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
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.
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.....
Wow, that really is a sad situation.
Perhaps the rest of the family would rather believe in an ALS diagnoses because its not hereditary (than to face that Kenmedy's is hereditary, meaning they too could face it).
The Uncle going to the ALS meetings I don't think is a bad thing. Hope is needed in all sorts of situations. He has probably made lasting family friendships over the 10 years he has been going as well.
Bob, I'm sorry I didn't see this post earlier. My husband has KD and I've just recently begun to try to regularly check out the forum pages. I'm sorry to hear your family is in denial. I don't quite understand what you meant by the comment you made about it being too late for you. Was that in relation to applying for disability benefits? You know you do have a "family" here through KDA that does understand what you deal with. My husband and I try to join in to the monthly chats whenever possible. We have missed the last few due to other committments but find them to be very supportive. As a wife of a KD patient, I enjoy the once a month chat for Wives and Significant Others. I feel I have made valuable friendships even though I have never met anyone face to face yet. We were not able to attend the 2008 conference but we're looking forward to going to the 2009 conference. I have chosen to try to be more involved by joining the Fundraising Committee and can't wait to meet everyone face to face. I haven't been able to do much in the fundraising area yet (I've not really done anything like that before) but I'm still trying!
Location: Auckland, New Zealand
hello im very new to this forum concept. i am a 17 year old girl and my father was diagnosed with kennedys a few years ago. ive turned to internet forums as i cant talk to my family as they push the issue aside. i hurts to see my father in the condition he is in. i find it scarey to be left alone as i dont want him falling or choking because im scared i wont be able to help. i want to talk to my mother but of coarse she finds it hard to talk about. i do not like to put my problems on other people but this is really my last resort to talk to people that know how i feel. friends can only do so much.
Hi Georgia! I just responded to your post on the other thread. I apologize, I had not seen this post prior to that so I was not aware of your age when I responded. I'm sure my 21 year old daughter has many of the same concerns as you. I'll let her know of your concerns & see if she has any suggestions! :0)
Location: San Luis Obispo CA
Georgia, be sure to see the post on "laryngospasm (dry Drowning) Choking"
It sounds much worse then it really easy. Once your Dad learns to relax during the spasm everyone will feel much better. (Been there done that!)
Some families just push such issues aside, that is the way we are. A lot depends personal philosophy. Some folks think talking about something is an end in itself. The more stoic are more interested in actual accomplishment and talking about the obvious does note seem to contribute to solutions. That does indicate lack of concern or denial, but more often an overabundance of concern over the impact on others.
choking - as noted above what is going on is not really choking so your Dad is not in danger. The episode will pass fairly quickly. It will take a few minutes for your Dad for your Dad to get his voice back.
Falling - it might be worth talking with your Dad's physical therapist(PT) if he has one, or someone with some medical training. Learn how to determine if there are broken bones. If there are just call for help. If not just be patient and work with your Dad to get comfortable and rest before attempting to get up. The PT should be able to give you some advice. A little practice (on someone other than your Dad) will go a long way to gaining confidence.
I spend a lot of time alone and I keep my cell phone with me at all times - ALL times. If it isn't around my neck it is on my walker or on the charger next to my bed while I'm sleeping. Your Dad may want to consider doing the same thing some his care givers can relax when he is out of sight.
If you were my daughter I would NOT want you to arrange your life to provide care giver services to me. Occasional support is certainly appreciated, but being able to deal with physical limitations is just the straw we have drawn.
email:rheitzman at gmail
Hi, I'm Bob's wife. It has been a LONG time since we checked this site.
Yes, he meant it was too late for him to get disability insurance or any more life insurance. If one knew this disease was possible, you could plan ahead getting all you financial ducks in a row in case you did come up with it.
I can hear Bob before he begins choking during the night and tell him to turn off his back. He eats much slower, gets hard to chew and his speech is beginning to slur more. He doesn't hear it of course, but usually I understand everything he says.
Bob falls a lot and me too! We sure are a pair to see walking or scootering together.
Lois, it is great that you still have a sense of humor. The challenges life has to offer vary, but none the less they are challenges to our ability to cope and function.
We have to have a sense of humor or go crazy, I'll take the humor. Been to the deep depression and "why me?" Now we are like, "who can we help?" We make fun of ourselves (alone usually), and say hi to everyone. Saying help first can break the ice, especially in a wheelchair.
As they often say, "Laughter is the best medicine." That is why I watch Blazing Saddles and Young Frankenstein at least a couple of times a year.
The family is still in denial. We suspect Bobs' mom is showing some light symptoms. The MDA Dr offered several times to speak to any family member or to bring mom in to the clinic, yet she says no.
God is the greatest physician of all.
Well, my mother-in-law passed away last month in total denial. Bob did take an ICU nurse aside to explain she was a Kennedy's carrier and we suspect some of her symptoms could be Kennedy's. The nurse was VERY glad that somebody informed them of the "possibility" but she died anyway. Sad, very sad that both his parents died without "believing" this was an inherited disease. Their generation did not understand genetics nor did they speak of "illness." I hope that others are more accepting of their sons and give them the support the need and deserve.
God is the greatest physician of all.
Kennedy's Disease Association
PO Box 1105 Coarsegold CA 93614