huntingdons disease

Replies

By EL

Re: huntingdons disease
Sat 12 Apr 2008 10:40

Hi doug im sorry i have no info for you, i have heard of huntingdons disease but dont know what it is or how it affects people. I would like to know though if you can tell us, my sister is a comunity carer and cares for people with all manor of disabilities, and she said she would like to know what care is exactly involved with Huntingdons. So if you could share your knowledge.... xx

By doug

Re: huntingdons disease
Sat 12 Apr 2008 11:27

hi EL she has a lot of diorreah involentary movements her short term memory is not so hot
long term is very good seemingly thats part of
huntingdons oh! and weight loss she lost 2stone in
october i have had to by her new clothes to fit her
noreen was a size 14 now she is a size 10 12!! so
we are waiting for results which will take a while
juat to let you know she has mutiple illness as well
she has systemic lupus erythematosus
[ sle] thats full blown type with antiphosphilipid syndrome she had a accident which landed her in
a wheel chair now she has osteo arthritis on the spine she also has an ileostomy for peritonitis
heart problems and a superpubic tube in her abdomen for incontinence now maybe her epilepsy
is comming back
the lupus can hide quite alot it sometimes mimmicks
certain things they have to be sure before they
can treat her so everythig is on going as you can see i only put that down so your sister can have a
look sometimes its like looking after individual
people if you know what i mean

By EL

Re: huntingdons disease
Sat 12 Apr 2008 12:25

Good god Doug, how do you stay sane? do you get any help or respite at all ? Its plain for all to see just how much you adore your wife and what a fantastic job your doing with the care you give her. Does Huntingdons affect your wifes ability to communicate? i ask this cause you said her long term memory is very good. I know my situation is so very different from yours as i care for my son 13 who has Aspergers and also my husband 44 who has just started the diagnosis procedure for Aspergers himself having fallen through 'the net' all his life. My point is im always being told by my sons psych that for me to understand what my son goes through i have to put myself in his shoes, as much as i try i dont know how to do that. I listen to my husband and how he feels in certain situations, that a "normal" person would take in there stride, So am genuinely interested how your wife feels, does she have a close friend she can 'put the world to rights' with? Does she ever say things like leave me and find someone whos not a burden? i ask this cause it seems to be something a caree often says, my sister told me this, and also said she has acted as marriage guidance numerous times in her job.
I do hope i havn't got a bit too personal Doug and please dont take offence at anything i have said.
Your more than welcome to tell me to mind my own but i want you to know that my sister and i are greatful for the info you have given us so far. You've educated two 44ish people today cheers

By doug

Re: huntingdons disease
Sat 12 Apr 2008 15:38

hi EL no your not being to personal and no offence
taken no close friends or family they all seem to be
scared off by the illness of course some people do
offer help such as if you ever need anything just give
us a call blah blah yes right!!!! yes she does tell me
i should look for someone else but i dont listen to
her we dont get any respite they keep telling us
if we want it we have to find most of the cost ourselves they havent got th resourses ha
i keep my self sane by thinking of how she was
when we first got married 33 years ago the first 18
years were brilliant then she got ill and it hurt to
see a bright and bubbly person change dramaticly
i also have my garden with 2 green houses to keep
me sane you can relax out there im also a radio
amateur NOT CB i can talk to people all over the world and other things you have to be licenced
in other words you have to sit exams for amateur radio ive had care but its been a bad eperience
they have offered to put her into care over my dead body they will as long as im breathing they have no
chance and yes i love her very much and we are still in love she is not that old she is only 54 years young
but it hurts to see her go like that sometimes i cry
not for me but for her what she has gone through
i wish i could take the pain away but thats sod law
she does have tantrums now and again like throwing
things at me ive had drinks food nothing to do with my cooking and alsorts thrown at me but i
put that down to frustration
but i handle it as best i can

By EL

Re: huntingdons disease
Sat 12 Apr 2008 20:50

You truly are a wonderful man im glad you two found each other. Why oh why do the authorities automatically assume that being put into care is the answer to everything? Sometimes all you want is an hour to yourself to have a good cry and get it out of your system, then brush yourself down and get ready to take on the world again. Let us know the results wont you? And thank you for your honesty. A big hug and kiss to you both.

By doug

Re: huntingdons disease
Sat 12 Apr 2008 22:27

thanks EL but im not that special i do it out of love for her ive got alot of respect for her aswell she is still my best friend i have a lot of repect for
all the guys girls on here and else where for what
they are doing for there loved ones its great to come
on here and be able to share problems and
be able to help and laugh at the same time
i will let you know what happens i dont know when
that will be it could take awhile

By EL

Re: huntingdons disease
Sun 13 Apr 2008 10:10

Hi Doug, just to let you know my daughters friend (shes adopted us!) and i researched all the things you said your wife has. We were stunned to see just how much she is suffering bless her, and no wonder you said its like caring for different people all at the same time. Im not surprised you cry for her rather than your self, i think its bloody incredible how people close to her have basically turned there backs on her. You both sound like the kind of people anyone would be privileged to call friends, and if you lived in Milton Keynes i would be round yours in a flash suppin tea with you both If its ok with you i would love to write to your wife now and then . You can get my details from this sites moderators if you wish if not, thats fine, i will just check in with you now and then to see how she is. Take Care

By doug

Re: huntingdons disease
Sun 13 Apr 2008 10:28

morning EL i think she would like that
how do i get your information from moderators forgot to tell you she also has no spleen
she got it removed for cancer in 1986 i think thats
what triggerd every thing off.how are you and yours
doing today?

By EL

Re: huntingdons disease
Sun 13 Apr 2008 10:46

Hello you can you meet me on live chat?

By doug

Re: huntingdons disease
Sun 13 Apr 2008 10:51

ok what time ive got to go to shops
about12?