Introducing myself

[myamyam]

Hi, my name is Miriam. I live in Israel.

I am indirectly affected by ALS, since my sister-in-law was diagnosed. I am close to her and want to be able to give support and not make her feel bad because I don't understand her condition.

Also, I will be filling in as a care-giver, when her husband needs a break.

She was diagnosed in February 07. About a year earlier she started to loose her voice, kind of like speaking hoarsely after having a cold. Gradually she started to loose the ability to swallow and now her legs are weakening. In May she went to China for an intensive course of treatment with traditional Chinese medicine. She returned only this week and I saw her yesterday.

She has lost a significant amount of weight and seems so frail.

I am trying to understand this disease and want to find out how I can support her. I would love to get some input from others who have been touched by ALS.

 

[brooksea]

Hi Miriam,

I'm sorry your sister-in-saw has ALS. Hopefully you can come to this forum and get answers to any of your questions regarding this disease.

Just remember that even though the body deteriorates, the mind stays in tact in most cases.

All I can say is take it one day at a time and try to remain positive. I would imagine you SIL is still in shock from the diagnosis and perhaps her husband too.

This disease can go slowly or quickly, taking its time robbing the person of any voluntary muscle movement until they are paralyzed. Every PAL is different in the progression and where it starts.

Does she have any assistance with speaking and communicating? My husband (PAL) says that would be the most important issue with him. Not being able to communicate.

 

[hboyajian]

Welcome Miriam, I am so sorry someone you love has ALS. You and your extended family have my deepest compassion for what you are going through. This forum is an excellent place to come for both information and emotional support. Whenever you have questions, many here will be able to give you answers, ideas, or at least guide you to the resources you need. And when you feel overwhelmed, grieved, confused, happy about something, angry, or any other emotion, you can share it and be understood.

As jimercat says, communication is critical for your sister-in-law to be connected to her family and to let people know her needs. As she can do less for herself, this becomes really important. Getting enough sustenance to maintain her weight is also necessary for her well being. Is she on a blended food diet since she cannot swallow easily, or does she have a surgically inserted stomach tube (PEG tube) to get direct nutrition? This can make a big difference in life expectancy for most people once they lose the ability to swallow easily. Also, do you have support from a clinic specialized in ALS or motor neuron diseases? There can be physical and occupational therapists and others who understand these types of illnesses who can help her maintain joint flexibility, train you with assistive devices, and give her necessary tests regularly to check pulmonary function. As her legs weaken further and she loses her ability to walk, a wheeled walker can help her maintain independence and mobility before she would need a wheelchair.

Though physical support is necessary, your love is the support that will sustain her through everything else. Holly

 

[olegrandad]

Hi Miriam

My wife was also diagnosed in Feb. '07. She can't swallow either and has lost a lot of weight. But she also has dementia, which has robbed her of the ability to speak. Her daughter got a temp. guardianship and removed her from our home, saying I wasn't taking good enough care of her. Her disease is going fast, and she doesn't have a lot of time left. All I can say is good luck, and hopefully you won't have as many problems as I've had. Mike

 

[pldo]

Shalom Miriam. Ma sholmech? Slicha. This is a wonderfully supportive website where people will help you in any way they can. I agree- be there as a friend- listen to her cry, laugh, etc.