Just diagnosed

chafatelli

My name is Steve. I was just diagnosed with early onset dementia. I am 61 and have non idea what i will be in for. Any suggestions or info would be most welcome.

jgreen

Hi Steve.

You’ve made the first step - good for you!

I am a caregiver for my husband who has AD - not early onset AD as you have. Here is advice I’ve gotten from friends, and the support group of caregivers:

Involve trusted family members or friends in your journey. Eventually you won’t be able to do this alone.

Think about an Elder Care Attorney to help you get your affairs in order while you can. I found that this person is also able to help me with future plans for my husband IF needed. My personal opinion, but I believe money well spent.

There are some respected individuals who have websites, YouTube videos, and documents that can help you navigate this awful disease: Natalie Edmonds “Dementia Careblazers”; Teepa Snow, Occupational Therapist teepasnow.com; Tam Cummings tam Cummings.com. These three work primarily with caregivers but some of their information may be applicable to you.

And you might call the Alzheimer’s hot line and talk with someone about resources for people living with dementia.

Prayers and hugs to you, Steve.

john mackenzie

Hi Steve,

I'm 77 and showing symptoms for a while. I think types of symptoms and speed of progression is different with everyone. Day to day I do ok. I use GPS a lot, finding it difficult to remember direction even around town. My partner, Sue, will talk of a great time we had a restaurant a few years ago. She can recall where we sat, who we talked with, etc. I have no memory, but end up liking myself for being the guy who takes his friend out to a nice restaurant.

Also I'm more in the present and somehow lighter. Sue says I'm happier, easier to be with.

Good luck

John

Dorse

Dementia or Alzheimer's? I understand there is a difference. I was diagnosed with Alzheimer's 4 months ago. I am having such difficulty accepting this diagnosis, therefore, I do understand how devastating either diagnosis is.

lfaust58

Ok,Steve

First of, thanks for joining our ALZ support group you found the right place. Have you spoken with your doctor about next steps?- it's important to start treatment early.

Larry

sogdoc

Steve,

My name is John and I am a retired Family Physician who was diagnosed in June with Early Onset Alzheimer's at the age of 59. It can be a very confusing process dealing with the news and managing treatment etc. Everyone of us will have a different road to follow. Advice from previous posts is spot on. You have found a great place to share and learn more about our disease process. Also, very important to work closely with your physicians and family. There are some new treatment options that you should talk with your physician about. In early disease the 2 new IV infusions are Kinsala and Lequembi which are worth looking into with your provider. I won't go into details but some people do it and others have chosen not to for a variety of reasons. If you decide to proceed though it is best to start it as early as possible. I personally have been getting Lequembi infusions every 2 weeks for the last 4 months and have been doing well with them. At this time as others have said get a start on planning your affairs. I hope to fight this for many years but have already put my affairs in place just to ease my mind and help my family if I should have a rapid decline. In general any treatment available at this time including Lequembi is used to delay the decline from Mild Dementia to Moderate or more Severe Dementia. I am doing it to try to prolong my quality of life as long as possible. Reach out to your family, friends and physicians for support. I have found everyone has been supportive and willing to help in anyway they can. I wish you the best.

John