Loss of My Life, My Future Because of Alzheimer’s.

@SusanEllen66 I think we come to a realization of how our lives change with a long term or chronic health condition. We look back at how we used to live life, or thoughts of what we had planned but are not able to accomplish now. It can't help but sadden us.

I have been there, and had to decide to make the best of what the deck of cards has dealt me. Reach out to your family, and enlist their help and support. Likewise to your medical team. Go to the Alzheimers Association website alz.org for tips and support. Don't be afraid to be vulnerable.
Ginger

@gingerw thank you.
Denial. The game we’re playing right now is hide it under the carpet and maybe it’ll go away. That’s my family not me. I acknowledge my disease every time I meet somebody and they need to know I do however my family that’s too much they are still looking at me like really are you kidding me? You’re fine. I feel like I have to prove to them that I am really sick. It’s frustrating.

My biggest problem right now is Ataxia. That is causing me more problems than anything else. I cannot walk without a walker and my balance is so bad that if I don’t have the walker, I crash into the walls. I just had to get eyeglasses for the double vision. It’s just not a pleasant disease either so both of them mixed together. Gives me quite a job every day to stay sane.

Ah, but my sanity remains in place when I place my troubles into the hands of Jesus Christ. He is the rock on which I stand. He will neither leave nor forsake me. I am blessed.

@SusanEllen66 We cannot control how family and friends will see a situation. For them, it may be a reminder of how they could also be. It may be they don't know how to support you, or may not hear you when you offer up tips to help you. Remember, their lives change too, with your diagnosis.

Can you check with your medical team, and ask how they can help you with the ataxia issue? There may be some correlation and parallels they can address.
Ginger

@gingerw hi Ginger, things have changed recently. I found the organization, Dementia Action Alliance, DAA. Website is http://www.daanow.org

“Dementia Action Alliance invites people living with dementia and/or their care partners to join us online.”

I have been attending their ZOOM meetings hosted by others with dementia. DAA has these meeting throughout the week, each with a different topic.
The meetings are small, and always pleasant.

If you want to attend any of the virtual programs, email them,
Virtualprograms@daanow.org

I really like the others in DAA, and have made friends.

SueEllen-
Please know that your brave and honest messages have touched my heart many times.
I visited the DAA website with tears of wonder and admiration.
Telling the truth is empowering.
Thank you.
Ed

@edsutton thank you for your kind words Ed. DAA is a safe place to express yourself. I hope you have joined. If so, I am sure I will see you at a ZOOM!

I don't want to give you false hope but I have a relative (that I moved a long way to be near) who has dementia and was told by doctors and dementia professionals years ago it would be progressive and unfortunately that was the way it would be. There would be no reversal. Well, my relative is far better in all respects than they were years ago. I believe this had to do with the fact they went into assisted living where they got the right medication, professional care and all day stimulation. No one can explain it, one exceptional caregiver knew that it was possible, and expects more improvement, and I am totally amazed each time I visit. They wear me out each time I go as they want to walk around the facility, inside and out, for literally hours and socialize along the way with anyone we come across. When they arrived at the assisted living facility years ago they were unintelligible, could barely walk and the prognosis was dire! So you never know!

@SusanEllen66 I am happy to read your post, and find you have been so resourceful to get a group of people who you can relate to. Not feeling alone as we travel a health condition is, to me, so important. It's good for our soul, isn't it?

Thank you for these links. I bet there are others who will look into them, too!
Ginger

@robertwills that’s terrific. Community is helpful. It stimulates mentally and physically. Attending the Zoom meetings from DAA has been a blessing for me. My favorite is the ‘Faith Hope, and Love’ on Friday. Also, Music Trivia is great fun!

I’m testing VR (virtual reality) for people with dementia today. Sounds like a hoot!