| Author | Subject: Rehabilitation Program |
| Miles Dixon | Posted At 07:17:28 03/10/2002 Does anyone know of a REAL rehabilitation program for dialysis patients in a real place with real people in the New York City area. It's horrible that people who are not on dialysis can have fitness programs custom tailored for them. But all we get are brochures, and we are supposed to be so 'happy' with this. Well I'm not. I been on dialysis for 6 years and all I get is a brochure. I'm also very seriously considering ending dialysis. It seems to me that no life on dialysis is worth living. |
| David Axtmann | Re: Rehabilitation Program (Currently 0 replies) Posted At 15:56:59 03/10/2002 Hi Miles Congratulations on making 6 years on dialysis. I am an old timer of 33+ years on the machine, or the æmonsterī as I call it at times. It is not a life we would have chosen, but a life we can work with. I am not familiar with your area so don°t know if I can help much. Have you contacted the National Kidney Foundation people in your area? Maybe you have and that is why you have a lot of brochures. The next thing I would recommend is talking to someone at your unit, a social worker or even some of the nurses. If there is no therapy program maybe they could help you getting something initiated. We have a therapy unit here that meets once a month. A social worker and a nurse set it up. They depend on the patients for subjects. Then they bring in different speakers to enlighten us. It is difficult to get people to attend. I think that most people want to forget about dialysis as much as possible rather than going to a meeting to talk about it. Some units I have visited have exercise bikes that can be used on dialysis. I think they are not only good for the body physically, but also improve dialysis over all. I don°t know if that is proven yet but I believe in it. Another thing we tried here, with little success, was to get patients to think of things they could do on dialysis. We called it æfun on the runī. I hate to waste 4 hours watching soaps. I have used audio books to pass much of my time. I like to keep the brain working as much as possible. Personally, I find the more I do the better I feel. For us, dealing with poor health, it requires an extra push, as you well know. But if I push myself I feel better, breath better and definitely sleep better. Say I hope this isn°t sounding like another brochure. I would be glad to talk to you more if you would like. You can email me at axhandle42@hotmail.com. Let me know how you come out. You may have to be the initiator of a therapy program. Good luck and don°t give up. David |
| Tony crowder | Re: Rehabilitation Program (Currently 0 replies) Posted At 12:21:48 03/12/2002 Hey guy i know just what u are going thru,Ive had about the same success with the brocures here in Virginia,althought I have apply for a vocational program that has yet 2 respond fully on helping me with rehablitation and a program they did respond and said they had 8 persons in the state of virginia trying 2 handle all patients with the same request and having 2 answer every one has become a major task but they would soon ge in touch with me. There is a section on this site where u can request a recorded tape of patients on dialysis talking about there personel experences,and also a video on excercise and health remidies i just recieved yesterday which i order free about a week ago havent had the chance 2 look at it yet but maybe this will help. Look I its ruff 2 deal with all the emotions and disbelief that is happening 2 u know,but u have 2 hang in there,u have 2 be strong,and tell your self this is what I have 2 do 2 survive. You must forget about the question why me,why is this happpening 2 me.I has happened its not going 2 change and 2 move on with your life u have 2 except that first.I know this may sound cruel but ist the only way u are going 2 feel better about the situation.Look is not that bad i tell my self all the time i know longer have 2 get up and go to work that is a plus.Althought dont get me wrong i do miss the working world i was a former accountant making pretty good Money know i draw social security not much but iam making it.U do know that u automatically qualify for SS and disablilty which helps a lot.I also just recently join the YMCA and am working out on a regular bases,on my good days of course and it has helped alot.Also the gentleman that responded 2 your question David i think is right ,u need 2 talk 2 your unit social worker and nurses they have alot of information that is suppose 2 be available 2 u especially the rehabilitaion program,If i can be of any further assistance please feel free 2 contac me at my e -mail bdwoof@aol.com im 32 years old and feeling the same so good luck and dont give up.sincerly Tony in richmond va, |
| Beth Witten | Re: Rehabilitation Program (Currently 0 replies) Posted At 15:39:00 03/18/2002 Hi Miles, I am a renal social worker by background and have talked with hundreds of patients and professionals over the last 3 years that I staffed the Life Options Rehabilitation Resource Center. Now I'm offering technical assistance to clinics to help them evaluate what they're already doing and to learn ways to do more with rehabilitation. One thing that I've learned is that clinic personnel are more likely to offer programs if patients ask for them. There may be a (mis)perception in your dialysis clinic that patients are not interested in or motivated to do more with rehabilitation. To change this perception, ask the staff if you (or they) can survey patients to find out whether they might be interested in getting more information about topics like Encouragement, Education, Exercise, Employment or Evaluation. To assess what rehab activities are underway in your clinic, you or staff at your clinic can use our Unit Self-Assessment Tool (in the Unit Self-Assessment Manual under "print materials"). Also, you might want to review our Patient Interest Checklists posted under "print materials" and "Teaching Tools." This provides patients questions to ask the staff about clinical and rehabilitation topics. In the past, I heard from personnel in several NYC clinics that reportedly had rehabilitation activities when they contacted Life Options. Activities included exercise programs, support groups, educational activities, referral to Vocational Rehabilitation, and evaluating outcomes. These facilities included DaVita-Rogosin, City Dialysis, Harlem Dialysis, NY Presbyterian Hospital Dialysis, and Renal Research Institute at Beth Israel and Yorkville. Other facilities may be offering rehab interventions without classifying these activities as "rehab." Studies have shown that how well someone's physical and mental health functioning is affects hospitalizations and even survival. Therefore, it is essential that patients do what they can to improve their functioning through whatever means possible. If your clinic is not able to do anything, ask your doctor or healthcare team for one or more referrals to agencies that can. Good luck! |