My brother was diagnosed with WD in the summer of 2007. He is 56 years old. Was able to start his treatment in Michigan Jan. 2008. He experienced a great set back and was hospitalized due to increased siezures. A decision was made to put him into a coma to help control the siezures. He is a strong man and was able to pull through. Once he was strong enough he was able to return to Canada and hospitalized over a period of 9 months.
He returned home finally September 08. Our father died in November 08 and I believe he has been struggling. Back in Hospital December 08 for weeks. In April 2009, he was assessed and has lost his property rights to his power of attorney. In May 2009, lost making his own medical decisions. His family will not have him back home and would like to put him long term care.
My brother can still speak but needs time to process the question before he can answer. He is very weak and uses a wheelchair and has parkinson like symptoms. Recently he arrived back from an f/u appointment with the Doctors in Michigan. They were pleased with his copper levels and felt that things were on track and through excercise on a daily basis felt there is no reason he wouldn't get stronger. His Neurologist was not that optimistic and felt that this is a good as he will get. His frontal lobe has been affected and this may not be reversed.
I am not a health professional but although the damage to the brain might be permanent is there not a possibility that the brain can re-route and find different neural pathways to perform the same task?
I do not believe that Long Term Care is the best place for him but his family does not want to look at any other options. There has been a lot of hurt feelings and although his POA is making sure his appointments and medications are being met.....there has been no discussion as to treatment programs or a medical coordinator to set goals for him. I feel as though hands are being thrown up and he is being left behind.
Does anyone know of where he could live that would assist with treatment /care and have a sense of independant living? He currently lives in Southern Ontario,Canada. Recommendations or similar situations would be greatly appreciated.
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Need Advice
- By lostbb
- Posted July 8, 2009 at 10:04 pm · 3 replies
- In Treatment options
- Shared with the public
Explore topics in this discussion:
Zinc acetate Tetrathiomolybdate Ativan Seizures Baclofen Dilantin Pain Liver transplant
3 replies
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- Newest first
- By JersMom
- Posted July 9, 2009 at 12:41 pm
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I am so sorry to hear of your brother. All of us who live with this disease know too well how difficult the journey can be. In your case even more so since you cannot help make decisions on your brother's behalf.
I am confident you will receive much information to help you through this from this site.
Perhaps you could share with us what treatment your brother is currently on? Meds, dosages etc. It may help us to relate our own circumstances better to you.
First and foremost do not give up and do not allow Doctor's to bully you. They do not know everything and sadly it is the WD family that must fight for second and third opinions.
Does your brother's family frequent this site? If not, maybe they might be interested in the enormous amount of information here?
Take care and hopefully we will be able to help.
Heather
- By lostbb
- Posted July 10, 2009 at 11:38 am
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Thank you Heather for your words of encouragement and kindness.
After speaking with my other siblings we are under the understanding that our brother is currently on Dilantin for seizures, Levo-dopa for parkinsons, zinc for WD, and I'm sure he's on some others. In the Michigan study he was given tetrathiomolybdate (TM)
The zinc he is on is only available in the US and is ZINC Acetate, he was on the TM for the full duation but only the mild form.
Michigan Dr. originally thought his copper levels were high but when he coverted to the measurements they used his levels were good. His liver is functioning well and he saw no need for a liver transplant or persuing rejuvination.
The family is aware of this site. I am hoping my brother will also connect as I am sure he would benefit however he does not have access to an computer at this point.
- By JersMom
- Posted July 10, 2009 at 1:47 pm
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Is he not on Trientine now? By the info you have given, he has Neurological Wilson's. My son was diagnosedJuly 2008 and started on Trientine and Zinc at that time. He still is on both! I live in BC and have gotten the Trientine covered by BC Medical ($1000.00/ month) the Zinc is over the counter from the pharmacy. Trientine is 1750 mg/day divided in 2 doses 12 hours apart. Zinc is 2 doses of 50 mg 12 hours apart.
Jeremy is on Baclofen to help control spasms and Benzotropine for parkinson's like stuff. He also takes Ativan to help him relax and maintain some control of his body. He has a Fentinol patch for pain and is given Dilodid on occassion for breakthrough pain.
As far as I know, he should still be on the Chelater drugs to remove the built up deposits in his body, liver, brain and eyes. Seriously, I think you need another opinion about this.
I was lucky to have a GI doctor who actually worked in Toronto with Wilson's patients with EVE ROBERTS. She is a leading authority on Wilson's in Canada.
Dr. Eve Roberts
Hospital for Sick Children
Phone: (416) 813-7733
Email: eve.roberts@sickkids.ca
I have also spoken with Diane Cox in Edmonton.
Diane W. Cox, Ph.D, FCCMG, FRSC
Professor of Medical Genetics
Departmentof Medical Genetics
8-39 Medical Sciences Building (office 43B)
University of Alberta
Edmonton, Alberta T6G 2H7
Phone: 780-492-7501 (direct)
Medical Genetics Office: 780-492-0874 (Secretary)
Fax: 780-492-1998
Jeremy is howing improvement day by day! He is currently in a care facility because I am unable to care for him full-time at home. Eventually he will be able to come home.
I hope this helps? Keep in touch!
Heather
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