View unanswered posts | View active topics It is currently Fri Nov 28, 2014 4:38 am



Reply to topic  [ 15 posts ] 
 My questions and update….LBDA org helping early onset? 
Author Message

Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post My questions and update….LBDA org helping early onset?
April 13, I got provigil generic a couple of days ago….
last month was $200……this month $10………..yipee

_________________
Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Last edited by BayouCajun on Thu May 17, 2012 4:24 pm, edited 4 times in total.



Fri Apr 13, 2012 9:14 am
Profile

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: My questions and update….provigil generic now
What good news! It's been such an expensive drug.

I hear that the manufacturer is really pushing Nuvigil but is there any improvement over Provigil?


Fri Apr 13, 2012 10:51 am
Profile

Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: My questions and update….provigil generic now
I will answer by PM.

…..

Robin,

That is not me. That is not how I would have it. But, I will only be able to answer questions by PM. Which I will do with gusto.
I realize that no matter how I answer a question like that in this caregivers forum, it will have consequences.
It will possibly help some.
It will possibly hurt some.
It will possibly provoke some.
It will possibly mean nothing to some.
It will possibly mean who know what to some.

I will one time only on this thread answer a question form someone else to illustrate.

Example answer and problematic points, only:
I took Provigil for about a year, with great success, as it allowed me to continue working for an additional year of my life. It allowed me to be a productive citizen, to appear as almost normal, and escape the eventual isolation of my disease. I accomplished this by taking my Provigil tablet and cutting it in half and taking one before breakfast, followed by another about 1:30 to 2:00 pm every work day….then I allowed myself to sleep all weekend if I felt I needed to.
Then I was switched to Nuvigil, this was a ploy by the Pharma Co. and the Insurance Company, both with different agendas, both profit driven, not patient driven.

I concurrently developed a 'rash' (turned out to be fungus) at the same time as the drug change, which unfortunately also resulted in my end of my working life.
Nuvigil positive effects only lasted till about 1:30 to 2:00pm each work day.
This resulted in many problems at work, resulting in my working life ending in a matter of a couple of months.
The 'rash' resulted in my not taking either drug for about a year.
As it turns out the 'rash' was not a rash as diagnosed by a local dermatologist, but was a fungus (yuk)…caused by my hyperhydrossis (double yuk).

So, after many correct things happening upon my first visit to Mayo Clinic, I returned to Provigil, where I still am, under the influence of a 'life' saver for me.
I still cut the pills to 'use' the effect to its maximum potential, to my maximum need.

In as far as a reccomendation to those who would want one, based on my experiences with both drugs, I would say:

If you need for yourself or someone else taking the drug to have better awakeness and enhancement of senses for about six hours in a tapered dose and effect, then take Nuvigil.

If you need for yourself or someone else taking the drug to have a better awakeness and enhancement of senses for about 4 hours in steady dose and effect, then take Provigil.

My reasoning is to go for the effect when I need it and be sure to get it delivered as expected.
…….

Now, that was an example of the PM I would have sent to Robin, since she sent me a question on this caregiver forum.

…..
Now for the problematic areas….

Some might read that answer from a patient and find a answer they need and it works.
Some might read that answer from a patient and find an answer they try and it doesn't work.
Some might be offended that a patient gives any answer.
Some might chose to ignore anything by a patient.
Some might help the patient fight isolation by engaging in conversation, while ignoring anything of any potential value and redirecting the patient into less problematic situations.
…..

So, that is the last answer or example of what an answer might look like.
If you have a question of me.
You can post it on the forum or PM me.
I will only answer the question by PM.

A thought, why not post the question? Instead of just a PM?
If you do, then if someone else wants to know my answer or thought on it, for whatever reason, they can PM me for the answer also.

Thanks for understanding, so, I will no longer be provoking any caregivers, to my knowledge, if I missed something here, be sure to point it out to me, by PM of course.

…..
So, what is this thread for?

It is for 'MY' questions of you caregivers who will willingly, share with me.
I believe the same conditions apply to me, about posting your answer 'to my questions only' on the forum here, or using PM.
Of course any response by me, to your answer, will have to be by PM.

……
Also, I will post general updates….similar to the Provigil going generic….
because that is SO important to everyone….
Personal updates will be in a generalized format….to not provoke anyone
Anyone wanting to know more personal aspects of it, by all means PM me.

…..

Please if you find any problem with this, keep it to yourself, or PM someone.
I am a patient with a Neurodegenerative Disease, I have enough problems already, I do not choose to cause you any or to engage in any you feel you must have.

I am searching for answers, and looking to connect with those who are also looking and willing to share and care.

Thanks for your understanding.
And thanks for your help.

_________________
Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Sat Apr 14, 2012 3:32 pm
Profile

Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: My questions and update….Reduction of Stress and RBD, Sl
Update:

Reduction of Stress and its effect on my RBD, my quality of sleep, my symptom presentations…my pain….my quality of life…

I have had a life changing amount of stress removed in the last week.

It didn't occur overnight, it wasn't just one step. It didn't come without setbacks….(there was a MAJOR setback just a couple of weeks ago….real Major….bad….with a Capital B)

…….

But, here is the good news…of which there is such little…..sometimes….

The past week, I have had only a couple of minor RBD episodes that were noticeable to either myself or my wife.

My wife has rejoined me on a test basis in our bed, to actually enjoy the warmth and companionship of a spouse being near throughout the whole night.

We did not get there through the actions of just either of us, but with a joint effort from two different directions…..we both have had and have ongoing medical, pharma, and counseling help…..

Needless to say….my quality of life has improved, she says her quality of life has improved….as this has not previously been the case, as I describe it currently, for the past four years, we have lived separate stress filled lives in the same space.

RBD was the easy excuse, four years ago….to start in that direction…(RBD is LBD….yeah it is)

……

Unfortunately stress is only increased in the early stages of this disease. How could it be otherwise? No one understands what is happening, and what is happening can be described away as so many other things, usually things that have nothing to do with the actual disease, and any attempt to fix……by attacking these phantoms that don't exist, only make things worse…..thereby increasing everyones stress levels….soon an ever increasing in speed downward spiral is achieved that is hard to get out of….it is usually just easier for everyone to ride it down, and get it over with, or to leave those who can't get out….in the spiral….with no help….

remember…..anything I say….is for my benefit only…..take what you can use….and leave the rest……

I believe, we are scratching the surface of what can be done, if we can:
First….identify LBD earlier…..
Second…..achieve better understanding, education, and outreach to the people whose lives touch those with LBD….
Third……achieve earlier interventions in quality of life issues…..


We must not lump everyone in the same pile of stuff…..

There is a hesitancy to 'stage' this disease…..

Shame on the establishment or anyone who subscribes to this philosophy……

I am not 'end stage' in any way, shape, or form…..
and to treat me as such is to be a criminal……yes…..criminal behavior…..but, unfortunately for me….perfectly acceptable, legitimate, documented (even here on LBDA.org website….not speaking of the forum in this statement)……

Stop this nonsense now!…….okay…..everything is okay…..I understand why it happened this way….but, it is now time to change things…..just because something is a certain way, it doesn't have to stay that way…..

I would never have thought I would have the chance to again, spend seven nights in a row, sleeping with my wife, without injuring her again from RBD….or a week without a stressful situation not easily or quickly diffused….

_________________
Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Wed Apr 25, 2012 11:04 am
Profile

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: My questions and update….Reduction of Stress, RBD, Sleep
What good news, Craig. Good for you both!


Wed Apr 25, 2012 12:32 pm
Profile

Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: My questions and update….Reduction of Stress, RBD, Sleep
Thrilled to hear your good news - way to go!
Ger x

_________________
cared for Dad who passed away on January 28th 2013 R.I.P.


Wed Apr 25, 2012 3:02 pm
Profile

Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: My questions and update….Auditory Halluncinations or ?
Comment on post about auditory hallucinations….just some thoughts now….

I have tinnitus….really bad….I worked on the flightline with large jet engines on fighter jets back when noise levels were not a consideration on the general public, much less the support crews for weapons delivery systems made to win wars.

But, yet I hear well? Well sometimes…..

So, stay with me…..

Sounds like a contradiction? doesn't it?

Too many sounds at once also cause me overloading….and at that time nothing sounds like anything…..except there is a agitation rise and visible to you behavior to cease and desist with all forms of noise.

So….what about subtle noise…..things?

It brings to mind…..what is happening with me with subtle visual things….right now….for me…..

In low light…..and first waking moments…..my visual interpretation of things……subtle things……is suspect……I mentioned this in detail in another thread…..it follows Dr. Boeve explanation of someone mistaking a chair for a giraffee………

I wonder……if some of what might be judged as auditory hallucinations…..are actually parrallel auditory situations to the visual chair and giraffe?

And then….also, allow for real auditory hallucinations…..

so….my guess…..processing errors on the brains part……the brain trying to fill in the blanks….and not getting it right…..

Just some thoughts today……

Take what you can use…..and please leave the rest…..

_________________
Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Fri May 04, 2012 3:35 pm
Profile

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: My questions and update….Comment on auditory hallucinati
Visual misinterpretation can account for some but not all 'hallucinations' and it makes sense that auditory misidentification could account for some presumed hallucinations. My husband sees things--and people--where there is nothing at all. He used to describe them in great detail but is less able to do that now even though he still sees them.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Fri May 04, 2012 4:18 pm
Profile

Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: My questions and update….Comment on auditory hallucinati
Pat,
The visual halucinations that might happen in my future…are a fear…hopefully….way in the future….

The Danby, 18 inch dishwasher, and the Kenmore 110v dryer, and kitchen island…..I sure hope aren't halucinations…..QOL enhancements….

and another QOL enhancement is a wife with a new outlook on life….

_________________
Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Mon May 07, 2012 10:44 am
Profile

Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: My questions and update….Insurance dilemma, cbr disblty
So here goes…..

I had a thread on my financial, legal journey that was a place I could ask questions, and leave breadcrumbs for those who come after me….
But, alas, that is not allowed anymore….not there…on a place with the name of the disease that I wear….

So…..

My 18 months of Cobra coverage is ending on June 23, 2012….soon…
I was denied a disability extension by the third party admnistrator of the cobra program for my former employer (after all, that is their only purpose)….

Seems I didn't get the Social Security Award of Disablity to the Cobra Admininstrator in 60 days after I recieved it…..
Everything else is in order…..

At the the time that I would have had to get that paperwork to them….I was….
Sick…Cognitively Impaired….Depressed…..Fighting a Plot to separate my sick wife from me,from a so called church group, while she was clinging to me like a vine….
all the while she was deceiving her family of what was really happening on all fronts...
Trying to short sell a house to protect my wife's credit, and prevent her having to file a BK,
trying to single handedly have garage sales to finance trips to mayo…
trying to separate, and either sell, or store the treasures of a well lived life for me while impaired….
and doing the same with my wife's possessions….while she was unable to help in any meaniful way…..more in the way….

right smack in the middle of this period that I could have sent this in….
I attended the 'Habit' program at Mayo with my oldest Daughter….

and was proclaimed…most evil man by at least 90% of the known world….
I also found out who my friends were….at this time….maybe that is worth more than health insurance….

so, once again, I am a throwaway…..no, I am not delusional, and no, I am not the only one…..

So?
What are my options?
Beg? that is going to be the first step….
Pressure? Congressional….emotional…..maybe tag onto Pat Summitt's ride here in Knoxville…..in the press….

First, I am going to call the former company and explain what happened….
I went to the cobra.gov website and read the rules…..
the timeframes are to give the company the minimum that they MUST comply with, it also states that they can extend coverage further and outside of the limits if they choose to…..(we will soon see)….

If this doesn't work….
then, high risk pool?
or no insurance for over a year…..

Any ideas?

_________________
Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Mon May 07, 2012 11:04 am
Profile

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: My questions and update….Question Cobra Disblty Extsn De
Craig, I think my husband's hallucinations are partly caused by his high doses of Sinemet but, as I have posted before, without this level he would be unable to swallow, would be drooling constantly and what little mobility he has [upper body] would be gone. There is always a trade-off, alas. :cry: Hope you will be spared.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Mon May 07, 2012 11:35 am
Profile

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: My questions and update….Question Cobra Disblty Extsn De
Sorry, Craig. It's tough when we make the "sick" person do all the fighting... I hope the administrator will change his/her mind.


Mon May 07, 2012 10:32 pm
Profile

Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: My questions and update….LBDA org helping early onset?
She had been here but she said reading so much about later stages was overwhelming and she just wasn't ready for that yet. I understand that feeling perfectly!

I agree, Jeanne. That is why I can't post here anymore, it is a shame.
Please see post in off topic area, as I don't want to offend those who want to keep things this way.

I copied this from the 'real' section of the forum…..

When is LBDA going to become anything that supports early onset patients and caregivers?
Or even early onset patients who are still struggling in managing their own lives? Maybe even without a caregiver?

Not just addressing the forum here…..but LBDA the organization as a whole…..I have contacted the organization multiple times last year….it seems they are just about raising money….this is the same complaint that occurs in other groups that start out with good intentions…..like MS….and others…..

what are you…..LBDA doing for 'ME'?…..yes me……I have the disease and I am struggling to exist and manage…..I am not ready to be chemically or physically restrained or need hospice yet….

I am sincerely asking what are you as an organization doing to address my needs? except to isolate me and tell me to wait until I am late stage?

Who wants to have this discussion? I think the time has come.

_________________
Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Thu May 17, 2012 4:23 pm
Profile

Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: My questions and update….LBDA org helping early onset?
Craig, what about Medicaid?

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Mon May 21, 2012 10:24 pm
Profile

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: My questions and update….LBDA org helping early onset?
JeanneG wrote:
Craig, what about Medicaid?


Jeannie,
Just wanted you to know that Craig will not be posting for a while, his posts were getting too confusing and beligerent, I have had many complaints from forum members and I tried on many occasions to help cool him down but it just didn't work so I thought it best to remove him for a time , I am sorry he has so much to go through but I also have to think of everyone as a member and it really is a forum for caregivers!

Take care !

_________________
Irene Selak


Tue May 22, 2012 9:37 pm
Profile WWW
Display posts from previous:  Sort by  
Reply to topic   [ 15 posts ] 

You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot post attachments in this forum

Search for:
Jump to:  
Powered by phpBB © 2000, 2002, 2005, 2007 phpBB Group.
Designed by STSoftware for PTF.
Localized by Maël Soucaze © 2010 phpBB.fr