Guest guest Posted August 14, 2003 Report Share Posted August 14, 2003 hello amanda, i`m patie, 23, from poland and i have sma II. i`ve just finished my university studies, now i`m master in philosophie. i don`t have any bro or sis. but i have a dog, turtels and aquarium. please e-mail me on patie@... patie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2004 Report Share Posted November 5, 2004 Welcome, . You are among friends and those who do understand. It is terrible to have to face the amount of pain you are experiencing at such a young age, but then the spondyloarthropathy diseases do not seem to respect any age. Many of us have had our most handicapped times in the middle of our twenties or early thirties. Some of us have experienced the pain and other symptoms since childhood. Persue with your doctors the medication possibilities. Those of us with IBS or chrons do have experience with the problems of taking NSAIDs and trying to maintain intestinal symptoms at the lowest point possible. For some of us, like you, we have had to turn away from most NSAIDs and seek other therapies. With many new medications coming down the development pipelines we can all only pray and hope that some of these will offer us an end to our pain and agony. I wish I could tell you that everything will get better, but each person's experience with these diseases is different. There is hope in statistics which say that many will experience major flareups at first and will later have few problems. However, many of us on this support list have continued to have problems for many years, with varying levels of inflammation and pain as flareups are followed by remission-like periods of time which are often followed by unpredictable additional flareups. I have experienced flareups that lasted a few weeks or months, and flareups that have lasted for years. Yes, the disease can handicap you with pain and fatigue and make the necessity of a wheelchair for some activities required. I would encourage you, however, to not use the wheelchair whenever possible. Overuse of the wheelchair can lead to atrophy of muscles and weakness that might have been prevented if you 'forced' yourself to walk, even if difficult. I have had times in my experience when I could not go on family outings or enjoy such outings due to the difficulties of walking on painful feet and legs, hip and SI joints. Most of us have found that using the affected joints or muscles seems to reduce the amount of pain, especially for those with Reactive Arthritis (formerly called Reiters Syndrome). This is another reason for continuing to use the affected joints and limbs. I would encourage you to follow a careful diet regimine that eliminates problem foods and any foods to which you might have allergies. Your doctor can tell you more about an elimination diet to figure out which foods you should stay away from. I have done this and am amazed at the improvement in my intestinal problems. I nibbled on some home-made fudge a friend brought over yesterday and discovered I should have asked what was in the fudge first for it caused a major allergic reaction intestinally. I can not tolerate anything with corn products or dairy products contained in the ingredients. Ask first, eat after asking only if you are certain the food contains nothing that might cause problems. Many restaurants are helpful, others aren't. Pick and choose and make sure they know you have allergic or disease problems and aren't just being picky. By controlling your diet you can eliminate much of the problem of the intestinal symptoms. Also, diet is important to reducing weight to your ideal. Overweight issues only contribute to your problems and increase your pain. Get exercise even if it is only isometric. Ask your doctor for a Physical Therapy referal to determine which types of exercises you can and should do to maintain physical health, reduce fatigue, and increase endurance. Neglecting to get adequate exercise will only contribute to a failing quality of life. Been there, done that. Regular exercise has changed my life and helped me to reduce my weight by some 50 pounds. I am able to work longer hours and participate in activities with friends and family in ways I haven't been able to do for too many years. Just got back from Florida where I went hiking, snorkeling, and parasailing...all things I wouldn't have thought of doing not too long ago. (Parasailing can be done by even those with many health issues. There was an 87 year old grandmother on one trip!) Many of us have found that hot whirlpool baths, or just hot baths help reduce pain and increse flexibility and useage of inflammed joints. I often take a hot bath just before leaving for an activity or work. Heating pads while watching TV or reading can help, too. I'm not a fan of ice packs. They only seem to contribute to spasms for me. Stress reduction is important, too. I'm living apart from my family right now as my wife and I go through a contentious divorce. Being away from family stresses has contributed to the improvement in my health. Not everyone can do what I've done, but there are ways to reduce work, family, and other stresses in your life. For example, I used to be heavily involved in volunteer work in churches and community. I do not do any of that now, except for brief one-shot deals finished in a single day. My health is more important to me than helping any other person might be. Without my health, I can do nothing for myself, let alone anyone else. Find things you enjoy doing and do them regularly! Enjoyment and satisfaction are important factors in healing and maintaining a healthy lifesyle. I love to read, so I'm reading more than I used to. I garden, though I don't have a yard right now, by planting container gardens. Truthfully the pleasure is increased for me right now because I don't have to maintain a large property full of plants like I used to attempt. I sing in our church choir...when I want to and am able to. Things you do for pleasure should not become burdens. My choir director and the members understand that there are days when I can do just about anything I want to do, and there are days when I can do little more than sit and watch if I even attend. Everyone has challenges in their lives and most people are accepting of others who are trying to make the best of the challenges in their own lives. So, get over being embarassed about your condition and get on with enjoying life as much as possible. Ray Neal, moderator male, age 55HLA-B27 negative, Reactive Arthritis/Reiters Syndrome since age 10, Fibromyalgia, asthma, sjogrens syndrome, IBS Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2004 Report Share Posted November 5, 2004 Dear Liz, What was your reaction to Remicade? Did they try Enbrel? I am going to start Enbrel next week...I was too nervous about Remicade since I met a few people recently who said they always get reactions to Remicade, although my doctor wanted that drug for me. I hope you find something that helps you...I have trouble taking NSAIDS too due to diarrhea, even though I have Reactive Arthritis. They really seem to help people that can take the strong ones. I can't eat corn products because they bother my mouth, and am lactose, whey, and fat intolerant (diarrhea). There's not much I can eat anymore and I lost alot of weight. My flares used to go away...this one I have for over 8 months already and I get lots of mouth sores and severe sore throat with it too. Anyways, welcome to the group! Debra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2004 Report Share Posted November 5, 2004 Hi Liz, You appear to be on the right track with your treatment. I have been taking Methotrexate , 20 mg. / week/ self inject, for 3-1/2 years with very good results. I tested the MTX by going off it for a couple of months last year, and I was a wreck without it. I was prescribed oxycontin a few years ago, and it worked perfectly to control the huge amount of pain I have. I had to stop taking it when my insurance stopped covering my prescriptions, and I couldn't afford the $300+ it cost. I take Methadone now with adequate results. The best advice I can give you is the same thing Ray told you, keep moving and don't quit, or you will really " stiffen up " . I hope this helps. Yours, Harv I'm 49, diagnosed w/Reiter's age 24 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2005 Report Share Posted March 23, 2005 > I have been reading the posts from the last couple of days and found that this site was exactly what I needed to be involved in! So much information and so much encouragement. > I started my quest to get rid of this darn body fat (once and for all) on Monday. I started out the new year telling my husband that this year was going to be all about me. Welcome aboard!! I just started a new blog at Bodyblog.com and it is titled, " All about me " Colleen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2005 Report Share Posted May 24, 2005 Stacey--your blood is boiling and your heart is full. You're in the right place. > Hi Everyone, I just signed on last week but haven't had a chance to > post yet (except to get added to 's list!). I just bought EOH > on Sunday and started reading it last night....I couldn't put it > down. So let me start by introducing myself. My name is Stacey and > I live in Alaska with my two kiddos and husband. I have an eight > year old daughter with Autism who started her spriral downward after > getting her immunizations. In October of 1998 (right before her 2nd > birthday) she was rushed to the Emergency Room with a fever of 104. > After every test imaginable, all they could tell me was that she has > something wrong in her stomach/intestine ( " because it appears swollen > and she's 'gaurding' it " )...but not to worry, the antibiotics will > take care of it....within six months, I had lost her to Autism... I > could never get that ER visit out of my head and started researching > her symptoms online....that's where I found the term " entercolitis " > and it matched her symptoms. She wasn't diagnosed until she was 4 > 1/2 and when she was 5 1/2 I came across some materials on biomedical > interventions. She is on the GFCF(and soy free) diet, and we're in > the process of ridding her body of the yeast overgrowth. We're > starting chelation in July! Woohoo! I suppose I could go more in > depth to our story but I realize that most of you have either 1) been > there yourselves or 2) read about the same issues in the book. So I > see no point in repeating what's already been done. I will never > again apologize to those damn doctors that I am not immunizing my > younger son with vaccines that contain thimerisol....I will now hold > my head up high and stick to my belief that yes, vaccines had > everything to do with my daughter falling to autism....It's > comforting to know that I'm not alone anymore!!! I look forward to > being an active member to this list! > Stacey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2005 Report Share Posted May 25, 2005 HI Stacey! It is nice to " meet " you.. Kirby is speaking tomorrow in Minneapolis and I will definitely be there..It should be a very interesting afternoon. Our daughter Sheryl's autism is as much a clear-cut, slam-dunk, case of thimerosal poisoning as there could possibly be. We are with you and your family all the way! Sincerely, Tim, Rose, and sherylrose. Eau , Wisconsin. Re: newbie! > Stacey--your blood is boiling and your heart is full. You're in the > right place. > > > > Hi Everyone, I just signed on last week but haven't had a chance > to > > post yet (except to get added to 's list!). I just bought > EOH > > on Sunday and started reading it last night....I couldn't put it > > down. So let me start by introducing myself. My name is Stacey > and > > I live in Alaska with my two kiddos and husband. I have an eight > > year old daughter with Autism who started her spriral downward > after > > getting her immunizations. In October of 1998 (right before her > 2nd > > birthday) she was rushed to the Emergency Room with a fever of > 104. > > After every test imaginable, all they could tell me was that she > has > > something wrong in her stomach/intestine ( " because it appears > swollen > > and she's 'gaurding' it " )...but not to worry, the antibiotics will > > take care of it....within six months, I had lost her to Autism... > I > > could never get that ER visit out of my head and started > researching > > her symptoms online....that's where I found the > term " entercolitis " > > and it matched her symptoms. She wasn't diagnosed until she was 4 > > 1/2 and when she was 5 1/2 I came across some materials on > biomedical > > interventions. She is on the GFCF(and soy free) diet, and we're > in > > the process of ridding her body of the yeast overgrowth. We're > > starting chelation in July! Woohoo! I suppose I could go more in > > depth to our story but I realize that most of you have either 1) > been > > there yourselves or 2) read about the same issues in the book. So > I > > see no point in repeating what's already been done. I will never > > again apologize to those damn doctors that I am not immunizing my > > younger son with vaccines that contain thimerisol....I will now > hold > > my head up high and stick to my belief that yes, vaccines had > > everything to do with my daughter falling to autism....It's > > comforting to know that I'm not alone anymore!!! I look forward > to > > being an active member to this list! > > Stacey > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2006 Report Share Posted January 17, 2006 Hey , I will say a prayer all goes well and you will be banded very soon. I too had to convince my husband Mexico was OK. After our experience with Dr Aceves, my husband said "if I ever have surgery I want Dr Aceves to do it". You should have your husband call and talk to mine. My husband is a little shy, but I am sure he would gladly share our experience, man to man. I also knew my insurance would never cover me. I would intentionally have had to gain 70 lbs and then I probably would have still been denied. I know a woman who did intentionally gain a lot of weight and was denied. She went to Mexico and had the surgery too. The surgery with Dr Aceves is only $8200. If most of us count all the diets we have been on in our lives we have way over spent that. I love my band and I love the life that it has given me back. I was banded in July and was in a size 20 pants. I went to Old Navy yesterday and was able to fit in 10's. They were still a little snug, but I bought them knowing in the next 2-3 weeks they would be fine. I can't tell you how much more energy I have and how wonderful I feel. Please tell your husband that Dr Aceves is amazing. The hospital is very clean, the whole staff is well trained. Dr Aceves is Certified by the FDA approved INAMED band company and is a Member of The American Bariatrics Surgeons Association. You won't find a surgeon more qualified, compassionate, etc. etc. I could talk all night. I hope others too will tell you about their experience with Dr Aceves. I would love to have you email me or call me anytime if you need support, or if you want me to talk to your husband ;0) My email is jugross@... and my cell # is 425-346-0713. You will find a great family of support with this group. Please keep us all up to date. I pray you will be banded VERY soon! Newbie! Hello everyone! I have not had the surgery & probably won't be able for another 6 to 9 months. I have two big obstacles...I have to convince my husband that going to Mexico is not the craziest thing he's ever heard & I need to raise the $$$. He is supportive about the surgery, but $9000 is a lot of money & he's not willing to part with that kind of dough until I exhaust all my resources with our insurance company. The problem with insurance companies (as I'm sure most of you know) is that they do not consider me "morbidly obese". I am 5'6" & weigh around 230 pounds. Fortunately, due to my height & build, I am able to hide my weight a little. Anyway...I will be spending the next few months (while still socking away money) forcing my insurance company to formally deny the surgery. We'll see...wish me luck & keep me in your prayers please.Thanks!Grand_duchess88 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2006 Report Share Posted January 17, 2006 Welcome ...and good luck with the insurance obstacles! I didn't even bother since my insurance specifically exempts ANY AND ALL weight loss meds or surgeries...guess they would rather pay for all the other health problems caused by the excess weight. I barely fell into the range necessary to have the surgery with Dr. Aceves. They can only go down to a BMI of 35...I was at 37 the day of surgery. Now I am down 32 lbs since Oct 5...and doing pretty darn good! I still sometimes eat too fast...or don't chew well enough...and PB...but most of the time I can follow the rules of the band...and it is not nearly as hard as trying to lose without it!!BIG HUGS, AND GOD'S BLESSINGSDawnita MayLowpass, Oregon10/05/05 dob "Iraida" 209/177/135 5ft 3inches See Mylatest photos at: http://dawnita1961.myphotoalbum.com/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2006 Report Share Posted January 18, 2006 Thanks for the note of encouragement - everyone is so great on this site. I'm in the same exact position since my BMI is about 37...I don't weigh enough or have enough health problems (yet) for my insurance to cover this. It's sad that I'd have to gain atleast 50 to 60 pounds & get a WHOLE LOT more health problems before I would even be considered for surgery by my insurance. Thanks again for the post! > > Welcome ...and good luck with the insurance obstacles! I didn't even bother since my insurance specifically exempts ANY AND ALL weight loss meds or surgeries...guess they would rather pay for all the other health problems caused by the excess weight. I barely fell into the range necessary to have the surgery with Dr. Aceves. They can only go down to a BMI of 35...I was at 37 the day of surgery. Now I am down 32 lbs since Oct 5...and doing pretty darn good! I still sometimes eat too fast...or don't chew well enough...and PB...but most of the time I can follow the rules of the band...and it is not nearly as hard as trying to lose without it!! > > > BIG HUGS, AND GOD'S BLESSINGS > Dawnita May > Lowpass, Oregon > 10/05/05 dob " Iraida " 209/177/135 5ft 3inches See My > latest photos at: http://dawnita1961.myphotoalbum.com/ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2006 Report Share Posted January 18, 2006 Hey Tameka, How are you? I hope excellent! If I am not being to nosey, why are you waiting until the summer to have surgery? You could have a ton of weight loss by then. Let me know if there is anything I can do to help you make this happen faster. I know money can be a tricky thing. I actually had to borrow the money from my Mother. I did my research and scheduled my surgery ASAP. It must be very hard for you to know this is what you want and you have to wait. You must be a very strong person. You cannot go wrong with Dr Aceves. Let me know when you decide on a date and I may be able to schedule my fill date around the same time. I am hoping to go in March and then again sometime this summer. It would be fun to meet. I love in the Seattle area. Where do you live? I pray you will be banded very soon! God Bless! Newbie! Hello everyone! I have not had the surgery & probably won't be able for another 6 to 9 months. I have two big obstacles...I have to convince my husband that going to Mexico is not the craziest thing he's ever heard & I need to raise the $$$. He is supportive about the surgery, but $9000 is a lot of money & he's not willing to part with that kind of dough until I exhaust all my resources with our insurance company. The problem with insurance companies (as I'm sure most of you know) is that they do not consider me "morbidly obese". I am 5'6" & weigh around 230 pounds. Fortunately, due to my height & build, I am able to hide my weight a little. Anyway...I will be spending the next few months (while still socking away money) forcing my insurance company to formally deny the surgery. We'll see...wish me luck & keep me in your prayers please.Thanks!Grand_duchess88 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2006 Report Share Posted March 22, 2006 Welcome, Neesha! I am also new to this, and it is awesome to learn so much from 'pros'. Have a great day! ;> --- ~*Neesha*~ <neesha@...> wrote: > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2006 Report Share Posted March 22, 2006 Neesha, Hello and Thank you for the Welcome! You have a great day too! Regina <phsctiger@...> wrote: Welcome, Neesha! I am also new to this, and it is awesome to learn so much from 'pros'. Have a great day! ;> --- ~*Neesha*~ <neesha@...> wrote: > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 Hi Regina and welcome to the group, i dont get much time to get on here, as much as i would like to, welcome. Chrisxxx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 Thanks ka and Regina! I hope I learn a lot here. R M <r_myellowrose@...> wrote: Neesha, Hello and Thank you for the Welcome! You have a great day too! Regina <phsctiger@...> wrote: Welcome, Neesha! I am also new to this, and it is awesome to learn so much from 'pros'. Have a great day! ;> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2006 Report Share Posted March 27, 2006 Hi Neesha & , I am a newbie here too, thankfully there are lots of people to help out if you have a question or problem! Thank Goodness! Welcome from one newbie to others ! : I am still making very small batches and while trying to learn! msmedic!_again - In , <phsctiger@...> wrote: > > Welcome, Neesha! > I am also new to this, and it is awesome to learn so > much from 'pros'. > Have a great day! > ;> > > --- ~*Neesha*~ <neesha@...> wrote: > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2006 Report Share Posted March 28, 2006 Hi, , I am glad we are in the same boat! It is nice to know we can lean on eachother! ;> __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2006 Report Share Posted May 18, 2006 hello charlene. congrats on your little and i hope despite your health issues that you are doing well. for your video suggestions i would suggest checking out http://www.collagevideo.com they have 60 second previews of all sorts of videos including dancing. they are pretty reasonable,but if you find that its not in the bugest you can search for videos on their site but purchase from other sites like http://www.deepdiscountdvd.com and http://www.amazon.com . i am not into dancing workouts so i can't help you with actual suggestions but i can just offer how to help you find some. are there any other types of workouts you are into? i like most everything else like step,kickboxing,pilates,yoga, weights, and running. i am also a sahm with a going on 7 year old daughter, who is autistic. i pretty muich work on things at home b/c we don't get outside of school therapy. she goes to a regular school in a modified class b/c while she is caught up with other kids, she has to be taught differently. well welcome to our group, i do hope you find some great ppl to connect with here. kassia Messenger with Voice. PC-to-Phone calls for ridiculously low rates. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2006 Report Share Posted May 18, 2006 hey charlene welcome and congratulations!:)Maybe try yoga booty ballet? Its dancey and there are different ones to choose from. I don't have these yet but i'm hoping to get them next time i can splurge on new videosyogabootyballet.comI think a couple ppl on the board do it maybe they could tell u more about itKris.Charlene <charlene8301@...> wrote: Well I should start off by saying I am 22 years old I am 4'11.5" and weighed (on 5/15) 144lbs (which is for my height about 30lbs overweight!) I have some female health problems that make it a lil hard to lose weight but since having my son 7 months ago it has been even harder! I actually lost about 30lbs while in the hospital last October when I had him due to almost dying but I gained some of those pounds back. I am a sahm currently and about to get marry into a family that owns a dairy farm northeast of dallas, tx. I know our house will have carpet. I am looking for a reasonably priced exercise dvd (preferably) that is dancing (i love to dance!) that isn't too hard to learn. Do yall have any recommendations? Or any other videos you recommend? I have tried yoga but it doesn't do anything for me...Thanks in advance! Charlene My artwork available on cute items @http://www.cafepress.com/webgrl __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2006 Report Share Posted May 18, 2006 hi charlene! im not much help with dance-y workouts, sorry. but i know that some other people here enjoy them and hopefully they can help you find something. :*carolyn. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2006 Report Share Posted July 2, 2006 Hi Preet, welcome to the board I'm , I am turning 23 next Thursday. I don't have SMA but I am a friend of two young ladies who have it (Deena and ). I live in California too, in San Bernardino county. If you would like to chat, just add me to your buddy list, the address is CmdrJBuck@... :-d On 7/2/06, dreamzofx23 <dreamzofx23@...> wrote: > > Hey you guys, > > I just joined. My name is Preet and I have SMA type 2. I'm 20 yrs old > and a full-time college student. I don't really know what else to say > about me haha. So instead of rambling nothingness lol, I'll ask a > question that maybe someone can help me with and all. > > I am going to be transferring schools soon to start my classes(since I > am graduating from a JC.) I would really love to go to a school that > is out of my hometown but I have been having a lot of trouble deciding > if I should. I want to go to SDSU(San Diego State University) which is > like 6 hrs away from where I live with family. I am unable to walk but > I am fairly independent otherwise. So if I do decide to go to school > somewhere else, I know I will be needing help with caregivers and so > forth. Has anyone had any experience in this type of situation that > maybe you can give me some pointers on what to do and what the process > is I need to go through? I think I will be trying to get help through > Dept of Rehab, but I am new to this stuff(I never received any type of > financial help or " special " help throughout childhood so I'm a little > lost on the process. Any help would be greatly appreciated!!Thanks > sooo much! > > -Preet > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2006 Report Share Posted July 2, 2006 Hi Preet! Welcome aboard! Yes, many of us on this list have moved away from our families and have learned to hire and manage personal assistants and live independently. I moved out of a nursing home and to a different town when I was 16. I have SMA Type 2 and use a power wheelchair and a ventilator. I went to school and have been working since 1995 (mostly volunteer work before that). Are you on SSI? If so, you're eligible for In-Home Supportive Services (IHSS) in California. It's a program that pays for an assistant to help you with the personal care and/or domestic services you need to help you live independently. It's run by each county's department of social services. You can read about it here: http://www.disabilitybenefits101.org/ca/programs/health_coverage/medi_ cal/ihss/index.htm If you're not on SSI let me know...I may be able to help. Alana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2006 Report Share Posted July 2, 2006 Hey, actually, yes I am on SSI and I do already know about the services, and that is another thing that I'm debating because for right now my mom is my " caregiver " so she receives funds at the moment, and if I was to move out those funds would go away I'm sure and those things help the family. I found out that if i go thru dor, there is also funding for helpers through them. So we'll see. Wow, out at 16 heh, that is very cool in my opinion lol. Nice to meet u btw. -preet > > Hi Preet! > > Welcome aboard! Yes, many of us on this list have moved away from > our families and have learned to hire and manage personal assistants > and live independently. I moved out of a nursing home and to a > different town when I was 16. I have SMA Type 2 and use a power > wheelchair and a ventilator. I went to school and have been working > since 1995 (mostly volunteer work before that). > > Are you on SSI? If so, you're eligible for In-Home Supportive > Services (IHSS) in California. It's a program that pays for an > assistant to help you with the personal care and/or domestic services > you need to help you live independently. It's run by each county's > department of social services. You can read about it here: > > http://www.disabilitybenefits101.org/ca/programs/health_coverage/medi_ > cal/ihss/index.htm > > If you're not on SSI let me know...I may be able to help. > > Alana > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2006 Report Share Posted July 2, 2006 yes, it's a difficult transition for families when parents or siblings are earning money assisting the disabled family member. it's good that you are planning ahead. part of that planning can be helping your mom figure out how to replace the income when you leave. maybe she would enjoy working for another person with a disability. her experience is very valuable. as for department of rehabilitation, in california they will usually pay for assistance directly related to school and they expect you to utilize all other available resources, such as IHSS, first. yes, it was quite an adventure moving at 16. lots of mistakes...lots of lessons. ;-) > > Hey, actually, yes I am on SSI and I do already know about the > services, and that is another thing that I'm debating because for > right now my mom is my " caregiver " so she receives funds at the > moment, and if I was to move out those funds would go away I'm sure > and those things help the family. I found out that if i go thru dor, > there is also funding for helpers through them. So we'll see. Wow, out > at 16 heh, that is very cool in my opinion lol. Nice to meet u btw. > > -preet > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2006 Report Share Posted July 2, 2006 In a message dated 7/2/2006 2:12:04 P.M. Pacific Standard Time, jared.buck@... writes: Hi Preet, welcome to the board I'm , I am turning 23 next Thursday. I don't have SMA but I am a friend of two young ladies who have it (Deena and ). I live in California too, in San Bernardino county. If you would like to chat, just add me to your buddy list, the address is CmdrJBuck@... :-d I'm the Deena speaks of. Nice too meet you Preet. Where in Cali do you live? I'm 25 and live near SF. If you ever want to chat, my aim screen name is DeTannous and my id is _blair_biotch@..._ (mailto:blair_biotch@...) . Welcome to the list, Deena Quote Link to comment Share on other sites More sharing options...
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