RSS Feed Print
Looking for Support Groups for Younger Onset
revheke
Posted: Friday, April 3, 2020 7:56 AM
Joined: 4/2/2020
Posts: 5


Hi All,

 

I am a newly diagnosed 41 year old, looking for support and connections with those in the same position. I am not exactly sure the best way to connect. For  few years I knew something was wrong and finally got diagnosed on my birthday 3 weeks ago. You can see more of my story on Twitter @thelongfootpath  or Instagram @the.long.footpath if you are interested and gives you a bit more of my background. Any information would be greatly appreciated as I am finding it hard to find support groups in my area. I live in the Boston, MA area.

Have a blessed day,

Rev Andreas Heke


Michael Ellenbogen
Posted: Friday, April 3, 2020 8:00 AM
Joined: 11/30/2011
Posts: 3400


Where are you located?


revheke
Posted: Friday, April 3, 2020 8:38 AM
Joined: 4/2/2020
Posts: 5


Hi, I live in the Boston, MA area.
Michael Ellenbogen
Posted: Friday, April 3, 2020 8:59 AM
Joined: 11/30/2011
Posts: 3400


You happen to be in one of the best areas in the county and there are so many resource were you are at. I would reach Out to your Local Alzheimers Association and ask them what is available. There are many things there and you are lucky to be in good hands. 


revheke
Posted: Friday, April 3, 2020 10:55 AM
Joined: 4/2/2020
Posts: 5


Hi, 

Unfortunately I have reached out to them, I even went to two events, but I seem to keep slipping through the system, possibly because of my age. I guess it is just one of those things, but I keep trying. 

Thank you.


Michael Ellenbogen
Posted: Friday, April 3, 2020 11:00 AM
Joined: 11/30/2011
Posts: 3400


  Call this number and let them know you are not getting the support you need and who you had spoken with

 

Alzheimer's Association 24/7 Helpline, 1.800.272.3900

 

If you still need help after that send me your email privately and I will see what I can do.

 


Iris L.
Posted: Friday, April 3, 2020 2:43 PM
Joined: 12/15/2011
Posts: 16563


Welcome Rev Heke.  I cannot go to Twitter or Instagram to find out your story.  Finding local support is difficult.  I complained to my local chapter about a lack of a group on my area of Los Angeles County, and a new support group was created.  Perhap one can be created in your area.  


In the meantime, seek out support and help where you can find it.  I have learned the majority of what I need to know right here on these message board pages.  How are you doing for yourself?  Do you have any other questions?  The members here are the most knowledgeable.  Our board is small, but you will get answers and direction to another resource if necessary.  Beware of outside advice, much advice is not specific for or suitable for PWDs (persons with dementia). 

 

Iris


revheke
Posted: Saturday, April 4, 2020 10:26 AM
Joined: 4/2/2020
Posts: 5


Hi Iris, 

Thanks so much, sorry it took a while to respond. My writing has gotten bad in the last couple of years so I have had to wait until someone could help me type. Thank you so much for your ideas, I have just started learning the website and message boards.

Quick run down of my story, I got a TBI 15 year ago, doctors originally thought it was punch drunk dementia from the TBI and I was told it could lead to Alzheimer's as it runs in my family, but I was not expecting it to happen so soon, but unfortunately the TBI triggered it. I think it is because of my age that somehow I slip through the system but I keep trying and hanging in there. I have walked over 7000 miles for the Alzheimer's Association to raise awareness. Younger Onset can be very worrying but thanks to people like yourself who reach out, it makes this journey a bit easier.

Thank you again and best wishes,

Rev Andreas Heke

 

 


Michael Ellenbogen
Posted: Saturday, April 4, 2020 10:53 AM
Joined: 11/30/2011
Posts: 3400


Don’t worry about your typing or spelling as mine is terrible any more. People here on the boards do not judge you which is great. 


Iris L.
Posted: Saturday, April 4, 2020 4:34 PM
Joined: 12/15/2011
Posts: 16563


Yes, as Michael says, don't worry about typing or spelling, we understand.

Are you saying the doctors have ruled out CTE (chronic traumatic encephalopathy)?

Iris


revheke
Posted: Saturday, April 4, 2020 5:23 PM
Joined: 4/2/2020
Posts: 5


Hi Iris,

Yes, originally that is what my doctors in Britain said but when I came to America and started with a new set of doctors I got stuck with a rotating cast of residents and somehow not all the information came through so they never sent me for MRI or other tests and diagnosed me with punch drunk dementia from the head injury. I got increasingly worried with my symptoms so I found myself a new doctor who sent me for an MRI and a CT scan and the results came back as younger onset and my new doctor also found 4 strokes that the other resident doctors had missed. I have a follow up at the end of April with the neurologist as they think it could be younger onset Alzheimer's combined with something Parkinson's related. Hopefully my appointment won't get cancelled or at least will not be pushed too far out. Thank you again for reaching out. Hope you are well.

Best wishes,

Rev Andreas Heke

 


Iris L.
Posted: Saturday, April 4, 2020 6:36 PM
Joined: 12/15/2011
Posts: 16563


I see, Rev Zeke.  I'm glad you have a new inquiring doctor.  Nevertheless, there are things to know along your journey that the doctors are not familiar with.  Feel free to ask questions.  Stay safe in this new situation.  


Iris


JamesSonDad
Posted: Friday, April 10, 2020 4:53 PM
Joined: 4/29/2019
Posts: 27


My daughter has younger onset Alzheimer's diagnosed at 51 three years ago. She tried several support groups and found those with older ages were not relevant for her. After that she tried three of four groups her age in a large metropolitan area, but each one fizzled out. There were only a few and they required lengthy travel time. The number of participants was small, irregular attendance meant they couldn't keep in touch well and the times to meet were difficult with work schedules. I tried to find groups for me as the caregiver and had the same problems. I reconnected recently with one using Zoom, which worked tolerably well and may continue. You might try looking on line now. I attended a recent six week group coordinated by my daughter's neurologist and enjoyed the five people who also were caregivers. It was only a six week group and none of us have followed up with each other.  

I want to affirm what Lois and Mike have said. This connection works well so I haven't missed having a support group. 

Good luck.