We're here for your support.
-
jason conrad jones
- 39, Male
- wolverhampton
- United Kingdom
- Share
- Share on Twitter
- Share on Facebook
- Blog Posts (3)
- Discussions (74)
- Events
- Photos (2)
- Photo Albums
- Videos
jason conrad jones's Discussions
empowerment tshirts
Started Mar 6
so so very very tired
Started Feb 12
Involuntary movements
Replied Feb 7
RSS
Loading feed
jay has his own site now called survivors of childhood cancer
Gifts Received
jason conrad jones has not received any gifts yet
Latest Activity
if your a very proud and independant enabled person there is a site that does very humourous but politically correct merchandise blunt but straight to the point the site is .nthheaven take a look you will have a giiggle i reccommend the pxxs on pity…
it was observed today that while i had my son i was seen getting weaker thr the session i then went shopping and when i got bk my wife said i was lazy coz i had 5 hrs sleep is there no-one that understands this disease other than suffers
I wonder where some law makers in the United States(or at least my state) get the idea that all disabled people have a medication that helps their condition. My food stamp case(welfare) worker said she did not believe I am disabled because I am not…
Are you saying the medications they give you can cause this paraneoplastic cerebellar degeneration? I'm assuming this results in Ataxia? Must look that one up when I get back from Inca's walk!
I had problems when some epilepsy meds interfered with…
If is frustrating to do the best I can to stay as healthy as I can and then if a medication or treatment seems to make me feel worse, oh well, I am just a patient and I am nothing compared to the doctors and medical people. Even if something is maki…
Is that Progressive Supranuclear Palsy ??
I went to the PSP seminar, last year
PSP
hi kati i do have involuntary jerky movements too i have been put on haliparodol which is used for mentally ill patients it controls some chemical in the brain it works fror me lynn says baclofen makes some fol;ks very floppy as all the muscles in t…
Comment Wall (28 comments)
- At 2:03am on February 28, 2010,
Bones said…
- Hey Jason I hope all is well with my friends over here. it's been awhile sense I last said hey so hey again! Hope it hasn't been to cold for you and that your health is going better.Give your family my love and have a great day and week bones jones
- At 10:13pm on November 26, 2009,
Bones said…
- Wow,what a beautiful baby.Congrads to Lynn and you.You did a good job.I hope all is well and hope you are looking forward to Xmas.Michael
- At 9:26pm on November 6, 2009,
Bones said…
- Hi jason and Lynn, Sorry for the Lisa I'm getting old what can I say. I'm just glad your OK. I hope your looking forward to christmas. I told you I was a drummer I posted some songs last night on showcase on page 4. I help write and played on them enjoy. Michael
- At 4:26pm on November 5, 2009,
Bones said…
- Hi Jason I hope all is well with you. I haven't heard from you in awhile and you are in my prayers everyday and Lisa too! Please get well soon and write me so I now you are OK! Get back when you can. Thanks for the gift!! May God look after you!!! Michael"Bones"Jones
- At 11:16pm on October 31, 2009,
Bones said…
- Sorry, to hear about your stroke. You know that's how I got Ataxia. It sucks you having so many problems at once. Believe me when I tell you I know how it is!! I just had a MRI weds. I'll get the results soon. But I also believe attitude will get go thru a lot.I finished my interferon treatments 2 weeks ago.I had to go 74 weeks on that stuff,it was awful. Glad that's over with!!! I hope with support from friends and Lisa you will have an easier time. Love and God Bless you and Lisa Michael
- At 4:34pm on October 24, 2009,
Bones said…
- Hi Jason,
Haven't heard from you for awhile I hope all is well with you!! I know you are going thru different things at once like me. Sometimes it feels hopeless and at other times we know we can get thru it.I will pray for you and hope you will have the power to get thru everything with everyones support.I have faith Jason and I believe we will all be saved in the end! I'm always around if you want to talk and i can talk about anything I have nothing to hide. I just care about people and especially people with Ataxia!! We need to stick together for support because most people don't know what it feels like or what it does to you.
I have to have another MRI of the brain next week.I got my Ataxia thru a stroke and the Doctors think I might of had another mini stroke we will see,I feel just OK.It seems my symptoms are advancing right along. Good news is after 74 weeks of interferon treatments for Hepatitis C has now been over for 2 weeks now. That was hell let me tell you no fun at all.I thought it would never end!! I'm still very anemic so I took a shot of Procrit today($400.00 a shot).It helps boast the cell count. They will monitor me for the next 4 months for blood count. Another good news is i work for a School District and they just put me on Catastrophic leave and put me on full pay and they O.K.'d it for a year and 3 months to start with. Way too cool I was going broke I haven't worked since June 2009. They had to put me on half pay for 3 months first than go thru all my vacation and sick time first after that the leave kicks in with full benefits. That's full optical,dental,and medical.It took awhile but I live alone and when something like this happens it taxes one finances for sure.I was really not knowing how things would turn out I just trusted that everything be OK (thank god for credit cards). What a blessing that at least I got some good news it seemed like the only luck I had was bad luck for the longest time or I didn't have any luck at all. It's nice to finally see it turn around but I tell you i was sweating it big time. This also gives me time to get full permeant disability going it takes about a year to get it taken care of here it a very slow process. My doctors told me I would never go back to work and that they would fill out the paper work with notes and documents. So now I start a new chapter in my life I feel like this is my start of truly healing and just taking care of myself now!! We will see what life throws our way next. Jason have a great day and week,your American friend Michael"Bones"Jones
- At 10:54am on October 19, 2009,
Carol Gow said… - Hello Jason
Nice to know you.I have posted some photographs, which I hope give a flavour of me. I am animal potty. That said I fully understand people who aren't. Just don't have them and hurt them.
Before CA I led a very active life, now other than my Charity work, which is demanding, I don't do very much. It is now a case of what I can do, rather than what I want to! Frustrating sometimes!! Never mind, it could be worse.
You must tell me about yourself. I think you have had a bad time lately and I am sorry.
Take care
Carol
- At 10:32pm on October 4, 2009,
Bones said…
- Hey Jay, Just wishing you well and that your feeling better.Michael
- At 2:34am on October 4, 2009,
Natasha Gochar said… - Thank you for the youtube idea. I think I've been engrossed with it for about 6 hrs. Yikes! So I guess thats what I really looked like before the walker. No wonder my Dad thought I was drunk all the time. Shame on him. I think we all have to be strong mentally and keep patiently pushig ourselves to get some coordination re-programmed in our heads. I'm just wondering, do you have pain? I do sometimes pretty bad but my pain pills help. Warm regards.........Tash
- At 3:07pm on September 29, 2009,
Bones said…
- Hi Jason,
Glad your out of the Hospital.I hate them for sure! Sorry your having such a hard time.I know how it feels your stomach feels like burning hot pokers going thru them!! Hopefully they helped you out and I'll pray for a fast recovery for you. Wouldn't it feel good just to be normal whatever that is for awhile!! I can't eat anything spicy now and I used to. I'm glad we can talk openly and I enjoy that contact.It feels good to talk with people going thru the say shit. Most people like you said don't understand anything what we are going thru.It makes it easier to do it here in this forum! At least here we DO UNDERSTAND AND CARE!!! Take care Jason and talk back at you soon!! Michael"Bones"Jones
Profile Information
- Are you a patient, relative, friend, or medical professsional?
- Patient
- What type of ataxia do you have?
- sca no?3
- When were you first diagnosed?
- January 30, 2007
- Have you been formally/medically tested for ataxia?
- Yes
- Is your ataxia progressive?
- Yes
- Is your ataxia hereditary?
- No
- If hereditary, do other members of your family have ataxia?
- No
- How has ataxia affected your quality of life and ability to work?
- signed off for life
- What affects your ataxia (food, stress, etc)?
- stress
- What other ataxia support groups do you belong to and would recommend?
- central ataxia ataxiauk
- How has your family responded to your ataxia?
- upset but accepted it
- What medication or treatments do you find helpful?
- pre gablin statins morphine
- Please share your story with the community...
- my sca was induced by cancer and treatment i currently volunteer for 1voice action for disabilities as a welfare rights officer and editor for the blog on our website
- Do you have a doctor or hospital you would like to recommend?
- west park neuro rehab hospital
jason conrad jones's Photos
Jason conrad jones's Blog
has
anyone heard of remap wolverhampton ss got them out to lynn when she was with child they do adaptations to cots and prams, there is also trhe dppi (disabled pregnancy international they do all knids oif publications from nappy changing to finding a adapted cot for yourself and baby
Posted on February 7, 2010 at 7:35am —
virtual ataxia
i have been on www.ataxiauk.org and on there you can join virtual ataxia which is a virtual chatroom well worth a look
Posted on October 11, 2009 at 1:52pm — 1 Comment
low moods
i feel helpless and worthless got people asking if they can do thi ngs for me its my central nervous system thats dyingf cant they get that thru their heads
Posted on September 19, 2009 at 10:20am — 2 Comments
About
© 2010 Created by Ben Munoz on Ning. Create a Ning Network!
