted: Wednesday, December 2, 2015 8:48 PM
Joined: 12/2/2015
Posts: 1015


Iris L, thanks for the message. I hope your heart issues get under good control. Hypertension can be very dangerous if not treated appropriately, but sounds like you are in good hands. As I'm sure you already know, it can cause vascular dementia. For the past 5 years, I just assumed that my cognitive issues were due to my heart failure, and that I would die from heart failure before the cognitive problems got really bad. I guess I just jumped from one frying pan into another one. I'm a little tired of the medical system, but I'll survive. I just don't want to destroy my wife's life with all of this junk. Well, it is what it is, so we all need to make the best of it. I just got back from jamming with some buddies at a local bar. I'm one of the older players, but I can still hold my own on the banjo and my tenor guitar. It will be a bummer whenever the time comes that I can't play anymore. I took it up because it was one of the few things I could do with my heart failure, then I really took to it. Now, I usually can't remember the names of the songs I play, I forgot the words to two songs tonight in mid-play, and I tell my buddies I'll be playing in one key and then play in another. They don't know about my health issues, but they wouldn't care, as most of them probably have some of their own. Good luck. Bill.
Iris L.
Posted: Thursday, December 3, 2015 2:53 AM
Joined: 12/15/2011
Posts: 15449


Bill, learning to play the piano is on my bucket list.  Appreciation for music is one of the aspects that lasts a long time with us.  Play and sing as much as you can!  We used to have a great music thread on the old board.  Have you seen this video, "Revived by Music"?

http://newoldage.blogs.nytimes.com/2012/05/17/revived-by-music/


Iris L.


BillBRNC
Posted: Thursday, December 3, 2015 5:46 AM
Joined: 12/2/2015
Posts: 1015


Well, I ordered the book mentioned...the Action Plan thing. I wanted to talk to my wife first, since she will be the one to read it, then show me just the short parts that I should read. I have trouble reading more than a few lines or a paragraph without forgetting what I've read or just plain zoning out. Seems silly, but I used to read at least a hundred books a year while on planes for business trips until I found that I couldn't remember the first page when I turned to the second page. At the time, I thought I was just bored with the type of books I was reading, but after it happened with about 10 different book, I realized that I just hated reading. I guess I was wrong about the reason, but I still have the problem 5 years later, only a little worse now. Anyway, my wife is willing to read then tell me about it, or show me short clip to read. Thanks for the reference.
Alieje
Posted: Sunday, December 6, 2015 7:01 PM
Joined: 11/21/2015
Posts: 1


I'm hoping to find a place where I'm understood and don't feel guilty discussing this horrible disease by whatever name people choose to call it; dementia, alzheimer's, forgetfulness, hardening of the Arter's, plain ole getting old. I'm 65 yrs old, was officially diagnosed with alz/dementia last year but I noticed the symptoms 15 yrs ago. I worked for the DOD so I had to learn ways to cover up the things I forgot or for the crazy, out of character things I would do that my family and friends would get irritated with. After 12 yrs with DoD I was laid off, it took me a year to find a new job but i had to move that made the alz symptoms even worse.  After a few months at my new job they picked up that there was something going on with me and forced me to take medical leave.  It was really the best thing that could have happened.  More than the forgetfulness, I find the mass confusion to be almost intolerable; that and how alone I feel. I've been divorced for 26 yrs, live alone except for my dog and thank goodness he doesn't care how much I forget as long as I don't forget to feed him, but he wouldn't let that happen.  There is so much I would like to write but this is my first on the message boards and I don't want to sound like a lunatic, that will come later.  I'm hoping to find a friend(s)  through this board where we can talk, cry, laugh, whatever feelings the day may bring. I live in a very small mountain town, my choice, I moved from Denver because the chaos made everything I was feeling, especially the confusion, a million times worse, but there is really no one in this small town to talk with or who understands. I'll apologize for my rambling or sentences that don't make sense but that's where my brain is going and it gets worse everyday.  Hope to hear from all of you.  Alie
Mimi S.
Posted: Sunday, December 6, 2015 7:50 PM
Joined: 11/29/2011
Posts: 6561


Hi Alieje,

A most hearty welcome to you. We are so glad you found us. 

yes you’re understand here and you can say whatever you feel like saying.

You really did a fantastic job fighting this while you still had a job.

I love Colorado. I’ve kids, grand and great grand in the Denver area. I’ll be out visiting there in a few months.

How are you doing living by yourself? is there anyone close that can check on you?

I still live by myself but live in a town where the neighbors are close and do check on me.

I’m glad you have your dog. If I forgot, my dog would pick up the empty dish and drop it once or twice. Then he’d check out the couch to see if I heard. Oh yes, he let me know.

Do you know about the Best Practices. Do make them your motto:

1. Take meds as prescribed.

2. Strenuous physical exercise. If you’ve been a couch potato, start slowly. And yes, you’ve had a lot of snow there so you may have to do jumping jacks or something in the house.  Strenous physical exercise build new brain cells.

3. Varied mental exercises. Did you used to play an istrument? Write you biography. Do puzzles. Just do lot of different things.

4. Mediterranean Diet. Google it. I also take Omega 3 and antioxidants.

5. Living in a small tow, you may to work on getting social.  It doesn’t have to be with a large crowd. Do you have a fried or two in town?

Do stay in touch.  So glad you found us.


Iris L.
Posted: Sunday, December 6, 2015 9:03 PM
Joined: 12/15/2011
Posts: 15449


Welcome to our online support group, Alie.  Here is where you can write whatever is on your mind and heart.  Someone here probably has the same thoughts.  We share with each other how to live with dementia.  I call us Dementia Pioneers, because we are the first generation pro-actively living with and treating dementia in the early stages.

My own diagnosis is cognitive impairment not otherwise specified.  I have been on Exelon patch and Namenda for over six and a half years, and they are helping me.  I also follow the Best Practices that Mimi introduced us to.  

My memory symptoms actually began in 1987, when I was 37 years of age.  I am now 65 years. I too, live alone, with my four cats.  I try to keep a month's supply of cat food and litter in the house, in case I cannot get out to the stores.  I also have lupus and other diseases, which limit my mobility.

I have found wonderful support among my fellow patients.   I hope you will too.  Please keep reading the boards, and keep posting.  We are all here to help each other, Alie.


Iris L.


BillBRNC
Posted: Monday, December 7, 2015 8:16 AM
Joined: 12/2/2015
Posts: 1015


Alieje, I really don't see how you were able to do it, stay working for so long, but good for you. I also live in a small mountain village. The perm population is here around 1300. Very little traffic. Everyone knows everyone type place. A few months ago I had to go to the big city to see my heart doctor, and I got lost coming home. The traffic drove me crazy and I got lost. Took almost 2 hours longer for me to get home. I refused to stop for help, because I wasn't sure they would understand me or that I would understand them. I got home ok, just took a long time. I absolutely hate confusion and chaos, so I know the feeling. Went to a Christmas party last night with my wife, large thing, and I ended up sitting at an empty table at the far end of the room. It was a community type party, so it was in the American Legion House, which just got newly rebuilt by the town as a community center. Nobody around here knows about me having trouble, other than with my heart, other than my wife that is. There are number who suspect, I guess.

What amazes me is how long so many people seem to be able to live independly with Alz. I started with minor symptoms about 5 to 6 years ago, and I still don't appear to most folks to have any problem. I wonder how long I can expect to at home without ruining my wife's life. Just wondering.

Happy new week to everyone.

 

 


ffwife54
Posted: Monday, December 7, 2015 4:41 PM
Joined: 4/15/2012
Posts: 246


I'm here as well, been busy caring for my dad and keeping my head who've water. My memory is effecting everything I do. I miss out on things because I don't remember them. I make e tea trips to the store because I forget things. My anxiety is high because of my memory and my memory is suffering from my anxiety
Iris L.
Posted: Monday, December 7, 2015 5:42 PM
Joined: 12/15/2011
Posts: 15449


BillBRNC wrote:

What amazes me is how long so many people seem to be able to live independly with Alz. 

I wonder how long I can expect to at home without ruining my wife's life. Just wondering.

One of the benefits of following Best Practices is the ability to live independently for a long time.

I believe it is not a given that patient with dementia or cognitive impairment ruin someone else's life.  It will be necessary for ALL involved to ACCEPT that there will be CHANGES.  But if someone is selfish and reacts to changes negatively, then lives will be ruined.  

My biggest fear is being under the control of someone who is negative and bitter and not willing to provide for my changing needs if I cannot speak and do for myself.  Mimi and others are always promoting Naomi Feil and Teepa Snow, who have videos and other information about enhancing communication between the patient and the care partner.  

From reading the boards, it appears to me that many patients are miserable, living with their caregivers, whom in some cases, appear to be their wardens.  

I would rather live in a one-room studio apartment on my own, than live in a fancy house with someone who is hostile to me.

The good thing about this board that I have always loved, is that we work together to discover what works for us, to enable us to have better lives with dementia or cognitive impairment.

Iris L.

 

 



Mimi S.
Posted: Monday, December 7, 2015 7:00 PM
Joined: 11/29/2011
Posts: 6561


Welcome back FF Wife.

Sounds like you need to figure out a better system for remembering. Even with the best of symptoms, we still goof. 

What exercise are you getting these days? Lots of it will sometimes help the worries.

Does your sate have any local support groups for you or even a state wide call support group?


 
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