Kennedys Disease Association Homepage Kennedys Disease Community Forums Spouses & Significant Others Supporting a Husband whose Family is in DENIAL...
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New KDA Poster Location: AZ
Registered: 31 March 2006
Posts: 5
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Posted
My husband went through all the proper steps to reach his diagnosis. Over a year of testing, many blood tests, speacilists, muscle biopsy and finally the DNA test which confirmed Kennedy's Disease, yet his family is in DENIAL. His maternal Uncle was "diagnosed" with ALS over 10 years ago (did not go past the EMG testing becaue it "hurt too much") and all of the famaily feels sorry for the uncle? Now that we know that Bob indeed has Kennedy's Disease we know that his Uncle has a 99.9% probability of the same diagnosis too and were thrilled to call and tell him such news. Upon calling the Uncle last year, the Uncle was angry and has not spoken to Bob since. It's as if he doesn't want to hear that he could not possibly have something other than the ALS since he has lived for 10 years with this disease and is the "Savior" at the local support group. Meanwhile, my husband gets absolutely no support from the family at all. He has 3 brothers and two sisters. Each sister has 2 sons. One sister has a daughter with 3 sons. Not one person cares to hear about this diease and what could possibly affect them? Bob's own parents refuse to believe in the DNA test and think it a bunch of nonsense. His 99 year old Grandmother says he ate "bad food"! I guess because everyone has heard of ALS, the uncle is the only one they all think has a "REAL" problem while Bob suffers alone. It's so, so sad. ......Lois
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Bronze Member Registered: 28 September 2005
Posts: 124
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Posted
Lois, thanks for sharing. I can understand your frustration and disappointment. Most everyone (family included) go through several stages until reaching acceptance. Some never complete the process, unfortunatly. Give them time as well as provide them with information and support. If it is meant to be, so be it.
Reference ALS. I have heard a similar story several times in the past. After being misdiagnosed and then surviving for several years, the person is looked upon as beating the odds. It becomes difficult to accept that all along you were misdiagnosed. Thanks again for sharing. Bruce |
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New KDA Poster Location: AZ
Registered: 31 March 2006
Posts: 5
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Posted
Hi Bruce, Maybe it is none of our business, but it really bothers us that Bobs' uncle continues his charade with his ALS group. He gives false hope to those in his group trying to sell them vitamins, etc. which he believes have kept him alive all these years. The family also believes all of this garbage too. Now that Bob took the necessary steps and is open to speak to anyone who will listen, all of the family have closed their ears to us. It's sad. We are just waiting until the next family member comes up with symptoms like a brother and then maybe, just maybe they will come to us for questions. We wanted so much to try and explain everything so that they might get disability insurance, etc. before it is too late like it is for us. They all act like we don't exist anymore. No calls, no cards.....
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Kennedys Disease Association Homepage Kennedys Disease Community Forums Spouses & Significant Others Supporting a Husband whose Family is in DENIAL...
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