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Fahr's Disease

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Old 05-06-2015, 03:00 PM   #11
o00o_itz_brat_o00o
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I have a question. My dad has fahr's disease and my brother dont want dad driving his kids places, but my brother wont tell him and when i am babysitting the kids dad wont listen to me when i put my foot down.
What can i do?
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Old 05-06-2015, 05:48 PM   #12
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Hi there,

First, I'm sorry your father is struck by such a difficult, rare condition. Second, shame on your brother, leaving it to you to try to impose his will to protect your niece and nephew, you are trying to do the right thing in difficult circumstances.

Obviously I do not know how bad your dad has gotten, but when my mum was afflicted with Alzheimer's she became a danger to herself and everyone else on the road. Her Dr revoked her license, but then had to call the Police to stop her driving away from the Clinic she was SO bad. My sister had to drive 75 miles to calm her down and take her home - they held her at the Clinic for her own safety. It was traumatic, and we had to remove her keys, then sell her car quickly, but within a few weeks she got used to taking taxis or being driven everywhere. I think it came as a bit of relief after all the stress for her in the end.

In the meantime, talk to your brother, tell him your safety concerns and perhaps come up with a plan to sit down quietly TOGETHER with dad and lay everything on the table. Do not let everything rest on your shoulders.

Good luck,

Dave.
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Old 05-06-2015, 06:07 PM   #13
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Welcome o00o_itz_brat_o00o.
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Old 05-06-2015, 08:30 PM   #14
MelodyL
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Originally Posted by o00o_itz_brat_o00o View Post
I have a question. My dad has fahr's disease and my brother dont want dad driving his kids places, but my brother wont tell him and when i am babysitting the kids dad wont listen to me when i put my foot down.
What can i do?
This actually happened to a friend of mine who lives down the block from me. She is about 90 but admits to being 88. While she can be forgetful, she can outwalk me anytime. Yesterday she was running. She was an avid driver until a few months ago. They had been trying to get her to stop but she was adamant. Her children live about 2 hours away and one lives in another state. They want her to sell the house and move in with one of them. She refuses. She says "All my friends are on this block". When someone is that stubborn, you can't reason with them. You have to take the bull by the horns. This is what her daughters did. They went down to the Motor Vehicle Department. (They were all cahoots). My elderly friend was told to come down to the Motor Vehicle Department because at a certain age one has to take another eye exam. Her children drove her there. They left my friend's car in her driveway. When she got to the Motor Vehicle Department (they were in on the whole thing), they gave her an eye test, told her she failed and she would have to turn in her keys (or plates) or whatever. She had no choice. The next day I ran into her and she was mad as hell. I said 'Angie, what happened". She said "I can't drive anymore" I then carefully and patiently explained why that might NOT be such a bad thing. She wasn't having any of it. She complained to everyone who would listen and she would say "They tricked me, they made me go down there, I can drive, they tricked me". She could do NOTHING because they took her license. They made her give it up at the Motor Vehicle Department. Now I don't know if this was legal or not but it did indeed get this 90 year old person off of the road.

Think about it.

Melody
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Old 05-07-2015, 05:17 AM   #15
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I told mom have a talk with the doctor because the doctor can have someones licence taken right?

When dad was first diagnosed the doctor was shoced he was still driving but said he could drive in the daytime and only within like 5 miles.. we can stop him from driving at night because mom is home but he still goes farther than docs orders if he feels like it...

Sometimes his tired days are a blessing
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Old 05-07-2015, 06:40 AM   #16
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Driving restrictions are pointless if someone ignores them. Try to get your mom and brother to see the consequences of him causing an accident wrecking your - or someone else's - family. Then take Melody's advice and get him to the Doctor's or DMV and report on his behaviour and all your concerns.

Tell everyone it is better to upset him than bury him.

Dave.
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Old 05-07-2015, 08:57 AM   #17
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Quote:
Originally Posted by EnglishDave View Post
Driving restrictions are pointless if someone ignores them. Try to get your mom and brother to see the consequences of him causing an accident wrecking your - or someone else's - family. Then take Melody's advice and get him to the Doctor's or DMV and report on his behaviour and all your concerns.

Tell everyone it is better to upset him than bury him.

Dave.
Now you know what to do. You are not taking his dignity away, you are potentially saving his life and the lives of others. His reflexes are off and you MUST do whatever is necessary to ensure his safety. You would never hand the car keys over to a 12 year old right? Same way to think about it.

Best of luck.

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Old 05-07-2015, 09:52 PM   #18
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Default Driver's License Renewal Due/Testing

Recently received notice of my Driver's License Renewal stating I was due for driving testing. Since my Spinal Fusion/pain and 24/7 PN pain, including narcotic meds, have not driven in years; but did like knowing I had the license in my purse.(The last few Renewals only wanted the fee for renewal; no testing; I was hoping this time would be the same....not.)

Even as a passenger, I find sitting in a car painful. My husband has been encouraging me to practice driving with the hope of passing the test and getting my renewal. I know my reflexes are not there; plus concerned about possibly having an accident or worse; hitting someone. Testing would most certainly show the narcotic meds I am taking.

I know I need to let go of my Driver's License in exchange for a State ID card. It's just one more reminder of the loss of my independence. Sad; but necessary.


Gerry

Last edited by ger715; 05-07-2015 at 11:44 PM.
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Old 03-14-2019, 08:17 PM   #19
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My son has it, too. He is enrolled in a study in the Rare and Undiagnosed Diseases program at NIH, and they're looking for more participants, so anyone with Fahr's should really contact them to benefit all of us. I also found a lot of information at the website of the National Organization for Rare Diseases -- look under "Familial Idiopathic Basal Ganglia Calcification."
Hello,

My 25 year old son was recently found to have calcifications in the Basal Ganglia - he is due a 2nd MRI in May. I am desperately researching EVERY thing I can find out about it. My son has started showing symptoms (fainting, mood swings, verbal aggression, some involuntary movement but NO seizures) I am flying to Cuba after the MRI - as I found a Neuro Clinic there (and they have cures for things the rest of the world can only dream of -hopeful - but a realist)

If you don't mind my asking how did your son get in the study, is there an enrollment website or someone I can contact. I am not wealthy but will sell everything I own for my only child's treatments and well-being . I beg those that know ANYTHING to share their findings (whatever I find I will share will all that care for it)

I thank all of you in advance,
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Old 03-14-2019, 11:45 PM   #20
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Default Basal Ganglia Calcifications, Fahr's disease, Brain diseases

Hello,

My 25 year old son was recently found to have calcifications in the Basal Ganglia - he is due a 2nd MRI in May. I am desperately researching EVERY thing I can find out about it as it a rare genetic disorder with no cure. My son has started showing symptoms (fainting, mood swings, verbal aggression, some involuntary movement but NO seizures) I am flying to Cuba after the MRI - as I found a Neuro Clinic there (and they have cures for things the rest of the world can only dream of -hopeful - but a realist)

I've read there are studies that I'd like to get my son involved with. Any other sufferers, or family members that know of any advances, research or new therapies, someone I can contact. I am not wealthy but will sell everything I own for my only child's treatments and well-being . I beg those that know ANYTHING to share their findings (whatever I find I will share with all that care for it)

I thank all of you in advance,

Jenny
I will not rest until I find a cure.
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