Dementia and CTE....great 44th birthday present.

[sarah7072]

I was diagnosed with CTE resulting in early onset global dementia right before my 44th birthday a few months ago. As devastating as it is, I guess the good news for me is I don't see the big deal or big picture. I know that it will effect my family. It's an annoyance to me having to go back and redo what I should have done the first time, and I get mad quickly,the forgetfulness, the most embarrassing is not being able to find words for my conversations. My kids and husband understand my gestures and can follow along but other people sometimes get lost, I think they think I'm drunk or on drugs lol. I don't have a social circle so I don't worry about that. I will just make memories with my kids as long as I can and God will take care of the rest

Sarah

[faithmarshallseattle]

First I love that you shared your photo Sarah - it shows your beautiful face and enthusiasm. I cant imagine how frustrated this feels for you. Your possitive outlook is wonderful and I think helpful for you. I am not familiar with what CTE stands for. ??? One of these other posts talked about clinical trials, I wonder if that may be something that would intrest you. Although I am sure handling the family keeps you plenty busy! Blessings to you Sarah.

[sarah7072 in reply to faithmarshallseattle]

Thank you for your kind words. I have copied what CTE stands for.

Chronic traumatic encephalopathy (CTE) is a progressive degenerative disease found in people who have had a severe blow or repeated blows to the head.

[jaykay777]

Sarah -- Your last sentence reveals a beautiful spirit.

[PNIAuthor60]

It seems strange to click on the LIKE button in this instance and I do apologize as it is the only button available to me, but I see familiar traits and struggles that I recognize though I have never been diagnosed with any degree of dementia.

You have just initiated a "social circle" of sorts by coming here to this wonderful community of people and though I know you were referring to a circle that you could see and touch close by to you, we are the next best thing!

Sarah, I rejoice in my spirit that you are a child of God who has decided to live her life and create her memories relying on his love, grace and mercy for you. What a wonderful attitude you have in the midst of such a distressing diagnosis. I admire the level of trust that you have developed in the King of Kings and you are right to believe that you can do all things through Christ who strengthens you. May God continue to bless you in your journey.

[Hidden]

Sarah

Omg..I am so so sorry...I often ask myself like everyone else WHY!!..

My husband was diagnosed at 59..our entire life has been put on hold ..He is experiencing the same thing you are..I hope you can find comfort here at this sight..I for one will reply to you anytime..love your family and take each day as it comes..make memories now...and don't anticipate the future...live, laugh, and love now!

Hopefully one scientist will discover a cure!

Ddcaribe

[Mpeterson53 in reply to Hidden]

Don't put your life on hold. There are diagnoses that let the SSA to give compassionate allowances. This means that your husband could retire and received the same benefits he would if he retired at his full retirement age. You and he should make a bucket list and start checking things off.

I had the opportunity last summer to go to Machu Picchu in Peru, pre-diagnosis. If I had known what I know now, maybe I would have stayed longer and seen more. However, that trip of a lifetime was just that. I continue to struggle with my attempts to become more fluent in Spanish, but I'm keeping my brain active as well as my body.

Hugs and support for you and your family! Mpeterson53

[sarah7072 in reply to Mpeterson53]

I have applied for ssi and they said at best I may qualify for ssi I am 2 credits short of disability. I guess I should have been tested earlier. They said my husband is to young for me to claim off him.

[Mpeterson53 in reply to sarah7072]

I know no one like to have to get an attorney, but sometimes that is the only answer one is left with by SSA.

[daddyt]

Thank you for sharing your story. I was diagnosed with early onset dementia at the age of 57... three years ago and then a few months later diagnosed with PSP. More testing revealed FTD (Frontal Temporal Dementia) which explained my significant cognitive decline. It's been a bit of a rollercoaster ride since my diagnosis. I completely identify with the issues you speak of, and may I add embarrassing some times. The disease will change you, and your family needs to understand this... there is plenty of material and support groups for dementias out there to help them on this journey. Please try to remember that it will change you... but don't let it define you. My family and I do all that we can, and give the rest to God.

Blessings.

[faithmarshallseattle in reply to daddyt]

Thank you for sharing your story too daddyt - i cant say enough for the genuine support i am feeling here in this group. I feel honored to be here with you all.

[sarah7072]

Thank you all for your support. It's very touching to me to hear such kindness from strangers. Even I don't fully get it. I think that frustrates my family. But I do thank you all. It's nice to read others stories.