RSS Feed Print
Chat with Rip about Living with Early AD
VC Cindy
Posted: Thursday, January 17, 2019 4:13 PM
Joined: 1/17/2019
Posts: 1


Hi All, I am starting this message on behalf of my friend Rip who has AD. He would like to talk to others who are in early stage. Let us know if there are any of you out there who would like to chat. VC Cindy
Mimi S.
Posted: Thursday, January 17, 2019 7:32 PM
Joined: 11/29/2011
Posts: 7036


Do encourage him to post here!!!!
Iris L.
Posted: Thursday, January 17, 2019 9:04 PM
Joined: 12/15/2011
Posts: 16102


Welcome to Rip.  Please tell us more about yourself, Rip.

Iris L.

 


Rip Van Winkle
Posted: Monday, January 21, 2019 2:26 AM
Joined: 8/15/2017
Posts: 1


I am 75 years old. Line in Arizona. Originally from Indiana. Went to Purdue University, then worked in the steel distribution industry for the next 30 years or so, before retiring and moving to Arizona. Could not stand retirement, so a friend and I from the industry, started a Business Development company that we ran for 8 years and then closed it down and retired for real.

Diagnosed about 3 years ago with ALZ, and have come to this point.

How about you? How has your journey been?

Terry


Mimi S.
Posted: Monday, January 21, 2019 11:52 AM
Joined: 11/29/2011
Posts: 7036


Hi Terry,

Welcome to our world. I'm so glad you came on.

We have Purdue in common. I taught there, but it must have been many years before your time. Loved West Lafayette.  Were you an engineer major?

What led to your diagnosis and what was the testing like? I had been diagnosed with Myasthenia Gravis and seeing a neurologist. I kept telling her I was concerned about my memory. She duly noted such in her notes but nothing further. It wasn't until she was retiring that something came up in conversation that demonstrated my problem. So, she finally woke up and ordered further testing.

This is so common. In Early Stage we act so normal that most docs don't see a problem. UGH!!

Are you familiar with what several of us PWD on these boards call Best Practices?  Adapting these as a Life Style has the possibility of slowing down the progression of the disease. Further research has shown that afdapting more than one has a multiplying effect.

1. Take meds as directed.

2. Physical exercise. The goal is to get the heart pumping, for a bit, at a faster thannormal rate. Research shows this build brain tissue.

3. Cognitive exercise. A variety is best. You want to stimulate but not frustrate.

4. Mediterranean Diet. (search on line), no smoking, limited alcohol.

5. Increase or maintain socialization level. we need face to face contact with others. Usually we do not like large and/or noisy groups.

Do contact your cal Alz office (1-800-272-3900 can give you the local #. Call during normal business hours. Doing so led to my involvement both locally and nationally.

Each spring in DC there is a forum, the main purpose of which is to meet with Congress people to tell your story. Those of us with the disease make a huge impact. I was able to attend several ears. To me, the best part was meeting others like myself who were inEarly Stage.

Being active on these boards is helpful to ourselves and others with the disease.


Iris L.
Posted: Monday, January 21, 2019 4:57 PM
Joined: 12/15/2011
Posts: 16102


I lived in Kokomo when I was stationed at Grissom AFB.  Indiana is a nice calm state.  Best Practices have certainly helped me.  Like Mimi, I am dealing with another illness, in my case, systemic lupus.  I have learned a lot from the members here.

Iris L.


Peggo737@gmail.com
Posted: Monday, January 21, 2019 7:25 PM
Joined: 1/21/2019
Posts: 1


 I’m 69 years old and 2 years into my Alz. diagnosis.  I am still functioning well on my own, driving, cooking, paying bills, seeing friends, etc. My questions all revolve around “what’s next?”

My wonderful doctors convince me that Alzheimers progression is different in each case.  I believe this, but it is not helpful.  I’d like to converse with or hear the stories of others in my situation - that is, going into the disease functioning quite normally and just now noticing memory and recall issues and problems with conversation and sometimes trouble expressing myself.

I feel like I am standing at the edge of an abyss and want to know more about the journey I am facing.  I completely accept my diagnosis and have come to peace about it.

Any comments or insight would be welcomed!

Peg

 


Iris L.
Posted: Tuesday, January 22, 2019 12:02 AM
Joined: 12/15/2011
Posts: 16102


Welcome, Peg. I don't have Alzheimer's Disease yet I struggle with my daily activities.  I struggle and carry on.  I do know that the medications for Alzheimer's Disease helped my language skills, both written and oral.  I have been out all day and I need to rest.  I'll write more tomorrow.

Iris L.

 


Michael Ellenbogen
Posted: Tuesday, January 22, 2019 7:26 AM
Joined: 11/30/2011
Posts: 2477


Hi Peg, I see you are using your email address as part of the profile. I would recommend changing that. 


Mimi S.
Posted: Tuesday, January 22, 2019 11:13 AM
Joined: 11/29/2011
Posts: 7036


Welcome to our world, Peggy. I'm so glad you found our site.

Do please, change you avatar. Privacy, especially for we with dementia is important. With your e-mail address too many folks can contact you.

What was your process of diagnosis? What type of dementia do you have? From your library ask for anything by Doraiswamy ad Gwyther. The first part f the book describes what any believable diagnosis must consist of.

I like you, lived by myself until my recent relocation to an ALF. (For reasons other than my dementia.)My executive function tested low. I interpreted that to mean ability to follow directions. For example, following directions for a recipe was too difficult.  What I realized also was my ability to come to correct conclusions was also compromised. I could acknowledge fact A, but wouldn't make the decision what to do about it.

Do contact your local Alz. Assoc and get involved. The help line can give you the local . Do call during normal business hours and make sure you are in touch with the local. national picks up after a certain # of rings.

There is a Forum in DC in the spring, the main purpose of which is to contact your local legislators. I attended for several years. My main benefit was getting to know others in Early Stage!!!!

Do adopt a Best Practices life style. Research has show that it may prolong your stay where you are.  Research has also shown that the more aspects you adapt, there is a multiplying effectiveness.

1. Take meds as directed.

2. Strenuous physical activity. Again, research has shown this build new brain tisse.

3. Varied cognitive activities. You want to stimulate but not frustrate.

4. Mediterranean diet (search on-line). No smoking and limited alcohol.

5. Maintain or increase socialization. We PWD usually do not tolerate crowds or noise but we need daily face to face interaction with others.

 


Iris L.
Posted: Tuesday, January 22, 2019 2:11 PM
Joined: 12/15/2011
Posts: 16102


YYes, I agree Peg, remove your email address.  

As far as executive functions go, I find that I can still perform the same tasks (mostly), but at a markedly slower rate.  I become very easily distractable and very much more subject to interruptions.  I need to be much more diligent about guarding myself from the interruptions and distractions which are all around me.  Since the new year, this is all I have been thinking about.  

Iris L.


RetiredGeek
Posted: Thursday, January 24, 2019 9:53 PM
Joined: 12/24/2018
Posts: 8


Hello Folks,

I received my Dementia (very likely Alzheimer's) diagnosis 4 days ago. So I'm still reeling a bit. I am concerned that my memory & cognitive symptoms have advanced dramatically in the past six months. I currently have 15 - 25 senior moment/memory lapses daily. It has become very frustrating. I do tasks around the house and don't recall having done so. When working at my PC I occasionally can't remember what month or season it is. I have also had occasions when driving that I suddenly don't know where I am. It is very brief but disconcerting. I no longer drive when it's raining and minimize night time driving. I realize that I will need to give up driving other than nearby. 

A few weeks ago I started having occasional anxiety attacks (not panic attacks) that last from 5 to 15 minutes. I have a Psychiatrist and Geriatric Therapist. I will be seeing a Neurologist at Duke Univ. for new MRI and CT scans. I'm curious about the efficacy of PET scans.

Oops, I forgot to introduce myself. LOL

Fair warning. I'm longwinded with ad nauseum descriptions.   Writers write, right!

I'm 67 and a retired geek turned writer (screenplays & novels). Most of my 30 year professional career was in systems engineering and IT technology management for real-time, mission-critical systems for NASA, NOAA, and DOD. I started a PhD program in Engineering and IT but dropped it when I became an entrepreneur. I had an idea for a first-to-market technology/products, wrote a business plan and PowerPoint presentation. 

I was extremely fortunate. I obtained a $1.25 million investment commitment from my first pitch to an Angel investor. I grew my engineering/manufacturing company from 2 to 45 employees in 4 years. That's when I got my a** kicked (2003-4). I lost my company through a hostile takeover and was dismissed with no forewarning or reason. The company changed names, but is still operating and has generated $100+ million in revenues since 2004 from my original products. I have given up my IP rights in exchange for a $4.5 million loan to handle customer demand. My patent was in multimedia data fusion. Told you, I'm a geek.

Two months later, I slipped on ice while fetching the newspaper and mail. I landed with all my body weight directly on my left hip joint. It broke and separated. It was 8 degrees with wind chill ranging from -5 to -15 degrees. I wasn't dressed properly. It was supposed to be a 1 minute quick trip. 

I went into hypothermia within 5 minutes. I couldn't drag myself back up the driveway (I made it about 8 feet). It is estimated that I laid on the concrete for 30 - 35 minutes before being discovered by a passing car. There was no traffic as we had received 8 inches of snow the night before and the road had not been plowed. A call was made to 911 and ~6 minutes later an ambulance and paramedics arrived.

I had gone into severe hypothermia. I was semi-conscious when found but unconscious when the paramedics arrived. My core temperature dropped to the low 80s. When I eventually woke up, I had been in the ER from ~20 minutes. The hypothermia was life threatening and they hadn't taken me for X-rays. I needed immediate surgery as the break had caused internal bleeding. I obviously survived, though I had to undergo 3 hip replacement surgeries over 8 years.

C'est la vie!

 


Iris L.
Posted: Thursday, January 24, 2019 10:21 PM
Joined: 12/15/2011
Posts: 16102


Retired Geek, are you healed from your fractured hip?    You were extremely fortunate.  Taking steps to ensure safety will become a priority now.  I'm sorry about your diagnosis.  Do you have a bucket list?  What are you doing now?

 

Iris L.


Mimi S.
Posted: Friday, January 25, 2019 12:20 PM
Joined: 11/29/2011
Posts: 7036


Welcome to or world retired Geek. I'm so glad you found us.

Yes, you have had quite a life and you can conquer this diagnosis.  It is so recent, so dolet it take a while to sink in.

Most insurance plans do not cove the PET scan.  If it is the glucose one, it is great, especially if you have more than one over time. One can see if and to what extent the brain has been impacted.

I would be concerned about your driving. Should you be still driving?  Giving it up is so difficult, but there may come  time. Perhaps you need to talk about this with someone close to you.

Do scroll further up and see what I have written about Best Practices. Several of us PWD frimly believe in it as a life style.


bjones2558
Posted: Wednesday, February 13, 2019 1:37 PM
Joined: 7/16/2013
Posts: 10


Welcome Rip! I have early stage, early onset too!

Barb


Mimi S.
Posted: Wednesday, February 13, 2019 5:26 PM
Joined: 11/29/2011
Posts: 7036


Welcome to our world, Barb. I hope you and Rip will call out help line 1-800-272-3900 and ask about resources in your state. On this site, we don't have the ability to chat on the phone, but the state of PA from which I recently moved has at least two different monthly phone chats for those of us in early stage.

Other states may also have these. 

Some of us in early Stage on this boards believe in the Best practices life stule. Following it gives one a strong possibility of prolonging our stay .

1. Take meds wen directed.

2. Vigoorous as possible physical exercise. We want to get the heart beating faster than nirmal for a bit. Such exercise builds new brain tissue.

3. Varied cognitive activities. We aim to stimulate, not frustrate.

4. Mediterranean diet. No smoking. Limited alcohol.

5. zMaintain or improve socialization. We need daiy one on one contact with others. We do no usually like crowds or noise.

 

do tell us more about yourself.

Do, both yu and 

Rip


Bronxgirl
Posted: Tuesday, February 26, 2019 12:11 AM
Joined: 2/25/2019
Posts: 2


Sure.  I can chat when he'd like to .

 


Bronxgirl
Posted: Tuesday, February 26, 2019 12:20 AM
Joined: 2/25/2019
Posts: 2


Thanks to all who told me about the email address, but how do I change that.  I need specific directions as I dont see where its posted!

 


Bestgrandma
Posted: Tuesday, February 26, 2019 1:18 AM
Joined: 2/26/2019
Posts: 16


Hi My name is Debbie and I am also newly diagnosed. My neurologist gave me the diagnosis of early onset dementia a month ago. I worked for 20 years in the business of international trade. I stopped working in 2012 due to medical issues. 
My neurologist put me on a medication that's a combination of namenda and aircept. He said it wouldn't remove the dementia but it would slow down the progression. I am having panic attacks nearly every day now. I see a psychiatrist & therapist already because I also have bipolar. I am going to increase my visits with my therapist. I am really excited to have found this support group. 

Mimi S.
Posted: Tuesday, February 26, 2019 11:42 AM
Joined: 11/29/2011
Posts: 7036


Welcome to our world, Debbie. I'm so glad you foud our site.

Seeing a counsellor is an excellent idea. What is the possibility that suc a person is knowledgeable about both bipolar and dementia.

What was the process of your diagnosis? Did you have a several hour long neuro-psych exam.

Do feel free to call our help line: 1-800-272-3900 ande ask to speak with the Care Consultant. This is a specially trained social worker. You may need to get a call back.  Also, when u first call, ask for the # of your local chapter. Do get in touch with them and get involved. Ask about support groups or Memory Cafes in your area. Face to face contact with others with the disease was so helpful to me.
Bestgrandma
Posted: Tuesday, February 26, 2019 1:29 PM
Joined: 2/26/2019
Posts: 16


Yes Mimi I did have an 8 hour neuropsych exam & an eeg. Thank you for providing me the phone number for the care consultant. I will take advantage of that information and call.