59 years old.
December 2019 - the last day at work..
January 2022 joined old people’s home. Using the wheelchair to go to the toilet and back to bed. Using the urine bottle. I need 24h care. Brain and arms status is OK. Legs are very weak. Taking the additive Cerluten.
HalloIch bin eine Schülerin, und halet bald meine Abschlussarbeit über die Krankheit Adrenoleukodystrophie. Ich suche jemanden der die Krankheit durch machen muss und möchte gerne ein paar Fragen stellen, ist natürlich kein muss aber sie dürfen sich gerne melden. Möchte gerne eine Geschichte hören von einer Person, die es erleben muss.
Danke schon im Voraus für die Rückmeldung
Being that cerluten is a brain peptide, do you have cerebral ALD? I only ask since I have ACALD and I am 59 years old turning 60 this year. Covid really affected me conditionally. I'm deconditioned to my former self. It's been difficult.
My brain MRI showed the changes typical for ALD. I was suffering depression and strong ear ringing. Cerluten fixed all of them. My brain MRI was normal after one year with Cerluten. No efect on the legs muscles status. The muscles degenerative process was not broken.
Legs are the result of spinal involvement that we all have with AMN.
Cerluten It’s so expensive! Based on your knowledge about it, do you think it’s necessary if your brain is fine currently with the disease? Does it just target the brain or nervous system as well?
If your MRI was normal, it certainly passes though the blood brain barrier. Are you still on the MIN-102 trial, too?
So at this pain are your legs the biggest problem? I'm 56 and it seems this last year in a half my legs have got extremely weak and walking is annoying but I'm still doing it barely. I really should be in a chair it would be much better on my body
I have fallen over the foot and I am not able to recover after. I have not enough power in my muscle. I happened several times last 5 years, i was walking using crutches, but recovering was working. After the last fall i must use wheelchair and i need care.
Will you be able to recover now that your in a wheelchair or your legs are done now you think?
I think my legs are gone.
So are independent men with even paralysis. New mobility is a publication for all disabled. Some have their own personal attendants. Perhaps, adult assisted living is better than a nursing home which has its own high risk of all sorts of mishaps. It's a battle that we all must fight. Use it or lose it. Physical therapy and my own faith and stubbornness has pulled me through. That is with my own death sentence such as Adult Cerebral ALD. You are the only one on any forum with this admittance to a nursing home unless you are dying with cerebral ALD or hospice. This might send a uninspired message to all of us. You're not dying. I still don't know why 24 hour care is required if you're not dying with cerebral ALD. Hospice sometimes doesn't involve even 24 hour care unless morphine and fentanyl pain management. I'm quite blunt. Blame it on pre frontal cortex damage, et....
I have 24 hours care. Any time I can ring and the person is coming in few minutes. The bathroom at home is not prepared to be used by paralysed man like me. Staying at home is not an option.
Your posts are very informative SongStream, and they are an encouragement to read. My son is 31 years. In 2015 (age 25) adult cerebral ALD was diagnosed following MRIs. His gait was merely unsteady at that time. Three years ago AMN progressed, and he is now wheelchair bound. He cannot walk at all, but is very positive, and gets on bravely with his life at home with us - his parents. His journey so far is that AMN has taken away his freedom, but it does not appear that cerebral ALD has progressed since 2015. This is difficult to quantify, but it seems that way to us. He is spared further MRIs. We don't think they will help him. His journey with adrenoleukodystrophy shows it can be so different for so many people affected. I'm going to research Cerluten.
Kranal
Hi, Kranal. I, too, am inspired by your posts as well. Yes, my AMN has progressed (News Alert: I haven't worked on walking all of my physical rehab exercises in such a long long time and I am so deconditioned as to my former self meaning that walking is laborious and exhausting grueling with a cane. I have mastered wall surfing which enables me to go use the bathroom and get around in home along with using a Whill Ci powerchair indoors and outdoors (to enhance and expand my life) and help me get around .Use it or lose it and I am losing or lost it. One must think of AMN as rehab or it will get worse. I am tired and defeated. But I still fight to be independent as I live alone. I am not paralyzed nor do I need admittance to a nursing home. Maybe if I break a hip which is lethal at my age. Cerebral lesions are now stable and I do not have any symptoms aside from MCI (mild cognitive impairment) which I know is a precursor to dementia. But Stanford has recommended a neuropshychological exam which can be used as a baseline with ALD cerebral. Hoping that Min-102 is the answer for me. It is now in clinical trials for child cerebral. This is an exciting time! I refused a bone marrow transplant which is high risk at my age alone (young 59-60). Cheers and best wishes to your son.
Good Morning SongStream. That is very interesting that you refused a bone marrow transplant. NHS Glasgow and Clyde were prepared to go ahead with a transplant, when he was age 26. All the preliminary checks were done, but he refused to sign the consent form. It was fear. As parents we thought it was the only way forward. To be fair, his Loes Score was approaching double figures, so it would have been the wrong route to take. Scotland does not have the ALD experts you benefit from in the US, so we just coasted along hoping for the best. The best has happened, and cerebral progression has not progressed at the pace the scientific papers have suggested. Again, this shows everyone's journey with this condition is so different. Your journey is your own journey, and keep doing all these exercises. You are very positive - as my son is too. In a few days time his physiotherapist is supplying him with an EasyStand Evolv, and he is looking forward to this development. It is just a wheelchair, which you ease up with a lever. This will be progress, because the mobility he achieved at the Queen Elizabeth University Hospital in Glasgow has diminished. Your 'use it or lose it' mentality is correct, but oh so difficult! Do not be discouraged. Keeping up regular exercise is so, so difficult, and you will get back to a routine when you are ready. Don't worry about dementia - my mother's mantra was 'Do not worry about the day you will never see'. My son's dementia is not progressing at the pace the medics thought it would. Every good wish to you. Every day is different, and some days you'll achieve more than the last. Kranal
I'm 51, and to be honest I won't have bone marrow transplant.
I've had a close call with an extra lesion forming and my neurologist was going into overdrive, banging on about BMT.
No. The chemotherapy, then the transplant. And I'd only have to have it once the brain damage has started. It might halt the progress, but what state would I be in?
Bad enough now with the fatigue and spasticity. All I have is my brain.
But I'm not being negative. If I was younger and I was offered it as a preventative measure I'd be all in.
I eat well, healthy food, try to keep my body active, work my brain plenty.
So far, so good.
It's my understanding that Bone Marrow Transplant halts brain lesions, if caught early enough, but it does not stop the progression of AMN.Kranal
Absolutely right. If it halted physical progression, I'd have demanded it years ago when I was fully up and about. Slight limp was all.
Then again, there were two posts on here one was from a 20-something in Sweden who was offered it to halt physical progression. I believe he was going to go for it.
Another was from a regular poster, and I'm ashamed I have forgotten his name, we talked a lot, he and I.
He was in 24/7 neuropathic pain, he was going in for a BMT to try and halt the pain.
This was just before the old Coronavirus hit. I don't believe he ever posted again.
So many unknowns with this disease.
Thank you for sharing your thoughts about BMT. I'm nearly 36, and I think that I would absolutely go for the BMT if I was conclusively developing cerebral disease. I know it's a long, difficult process, but the idea of going cerebral (and all that goes along with that, like eventually being unable to recognize my wife and children) is unacceptable to me.
I'm not sure if you are aware, but we recently (less than four weeks ago) lost a young man with AMN who had developed cerebral disease, a 37-year-old who many of us knew personally. He had evidently decided not to pursue BMT, and his progression, decline, and death were quite rapid. This has been a difficult last few weeks, because it just makes all of this feel so much more real. And it's caused me to really consider what I would choose to do if I'm ever in that situation. Hell, I get my annual MRI next week, so we'll see. As of last year, I had no Loes score. We'll see...
You are the man, SongStream
Can't ever give up with this filthy little disease. Maybe easier said than done at times, but whenever I go to my neurologist I see people with terrifying diseases, Multiple Sclerosis can be bad enough, Parkinsons, unbelievable disabilities, proper Steven Hawking at times.
And he was given 2 years to live when he was 21 years old.
A Brief History of Time is a cracking read as well.
amazon.com/Brief-History-Ti...
I see other people far worse off than me, just getting on with it. On balance, I ain't got it so bad.
How old were you when you first noticed symptoms? 
Alinker device for walking
Very sad mother of a young boy
Do any men with AMN urinate in their beds at night sometimes?
Hello everyone, A question about walking sticks.
