AMN Canadians.

[tropicalflower]

Are there any Members in Canada?

Thanks

[bluejadedwho]

Me!

[tropicalflower in reply to bluejadedwho]

I live in Vancouver

[bluejadedwho in reply to tropicalflower]

I’m in Ontario

[Aaron98 in reply to tropicalflower]

Do you ever make it down to Seattle/Tacoma, tropicalflower? I live between the two.

[tropicalflower in reply to Aaron98]

Sorry, we don’t get to Seattle often

[Francois2888]

I live in Montreal!

[aaa291 in reply to Francois2888]

I am also in Montreal

48 years old with AMN, was diagnosed in 2003, found about the gene in 1996

[easygoin1]

I'm near Edmonton.

[nan17]

HI, I live in Toronto. I believe I am the only woman with active symptoms living in eastern Canada. I too am searching for others.

[tropicalflower in reply to nan17]

Hi nan17, sorry to hear you have active symptoms. Yesterday I saw a highly regarded endocrinologist, though I definitely have the dreaded gene she is not convinced it is responsible for my mobility issues because usually less severe in women. I would be interested in what you mean by active symptoms if you don’t mind sharing.

Good luck to you!

[nan17 in reply to tropicalflower]

Hi TF, My major limitation is mobility. I walked with a limp that progressed into stiff legs that have a distinctive, diagnosible movement, and 2 months ago my left knee collapsed. I now require a walker to walk because of poor balance, very slow walking (partial paralysis) and an unreliable knee. The prognosis is that I will eventually wind up in a wheelchair, but I keep working out and doing yoga to slow that down. The paralysis also aggravates bladder problems. On a positive note, women don't have to worry about the cognitive issues that challenge many of the other gender.

Symptoms vary widely. I think they are still working on coming up with names for all these variations. Good luck with your mobility. Nan

[tropicalflower in reply to nan17]

Thanks, I don’t have stiffness, I have freezing and stutter steps.

Sending you all good wishes.

[Rebel64]

I live near London Ontario Canada. I have been a silent reader on the site for some time now. I have been touched by all the raw and honest posts from members and cried with many as I can relate or empathize with their experiences.

My son was diagnosed in 2017 after doctors searching for almost 2 years and as soon as I researched ALD, I knew he had got it from me. It explained my feet stumbling and my falls which started in my early 40s. At the time, I had just gotten my knee replaced and the post-op spasms were incredible wrenching my leg around past my normal range of motion causing significant distress! That’s also how I knew because I had never heard of this happening to other post-op knees (I’m a nurse).

I had a bad knee from a work injury (another fall) and had blamed that for my progressing clumsiness. I tore my rotator cuff once as I plowed into the ground running after my grandson. I thought my knee had given out but because I’m more aware now, it’s actually because my feet land wrong sometimes when I walk as my brain doesn’t sense what position they are in.

Thankfully the spasms are rare now but the stiffness in my legs and numbness in my feet have gotten worse over the last months. Tends to get better as I get moving but the first few steps are awkward and painful at times. I have learned to “walk strong” when I get up from sitting with a “fake it till you make it” attitude

I saw a neurologist last fall and was shocked at the level of neuropathy in my feet-I could not distinguish sharp from dull-distressing! Burning pain alternates between very low back, thighs and calves but can be not too bad some days. The more I move, the better though. I was told there was only one other woman she knew in London with ALD. All I will say about incontinence issues is always take extra clothes along because you never know when it might hit!

As a nurse, I have read every scholarly research paper I can find on ADL, and specifically how it affects women. Much of what you read says that women are only “carriers”, rarely having symptoms but I have learned through a number of robust studies that women experience varied symptoms from nothing, to mild to extremely debilitating even in the same families. What I have particularly discovered through my reading is that whether men or women, we are all unique.

No more elaborating about my symptoms.... If I could, I would take on all the symptoms my 33-year-old son experiences and will experience so he could live free of ALD and not be known as “the guy with the limp” in his workplace or face what might lie ahead. My one daughter did not inherit the mutation (thank God as I was terrified for her 3 young boys!) and my other daughter is awaiting results from Baltimore as our blood had to be sent there from Canada for testing. One thing I know from a lifetime in healthcare is how quickly life can change so I have decided to grasp each day and do all I can until the day comes I can’t.... one day at a time.....

So I close in saying THANK YOU to you all for sharing on this forum so we don’t feel like we are facing our journey alone. I am encouraged by the progress I hear in studies that some of you are part of that could benefit by slowing progression or improving quality of life which is immense even if a cure is out of reach for now. Bless you all as you work through your own “one day at a time”!

[tropicalflower in reply to Rebel64]

Thank you for your open honest post much appreciated. I am working on “one day at a time”. Every night my husband says “another day honey”.

[Klorda]

What a warm uplifting post! As I look back in my past experiences, I was always falling too and attributed it always working out, running, and not watching where I was going. Now it all makes sense. I am pretty mobile for now but walk very slowly and hold on to anything stable where available. I do have neuropathy from my waist down but take no medication. It hurts worse some days than others but I think I have a high tolerance for pain. Hopefully, these are the only symptoms I will experience but we all never know---that's the scary part.

[Rebel64 in reply to Klorda]

Thank you Klorda! I am glad you found my post uplifting. I find encouragement and positivity goes a long way in reshaping our perceptions. I hope for you that these are your only symptoms. The unknown can be scary for sure and since we all vary in our symptoms you can’t even begin to predict how it’s going to go. So many other diseases have similar progression so you can brace yourself for the road ahead and have some idea what to expect. One day at a time...

[COwithAMN Administrator AMN EASIER Volunteer]

Thank you tropicalflower for starting this post, and from all of you for sharing your experiences. I was especially interested because before I came back to live in the U.K., I had lived for 15 years in Canada - 8 years in Kingston, Ontario and 7 in Toronto. I therefore know Eastern Canada well. I have dual UK/Canadian citizenship and have many Canadian friends who visit my wife and me in London (U.K.).

On the subject of females with AMN, one of the best sources of information that I have found is here: adrenoleukodystrophy.info/c...

All ladies who may have not read it recently will find it valuable I am sure.

I read somewhere (I forget now, but maybe in the above site) that women often have worse bowel/bladder problems than men.

Best wishes everyone

Chris