Guest guest Posted January 15, 2004 Report Share Posted January 15, 2004 Hi Toni, We don't have a dx yet (it's still early for neurosarc - only 10 months...) but Gregg can't work because his condition is so erratic. We don't know of any employer who would hire him even part-time, knowing that on any given day he might not be able to get out of bed or stop throwing up. He might also feel perfectly fine... we never know and there's no pattern or way to predict. That's probably not helpful, but that's been our experience. I've been meaning to tell you - my Mom's name is Toni. Her's is short for Antonia. Love, Jeri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2004 Report Share Posted January 15, 2004 Hi Toni, We don't have a dx yet (it's still early for neurosarc - only 10 months...) but Gregg can't work because his condition is so erratic. We don't know of any employer who would hire him even part-time, knowing that on any given day he might not be able to get out of bed or stop throwing up. He might also feel perfectly fine... we never know and there's no pattern or way to predict. That's probably not helpful, but that's been our experience. I've been meaning to tell you - my Mom's name is Toni. Her's is short for Antonia. Love, Jeri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2004 Report Share Posted January 15, 2004 Toni I hope to god that it isn't a permanent/total incapacity. But at this point in my life, I don't see myself ever being able to go back to work. The reason I say that is even when I gain a little forward progress, a cold, a sinus infection, stress of every day life, the constant exhaustion, the bone pain, muscle fatigue, set me back. Just about the time I think that my thinking has gotten better, I do something that brings me back to the reality that I'm not well, that I'm not functioning with a full deck, that my judgement, problem solving, etc are just not what they would need to be for me to work. When we explained this disease to my social worker, my friends had stated that what they saw in me was that carrying on a conversation with me is like working with someone that has early Alzheimers. We end up beating dead horses and I don't realize that I've even been on that horse before. The muscle weakness and fatigue is very similar to MS, complicated by the constant pain of fibromyalgia. The bone pain feels like my bones are being crushed from the inside out. The small nerve fiber neuropathy makes my skin feel like its on fire, and the peripheral neuropathy has advanced to make my arms and hands make me wish we could cut them off. The other major insult is that the arthritic pain- especially in my fingers and hands, and now in my feet at the joints of my toes, feels like icepicks have been inserted into the joint space. All of this is brought on by the constant systemic inflammation. Until we get all the blessings we need to get a complete regime of medications and treatment, when one settles down, the others party and take up arms. Simple answer, it is totally disabling. Tracie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2004 Report Share Posted January 15, 2004 Hi Toni, Some people can work, some people cannot. It depends on what is affecting them and how well the disease is managed/progressed. I cannot work, too sick to get around. I can barely eat let alone wash myself. Have you phoned centrelink? Did they send you forms? You must remember to tell them the things you CANNOT do. Cannot walk, talk, think, move, drive, see, hear, eat, do your normal tasks etc. There is a caregiver form, and this is the sort of thing that they ask, hope some of it helps. Love isha. Day to Day care needs Can you:- move around the house without help/with some help/with alot of help/cannot do this fall over indoors always/often/sometimes/never fall out of wheelchair if unattended always/often/sometimes/never move to and from bed, chairs, wheelchair and walking aids without help/with some help/with alot of help/cannot do this have difficulty hearing clearly always/often/sometimes/never have difficulty seeing clearly always/often/sometimes/never need help or attention during the night always/often/sometimes/never have loss of bladder and or bowel control always/often/sometimes/never use continence aids or equipment without help/with some help/with alot of help/does not use aids use the toilet without help/with some help/with alot of help/cannot use a toilet eat his/her food without help/with some help/with alot of help/cannot feed themselves shower, bathe him/herself without help/with some help/with alot of help/cannot do this dress him/herself (the want to know if you can tie shoe laces, do up buttons zips etc) without help/with some help/with alot of help/cannot do this look after personal grooming (shaving, caring for hair, teeth) without help/with some help/with alot of help/cannot do this take care of own medication (takes right table at right time) without help/with some help/with alot of help/cannot do this/does not take medication take care of his/her own treatments (oxygen/wound care/tube feeds) without help/with some help/with alot of help/cannot do this/does not use treatments Cognitive function (Mental Capacities) understands what you say always/often/sometimes/never understands what other people say always/often/sometimes/never lets others know how he/she feels and what he/she needs always/often/sometimes/never know where he/she is always/often/sometimes/never know whether it is morning, afternoon or night always/often/sometimes/never remember things that happened today always/often/sometimes/never wander away or run away from hom never/sometimes/often shout, scream at or threaten other people never/sometimes/often physically harm other people never/sometimes/often damage furniture, posessions or objects never/sometimes/often laugh or cry without apparent reason never/sometimes/often withdraw from social contact with other people or appear depressed or worried or fearful never/sometimes/often deliberately harm him/herself never/sometimes/often have unusal, unappropriate behaviours never/sometimes/often Quote Link to comment Share on other sites More sharing options...
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