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JMH

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Joined
Jun 11, 2006
Messages
42
Reason
Loved one DX
Country
CA
State
Manitoba
City
The Pas
Just wanted to mention a few things...ask a few more questions.
After seeing a second neurologist who examined my dad and "confirmed" the diagnosis of ALS I have been very busy. Through emails and telephone conversations with the Manitoba ALS Society I have been in touch with a doctor's office in Wpg. MB. They seem very eager to help and are trying to get an appointment arranged for my Dad in the first week of August. Since he has had no EMG or NVC testing I am anxious for him to see a specialist. Dad was diagnosed with Familial ALS which still baffles me as there has been no history of ALS known in his family. He is scheduled for an MRI in mid-August.
At present he is dealing with decreased mobility - especially in his right leg, great fatigue, depression from losing my mom last November and not being able to do the great many things he could do such a short time ago. (Full time farmer and caregiver to my mom). We have obtained a walker for him to use, as he has had several falls. The CAT scan on his back showed spinal stenosis (the results I received after having to pay a visit to his doctors office). Apparently the doctor didn't consider it worth following up....
I just spent two weeks with Dad, giving my sisters back home a break and trying to keep Dad's spirits up.
He reminds us regularly that the neurologist has given him 3 years to live, which I find totally unacceptable as they told him this and sent him home without further ado. (Something that I hear is quite common, unfortunately.) I'm wondering when doctors have become so God-like that they can predict such things and actually say things like this to their patients.
I am finding a little hope that a specialist is interested in seeing him soon.
I'm wondering now what supplements, vitamins, etc. might be beneficial to dad. I've started him on Vitamin E & B and coenzyme Q10. Any advice would be welcome. Everyone has been so helpful in the past. Not sure whether I'm grasping at straws but would like to do anything that might help. Right now all Dad is taking for meds. are a sleeping pill at night and an anti-depressant in the morning.
Once again - thanks so much. Take care everyone.
JMH
 

ekoozmin

Active member
Joined
Feb 24, 2006
Messages
46
Hi JMH--First, what you are doing for your Dad is wonderful. He is so fortunate to have you on his side, looking out for him. You sound like you are very proactive and don't take "no" for answer very easily. This is good, because, while there may be no cure, or ven something to slow down his progress, you can certainly use these skills to make sure he gets everything he needs to live his life as best he can.

I feel the same as you, as do we all, that the neurologists ought to have their heads examined (pardon the pun) for the way they deliver the news of an ALS diagnosis. Clearly, they don't get any training on how to be empathetic. THey should have a social worker or a nurse deliver the news, good grief.

My understanding about familial ALS is that, if there are no other family members that you know of, then it has to be conformed by having genetic testing from. Do you know if that was ordered? My father, who has ALS, had a lot of different tests done in order to rule out other neuro diseases. After all that is done, the EMG is usually the way they determine if it's ALS. They just rule everything else out. I think this is one of the reasons no one can up with a cause for ALS, and why somepeople who have had ALS for 10 years or more actually have something else...but that's for another time.

My father also had spinal stenosis, which was discovered after he fell in 2003 and broke his neck. He had a laminectomy after that (a reaming out of the spine to enable better flexibility) and slid downhill after that until his ALS diagnosis in early 2005.

Lastly, he too has been depressed and despondent. My mother died 7 years ago and, even though he has remarried (to an alcoholic and psychotic woman), he still misses my mother so much. He knows that if she were alive, she would have the situation well in hand, whereas his current wife does everything she can not to support him emotionally or physically. We are all sickened by this. So, I envy your position, in a way, of being able to manage your father's care, to prop him up emotionally, and to be his eyes and ears as he goes through the medical maze. You've got a lot ahead of you.

Whatever you do, don't fall prey to those who would like to take advantage of your father's situation. There is no cure for ALS, and while taking vitamins and coQ10 probably won't hurt and may even help, be very, very skeptical of anything else. Dad spent too much money chasing the Lyme disease and mold toxicity routes as way to get cured.

Lastly, ask this specialist to refer him to a pulmonologist. Even better, ask how to get your Dad enrolled in an ALS clinic where he can go and be se by a team of specialists who will guide the two of you through breathing issues, PT, OT, speech, nutrition, and adaptive equipment.

I hope the antidepressants work for him soon. If he has the right emotional coping tools, then hopefully he'll be more willing to try things to help him adjust. I feel for you, I know what you are going through--it is going to be a long road, but we're here to help you travel.

Liz
 
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