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posterior cortical atrophy
PCAwife
Posted: Friday, October 23, 2015 3:35 PM
Joined: 10/3/2015
Posts: 2


my husband was diagnosed with PCA almost two months ago, he is Stage 6 on the FAST scale. He has expressed an interest in interacting with others with PCA, with my assistance doing the typing. He is 60 years old with a military background. We both think it would do him a world of good to share thoughts and experiences with someone who is going through the same journey he is. We realize PCA is a rare variant of AD but we are hoping it might be possible here to find others dealing with this same form of the disease.

The_Sun_Still_Rises
Posted: Friday, October 23, 2015 4:35 PM
Joined: 7/24/2015
Posts: 3030


Hi, and welcome to you both.

Socializing is one of the best things he can do to preserve function.

I don't know of many with PCA are on this particular board, but there is a very active video support group by and for people with dementia and there are a lot of members with PCA in these groups...they are run through Dementia Alliance International or DAI. As you sign up, mention the PCA and that you'd like to be in touch with others with it as well.

They are very good about sending emails with links to each week's group.

Their site is here: http://www.dementiaallianceinternational.org/membership/

I have loved these weekly groups as well as their Meeting of the Minds webinars wherein they have guest speakers. I have learned so much tips and tricks for living with it, and I have learned that what I have been experiencing is normal...and mostly, I just don't feel so alone with all that I have been going through.

Hope that helps.

Welcome.



Iris L.
Posted: Friday, October 23, 2015 5:25 PM
Joined: 12/15/2011
Posts: 14829


Welcome to our online support group for patients, PCAwife. We have patients here with different diagnoses of dementia or cognitive impairment and some who have symptoms but have not been diagnosed. My own diagnosis is cognitive impairment not otherwise specified. We share and support each other. We would love to meet your husband.

Members of course may visit any website, but I have found, in my six years on this board, that this board offers the best support for patients. I have learned so much about taking care of myself from the other patients and from the caregiver members. I call us Dementia Pioneers, because we are the first group of patients who are active in our own care and treatment.

Is there any question we can answer? He is welcome to post on this board, or to join us on the Young Onset board. That board is more active. Either board is okay.

We also have a Spouse/Partner board where you may meet others for support and knowledge.

Iris L.

An DI
Posted: Saturday, October 24, 2015 7:03 PM
Joined: 5/10/2015
Posts: 29


PCAwife,
Thank you for posting. For the record, I have early onset Alzheimer's.

One of the things that has been a lifesaver to me is Memory Cafe groups. The groups in my area are growing quite a bit.

My favorite group meets every two weeks. There, one can go and be with others who have Alzheimer's or similar conditions along with their caregivers. We don't have to impress anybody and can just be ourselves as we are. We often play little games and in my group there are always cookies and refreshments. We accept each other just as we are. Occasionally, the caregivers will have a chat while others come in to help us Allzie's.

Just a suggestion! An Di

 
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