Can anyone help me

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trish

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Feb 21, 2007
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PALS
State
Natal
City
Durban
I am from South Africa. My husband was diagnosed in Aug 2006.He was diagnosed by two neurologists.He was given a perscription for Rilutek,and that was it.Was not told to come back again. there are no Als clinics in the country,so he has not seen any Dr since. I read on the forums of people going back for check ups,and further tests. Can you advise me on what tests should be done. From the insert on the Rilutek pkt, We noticed that you should have a liver function test done. This he has done.
I have read on the forum about a product called Thick It that thickens water.I can not find it in SA. As its made of Corn starch , we tried Mazina, but without success. Have you any advice of other products that can be used.
I would like to thank the person on one of the forums, who mentioned taking Purity apple sausce after a meal, to help with phlegm. My husband says it helps a lot.
Thank you to all of you for your imput in this forum, it has helped us a lot.
God bless you all
trish
 

Al

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Hi Trish. When I first started taking the Rilutek the blood tests were done every few weeks. After a few times it was done every couple of months in case it started to damage the liver. I assume an EMG and NCV test were done by the Neurologist to diagnose your husband. An MRI is usually done to rule out tumors and spinal problems. A lumbar puncture can be done as well.
I am not sure about the Thickit because I don't use it.
AL.
 

CindyM

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Hi Trish. Sorry to hear about your husband. It will be harder without an ALS clinic nearby but thank goodness for the internet. We'll try to help as much as we can. I first learned about thicket at my Mom's nursing home. Sometimes elderly patients have trouble with swallowing for a variety of reasons. They probably have a different term for it in your area. Do you know a nurse or anyone who works with the elderly? I bet they can advise you. Good luck and please keep in touch. Cindy
 

trish

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Joined
Feb 21, 2007
Messages
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Reason
PALS
State
Natal
City
Durban
Thank you Al and Cindy. I will try the hospice in my area,and old age homes. It is such a comfort to know that there are people I can turn to for good honest advice. God bless all the people who visit this forum
trish:roll:
 

hboyajian

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Trish, your husband will also need periodic pulmonary function tests to check how the disease is affecting the musculature operating his lungs. My dad had these once a month. He was at a very advanced stage when he was diagnosed, so others may not have had them as often. He also had his blood oxygen and CO2 levels checked when it was clear that his breathing was deteriorating to the point that he would need a bi-pap machine to assist.
My dad used thick-it to help him drink liquids such as juice and water, but he also had other blended drinks which he actually enjoyed more. His favorite was fruit (bananas and strawberries or canned peaches) blended with yogurt. We also sometimes made it with ice cream to increase the calorie amount since he had lost so much weight. I experimented adding protein/vitamin powder to the drink as well, but it was somewhat hard getting it the right consistency without lumps which would choke him. I also tried blending canned peaches with apricot nectar to thicken it up. This was a little too chunky, but if you had a really good blender it might work.
If your husband is having difficulty swallowing solid foods, this could become worse over time, and he may want to get a surgically inserted feeding tube. This is something a doctor familiar with ALS should discuss with you. My opinion is that when you have questions, it is time for an appointment or at least time to speak with the doctor over the phone to determine if you need an appointment. This is a disease which progresses at different rates in different people, and I sincerely hope the doctors you have access to will help you make the transitions and get the assistance you need at each successive stage of the illness.
 

trish

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Joined
Feb 21, 2007
Messages
6
Reason
PALS
State
Natal
City
Durban
Hi hboyajian.
Thank you for all the good practical advice.will try all your sugestions.
Thank you once again for taking the time to answer me
trish
 

hboyajian

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Trish, I forgot to explain that we added juice or other liquid to the yogurt or ice cream/fruit mixture to make it the right consistency for my dad to swallow. Later on we added Ensure to it, which is a nutritional drink containing protein, vitamins, minerals, and carbohydrates. We used the vanilla flavor which has no food dyes.
The other thing periodic appointments with doctors are important for is to get prescriptions for the various adaptive equipment and assistive help you will need. It is my opinion that they ought to have given you a prescription for physical therapy and if they haven't I think you should ask for it. The exercises my dad was doing to keep each part of his body flexible and functioning as long as possible were essential to his mental health as well, since it was one of the few things he could do to help himself. If your husband is having difficulty walking, the doctor should give him a prescription for a wheeled walker. Many of these have a seat so that the person can stop and rest whenever necessary. If he is having difficulty holding his head up, there are braces available. If he is even less ambulatory, he will need a prescription for a power wheelchair. These are very expensive, so I hope you have insurance which will pay part or all of the cost. If your husband is losing weight, you could ask for a prescription for one of the nutritional drinks (such as Ensure). This can offset the cost, and pharmacies can order it for you by the case.
 

AlmasDaddy

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Joined
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Messages
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trish said:
I am from South Africa. My husband was diagnosed in Aug 2006.He was diagnosed by two neurologists.He was given a perscription for Rilutek,and that was it.Was not told to come back again. there are no Als clinics in the country,so he has not seen any Dr since. I read on the forums of people going back for check ups,and further tests. Can you advise me on what tests should be done. From the insert on the Rilutek pkt, We noticed that you should have a liver function test done. This he has done.
I have read on the forum about a product called Thick It that thickens water.I can not find it in SA. As its made of Corn starch , we tried Mazina, but without success. Have you any advice of other products that can be used.
I would like to thank the person on one of the forums, who mentioned taking Purity apple sausce after a meal, to help with phlegm. My husband says it helps a lot.
Thank you to all of you for your imput in this forum, it has helped us a lot.
God bless you all
trish
Hello Trish,
here is a link that I found with a phone number in South Africa. Check it out and see if they can offer assistance. They may have, or know of resources in your area. The bottom links are manuals that you may find useful. God bless you, and your family. Michael
http://www.mndallianceresources.org/documents/PDF/What%20is_%20(S.%20Africa).pdf

http://mndallianceresources.org/documents/pdf/ALSA_manual1.pdf
http://mndallianceresources.org/documents/pdf/ALSA_manual2.pdf
http://mndallianceresources.org/documents/pdf/ALSA_manual3.pdf
http://mndallianceresources.org/documents/pdf/ALSA_manual4.pdf
http://mndallianceresources.org/documents/pdf/ALSA_manual5.pdf
http://mndallianceresources.org/documents/pdf/ALSA_manual6.pdf
 
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