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The most important thing
Iris L.
Posted: Saturday, February 16, 2019 11:09 PM
Joined: 12/15/2011
Posts: 16143


The most important thing for me as a Dementia Pioneer is to develop a philosophy to enable me to be motivated to go forward.  I fell into a deep depression after my geriatrician told me I had to accept that I had dementia!  After a long while and much introspection, I came to the conclusion that if I had dementia, I was not going out like a victim!  What does that mean?  I would do whatever it took to maintain my independence and to maintain my dignity.  I would make my own decisions about my own life and not be beholden to others who are uneducated and uncaring about dementia and my specific needs.  

This philosophy keeps me focused and is helping me let go of whatever needs to be gone--so many things.  And helping me to feel good about what remains in my life.  I have to keep reminding myself, because I forget.  But when I do remember, I feel good; I feel oriented and I feel stabilized. I feel like I can keep going.

Iris L.


Smilesyourway
Posted: Sunday, February 17, 2019 10:30 AM
Joined: 1/11/2019
Posts: 70


Beautifully said.  You are an inspiration and a mentor. 

Smiles


Bestgrandma
Posted: Tuesday, February 26, 2019 12:38 AM
Joined: 2/26/2019
Posts: 16


Awesome thoughts. After feeling completely overwhelmed with the diagnosis of dementia I am trying to learn as much as I can.
Smilesyourway
Posted: Tuesday, February 26, 2019 11:44 PM
Joined: 1/11/2019
Posts: 70


Dear Best Grandma:  The diagnosis kicks hard and sends us all for a loop.  Depression and anxiety seem to come with such a diagnosis.  At 57 I was devastated with the news.  I knew though that there were signs once I had an MRI and was told about the 100s of silent strokes my brain had had.  Here is what I did......to over come the over whelm. 

Sought out a psychologist, someone to talk to. Talked to my doc who changed prescribed Lexapro (for depression) and Buspirone (for anxiety) .  My word searching calmed down, my anxiety got back in the box and I was then able to research my options.  It took about 12 months after getting the word to get everything in order.  I cried myself to sleep so often.  I didn't and still don't want this ................but its the cards we've been dealt and we still have lots of living to do.  So step toward the fear and grieve ...  you have denial, anger, depression and hopefully acceptance to go through.  Getting to the acceptance part has been the hardest part of this.  One foot infront of the other...........you've got this. 

Smiles


Bestgrandma
Posted: Wednesday, February 27, 2019 8:15 AM
Joined: 2/26/2019
Posts: 16


Thanks for the response Smiles. It makes sense that I have to allow myself to grieve. I guess I have been fighting that instead of allowing my brain to do what it needs to do. My memory has been bad for several years but we had attested that to a overdose of medication several years ago. The diagnosis of dementia sent me reeling because of the unknown. I will continue to research and learn as much as I can.
Bestgrandma
Posted: Tuesday, March 5, 2019 4:51 AM
Joined: 2/26/2019
Posts: 16


I had convinced myself that I was doing well and embracing the diagnosis. That was until last week when I had horrific panic attacks 3 days in a row. Several days ago I fell into a deep depression. I have made a appointment with my psychologist today and I will be seeing my psychiatrist next week. I also have bipolar disorder so I will be asking my psychiatrist if a medication change is needed. I feel like I am really struggling right now. I have noticed a slight increase in my memory loss. I guess the reason I am posting this is to see if someone can tell me how they managed to overcome the depression.
Vik
Posted: Tuesday, March 5, 2019 9:59 AM
Joined: 2/26/2019
Posts: 172


Iris, i love your new philosophy about living your life!  Your writing inspired me to start writing down my own feelings.  Like you, i fell into a deep depression after my diagnosis, but fortunately my doctor told me that dementia in itself, causes  depression and suggested i get counselling. I also went on antidepressant that finally kicked in a couple weeks later.

I asked for a counselor that had lots of experience with people with dementia, and i got a GREAT one!  He has been encouraging me and has many words of wisdom. I take LOTS of notes at each session as i forget what he has said 5 min.later.  Its great to go bak thru my notes as it helps me move forward!  Perhaps his greatest advice has been that i am actually going thru the stages of GRIEF.  I went into denial rite after my diagnosis as i couldnt handle it. It was my way of coping until i could, little by little, face the truth.  

Then i went into the deep depression. My counselor listened to ALL my thoughts and feelings and said they wer ALL NORMAL and a natural part of the grieving process. He not only reinforced my feelings but said it was good to LET HEM OUT.  I iniatially kept them to myself without telling anyone as i thought it was a sign of weakness if i admitted to my family and friends that i was struggling with the "feelings" of dementia, let alone the actual manifestations of the disease. This was such a wrong thing to think!

I highly recommend that EVERYONE with dementia get some counselling to help process your feelings, and to hav a professional tell you that all these negative thoughts and feelings were ACTUALLY normal.  Ive found through the counselling that its easier to talk to my counselor than my family and friends. It lets me get out the emotion of my thoughts bfor i actually try to talk to those close to me! Again, another good reason to at least to try a session of counselling!  My Medicare pays for MOST of the session, and then my supplemental pays the rest, so it COSTS ME NOTHING to get the counselling! Perhaps in the future, Medicare will pay for all of counselling for people with dementia, and hopefully the doctors will see that counselling is SO HELPFUL to anyone with dementia, and automatically recommend to all their newly diagnosed patients!

If you are a caregiver, please suggest to your loved one that they get counselling!  They may be holding in some of their feelings to you and others. 

The other stages of grief that i hav gone through is anger and fear.  Both of those feelings hav been just as strong as the initial denial and sadness. My mind does go back to the other stages here and there but the counselling has helped me to recognize those thoughts and process them more quickly.

If any of you have any further questions about my process, please go ahead and ask as im a fairly open person. I had desperately looked for a dementia support group in my city soon after my diagnosis, but we didnt have one.  I was so.glad when i found out about this website and read through most of the postings of people with dememtia, as it further helped me to process my thoughts, but also helped me to NOT feel SO ALONE!  Even though my family and friends have been SO SUPPORTIVE, i was still feeling alone!  

Counselling also helped me to see some of the things i was expriencing were actually part of the dementia! So your sharing has HELPED ME face my own feelings and fears! PLEASE keep sharing as i hav so much to learn about this disease!  By the way, i hav moderate vascular dementia with one marker for Alzheimers, so that has not actually been diagnosed yet. 

My neurologist also recommended that i get NEURO-PSYCHOLOGICAL testing as a baseline for my dementia.  Again, my medicare and supplememtal paid for it all.  They will do the test every year to compare to the first test. Many people with dementia want to know how fast the disease progresses, and it is very difficult for the medical experts to say, as each person is so different! Plus, our symptoms wax and wane each day, week, and month. So this test is a major way for the doctors to monitor our dementia progress.  

Lastly, i think this forum is actually easier for me to let my feelings out than a support group where u are sitting face-to-face when you let out these deep, raw feelings.  Mayb as i progress through these postings, i will become strong enuff to face people when expressing my thoughts. So for now, i will continue my counselling and reading your postings. So KEEP WRITING and POSTING as i need to hear your thoughts and feelings to legitimize my own. Wishing you all the best in your journeys!  Reach out to others, keep reading these posts, and DONT keep thoughts inside to fester!  

Love to you all, Vickie

 


Vik
Posted: Tuesday, March 5, 2019 10:05 AM
Joined: 2/26/2019
Posts: 172


I especially like your words to take one step at a time as i wanted to learn EVERYTHING about dementia at once.  TOO MUCH information though!  I am now working through anger and acceptance. Youre correct that this step is very difficult! The anger and acceptance are kinda related and intertwined.

Iris L.
Posted: Tuesday, March 5, 2019 10:33 AM
Joined: 12/15/2011
Posts: 16143


Best Grandma, when I fell into a deep depression years ago, I gained a lot of support from reading posts of the members here.  In those days there were more postings.   I also read readings of people who had been diagnosed with a terminal illness, such as late stage cancer or ALS.  

I finally came to the conclusion that, if I did have dementia, I was not going out like a victim.  I would do whatever it took to fight for my life!  What did that mean?  That meant that I would make my life the way I wanted it to be, not what other people said it was going to be.  

By fighting for my life, this did not mean that I was expecting a cure.  I was expecting a better life.  I gave up listening to outsiders.  I realized I had to draw on my peers, who were other people in my situation.

 

I had to fight hard to put up boundaries around myself to defend myself from negative forces, which were all around me.  I had to work on being conscious about bringing in positive forces into my life.  I gained insight from a few people that I could look to as role models who had also fought deep depression.  I relied on prayer.  I had to cut negative people and negative situations out of my life.  It has not been easy.  Every day I work on defeating depression.  It does get easier.

 

Best Grandma, I encourage you to do whatever it will take for you to work on your depression.  Depression can be dealt with.  I wish the best for you!

 

Iris L.


Vik
Posted: Tuesday, March 5, 2019 10:43 AM
Joined: 2/26/2019
Posts: 172


HANG in THERE Best Grandma!  It is very difficult when first processing our diagnosis. I posted a lengthy writing a few minutes ago.  I have a friend who is a trained and registered laughter therapist. She kept encouraging me to at least start smiling. She said if i PRACTICED smiling, it would eventually become more automatic. It was very hard to start practicing, but then i REMEMBERD (LoL), that i used to smile ALOT bfor my diagnosis. I am happy to report that my smile is gradually appearimg automatically as im startimg to make jokes about my dementia.  It started by calling my forgetfulness when talking, "a dementia moment." Whenever i said the wrong word, couldnt come up with the next word, or completely forgot what i was even goimg to say, i would say outloud, " Dementia Moment." I found that the more i called these misspoken words for what they were, i actually slowly started laffing when i made mistakes.  Now i even say it for all my dementia boo-boos (another way to hav a little lightness through all this despair).  

Now ive even starting "joking" about my dementia when out in public.  If i forget somethimg in front of someone, i tell them i have dementia. I think it helps me to not feel stupid after a forgotten or mistaken thing. In this way, i am telling the person that "Im NOT STUPID, but have an actual excuse bcuz of dementia. 

Im not saying this has been easy to get to the point of joking about my dementia, as it hasnt been AT ALL. Its taken weeks or months to get to this point (*Does anyone else have trouble keeping track of time?).  BUT starting with the practice of smilimg helped me get the process going.  I finally feel like the DEEP, DARK CLOUD hanging heavily over my head and heart has finally lifted. I suspectbthat it will rear its ugly head again, but thats when im going to keep on reading ALL your posts, and keep writimg down my own thoughts and fears, and hopefully some laffs along the way. I REALLY LIKED the gal who chose the nickname of something like "Keep on Smilimg. 


Iris L.
Posted: Tuesday, March 5, 2019 11:21 AM
Joined: 12/15/2011
Posts: 16143


Bestgrandma wrote:
 That was until last week when I had horrific panic attacks 3 days in a row. 
 I have noticed a slight increase in my memory loss. 

 

Bestgrandma, there is a correlation between your panic attacks and your increase in memory loss.  I only learned that here.  One of our emeritus members, Alan in Colorado, who was himself a psychologist with dementia, warned us that stress and anxiety will reduce our cognition by half!  

This is so important for us to know.  We have to take whatever measures we can to ameliorate stress and anxiety.  This does not mean only drugs.  I myself used deep breathing as an anxiolytic method.  It worked.  I had great anxiety in the beginning.

 

Bestgrandma, you have to learn for yourself what methods will work for you, and then use them consistently.  Don't give up!

 

Iris

Vik
Posted: Tuesday, March 5, 2019 12:07 PM
Joined: 2/26/2019
Posts: 172


SMILES, I really enjoy your posts and LEARN ALOT from them, so please keep posting!
Iris L.
Posted: Tuesday, March 5, 2019 12:27 PM
Joined: 12/15/2011
Posts: 16143


Wow Vickie.  I'm glad you are having a good experience with your psychologist.  Your post brought up very bad memories for me.  I had the opposite experience.  While I was in my deep depression, I was consulting a psychologist who worked only with older adults from a senior mental health clinic.   She told me I could not have dementia because people with dementia are not aware of having it.  Obviously, from the members of this board, this is not true.  She refused to discuss it.  

 

Since having memory loss and dementia was the reason for my deep depression, I was stymied from getting any help from her.  In fact, she deepened my depression because she made me doubt myself.  I only began to come out of the deep depression when I took my own life into my own hands and discharged her.  

 

It was a scary time, but I realized from her and from reading other stories, that professionals are mostly clueless about what it means to have early dementia.  In fact, this terrible experience was instrumental in my coming up with the concept of Dementia Pioneer.  I realized that whatever I did for myself, I would be a Pioneer.  We are the first PWDs who are proactive in our own care.  

 

I will stop here because I have little good to say about psychologists and I am feeling angry.  Depression is anger turned inward, and I won't allow myself to fall into depression over these disturbing and distressful memories.

 

Iris L.


Vik
Posted: Tuesday, March 5, 2019 1:33 PM
Joined: 2/26/2019
Posts: 172


I am SO SORRY about ur horrible experience with a counselir! Mine encourages me EVERYTIME but helps me move forward with the truth.  Your counselor was TOTALLY WRONG about people with dementia knowing their symptoms.
Vik
Posted: Tuesday, March 5, 2019 1:36 PM
Joined: 2/26/2019
Posts: 172


My neurologist told mevl that its actually harder for us who are diagnosed early on becuz we ate aware of our symptoms. Ask ur neurologist about this.
Vik
Posted: Tuesday, March 5, 2019 1:48 PM
Joined: 2/26/2019
Posts: 172


Ifffffff you ever decide to try counselli.g again, you could ask ur neurologist if they know any good counselors who hav expereunce with early onset dementia. That term alone varifies that we can experience our symptoms AND remember them !!!!!
Smilesyourway
Posted: Wednesday, March 6, 2019 11:32 PM
Joined: 1/11/2019
Posts: 70


 

Hello Online Friends:

Some great sharing going on out here.  First, has anyone heard from Alz+ online?  Have been very concerned.   

I, like Vik have had a great experience with my psychologist.  There isn’t a support group locally for those with dementia, only for those that care giver.  My psychologist and I have tried to get one start here locally.  I adore her for helping me.  The XXXXXX XXX. initially sounded like they would partner with us, but that hasn’t worked out.  That’s an entirely different post.  None the less, being new diagnosed is devastating to say the least.  My testimony is that we can with all the right people helping, such as counselors and docs we can find a sense of peace.  I’m living better through chemistry.  The anxiety meds are wonderful because truly I was a MESS.   I’ve learned about meditation which I now listen to a guided mediation to get to sleep at night.  Insight Timer is a free app with thousands of mediations to pic from.  My favorite is called “Sweet Dreams Meditation” on the app.  My brain needs the distraction, otherwise I was dwelling on the disease and the future.  Try it, its free. 

I have a question, on your bad days, do you sometimes feel off balance, air headish sort of?  It’s hard to explain.  I had a day like that today.  Just goofy. 

Another outlet I’ve joined is Dementia Alliance International.  I have been assigned to a support group with others with dementia.  We meet online SKYPE once a week.  I just joined and was thrilled to meet everyone from across the country.  Check it out.  Great organization. 

Smiles

 


Vik
Posted: Thursday, March 7, 2019 6:57 PM
Joined: 2/26/2019
Posts: 172


Does anyone hav any "tricks" to help with dememtia?  I would b totally lost if i didnt hav my smart phone.  I not only use it to set alarms for me, but also use the calendar to help remember appointments. Perhaps one of the greatest tools for me on the cell phone is the NOTES. As soon as i get an idea about something, i make a note about it on my phone as the idea is.lost within seconds if i dont start making a note on the phone. I've even.been known to not remembwr the rest.of the thought before i finish the typing and get the idea completely written down. LoL.  So if anyone has any tips for all aspects of dememtia, i would appreciate hearing about them!  I just REMEMBERED something that has helped me sinc my fingers  and hands dont work that well.  I had an electrician (but can b done by non-electrician too), put in the FLAT light switches on the walls vs. the post kind of switch that is hardr to push up or down.  That has been SO MUCH EASIER for me to turn on or off the lites as i only hav to litely touch the surface. Even Walmart has them-- they cost $8/ea.
Vik
Posted: Thursday, March 7, 2019 7:14 PM
Joined: 2/26/2019
Posts: 172


Smiles, thanks for ur input on ur anxiety. Once i.got thru the shock of my dementia diagnosis, i became full of fear and anxiety, my counselor gave me a guided imagining relaxation  CD.  What i hav found is the best RELAXER for annxiety is therapeutic massage. I use to like deep tissue massage, but now i only get medium pressure massages. It not only relaxes me, it helps me to connect my brain and body. I always feel so relaxed and refreshed after therapeuti massage and recommens it to eberyome!  Just b sure to tell ur therapist anytime during the massage if u need less or more pressure!  If i could afford a masage every week, i would get them more frequently as they help me SO MUCH! Im goimg to ask my primary care physicia, neurologist, and counselor ifvthey would all write a Rx for massage so i can submit it to Medicare and my Supplemental sinc the massage helps relax me, connect my mind and body, and is VERY GOOD at gettimg rid of toxins in the body and brain! I read on Mayo Clinic website that dementia causes ALOT of toxins to build up in our brain, so anyway we can get rid of those toxins helps the brain cells and tissues!
Smilesyourway
Posted: Thursday, March 7, 2019 9:26 PM
Joined: 1/11/2019
Posts: 70


Hey Vik, yes I use notes on my phone and I use an app on my phone called Any.do.  It is a great little reminder app.   If someone calls it asks if you want a reminder to call them back.  At the end of each day it asks you about tasks you didn't get done and if you'd like to move them to another day.   I know EXACTLY what your saying about losing the thought b4 getting it written down.  Dang!  I do it all the time too. 

The massage gig sounds deliteful.  Anything that gets the body back to feeling as one entity.  I had my first one about a month ago and was wonderful.  The massage felt so good. 

I know there is a bunch of chatter about CBD oil.  I haven't went down that road yet.  I have started the KETO way of eating as it is supposed to be a brain enhancing diet. I'm only a week in thus far. 

I have vasular dementia from white matter disease, so my number one priority is to keep my BP low .  So far so good, its a must.  BP causes me silent strokes and silent strokes progress my disease.  Brain scans show in the moderate stage, although I feel I do good cognitively.    Keep pressing forward. 

Smiles


Vik
Posted: Thursday, March 7, 2019 9:47 PM
Joined: 2/26/2019
Posts: 172


Smiles, ony last message to you, i totally FORGOT the original reason i was writing to you:  have u tried any holistic things to help with your dementia--vitamins, supplements, etc.? My neurologist is from India and she recommended ginko. Hav u teied that?  Im taking a B-complex vitamin which seems to hav helped me but im open to amything including CBD oil. Im just afraid i would hallucinate or TOTALLY space out. Hav u read anything on.this forum or on ur video-conferencimg about CBD oil?
Smilesyourway
Posted: Thursday, March 7, 2019 11:41 PM
Joined: 1/11/2019
Posts: 70


I have read about CBD, you won't get googly, as it do not have THC which is what gets you high if you are a marijana user.  I'm hearing mixed about it, but some swear  it is helping them especially Alz folks.  Not heard anything for Vasular folks.  If you do get it, get it from a state that has legal marijana.  Like Washington or Colorado.  I have not tried ginko and have it on my list along with Bcomplex.  I need to get started on those.  I may snoop out the CBD soon as well.  I need to do a little more research. 

Enjoy the upcoming weekend. 

 

 


Bestgrandma
Posted: Friday, March 8, 2019 1:29 AM
Joined: 2/26/2019
Posts: 16


Smiles I can relate to the off balance feeling you get. When I get that I tell my husband I have brain fog. On those days I know it's best if I don't drive or make important decisions. I am going to check out the phone app you mentioned And.do for reminders.
Amongst other conditions I also have fibromyalgia. A good friend of mine gave me a tablet to take one day & it amazed me because within 20 minutes the pain was gone. The name of the medicine is Manitoba Harvest hemp oil capsules. They are 1000 mg tablets. I have been taking 1 each day for several months now and for the most part haven't had to take another pain pill since. Somedays I take a second capsule. The cbd capsule also helps with mild anxiety for me but on the days where I have severe anxiety I need a ativan. The cost of the capsules is much less expensive than the cbd oils and may not work for everyone. I buy them off of Amazon. My family doctor knows I use them. My therapist knows I do also but I haven't shared it with my psychiatrist yet. The psychiatrist I had when I initially started the hemp oil capsules was aware I was taking them and approved. I had to begin seeing a new psychiatrist because he retired suddenly for extreme medical issues. 

Vik
Posted: Friday, March 8, 2019 7:02 AM
Joined: 2/26/2019
Posts: 172


Best Grandma, i am so sorry you hav fibromyalgia!  I hav a friend that has it and suffers so much. Its bad enuff having dementia, but then u hav fibro on top of that. Oh my--how difficult your life must b.  Hang in there with EVERYTHING, and keep on posting!

 


Bestgrandma
Posted: Saturday, March 9, 2019 12:15 AM
Joined: 2/26/2019
Posts: 16


Thanks Vik. Before I tried the hemp oil capsules I was having to take pain meds many days in the week. Now that I take one of those daily my pain is manageable. On really bad days I take a second one. Because I have bipolar disorder I have confirmed these capsules won't have an adverse effect on my medication. 

 

Vik
Posted: Saturday, March 9, 2019 11:19 AM
Joined: 2/26/2019
Posts: 172


Smiles, hav u read the posts in "Clinical Trials?"  I just looked at that subject and am SO EXCITED!  I use to b a therapeutic massage therapist for 14 yrs. and was voted the best therapeutic massage in our county for many years.  In order to obtain my state license, i had to take extensive program.  Tben. in order to renew that license, i had to take many CEUs each year.

Since i love learning, i took many health-based classes!  Three  that i took were on Essential Oils. Ive always had super smell "talents" so i luvved those classes and i incorporated essential oils into my clinic.  So what a PLEASANT SURPRISE to find an article on Essential Oils for DEMENTIA!  I cant wait to try those oils recommended for our disease! Heres most important part of that post:     crap, i can't do a copy and paste in this program.  Lemon and Rosemary are recommended for daytine (they stimulate)  and lavendar and orange in the evenimg (relax and calm).

So u can read more about it in subject posts i talked about earlier if ur interested. Made my day tho and cant wait to try! I know its not a cure, but can mayb help in our daily struggles.

 

 


Vik
Posted: Saturday, March 9, 2019 2:18 PM
Joined: 2/26/2019
Posts: 172


SSmiles, a friend told me of a couple things on dementia and wondered if u knew anything about these:  

Mark Hyman, neurlogist--his website and Podcast called tje Broken Brain are suppose to b really Good!   Also hav u heard of Acuenergetics? I dont know anything about either but figure if a friend sent them to me its worth teading....


Smilesyourway
Posted: Sunday, March 10, 2019 10:59 PM
Joined: 1/11/2019
Posts: 70


Hey Vik I have tried to find the Broken Brain on line, but no successful thus far.  I did watch Teepa Snow called the changing brian on You Tube.  I'm going to copy the link and send to my family.  It helped me understand some of the changes we've experienced or will in the future. 

 I like you was  great typist.  THOSE days are GONE!  Holy heck, Im over corrections.  Sheesh! 

Does anybody have the following type of day:  Get up, feel as if it's going to be a normal day.  You go along and then mid day the tears come, the emotions are running free like a game of ring around the rosie going on around you?  Today was one of those days.  No reason, just emotional. 

Another thing I need to STOP doing is reading posts on MOST of the FB groups about dementia.  The are 95% caregiver posts voicing their frustrations and depression about their situation.  God how I wish I could be a caregiver again and not have this diagnoses that is slowly progressing. 

Enough,  chalked up to just a wierd day.

Smiles


Smilesyourway
Posted: Sunday, March 10, 2019 11:09 PM
Joined: 1/11/2019
Posts: 70


Best Grandma:

So sorry you have an added diagnosis of Fibromyalgia to manage and deal with.  Dang girl! 

 I have a friend that has had great success with CBD for inflamation of joints.  She like you reports that within 20 minutes she feels better.  I need to try it again, I just couldn't get past the tincture taste.  But I've heard that honey helps that.  I think it will be a great drug for some things.......just not sure about vasular dementia. 

I'm going to give the aromathery gig a shot and see if that helps, like Vik mentioned.  I've read tons of posts about the good it does for mood. 

Hope your doing well. 

Smiles

 


Vik
Posted: Monday, March 11, 2019 11:05 AM
Joined: 2/26/2019
Posts: 172


Smiles, sorry you had an emotional day. I have those alot but am excited to try upliftimg essential oils as ONE way to help with dememtia. My counselling has helped with tbe sadness as he said that i should not dwell in tje past OR future but, of course, thats very difficult for me.  

 Im workimg on my FEARS rite now.  And i agree with you about reading the depressimg posts in facebook bcuz most of them are caregivers venting their frustrations. Ive been reading ALL the posts on this site except for caregivers hoping to get lots of info on our disease.  One can even read OLD posts!  I figure its best to read posts from people that are experiencing dementia to help me deal with my curremt and future symptoms.

I actually hav been reading about Lewy Body dementia and think i hav that type bcuz i hav MANY of tbe same symptoms. So im going to ask my neurologist and coumsellor about it as the neuropsychology tests are suppose to also help with that diagnosis.

Even if i.hav that kind of diagnosis, the treatment is the same as other dementias except for the addition of another med.  I think ur like me in wantimg to get AS MUCH info about dementia that i can. My obsession with that is, i think, bcuz im afraid of whats to come in the future for us. So thats why im workimg with my counsellor NOW about my fears. He not only encourages me with soothing words, but also helps me to get out of the particular grief level im currently in.  Like i said bfor, i fall back to previous stages, but sinc ive already talked about those with him, its easier for me to work thru the feelings on my own. 

Ive also found that writing out my feelings helps me to "release" that intensity of raw feelings. Plus, i think it helps me not to feel so alone when i read about others feeli gs, so im going to keep postimg my feelings so that new people that join this site will hopefully find at least some understanding and comfort in reading my posts. So, keep on postimg Smiles!

P.S.  --- if you can find any type of humor (i googled "humor dementia" and fou d cartoons about dementia tbat helps me SOMETIMES to at least smile. For xample, when i type, sometime s a space appears in a word, and i smle bcuz it could b interpreted as an analogy to the "spaces" in my thnking. Get it?


Iris L.
Posted: Monday, March 11, 2019 11:35 PM
Joined: 12/15/2011
Posts: 16143


Vik, if you are experiencing fears, you might be interested in learning Alz+'s perspective.  She encourages looking at what you are fearful of, and examining it with interest.  Get to know it.  That way it doesn't have as much power.  Tomorrow I will search for one of her threads that exemplifies her perspective.

Also, there is a thread on this board called " To lift our spirits."  You might want to have a look.

 

Iris


Bestgrandma
Posted: Wednesday, March 13, 2019 10:19 PM
Joined: 2/26/2019
Posts: 16


Hi Smiles I am experiencing a couple days with an increase in pain from the fibromyalgia but I believe that's do to the changes in the weather. I am happy to say my depression has lifted for now. I am still feeling very anxious which I attest to the fear of the unknown. That's something I am working on with my therapist.
Smilesyourway
Posted: Wednesday, March 13, 2019 11:13 PM
Joined: 1/11/2019
Posts: 70


BestGrandma, that is wonderful news that you are having some brighter days pertaining to your diagnosis.  Yes, the fear of the unknow.  I with ya sis, the unknown is often on my mind.  For me being able to get outside and enjoy a little sunshine will be HUGE.  I'm over winter and the whole winter routine. 

Sad to hear about your Fibro acting up.  Great chatting as always. 


 
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