Guest guest Posted June 3, 2006 Report Share Posted June 3, 2006 Steve, I saw in your last post that you have MERRF. How old are you and how are you medically at this point. Not trying to be nosey but my 21 year old son also has MERRF and would love for him to have someone to communicate with. Most of his friends pretty much have abandoned him because of his lack of ability to keep up and because he's had to be brought home early from a night out because of his myoclonus acting up which could lead to a seizure. I feel so bad for him sitting at home every night at the age of 21...its just not right. Anyway, if you'd be willing to contact him just email me and I'll give you his address. Thanks, Kim in Pennsylvania Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2006 Report Share Posted June 3, 2006 Kim, I have been communicating since last August with a lady in California whose son has MELAS. Not sure if she is on the lists now but from what I know he has the same problem with his friends. He had his own apartment and things but then last year had a seizure and now lives at home. If it is ok I will forward your email to her. Her name is ne. Janet Sample (my son is only 13) Questions for Steve Steve, I saw in your last post that you have MERRF. How old are you and how are you medically at this point. Not trying to be nosey but my 21 year old son also has MERRF and would love for him to have someone to communicate with. Most of his friends pretty much have abandoned him because of his lack of ability to keep up and because he's had to be brought home early from a night out because of his myoclonus acting up which could lead to a seizure. I feel so bad for him sitting at home every night at the age of 21...its just not right. Anyway, if you'd be willing to contact him just email me and I'll give you his address. Thanks, Kim in Pennsylvania Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2006 Report Share Posted June 3, 2006 Hi Kim I'm 56, and that puts me at an entirely different life stage than your son. When I was 21 I was just starting to have " mild " symptoms, however my severe headaches and inability to sleep well were at least partially responsible for my dropping out of M.I.T. At that age, though, I was not experiencing siezures. I do sympathize, though, and if your son would like to chat with me about life in general, especially living and coping with life changes from mito symptoms, please give him my email address. I have a daughter (no symptoms), a son (bipolar but no mito symptoms), and a step-daughter, all in their early twenties. My wife, a pastor about-to-be, has vast skill and experience with young people, and can surely give me some suggestions. All my life (until it got worse and I was eventually diagnosed, in the last six years or so) I remember wondering, " Is this what most people FEEL LIKE, in their bodies? " . I would force myself to climb mountains, or water ski, or whatever, but it seemed to take a LOT more out of me than most people my age. Also, it seemed like others woke up with more energy, and basically ached a lot less, etc. There's no way to really say in this regard, as to what's going on inside our bodies. I guess that's because when we were young we older-onset mito's generally COULD (with sufficient motivation) put out a lot of energy, however hard it was. At this point, I can walk but not run, can carry groceries from the car to the house, and can go up a flight of stairs, but all of these things leave me gasping, sweating, and faint unless I pace myself very carefully. I have about 4 hours of mental productivity per day, so I try to ration it wisely. I had a long enjoyable career in computer programming and product development, as an independent contractor. This worked well for me, because I could work in spurts when I was younger, typically in the late afternoon or evenings (you may have heard the term " midnight programmer " ; for some reason this career attracts night owls). Now I'm disabled, and I am constantly on the prowl for the rare person who will go " gently " walking, boating, or fishing with me, on Cape Cod, at the unusual time of late afternoon only. :-) Regards Steve D. (in " far " eastern Massachusetts) Questions for Steve Steve, I saw in your last post that you have MERRF. How old are you and how are you medically at this point. Not trying to be nosey but my 21 year old son also has MERRF and would love for him to have someone to communicate with. Most of his friends pretty much have abandoned him because of his lack of ability to keep up and because he's had to be brought home early from a night out because of his myoclonus acting up which could lead to a seizure. I feel so bad for him sitting at home every night at the age of 21...its just not right. Anyway, if you'd be willing to contact him just email me and I'll give you his address. Thanks, Kim in Pennsylvania Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2006 Report Share Posted June 3, 2006 Steve, Your situtation and energy is my experience also. although Ihave never been very athletic or coordinated, I managed to make it thru basic training for the army reserve; the sergeant training; and annual camps we had. That was 20 yrs ago--I am now 44 and for the last 6 years or so have found that doing normal activities like grocery shopping wear me out. Also, my blood sugar goes up when I do physical exercise so unless I remember to give myself an extra dose of insulin I get tired from that as well as my legs feeling like they are going to cave in. Janet Sample Questions for Steve Steve, I saw in your last post that you have MERRF. How old are you and how are you medically at this point. Not trying to be nosey but my 21 year old son also has MERRF and would love for him to have someone to communicate with. Most of his friends pretty much have abandoned him because of his lack of ability to keep up and because he's had to be brought home early from a night out because of his myoclonus acting up which could lead to a seizure. I feel so bad for him sitting at home every night at the age of 21...its just not right. Anyway, if you'd be willing to contact him just email me and I'll give you his address. Thanks, Kim in Pennsylvania Quote Link to comment Share on other sites More sharing options...
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