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JMH

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Jun 11, 2006
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42
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Loved one DX
Country
CA
State
Manitoba
City
The Pas
I need to know if there is anyone who has NOT gone to an ALS clinic for an assessment and is being treated by their family doctor. I'm having some difficulty with my Dad. He does not want to go to the city again. The clinic says that he will not be able to get the perscriptions he needs if he is not assessed.
I don't want to force him to go if I don't have to. I asked the clinic about his family doctor getting a Physician's Manual for treating a patient with ALS, which I had read about. The woman said that there was a CD she could send his doctor but that he really needs to be assessed before perscriptions are given. I know this makes sense, I'm just afraid Dad won't go. A trip to the clinic means two nights away from his home.
Right now his perscriptions consist of Rilutek, a sleeping aid and a low dose of Citalopram for depression. He is experiencing a lot more trouble with phlegm, frequent urination (especially at night) and is almost totally wheelchair bound as his legs are too weak to use the walker. He is very tired all the time and I'm worried about his breathing. I'm scared that if he does not go for this assessment that he will not get the necessary care that he needs. I want to help him so badly.
JMH
 

Al

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Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
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Country
CA
State
On
City
NW of Toronto
Hi JMH. The problem with being treated by the family doctor is that most GP's might only see one or 2 ALS patients in their career. Even if he is seen by a Neurologist they might not see too many if they are not in a large city. The local Neuro can get him a referral to a Respirologist to address the breathing issues. The GP can write most prescriptions for symptom management that anyone else does as long as he knows which ones to write. The Physicians manual would help but he may need to be in touch with the clinic at times. If he is willing to do that it might be workable. If you can't get your dad to go back to the clinic. It's his life so you can gently prod him in the right direction but if he still has all his marbles then you gotta let him make the decisions. AL.
 

JMH

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Joined
Jun 11, 2006
Messages
42
Reason
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Country
CA
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City
The Pas
Al.....I guess I knew in my heart what the answer was going to be....it's just so hard. I love my Dad and I hate being the prodder. No matter how gently - I'm always scared he's going to resent me or I will hurt his feelings. I want him to get all the help he can. Sometimes I wish he would just get mad and want to fight this with everything we've got. It's hard to make him understand that I'm behind him. I still don't know exactly what he knows about ALS. He's such a tough old man, and I mean that with all respect. He never complains or questions, just accepts. And he is so tired - I'm sure his quality of life would be improved with assessment and treatment. Back to gentle prodding - leaving for his house Thursday. I'm 4 hours away and my husband and I are wondering if I'm going to have to move in with him as his greatest wish is to stay at home as long as possible. Thankfully I can still get a smile and a laugh out of him. I'm giving it my best shot. Thanks again for listening.
JMH
 

ronney525

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Dec 14, 2005
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well, i am in the u.s. and maybe your quality of care is much better in the northern territories... i have been to one assessment clinic in the 3 yrs i have been diagnosed. and that was mostly to appease family members. it was a waste of time and definitely waste of energies. i have a family dr. who will basically order whatever it is i need. and you can get better more practical info on these forums. i think they have these clinics mostly for their paperwork and to track different progressions for analysis and data gathering. for instance the nutritionist was not at all in favor of me making my own frsh foods for my feedng tube, dispite the fact i had put on weight and was able to maintain it, her concern seemed to be that she didnt know how to fill in on my chart how many daily calories i was getting and even went so far as to recommend i start taking just ensure so we would know. you see fresh foods didnt have a place on the chart.
imo, if you can manage on your own, and your dad doesnt want to go. then dont make him. but you need to know what info you will need, ad what to ask for.
i personally plan to manage my own care. make decisions based on lots of questions and answers. oh yes, i also went to the clinic so i would get registered, you see they would not be helpful unless i was documented and rregistered.
so, everyone has their choices, and i choose not to go for assessment again.
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
I'm sure you're not the only one ronney looking after yourself.and doing well. If you have a GP willing to do that and haven't got to the point where you need a OT,PT,RT and others then as I said it can be done. They can be seen at home as well but I'm not sure if the town JMH's dad is in has that. Manitoba is about like Montana or South Dakota when you get 20 miles away from the 3 big cities.
 

jacquelyn

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Mar 11, 2006
Messages
30
Hi JMH
My Dad too has ALS. We too do not live in the city so we have limited commuication with the neurologist. Our GP is handling Dad because it is simply phyically impossible for him to get out unless we take him by ambulance (our GP makes housecalls). Our GP has been excellent and comes at a moments notice. We are aware that he doesn't have a whole lot of experience in dealing with ALS patients but he has contact with the neurologist and the repirologist that has looked after Dad's case in the past. My Dad is completely comfortable with him and looks forward to his visits every week. The way I see it is if this is what Dad wants and what gives him comfort then I am all for it. The neurologist basically told us that he has done all he can do anyway.

My heart and prayers go out to you. I know exacally what you are going through. I'd love to talk to you. If you want to email me, feel free to do so. Hang in there!
 

JMH

Active member
Joined
Jun 11, 2006
Messages
42
Reason
Loved one DX
Country
CA
State
Manitoba
City
The Pas
It sounds like you have a wonderful GP. I'm hoping my dad's doctor will be able to help us in the same way. I thought house calls were a thing of the past. How fortunate for you. I will let you know how we make out in the next few weeks.

My heart and prayers go out to you also. Take care.
JMH
 
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