I have RP and cataracts and only have centreal vision left.I also have really

bad tunnel vision and feel of balence alot.I have a loving wife and children who

are always there for me yet sometimes i feel so alone.I think it is because as

much as they care and educate themselves on RP they truly dont understand the

mental torment of having your world closing in around you.I aslo have a hearing

loss  in each ear and really fear that i may have ushers.

Jim....



I am going through the same thing. Kinda feels like noboby understands. Ya it

sucks. Hang in there. S pend time with your kids, thats what I do, keeps me

going. What state are you in? I am in CT. Hang in there. There are a lot of good

people in this group who are going through the same thing and are more than

willing to listen.



Keep in touch



be well



Rob

----- Original Message -----

From: "jim james" <strykerjim41@...>

To: retinitispigmentosa@yahoogroups.com

Sent: Monday, July 6, 2009 4:54:48 AM GMT -05:00 US/Canada Eastern

Subject: [RetinitisPigmentosa] feeling alone

















I have RP and cataracts and only have centreal vision left.I also have really

bad tunnel vision and feel of balence alot.I have a loving wife and children who

are always there for me yet sometimes i feel so alone.I think it is because as

much as they care and educate themselves on RP they truly dont understand the

mental torment of having your world closing in around you.I aslo have a hearing

loss in each ear and really fear that i may have ushers.









[Non-text portions of this message have been removed]

--- In retinitispigmentosa@yahoogroups.com, rab5@... wrote:

>

>

> I have RP also.  I was diagnosed in 2007.  I seem to have more problems with

my right eye than the left.  I am having cataract surgery on that eye tomorrow.

I had three Kenalog injections in that eye in a period of 18 months and the

fluid came back after some time. The doctor seems to think the reason the

Kenalog injections didn't work well is bacause of the cataract.  Well, after

tomorrow we will see .  There is a chance the fluid will build up again and I

will have to have the Kenalog injections again.  I try to keep a positive

attitude but sometimes I do get depressed for a bit.  My vision is very

important to me as it is to everyone else.  You can buy teeth but you can't buy

your vision back.



  Everyone has a cross to bear in life and I guess this is mine.





>

> Jim....

>

> I am going through the same thing. Kinda feels like noboby understands. Ya it

sucks. Hang in there. S pend time with your kids, thats what I do, keeps me

going. What state are you in? I am in CT. Hang in there. There are a lot of good

people in this group who are going through the same thing and are more than

willing to listen.

>

> Keep in touch

>

> be well

>

> Rob

> ----- Original Message -----

> From: "jim james" <strykerjim41@...>

> To: retinitispigmentosa@yahoogroups.com

> Sent: Monday, July 6, 2009 4:54:48 AM GMT -05:00 US/Canada Eastern

> Subject: [RetinitisPigmentosa] feeling alone

>

>

>

>

>

>

>

>

> I have RP and cataracts and only have centreal vision left.I also have really

bad tunnel vision and feel of balence alot.I have a loving wife and children who

are always there for me yet sometimes i feel so alone.I think it is because as

much as they care and educate themselves on RP they truly dont understand the

mental torment of having your world closing in around you.I aslo have a hearing

loss in each ear and really fear that i may have ushers.

>

>

>

>

> [Non-text portions of this message have been removed]

>

It get lonely at times and that why group like these are great. I really like

Facebook.com to get the support through there. There are a lot of people out

there with RP. There is a RP social group on facebook that's been great.



Laura Lee Rough

Salt Lake City, Utah



----- Original Message -----

From: r_duos

To: retinitispigmentosa@yahoogroups.com

Sent: Mon, 6 Jul 2009 13:57:38 +0000 (UTC)

Subject: [RetinitisPigmentosa] Re: feeling alone

















































       --- In retinitispigmentosa@yahoogroups.com, rab5@... wrote:



>



>



> I have RP also.  I was diagnosed in 2007.  I seem to have more problems with

my right eye than the left.  I am having cataract surgery on that eye tomorrow.

I had three Kenalog injections in that eye in a period of 18 months and the

fluid came back after some time. The doctor seems to think the reason the

Kenalog injections didn't work well is bacause of the cataract.  Well, after

tomorrow we will see .  There is a chance the fluid will build up again and I

will have to have the Kenalog injections again.  I try to keep a positive

attitude but sometimes I do get depressed for a bit.  My vision is very

important to me as it is to everyone else.  You can buy teeth but you can't buy

your vision back.







Everyone has a cross to bear in life and I guess this is mine.







>



> Jim....



>



> I am going through the same thing. Kinda feels like noboby understands. Ya it

sucks. Hang in there. S pend time with your kids, thats what I do, keeps me

going. What state are you in? I am in CT. Hang in there. There are a lot of good

people in this group who are going through the same thing and are more than

willing to listen.



>



> Keep in touch



>



> be well



>



> Rob



> ----- Original Message -----



> From: "jim james"



> To: retinitispigmentosa@yahoogroups.com



> Sent: Monday, July 6, 2009 4:54:48 AM GMT -05:00 US/Canada Eastern



> Subject: [RetinitisPigmentosa] feeling alone



>



>



>



>



>



>



>



>



> I have RP and cataracts and only have centreal vision left.I also have really

bad tunnel vision and feel of balence alot.I have a loving wife and children who

are always there for me yet sometimes i feel so alone.I think it is because as

much as they care and educate themselves on RP they truly dont understand the

mental torment of having your world closing in around you.I aslo have a hearing

loss in each ear and really fear that i may have ushers.



>



>



>



>



> [Non-text portions of this message have been removed]



>

























































[Non-text portions of this message have been removed]

I understand what you're going through.  I'm hard of hearing myself  and

believe me it is harder for people who have RP and hearing lost than who has

RP alone.  I hate it because I can someone calling me and couldn't  find

them.  Very frustrating.  I've experienced the worst time of my  life.  I am

claustrophobic in closed space. I had anxiety and panic  attack.  This is

scary because I have tv in my room and watch tv at night  while my husband is

sleeping.  I started to panic because I couldn't see  anything on the side.  I

felt like I was in a rectangle box with a tv in  front of me and couldn't g

et out.  One time, coming home and it was getting  dark.  I started having

anxiety because I know it was getting dark.   For some reasons, this darkness

is starting to get me.  I always tell  myself I will be ok.  I know anxiety

play a big role in RP.   Sucks.



Tracy





In a message dated 7/6/2009 4:55:21 A.M. Eastern Daylight Time,

strykerjim41@... writes:











I have RP and cataracts and only have centreal vision left.I also have

really bad tunnel vision and feel of balence alot.I have a loving wife and

children who are always there for me yet sometimes i feel so alone.I think it

is because as much as they care and educate themselves on RP they truly dont

  understand the mental torment of having your world closing in around you.I

  aslo have a hearing loss in each ear and really fear that i may have

ushers.











**************Summer concert season is here! Find your favorite artists on

tour at TourTracker.com.

(http://www.tourtracker.com/?ncid=emlcntusmusi00000006)





[Non-text portions of this message have been removed]

Hi ! Jim James my name is Heidi I just turned fifty, I have rp and coate's

disease,rp in both eyes coate's in left, my left eye is totally blind,my right

eye has tunnel and if you tripple a piece of plastic wrap and put it over the

end of a empty paper towel roll thats what I have left, but I'm not giving up ,

I also have a very wonderful husband and my children 1 son ,2 daughters and

grandchildren are great,my 6 year old grandson has very bad eyes so we help each

other. I want you to know that I also feel that our family and friends have no

clue  how we sometimes feel and  our loss of being self suficient, and having to

rely on other people. I was a lab tech and had to quit working and driving in

2005. I miss it. The site center trained me on some things to make being a

homemaker easier. I did not like having the title of homemaker so I tell every

one I am a Domestic House Goddess ! I live in Ohio. Hope to here from you soon.

Good night.



--- On Mon, 7/6/09, jim james <strykerjim41@...> wrote:





From: jim james <strykerjim41@...>

Subject: [RetinitisPigmentosa] feeling alone

To: retinitispigmentosa@yahoogroups.com

Date: Monday, July 6, 2009, 4:54 AM

















I have RP and cataracts and only have centreal vision left.I also have really

bad tunnel vision and feel of balence alot.I have a loving wife and children who

are always there for me yet sometimes i feel so alone.I think it is because as

much as they care and educate themselves on RP they truly dont understand the

mental torment of having your world closing in around you.I aslo have a hearing

loss in each ear and really fear that i may have ushers.







































[Non-text portions of this message have been removed]

Heidi

I am 58 , only income to the family.While it is difficult for Family, co-workers

to understand the effect of RP, the hearing loss (and tinnitus + out of balance)

is additing to the isolation by 10 folds.

As I mentioned few years back on the RP site I really wonder which one is indeed

the worse one to have. Both are racing for the finish line: hearing & RP.

I too have the right eye working , left eye is pretty much dead except for color

because computer screen or book pages are definitively white. Yes I have a great

family but I have a tough time to participate (hearing). At work, it is tough.

Get in a conference room with 10 people, shut off the light and watch a computer

screen projector. More and more difficult to read that screen ( cataract surgery

did help me for 2 y) and the worse part is the fear of one top Manage asking the

wrong question: tough to see anybody's lips in the semi dark isn't it?

No cane yet. Tough to get in a manufacturing plant with a white cane don't you

think?

 

I do agree attitude is extremely important but it is a lot of "fresh paint" on

an old building. But t gets us on going. I have been one of these lucky guys

diagnosed late -43 y old- in life and while degrading month after month I was

able to raise 3 children, get then educated and have time to even scale down to

the country side. I pray for those more in needs I have seen over the years .

Younger generations affected by RP. John. 

 

































[Non-text portions of this message have been removed]

Good Grief, Jean - I hope you at least have a sighted guide walking around in a

manufacturing plant.  It sounds extremely dangerous without, at least,

something.



RPGypsy



--- In retinitispigmentosa@yahoogroups.com, Jean-Louis Pretot <jlpretot@...>

wrote:

>



> No cane yet. Tough to get in a manufacturing plant with a white cane don't you

think?

>  

HI,,



   One day at a time,enjoy everything that you can, and have patience with the

people who care and mean well but really can't understand.



   Before my vision got as bad, my sisters was bad, I understand now that as much

as I tried to understand, I couldn't fully understand, so I try to overlook some

of the goofs, that friends and family make.



    Hope,, and we all still have hope, there are great gains being made in the

gene reseach and in stem cell research. I truly believe that a breakthrough may

be coming soon. Good luck,, Dorothy