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Five years today
Iris L.
Posted: Sunday, February 23, 2014 6:24 PM
Joined: 12/15/2011
Posts: 18509


I joined these boards five years ago today.  I was 59 years of age.  The word “Alzheimer’s” frightened me.  I lurked for three months.  From late December 2008 until February 23, 2009, I read every thread on the “I Have Alzheimer’s” “Younger Onset Alzheimer’s” and the “Caregivers” boards.  I was surprised and happy to see that the patients were able to communicate so well and were so encouraging. 


At that time I had not begun any meds.  A few of the caregivers warned me about using the stove, because I had posted something about walking away and burning food, and the smoke alarm going off a few times.  That was good advice for me. 
 

  

I have since come to these boards whenever I need advice relating to memory or being a cognitively impaired person.  I can’t trust the professionals because they have no concept of cognitive impairment, only advanced dementia.  The professionals continue to insist there’s nothing wrong with me.  I ignore them. 

  

Before I began the meds, I was functioning like a stage 4 Alzheimer’s patient.  I had a great deal of trouble handling my finances and day to day household care, I had trouble with word-finding, and I was slow in thinking.   

  

Since I began the medications,  I believe I am functioning at stage 2.  I can function much better, but I have trouble remembering.  I can perform easy tasks and activities, but I have to think about what I am doing and plan my steps consciously.  How much I don’t remember still scares me at times. 


I credit Exelon patch and Namenda, Best Practices, PositScience, and the encouragement and support from the members of these message boards.
 

 

My diagnosis is cognitive impairment not otherwise specified, thought to be related to systemic lupus and anti-phospholipid syndrome and possibly hypertension. 

  

I have come to a point of acceptance and trying not to be scared by compensating and anticipating.  My goal is to remain independent as long as I can in my own home. 

But I’m not against moving into a senior community.  I think it might be fun.  There certainly would be less work for me to deal with.  Unfortunately, most limit the number of pets, and I have several.
 

  

I’m so grateful these boards exist.  Without them, I would be nowhere.  I wouldn’t know anything about dementia or cognitive impairment.  I wouldn't have had the encouragement to begin the medications.  I wouldn't know how to care for myself.  I wouldn't know what plans to make.  I would be in a deep depression.  I would be up the creek without a paddle. 

Thank you, everyone who posts here!  Please keep coming back so we can support each other!  We can’t go through this alone!

Iris L.
 

  

 



 

 

 


alz+
Posted: Sunday, February 23, 2014 8:06 PM
Joined: 9/12/2013
Posts: 3608


Iris you are an inspiration and a help to so many people!

 Hope you never hear the word Alzheimer's but if you do I wish you a safe journey to a better place than we have ever known.

 

Hope you move to a place where you can make new friends and have all the pets you want. I used to imagine a 8 bedroom house - ASSISTED LIVING FOR THE ABLE BODIED and everyone had their own bedroom and bath, we all paid collectively for someone to cook a meal a day, our laundry was done or we could do it ourselves. our animals could play in fenced yard or taken to play day care, we had a library and we had conversations when we wanted and an on call massage therapist.

 

I imagined all the details and now see big mansions in old cities and still think about this. We also had a driver.

 

I am happy to be warm and dry and fed. I wish you love and happiness. Laughing has got to be good for us.

 

love to you and to everyone...


Vita99
Posted: Monday, February 24, 2014 5:51 AM
Joined: 9/4/2012
Posts: 469


Iris for those visiting this board, caregivers as well as those with cognitive issues, your contributions are excellent and manifold. You give as much as you receive imo.  I agree these boards are a great support and full of information we can use.
jfkoc
Posted: Monday, February 24, 2014 5:22 PM
Joined: 12/4/2011
Posts: 21244


alz+...please reserve a ground floor with twin beds for us ( I am soon to kick the cover hoarder out of the king)....anyone's dog can sleep with us!.

 

Iris...seems like only yesterday and now we have 5 years under our belts.


Mimi S.
Posted: Monday, February 24, 2014 7:14 PM
Joined: 11/29/2011
Posts: 7027


iris,
You have helped so many folks during your five years her. Thank you.
And I so admire your willingness to be open about commenting on things that bother you.

Iris L.
Posted: Tuesday, February 25, 2014 12:20 AM
Joined: 12/15/2011
Posts: 18509


Jfkoc, you're right, re joined at about the same time.  Time flies when you're dealing iwth dementia--NOT!  Mostly it drags. 

But we have to consciously make good use of our time.  It does help.

Thanks, alz+, vita, and mimi for responding. 

To imitate the Beatles, "I'll get by, with a little help from my friends!"

Iris L.


Paul Hornback
Posted: Tuesday, February 25, 2014 3:02 PM
Joined: 8/9/2013
Posts: 584


Iris, you are an inspiration to all of us. So glad you decided to post on the boards five years ago. Where would we be without your guidance, inspiration, and wonderful conversational posts???

Thanks again and God Bless, Paul


lovemysister
Posted: Friday, February 28, 2014 7:29 PM
Joined: 2/25/2013
Posts: 161


Iris,

 

 

You are a gem!!

 

I wish I knew then what I know now...I really believe I could have done better for my sister and I regret that every single day.

 

She is in her tenth year of the disease....her progression is not like anyone else I have seen or heard about. She is 62 years old.

 

I think every day that I failed her to not have pursued more to maintain her for longer in the first stages.

 

 

I cry as I write this. I just want you to know that you are an inspiration to everyone who is on this forum.

 

Please continue your words of support and your experiences. I believe it will help others to do whatever they can to keep the disease at bay.

 

LOVEMY SISTER 

 


Geegee
Posted: Tuesday, March 4, 2014 9:17 AM
Joined: 11/29/2011
Posts: 514


Iris, you have always been such an inspiration to me!  I joined in April of 2009 


after lurking when diagnosed in Feb.  You began immediately offering advice 


and you, Mimi, and Lisa are a big reason why I stayed.


       When you left for a long period of time, we were all so worried about you. 


Then, you came back and began to grow stronger with support you received 


here on the boards.  


       I'm so glad you did because now you are a constant help to so, so many.  


Thank you for your wealth of knowledge and support for 5 years  !!  



Geegee
Posted: Tuesday, March 4, 2014 9:19 AM
Joined: 11/29/2011
Posts: 514


Iris, P.S.


((((((( hugs ))))) and more (((( hugs! ))))


Iris L.
Posted: Tuesday, March 4, 2014 1:59 PM
Joined: 12/15/2011
Posts: 18509


{{{{{{{{hugs}}}}}}}} and more {{{{{{{{hugs}}}}}}}} back to you, Geegee!   

 

I'm so glad you're back.  I've been missing you since the update in November.  How are you doing?

Thank you for the kind words.  We are all inspirations to each other.  We have to be!

Ilovemysister, you are a great sister, and you are doing great.  I wish I knew then what I know now.  I wish my doctors and other professionals I come in contact with know what I know.  I learned 99% of what I know about dementia and cognitive impairment on these boards and alz.org and a few other websites and books. 

We can't do what we don't know.  We can only live for today and move forward.  We can anticipate the future and make plans, and help others who are coming along behind us, who are as lost as we were.

And you know that saying,, "When you've seen one Alzheimer's patient, you've seen one Alzheimer's patient."  It's true.  Everyone's course is individualized.  I believe the individualization allows for the range of treatments and therapies that can be beneficial, whether from medications or Best Practices or other modalities.  Spirituality and attitude go a long way in benefiting the patient, and they are often overlooked as to providing a higher quality of life.
 

 

That's what we all want, a higher quality of life.  None of us make it out of here alive, so we must make the most of our days.  This is what I think about all the time.

Many others have been members for a long time.  I think about those who were with us, but no longer are.  I pray for them and wish them well, whereever they are in their journey.

Iris L.



 

 


Geegee
Posted: Friday, March 7, 2014 7:24 AM
Joined: 11/29/2011
Posts: 514


Iris, I am trying to come back slowly day by day to the Boards.  I will explain more at another time.


I just wanted to respond to your mention of other old friends.  I had a couple other members that I really bonded with in past years.  They understood my sense of humor and my commitment to help others.  


I still think of them and miss and pray for them.  One was Hopeful (Lorene). Lorene was a joy to everyone, always striving to uplift others with her spirit and humor.  


She didnt have a computer and had to walk to the Library to communicate with us.  She came to the point that she lost so much function and couldnt stay in touch.


The other was named Tanya.   She had Lewy Bodies.  She gave us much of her hands on experience when she was looking for an alternative anesthesia.  She used spinal nerve block for an abdominal surgery.  I sent her a message and heard from her about a year ago. At that time, she still read the boards.

(Miss you Tanya).


Its wonderful to have so many new members now.  The problem I have is learning new information about each one and keeping their lives and experiences straight.


I will try to better.


Also, I just remembered that I can somehow follow the treads by being informed by email.  I will do that now...before I forget that I can!