My husband has recently been diagnosed with Adrenoleukodystrophy.
The frustrating thing for me is not really having a prognosis. Will it get worse?
We have 3 children: 1 girl age 15, two boys 14 &11.
Anyone out there with any insights, inspirations or advice would be welcomed!
You'll get lots of support from ULF, also from Kennedy Kreiger Institute (they are currently doing a Lorenzo's Oil study) - you may need referral to them. I found lots of info online about male response to ALD/AMN - not much for females ... making my involvement with the above groups so important. From my perspective ... do your best daily to stay positive and keep moving! Both can be hard depending on the day ... please know that you have lots of support from many people working with your situation.
I have contacted KKI and we are interested in participating in the clinical trial. I am feeling overwhelmed...there is just so much to try to plan for. I would like to see him take a break from working so hard (he is an electrician) but can we support a family on disability? He is constantly tired and I am paranoid he will end up falling and seriously injuring himself. He doesn't want to just sit around the house and I don't blame him! Then when I factor in the possible issues for my daughter I just crumble. It's like everyday problems are becoming too much for me. I'm sure I just need a period of adjustment to get used to this whole thing.
Yes, it would help if you can step back and adjust - is that possible? Can you take day just for yourself? It's asking a lot ... but it may be a lifesaver! Personally, I've had to keep working (part-time now) to keep my sanity. Fatigue is the most difficult part of this for me, I've had to step back and rely on others for the first time ... but it can be done! I'm glad that you're getting involved with ULF and KKI, info is your greatest power now! Don't know about disability - I've made an appt. to talk with SSA about it, again, getting info. I encourage him to weigh his choices at work and learn safer ways to get the job done... for his safety and to get the job done, too! Being an expert at falling (learn to roll to decrease injury!) - I understand your concern. I found that sudden moves aren't good for me - throws off the balance. If I may share ... my daughter (24) has had a difficult time getting pregnant and when she did last year, well, I was a mess. Thank God my DNA had been completed at KKI and she was able to have her testing done. She'd already decided to abort if the fetus was male, so this was a REALLY big deal for us. 3 ultrasounds were done, it was determined the baby was female, but they still had a huge decision to make. She tested negative for the gene! I cried for 2 days just from stress relief! So, I understand your concern for your daughter!
Please take time for yourself, if you can. Regroup and get info! Your support - attitude and otherwise - is critical! Each day is a new beginning, a new blessing for all of you! I know it's hard, I hope you take good care of yourself because it'll make the difference for everybody involved. He has to do the same! Love and support each other! We're pulling for you with love and prayer!
Hi, I just wanted to let you know that you are not alone. I have gone through exactly what your husband is going through. I was diagnosed with AMN 11 years ago. At that time I worked in the heating & cooling trade. My employer at that time was very understandable. They worked with me to keep me employed there. First they told me to no longer go up on roofs, and they would send someone else out to finish that part of the job. Then as things progressed, they kept me in the shop more and more. I worked building duct work and getting jobs ready for the other guys. I did fall some and did get minor bumps and bruises. But for me it is all worth it. I am not a person either that can just sit around. I always need to be doing something. I think I need that to give me a sense of self worth. Anyway the whole time I worked in Heating & cooling I always new that I would not be able to work in that trade for many more years. But I knew that when the time was right God would supply work for me. Sure enough after about 5 years after my diagnosis God dropped another job in my lap. I now work for a company that builds machinery for the beverage industry. I work in the parts department selling replacement parts to customers that have our machinery in the field. I am still able to use my mechanical ability in my job. But I am able to do my job from my wheel chair.
I am still able to get around with a cane for short distances. I think all my neighbors think I am crazy. One day they see me out with my family in my wheelchair and the next day I will go out and rake the lawn. (The rake doubles as a cane) There are not many things I can’t do, it just takes me much longer to do them. I know that often I give my wife a heart attack because of the tings I do. Don’t get me wrong I do fall and I do get hurt occasionally. Right now I am nursing a sprained ankle. But regardless, I am not one that is able to sit around. I do often get frustrated that I can do the things that I want to do.
I am also in the KKI study. They give me exercises to make sure I stay active. I think the more active I stay the slower things will progress.
I hope this helps you out and gives you some encouragement. I also want to let you know that I live only about 1 hour drive from you in Zeeland. If you ever want to meet up with me, let me know. We might be able to meet in Grand Haven or Muskegon.
I will be praying for your family to make the necessary adjustments.
In Christ
Brad
P.S. e-mail me direct: brad1969mach@yahoo.com
To echo Brad, you are not alone. I'm living with AMN. I started using a cane about one year ago. I use it most all the time now.
The challenges are huge but the opportunities for growth are endless. I know that I've grown emotionally and spiritually because of this disease. I see life from a different and better perspective.
I do get depressed at times but then I think about how great my life has been and still is.
God bless you and keep on praying.
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