365 days of us

ill-support-you-quote-hd-wallpaper-1920x1080-1840

It has been one year since I started sharing our journey of Younger Onset Alzheimer’s with the world through this blog. One year. 365 days of heartache. 365 days of support, love and camaraderie.

In the past year I have read so many stories from around the world of other families going through the same heartbreak. It is comforting and at the same time frustratingly sad. How can so many people be dealing with this crisis, yet there is still no hope, no cure and no real treatments to at least be able to live with the disease long term? You end up where you are going to end up whether you take the medicines that are currently available or not.

We are blessed in so many ways. Along with our curse has come unimaginable strength and fortitude I was unable to see before. We have been given many opportunities to be part of the solution. We have been helped in numerous ways by friends and by strangers.  Sometimes it is difficult to see our path and where we are headed because it is filled with sorrow and loss and suffering. Writing my thoughts and feelings has helped me enormously. It has helped to share and it has helped to see our life from an outside point of view. I highly recommend to all that can to keep a journal or somehow share their story as well. Not only will you help yourself, you will help others too.

I want to take this opportunity to thank you. Thank you for reading. Thank you for sharing. Thank you for your love, prayers and suggestions. Thank you for writing and reaching out to us. Thank you for believing in me even when I don’t always believe in myself.

This is a very difficult life I am living. But I am not alone. It is almost unfathomable the number of families dealing with this pain and bereavement

From the bottom of my heart, I send out my gratitude.quotes-helping-others-anne-lamott-600x411

 

Here are a few more notes from readers I would like to share with you: 

… I am so at the same spot you are with my feelings about my husband’s Alz.  He is a little older (60 this year) but it’s been coming on for years, and I saw it way before anyone else.  I understand the fear and the desire to just run away!
One of my friends put it best for me when I told him about it – he said   “Lynnie, you are so f—–d”.      Note that his comments were for me, not for my husband, who has the disease. 
Forgive my crassness, but I thought you could appreciate the sentiment!
Keep posting – I am a faithful follower, because so much of what you write could be me writing it – our husbands are at very similar stages – mine couldn’t remember how to change a lightbulb last week.
— thank you so much for being crass. I love it. Sometimes that is what the situation calls for!

 

I’d like to introduce myself.  I follow your blog and enjoy reading it.  We do not have the same diagnosis- but parallel lives with a different disease.  We too have small children(10 and 5) whom we are navigating thru something life altering and without a handbook.
My husband, successful in his life, was diagnosed with Parkinson’s disease 6 years ago.  The slippery slope ensued. Loss of pride, dignity and loss of job.  All progressive neurological disorders have their own ugly path.  We just happened to be involved in college athletics and the weak do not survive.  Sometimes your posts, although real, cut like a knife.  I wanted to share with you the great courage I think it takes to speak your truth.  I hope for all of us (especially our children) that compassion exists.  I know that compassion can only be seen once knowledge and education flourish.  So I applaud your educational /advocacy efforts.   
–You are right. It seems all neurological diseases are so hard on families. Thank you for speaking out and sharing your story as well. You are a beautiful family.

 

Hi Karen.  I just watched your video and was very moved.  My husband has Early Onset ALZ and much of what you described is, of course, what we are living through.  God bless you and your family in this struggle and thank you for the efforts you are making to move us all closer to a cure.
–I hope you are blessed as well and staying strong for your family. It is tough some days.

 

I stumbled across your blog and in a strange way, it
makes me feel better about the journey I’m on.  Mine is very similar to yours, in that my wife of 30 years was diagnosed with early onset Alzheimer’s 2 years ago at the age of 48.
Yours is the first voice of someone that understands how I feel and how lonely this road is.  My wife Karen is doing well, and to someone that didn’t know her 5 years ago, she would just seem absent minded.  But it’s far from the same…  And it continues to get worse.  Well enough whining, time to get some sleep and do it again tomorrow.
–Yes sir….we will do it all again tomorrow. Thank you for your advocacy work and for your fundraising efforts.

 

I just came across your blog via AFA’s post on FB. We worked with AFA a lot through the years (I live on Long Island)
My husband was 36 when he was diagnosed. Our children were only 7 & 9 years old at that time. We took care of him at home for 11 years. He passed away, at home, February 28, 2012.
I can tell you it was a very long and difficult battle, but me and my children made it through. We also had a great support system. Although my husband’s family was not there for much, my family and friends were a  tremendous help. It wasn’t the number of people helping us, it was the quality and dedication.
I wish you strength and a sense of humor for your journey. If there is anything I can do to help you, please let me know. Through the years  I have connected with quite a number of spouses who are also dealing with Young Onset Alzheimer’s Disease. It sometimes helps to have someone who truly understands.  
I also started a blog when my husband was diagnosed (www.henleysheroes.blogspot.com).
Be well and stay strong.
–I hope you are doing well and you are still sharing your journey to help us all find cure.

 

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (4)

4 Responses to “365 days of us”

  1. Joe is beginning his 11th, year, We now are facing eternity living apart. I find this as hard emotionally as being a full time caregiver. My oldest son called me after one of his visits> He said mom I know you want and need to visit dad often and I realize that the visit is “emotional torture. It is at times but I have learned to visit with no expectation and relish the joy from a kiss, a pat or just watching him sleep Deane Jogbson

  2. william nash says:

    i have followed your blog for several months. i was diagnosed with early mild cognitive impairment that probably will be from alzheimers disease based on family history a high risk gene i carry and studies done in the research study i am enrolled in.
    i watched my mother go through the disease then a younger brother who recently died. he was diagnosed at 54.
    i feel like i do have it and take aricept daily. i read your blog knowing thats what my sisterinlaw went through. i also know that thats what my wife faces.
    i am hoping she will read your blog but i know that its painful for her to do so as its painful for you to write it.
    i write my blog and luckily im so early into the disease that i can write down my thoughts about myself and my life while i can from the perspective of an affected person. i also have the perspective of being a family doctor.
    i know its hard to do but i hope you continue to write your blog as its helpful to others so affected. i know it will be helpful for my wife in the future.
    this is all important as treatment is around the corner not for jim or for me but for our kids.
    thanks again for your blog. i am glad i discovered it.
    the organicgreen doctor

  3. Claudia Kosa says:

    (MUST READ: HOW I GOT CURED FROM PARKINSON’S DISEASE)
    My name is Claudia Kosa I thought i should share this here as someone may need this information; I was diagnosed of Parkinson’s disease in February 2015, my doctor told me it has no permanent cure, i was given monoamine oxidase (MAO)-B inhibitors and other medications to ease the situation, this continued till a friend of mine told me about Dr Mapipa from South Africa who cured her father of parkinson’s disease and Glaucoma. I contacted this herbal doctor and bought the herbal medicine from him, i received it within 6 days and applied it as prescribed and was totally cured within 19 days of usage. my life is back again! Contact this herbal doctor via his email mapipaherbalclinic(at)gmail(dot)com or call/whatsapp +27617403481 (Write email in right format)

  4. Joan says:

    (MUST READ: COPD TREATMENT)
    I am Joan Barragan from Portland, Oregon, USA. I was diagnosed of COPD/Emphysema in Providence St. Vincent Medical Center in 2014. In August 2016 my condition worsened and my doctor adviced me for Lung volume reduction surgery to remove part of my lungs, making room for the rest of the lung to work better, considering the risk involved i was scared and i resorted online for help, I was in a health website when i read a testimony of a woman from Canada who was totally cured of COPD through the herbal remedy she purchased from a herbal clinic in South Africa, i immediately contacted this herbal clinic via their website and purchased the COPD herbal remedy, i received the herbal remedy within 7 days via courier service and commenced usage. After four weeks and two days of usage, I did another breathing test and my doctor confirmed my lungs were repaired. Thank you Health herbal clinic. Contact this herbal clinic via their website www(DOT)healthherbalclinic(DOT)weebly(DOT)com

Place your comment

Please fill your data and comment below.
Name
Email
Website
Your comment