| Re: Re: Re: We have a new member! Please welcome Pam -- Diane Roudebush | |||
| Posted by Diana Kopulos ® , 2008/03/23, 08:59:45 | Post Reply | Top of Thread | Main Forum |
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Hello Pam, Diane and all,
Your posts take me back a few years to when my husband was first diagnosed with IBM and experiencing the unexplained falling, not being able to get up from sitting, difficulty with stairs, and general weakness. An orthopedist who was looking at his damaged knee, saw more than the knee going on and sent us to a neurologist who did the electrical testing of muscles, then ordered a muscle biopsy which gave us the definitive diagnosis of IBM. We had never heard of this before either - but were glad it was not one of the other diseases he was tested for such as cancer, aids and als. We were also told to prepare our homes and acquire the equipment he would need to accommodate the physical losses. The Dr. was correct in giving us this advice. We know how scary this is at first and how frustrating that there is no clear treatment. Some take drugs, some do not. Some exercise, some do not. As Lou and others have said, a positive attitude plays a great part in finding meaning in everyday life. It certainly goes a long way toward making the life of your caregiver easier. We have cried but more often, laughed about this. As Jim K once pointed out, you will lose some friends and also find out what real friendship is. All the changes you will go through are very difficult but I wanted to write today to say that with the support of friends, family and the medical community, you can adjust to a 'new normal' and things will become easier with practice. We are now in a daily routine that involves a lot of personal care in the mornings and evenings but Jim is mostly on his own in a power chair throughout the day. We have remodeled our bathroom, purchased a handicap van and installed a lift outside. We have sold our business and I found a part time, benefited job at a university that allows me the time to help my husband and still work some. We needed financial help and so applied for and received disability from the state then after two years, were automatically put into medicare which has been a tremendous benefit and has paid for most of our medical needs. Jim is now 58 yrs old and I am 56. You may also face the time when it is no longer safe to walk and remember that giving in is NOT giving up - it's a matter of staying SAFE and not falling and complicating things with broken bones. When Jim gave up a walker and accepted a power chair, he actually became MORE mobile as it was easier and faster to move around the house, free up his hands, enter a van, and use a lift to get down into our backyard for reading in the sunshine. Try to stay focused on what you have not what you have lost. Most medical professionals know very little or nothing about IBM so you may be the one to inform THEM about the specific issues you face. I recommend an occupational therapist for support with equipment for everyday living. Start a file for all the information you find-even on equipment you may need in the future. You have found a good place here on this board to share your concerns and feelings and ask questions. All of us were 'new' at one time and eager to share what we've learned. One last note: don't be afraid to ask for help as those who love you also feel helpless and would like to be able to do something for you so let them! Don't deny them the blessing of loving you by helping you. You would do the same for them, right?
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