Another way to see it ...

jolocny
0 Recommendations

I began to get a daily message from Neale Donald Walsh (:Conversations with God" author) and on this particular day I was having trouble getting a hold on my situation with ALD/AMN - it can be so different each day. This just said SO much to me, and I hope it gives you all hope:

"On this day, dear friend, I believe that God wants you to know ...
... that illness is not a sign of spiritual weakness, but of spiritual strength.
When we fall ill there are some who will say, 'Why did you create that for yourself?' they might convince you to see it as a sign of spiritual weakness or failure. It is a sign of spiritual strength.
All challenges are a sign of a spiritual strength, and of the readiness of the Soul to move on; to evolve even further."

I share this message for all of the adults with leukodystrophies, parents and caregivers ... I hope that it gives you the strength to see the disease in a different way, to give us strength to continue to work with it. Love to all ~ God bless!

10 replies

hopejoylove

thnx for your entry.
Love and support to you too!
Debbie Naugler BC Canada
Son 17 wth ALD

jolocny
  • By jolocny
  • Posted June 9, 2008 at 1:15 pm

Hi Debbie! Thank you for your support! I'm trying to find sayings, quotes, etc. that I can put around to give me a boost when ever I need it ... I think we all do that in some form or another. How are your sons doing? Has your younger son been tested? My daughter (age 24) has tested negative as a carrier, my son (he's 29) hasn't been tested but hasn't shown any symptoms so the Drs. assume he's also negative. I thank God for that! Will you be attending the ULF conference? We've gotten so much info and support from the conferences ... something to think about when you have questions. ... and, like the rest of us, can afford the travel! All the best to you and your guys!
JoAnn Locy, Oswego, NY

hopejoylove

Hi JoAnn,
Thnx for your reply! I would love to attend the conference but $ prohibits.
My younger son Evan has the gene and has an MRI every year.......which is nerve wracking.He is 11yrs old now and shows no signs of disease.I havn't really thought about how I could be affected.What were your symptoms?
Much love and support to you and your family

jolocny
  • By jolocny
  • Posted June 11, 2008 at 7:17 pm

Hi Debbie,
I began loosing my balance, falling in my 30's - assumed I was just clumsy! My symptoms - more falling, I found it very difficult to walk 24 hours after PT/exercise for a day or so, and I wasn't "jumping back" after surgery. I thought I was crazy for a few years, as no one could find what was wrong! Tingling, numbness in my legs and lower back. I found out that for women, the symptoms are all below the waist, may start in the 30's but really coming on (IF destined to do so) in the mid-40's. I know many women that have no symptoms of the disease at all! I have no family history, my kids are negative for it. Just a fluke, huh?
Sorry, this is long ... just wanted to give you some idea!
Love & hugs, JoAnn

Sarina
  • By Sarina
  • Posted June 20, 2008 at 8:38 am

Jolocny, Thanks so much for that encouragiment. We do often look at as a weakiness but I do believe God uses that and any trile to make us stronger and to trust him more. Thanks so much and Gods blessings Sarina

Sarina
  • By Sarina
  • Posted June 20, 2008 at 8:52 am

Jolocny, I was reading about your symptoms and Thats me to the tee I'm 39 now and started having the falls and numminess and tingling, and alot of pain and burning in my early 30's . Had a hip replacement at 36 and am still in pain every day now I have pain in my arms and numminess ,and burning too. But they haven't figured out what kindof leukodystrophy I have. I know what ALD is but Whats is Amn? God BLESS Sarina

jolocny
  • By jolocny
  • Posted June 20, 2008 at 6:56 pm

Hi Sarina! Thanks for responding! I had my right hip replaced when I was 39 ... funny how so many things happen to more than just one of us!? AMN is Adrenomyeloneuropathy - the X-linked ALD in adults. It just depends on who's looking at it. Johns Hopkins diagnosed me as AMN, when I first went to a ULF Conference I was considered a Symptomatic Carrier of ALD. One in the same, I guess, because it has it's onset in the 30s - 40s. For the most part I don't have the sensation of lower body pain. I have noticed that my torso is feeling much stiffer and I do drop things a lot more (my husband says that I hurry too much ... he doesn't see how often it happens). I don't know if that could be part of it or not - I look forward to seeing the doctors at the ULF Conference next month, and then at Johns Hopkins in a few months to ask more about that. Numbness comes and goes for me, I think it's more from the stiffness in my back shutting down some nerve relay. I pray that you get your diagnosis soon - it did wonders for me! Thought I was going crazy before I was diagnosed! Please keep in contact ... support is everything. Blessings, JoAnn

sgtkimsmom

Hi JoAnn. I'm new to this site, but not to AMN. My husband, Mike, has had it for 27 years and it seems to be entering a new phase. We will be attending the conference for the second time ( first time in 2000) and look forward to meeting others in our situation for the exact reason that is in your message. I, too, believe in the power of positivity and hope we can trade inspiration back and forth.

jolocny
  • By jolocny
  • Posted June 21, 2008 at 9:13 am

I can't wait to meet you at the conference! We last went 2 years ago - our first time. You and Mike are very aware of the problems and blessings of AMN ... I'm learning everyday, I have to admit that I didn't often share with my family all that was going on - but that's changed. I've also begun a new phase of AMN and now let them know all that's happening - I thought I was protecting them but realize that I just wasn't including them in the process, not fair! Our relationships are even better now, thank God! Every day is so different ... Peace, JoAnn

FBMOM1
  • By FBMOM1
  • Posted November 22, 2008 at 9:31 pm

Thank you for your positive inspiration. I will be contacting some of the people at the Kennedy Inst. I will keep you informed. I seem to be having an increase problem with my symptoms. I can hardly pick up my feet to walk tonight. I have had a very stressfull week and I am sure stress plays a very inportant part with this disorder. Thanks for everything. Keep intouch
Sandy

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