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hansvin

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Dec 2, 2015
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Loved one DX
Country
IND
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Delhi
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Delhi
Hi,

Today I have started to believe that my mother might have ALS (still in a bit of denial). She has lost the ability to walk as he other leg is also affected now including the ability to easily turn sides. So far, she has problems in lower limbs only (somehow I am just hoping it will stay there).

We are in India and here are our issues. If you have any ideas, respond to these points. We don't have a concept of ALS clinic. So the comprehensive treatment and care is impossible. I have researched everything I can on the internet and trying out different things. So I am asking few questions here:

Drugs and Supplements: Doctors have given her Riluzole (free in India), Vitamin E, B12 and couple other medicines. I wanted doctor to think a bit more and give other things which can be helpful. She is currently going through Acupuncture (they come home and do it - thankfully I am in India and can afford it), taking Acetyl L-Carnitine 500 mg, will be taking Inosine soon (that's the one other doctor suggested we try) and I am considering L-serine. Also we have tried some ayurveda medicines (believe in it for many reasons but not necessarily for this). For example Ashwagandha has helped a lot of people in my family for nerve energy and fasciculations.
Your thoughts on what else can she try/remove?

Assistive devices: We have a maid who stays for 8 hours or so to help her with daily activities and give massages. Also she cooks for my parents but that can't help with everything. Any device which can help her getting from bed and change sides? Also device which can help her getting on-off from wheel chair?

Stem Cell therapy: I know, I know. Before you start hating me for asking this but think it is hard to deny, given the trials going on, it shows some hope. The side effects are well established and under control. I have spoken to the doctors and clinics offering this treatment ( well researched - I didn't go to clinics offering blind hope). They mentioned that they will not promise anything as they can't (which I appreciate) but there is a very little chance it may provide some relief in the progression. One of the consultant doctors there is diagnosed with ALS herself (you can research Dr. Himangi Sane) and runs ALS foundation in India. The cost of treatment is honestly not outrageous (against the belief). To convert to dollars, it must be less than $4000 which includes follow up and everything. What are your thoughts on this? Even if it can provide relief for sometime, it is worth it for us.

Also here are few things I am doing:

1. Planning to get a swallow tattoo for hope (my mother's name means Hope). This is inspired by Dr. Bedlack's story which Nikki posted. Thanks very much for that.

2. Work towards awareness in India. Once I have some financing, I would like to have an ALS clinic in India so people like me have direction. Wish me luck.

3. Pray that the science finds solution to this soon so we no longer need this forum.

Thanks very much everyone for reading and being here.

Vineet
 

Atsugi

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In my opinion, the important thing is to keep your mother comfortable, pain-free, and worry-free as long as she might live.

Then, when she seems to be passing, make sure she is not in discomfort, and not afraid.

How do you expect stem cells to do that?
 

hansvin

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Loved one DX
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IND
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Delhi
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Delhi
In my opinion, the important thing is to keep your mother comfortable, pain-free, and worry-free as long as she might live.

Then, when she seems to be passing, make sure she is not in discomfort, and not afraid.

How do you expect stem cells to do that?
I do agree with you Mike. Thank you. I am just weighing all my options (for what it's worth). Also I am trying to get responses for all the points I mentioned.
 

Nikki J

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Hi Vineet
I am sorry about your mom. Is she diagnosed by her doctors? I understand about not having a clinic but you have doctors

Assuming she is the things you mention taking are things I take except inosine and possibly the b12 What form is it? If it is not injectable methylcobalamin research that though the benefit was found in people with earlier disease. Also research Tudca. I do not take inosine because the point is to raise uric acid and mine was in the desirable range. Is your mother's level being checked? I go to Massachusetts General where the inosine trial is being done. They said the goal is 7 ( on the US scale it may be a different scale in India)

Another goal should be to maintain or possibly gain weight. There was a study that showed PALS with a bmi closest to 31 progressed slower.
Can the maid do range of motion exercises ( gently) as well as massage?
Does she have or can you get a hospital bed? An alternating mattress maybe? If she has her arms a bed cane can help with turning
Is it possible to get a power wheelchair with a standing feature? They are terribly expensive here.
I think I know who Dr Sane is. I give her a lot of credit for what she is doing. Can you perhaps work with her on the ALS clinic idea?
Stem cells- they sound well meaning but it is unproven. There are different ways of doing it and aside from cost there are physical risks that vary with the procedure. PALS have died ( not from the organized trials) PALS have had serious potentially life threatening reactions to parts of treatments ( including in trials). The more invasive the higher risk of course. If immunosuppressive drugs are needed it is more risky. Think hard. Research well and several times
 

lgelb

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Vineet,
I would add a Hoyer-type lift to your list (not necessarily that brand) for transfers to and from bed, toileting sling and chairs.

For changing position in bed, a low air loss or alternating air overlay may be helpful, or a simple draw sheet.

Here is a paper on Indian preparations in MND that may be helpful.

Best,
Laurie
 

hansvin

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Dec 2, 2015
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Loved one DX
Country
IND
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Delhi
City
Delhi
Hi Vineet
I am sorry about your mom. Is she diagnosed by her doctors? I understand about not having a clinic but you have doctors

Assuming she is the things you mention taking are things I take except inosine and possibly the b12 What form is it? If it is not injectable methylcobalamin research that though the benefit was found in people with earlier disease. Also research Tudca. I do not take inosine because the point is to raise uric acid and mine was in the desirable range. Is your mother's level being checked? I go to Massachusetts General where the inosine trial is being done. They said the goal is 7 ( on the US scale it may be a different scale in India)

Another goal should be to maintain or possibly gain weight. There was a study that showed PALS with a bmi closest to 31 progressed slower.
Can the maid do range of motion exercises ( gently) as well as massage?
Does she have or can you get a hospital bed? An alternating mattress maybe? If she has her arms a bed cane can help with turning
Is it possible to get a power wheelchair with a standing feature? They are terribly expensive here.
I think I know who Dr Sane is. I give her a lot of credit for what she is doing. Can you perhaps work with her on the ALS clinic idea?
Stem cells- they sound well meaning but it is unproven. There are different ways of doing it and aside from cost there are physical risks that vary with the procedure. PALS have died ( not from the organized trials) PALS have had serious potentially life threatening reactions to parts of treatments ( including in trials). The more invasive the higher risk of course. If immunosuppressive drugs are needed it is more risky. Think hard. Research well and several times
Very very helpful Guys. Thanks very much. Here are answers to some questions Nikki:

1. Yes she has been diagnosed by doctors. We do have great doctors, she is seeing one of the best neurologists. The problem is the lack of informed support staff to help with the quality life.

2. Supplements: She is taking Mecobalamin for B12. I forgot to mention that she is also in IGF-1 LR-3. I will research on tudca as well. Also she is taking Ashwagandha (also called Indian gensing - mentioned in the article as well which you snet Laurie) which is good for nerve health. I know there has been many posts about L-serine, have you guys noticed any benefits yet? Also what about Lunasin, looks like there have been some benefits reported per ALSUntangled but nothing confirmed yet.

3. Weight gain: Yes we are trying really hard for that.

4. Physiotherapy: Her maid gives her massage, helps her exercise a little and also I have sent a TENS unit (Omron I believe) which she uses daily. Apart from that, she does Pranayam (Breathing yoga) everyday which has helped her in maintaining her great health till now (She never had any moderate/major illness).

5. Assistive devices: Thanks for all the suggestion Laurie and Nikki. We are looking at some of the options now. Nikki, that standing wheelchair is outrageously expensive. We don't have any insurance covering that. Insurance is another challenge here which needs another discussion forum.

6. ALS clinic: The brainstorming is on. In India, we believe that people with a lot of other diseases which are non-fatal but require massive life adjustments, can't get the right things to live life decently. To start with, what all do we have/need at a typical ALS clinic? I have never been to one so can't think of much but basics like physiotherapists, counselers, etc. Dr. Sane is a consultant in a stem cell clinic, so I am not sure how much she can devote to this.

7. Stem cell: Again, thanks for the inputs Laurie. I am typically a smart person but this situation is very close to my heart and for once I don't mind being fooled if it offers some hope. Dr. Sane says that it is safe and should be tried for my mother. It sucks to sound dumb. I am researching on this everyday.

8. Another question: Is there anything else I can do? Anything I shouldn't do?

Thanks very much. You guys are beautiful.
 

gooseberry

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You are there to help and giving support....that is a lot. Many family members do not do that. Instead they shut themselves off from the pals.

A transfer board might be useful or something similar.

Clinic in the USA has a dietician, social worker, respiratory therapists, physical therapy,occupational therapy, neurologist, local als chapter representative, and speech pathology. It is useful, especially in the beginning because of their knowledge about resources....what you will need, where to borrow it, where to buy, what insurance willing to pay for, etc.

A smoothie machine. You can get calories by your mom drinking a high protein,high fiber smoothie. I use a greek type yogurt, fresh or frozen frui, and cream,. Then I blend it. You can add a little honey. Others use milk, nutells, peanut butter, protein powder, etc. The goal is to get protein and fiber in her on a regular basis in a way she enjoys.
 

hansvin

Member
Joined
Dec 2, 2015
Messages
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Reason
Loved one DX
Country
IND
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Delhi
City
Delhi
Nikki,

You mentioned TUDCA, I did read about the study which seemed to be effective. I am going to try to get that shipped to India.

I want to understand if all these supplements/medicines make sense together. Any interactions?

1. Acetyl L-Carnitine
2. B12 - mecabol
3. Vit E - Evion
4. Riluzole
5. Gabapin 100
6. IGF-1 LR-3
7. L-serine
8. TUDCA (Haven't started yet) - Any reviews are appreciated.

Again, many thanks for your help.

Vineet
 
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