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New to this - please resond
spearamint
Posted: Tuesday, September 5, 2017 7:28 PM
Joined: 9/3/2017
Posts: 10


Hi, my name is Spearamint and I am 53 years old with Alzheimer's, I would like anyone similar to be a connection. Any advice or support is well accepted! Thank you.
Canada111
Posted: Tuesday, September 5, 2017 8:05 PM
Joined: 8/22/2016
Posts: 263


Hi Spearamint. I am pleased to meet you. Sorry you have to belong to this club, but I welcome you here. I was diagnosed in February. How were you diagnosed? Did you have an FDG Pet CT? Are you still working?
Bear2
Posted: Wednesday, September 6, 2017 1:30 AM
Joined: 8/10/2017
Posts: 10


Hi Spearamint,

I have Alzheimers too. I found out about 2 month. When did you find out?


llee08032
Posted: Wednesday, September 6, 2017 7:56 AM
Joined: 5/20/2014
Posts: 4408


Welcome Spearmint and Bear2. Like Canada said sorry you have to be here. Looking forward to hearing from you both.
Mimi S.
Posted: Wednesday, September 6, 2017 8:50 AM
Joined: 11/29/2011
Posts: 7027


Welcome to both newbies. We're so glad you found us.  This is a great place for those who were diagnosed at a younger than average age. 

It's hard for us older folks to find others, locally, that we can speak with.  You folks are still working, doctors don't believe you are accurately reporting your symptoms, so usually it takes longer for a diagnosis.  Thus the several questions on how you were diagnosed.

It's not to early to think about attending the National Forum given each spring in Washington DC . There you will have the opportunity to meet and talk with, so many other diagnosed folks. I attended for several years and this, for me, was the best part. For others there is an opportunity to tell your story to your Congresspersons or their staff.  Dementia is a non-partisan issue and we are all asked to speak only to that issue.   

Do get to know the folks in your local chapter. Become active.  Sometimes the chapter has funds to give a scholarship.  Sometimes car pooling is done.  PWD are not charged a registration fee, which is a major part of the expenses since it also covers almost all meals. But still to be covered is the cost of your room and I would strongly advise getting a room at that hotel, and transportation.  If you do not need a caregiver, the local chapter can often find a roommate for you to share expenses with.


Mimi S.
Posted: Wednesday, September 6, 2017 8:51 AM
Joined: 11/29/2011
Posts: 7027


Welcome to both newbies. We're so glad you found us.  This is a great place for those who were diagnosed at a younger than average age.

It's hard for us older folks to find others, locally, that we can speak with.  You folks are still working, doctors don't believe you are accurately reporting your symptoms, so usually it takes longer for a diagnosis.  Thus the several questions on how you were diagnosed.

It's not to early to think about attending the National Forum given each spring in Washington DC . There you will have the opportunity to meet and talk with, so many other diagnosed folks. I attended for several years and this, for me, was the best part. For others there is an opportunity to tell your story to your Congresspersons or their staff.  Dementia is a non-partisan issue and we are all asked to speak only to that issue.   

Do get to know the folks in your local chapter. Become active.  Sometimes the chapter has funds to give a scholarship.  Sometimes car pooling is done.  PWD are not charged a registration fee, which is a major part of the expenses since it also covers almost all meals. But still to be covered is the cost of your room and I would strongly advise getting a room at that hotel, and transportation.  If you do not need a caregiver, the local chapter can often find a roommate for you to share expenses with.


spearamint
Posted: Wednesday, September 6, 2017 8:47 PM
Joined: 9/3/2017
Posts: 10


Thank you to all who responded to me. I was diagnosed about 6 months ago with a ct scan. They said my two frontal lobes of my brain had shrunken and that was the reason for the huge memory issues. I  have lost most of my friends due to this...my husband says they were fair weathered anyway. That still doesn't help the feeling that I am all alone in this. My husband is the only one that knows about my dx (besides the abandoning friends). I have chosen to keep it from my family because I feel they would not be supportive or helpful.... I am grateful that this forum is here for me and yes, I am sorry we are all here for the same thing. I am trying to stay positive  at 53, knowing there is a lot more living to do and to make the most of it.  Saying that, I still have the feeling of anger, sadness and loneliness.  Scared is somewhere in there also. Thank you for the support; I do not feel all alone anymore.
Bear2
Posted: Thursday, September 7, 2017 2:30 AM
Joined: 8/10/2017
Posts: 10


It took  3 years for me to be diagnosis. It was horrible. My mother had it and her sister. I new that it could happen but not at this time. This week will be my last day of working. Sometimes I feel ok but other times I get very sad. I am glad we have this to help.
Mimi S.
Posted: Thursday, September 7, 2017 7:50 AM
Joined: 11/29/2011
Posts: 7027


Bear, do tell us more about yourself. Both Canada and O'Brie, among others are also recently diagnosed and ad to stop working.
BlueSkies
Posted: Thursday, September 7, 2017 12:16 PM
Joined: 2/24/2016
Posts: 1096


Welcome spearmint and Bear2.  Glad you found your way here.  Hope you will stay and share many posts with us.  Looking forward to getting to know you better.

Lots of love to you both....BlueSkies


spearamint
Posted: Thursday, September 7, 2017 7:18 PM
Joined: 9/3/2017
Posts: 10


Thank you everyone for responding, you are all so nice.  I have so many feelings regarding this new diagnosis. I have had one alilment after the other my entire life (ie. fibromyalgia, chronic fatigue syndrome) so  one more health problem shouldn't come as such a shock. But this, this I did not fathom. Especially being so young. Where did it come from? My family history doesn't have it...did I do something to cause it?

Before the medication Namzaric, I lost my ability to read and write. On the Namzeric I re learned them. Has anyone every heard of such  a thing? My friend tells me that is impossible and I must not have Alzheimer's at all.

I  have never received any support from my family in my life so I haven't told any of them. I guess I feel vulnerable to their rage and rantings rather than support. Saying that, I feel very alone and scared. Thank you all for being here for me. Please give in-put if yo have any.


llee08032
Posted: Friday, September 8, 2017 7:10 AM
Joined: 5/20/2014
Posts: 4408


Spearmint,

Of course you can lose your ability to read and write with an impaired brain and cognition. It is frustrating when others question our diagnosis and symptoms! 

Ironic how suddenly friends and family act like they have MD degrees from Harvard and are experts in dementia. Trying to explain the complexities, delicate and intricate workings of the brain- how all systems can be impacted to those seemingly aghast and in la la land when your feeling like your in la la land because your cognition is impaired is all the more frustrating. Too much. Not validating. Not supportive.

Unfortunately, it's up to us to figure out the science of what's happening to our bodies and brains and teach others how to support us.

You do not have to decide overnight about telling your family. I'm sorry to hear they would not be supportive when that is what you greatly need. I'm in the same boat and will have to depend on neighbors, friends and paid help if that even pans out when I get to that point.

Right now you need to focus on taking care of your health and reducing and minimizing stress in your life. Finding peace and simplifying your life is vital to your existence now. Very important. 

This must be a tough week for you Bear! Please let us know how your doing and coping.


julielarson
Posted: Friday, September 8, 2017 10:12 AM
Joined: 9/30/2015
Posts: 1155


Hello Bear and Spearmint, I have been here a while and these people are wonderful in the help that they give.. It is my hope that you both can come and get the support you need here.. You can ask anything and people will respond to your questions as best as they can.. There is also a 1-800-272-3900 number you can call .. It is for the national Alzheimer's Association and they have care consultants that are professional social workers who are there just for answering questions and putting people in contact with local resources if they need them.. They are free to speak with..  Welcome to the best place to be for people who are newly diagnosed..
BlueSkies
Posted: Friday, September 8, 2017 10:59 AM
Joined: 2/24/2016
Posts: 1096


Spearmint, llee is absolutely right.  Abilities can come and go sometimes with this illness.  Think of it like a wire in a lamp.  When the wire is going bad sometimes the light works, sometimes it doesn't.  Sometimes it will flicker on and off.  It could do this awhile before finally quit working at all.  Your brain is much more complicated than a lamp and all kinds of strange things can happen.

I had numbness on the left side of my body for a couple days.  Doc did CAT scan looking for signs of stroke.  CAT scan was fine.  A couple days later I was fine, except for numbness on bottom of my left foot.  My doc said that can't happen and wanted to put me on antidepressants.  He thought it was in my head.   I knew I wasn't depressed and declined and went in search for help else where.   I eventually ended up at UAB teaching hospital.  I told the neurologist there that my doctor said that can't happen about the numbness.  She said, "of course that can happen".  She said she hoped I was no longer with this doctor.  I said I was not.  So yes, the brain can do some crazy things I was informed and it can make you act in strange ways also.  My neuro at UAB said a lot of her patients are told it is all in their head and are unfortunately diagnosed with mental disorders and put on meds.  So please know these weird symptoms can come and go and make sure you have a good doctor who knows all about this illness so you will get the proper treatment. 

Also you will have to develop a thick skin as people can be knowingly, but most times unknowingly out of ignorance, cruel.   You have to focus on you now and not others.  As llee said, please eliminate as much stress from your life as possible.  Stress will make your symptoms so much worse.  Find some relaxation techniques that work for you and use them regularly.  Also get outside.  Being outdoors and enjoying nature is one of the best ways to get your mind off your problems and back in sync with life.  It is what keeps me going and connected.  I am unable to do anything that is strenuous, but just walking about the neighborhood or in the woods behind my back yard is sufficient as long as you stop thinking and really connect with everything around you.  Listen to the birds, the sound of the wind going through the trees, the crickets chirping, water trickling down a creek, the feel of the sun as it gently warms your skin.  There is so much to enjoy.  Plant a small garden in the summer.  Grow some herbs in the house in winter.  So much you can do.  Just find what works for you and do it!  Sorry, I am starting to ramble, lol.  I just so love nature   The point is, try to take your focus off all that stresses you and put it into what makes you feel good.  You have to do it.  No one will or can do it for you.  Find what works and enjoy!

I just want to mention also that most of us feel alone and scared when we get this diagnosis.  Just know that it is normal and accept it as so, then do what you can to make yourself feel better.  That's what I do.  Coming here was a great step in that direction.  As Julie said, you will get a lot of support here from people who are in your shoes.  Who know what you are going through.  Our symptoms may not all be the same, but we understand because we are going down that same road as you. 

Also if you ever find that you can not cope or have questions that you can't find answers too, please do call the 800 # Julie posted.

I hope this helps some.  Hang in there.  You are not alone anymore!  

Sending you lots of love and strength....BlueSkies


spearamint
Posted: Saturday, September 9, 2017 12:37 AM
Joined: 9/3/2017
Posts: 10


Thank you all for being so kind, accepting, helpful  and sympathetic. I will address everyone when I am able to.. Right now I am having a lot of cognitive problems and need to read very carefully and respond with attention. Please forgive any tardiness on my behalf. I should have a better day tomorrow I hope.  For now, thank you and I will try again tomorrow.
Bear2
Posted: Saturday, September 9, 2017 1:29 AM
Joined: 8/10/2017
Posts: 10


Hi, I am still in shock. I wake up every morning and remember I have this big thing in my life. I am having problem with my office. They are not willing to let me out of my lease. It is very stressful to me. I am also trying to decide if I want to get in to a clinic trial. I will have to see.

Thank for being here.


llee08032
Posted: Saturday, September 9, 2017 7:47 AM
Joined: 5/20/2014
Posts: 4408


Don't worry Spearamint long response not necessary. Jsut do what you can. Low expectations and no pressure environment  here. Sometimes I have trouble writing more than a few sentences for weeks at time and then bing it's back. 

Hang in there Bear. The shock will wear itself out after a while.

spearamint
Posted: Saturday, September 9, 2017 8:33 AM
Joined: 9/3/2017
Posts: 10


thank you so much

 


spearamint
Posted: Saturday, September 9, 2017 8:38 AM
Joined: 9/3/2017
Posts: 10


////thank you so much. Hang in there. Some days are better than others. One moment at a time. Remember the stages of loss/grief, death: Denial, anger, bargaining, depression and acceptance. Not always in that order. May happen more than once. It does get better. Believe me. I will also keep you in my thought and prayer.

 


alz+
Posted: Monday, September 11, 2017 4:52 AM
Joined: 9/12/2013
Posts: 3608


spearmint - welcome!

you wrote you have had health issues for a long time - that is true for many of us which makes me wonder when did this actually start?

when people come to the boards there are so many things we all learn, and as we each invent and re-invent our lives we leave a legacy of what worked and what didn't for 1000s of others.

will also add to L lee's experience that abilities flicker. I think "that ability is shot!" and then it comes back. Still, when I lose the ability I still think it is gone for good.

I found alternative stuff worked for me when the alz meds were not (aricept did work but I had allergic reaction). 

I suspect I have had ALZ symptoms since 1992. I was diagnosed in 2013 and am still walking with my dog and sometimes have really good days.

Look forward to learning from you and Bear.


spearamint
Posted: Tuesday, September 12, 2017 8:09 AM
Joined: 9/3/2017
Posts: 10


thank you for  your welcome. I was diagnosed by ct scan and several trips to the neuologist. How do we set up to have you as a friend on this site?
BlueSkies
Posted: Tuesday, September 12, 2017 2:09 PM
Joined: 2/24/2016
Posts: 1096


Click on name above the persons picture you want to connect with and then click on "invite".  An invitation will be sent for the other person to accept or not.  Then if they do, they will be added to your connections.  Where you can send private messages to them when ever you want.
spearamint
Posted: Sunday, September 17, 2017 2:47 PM
Joined: 9/3/2017
Posts: 10


Thank you!