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Winnie15

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I'm starting as a caregiver to a woman who has MND ... not sure what to expect at this stage but will stay in contact with you throughout the journey.

She's a mum and has had MND for about one year I think, she has a peg, ventilator and a suction machine.

I have been care giving at a rest home, so this is completely new to me, but I have a heart for helping people so it's a journey I want to take...and the important things is LOVE!


Winnie
 

lostinlouisville

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Winnie

You sound like a great person, I know that God said' Above all Love'. So if that is your heart you can not fail at this new job. I wish you the best of everything and I feel your new Mum is very lucky to have you.
 

mactravel

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I am new here too

my mother was diagnosed with MND in Nov-07. We think she has had for at least a year before that; that was when we first noticed her speech starting to slur. Since Christmas the disease has quickly disabled her. Over the last few days it has got to the point where she can no longer use a zimmerframe without help (an unwillingness to give up).

However, there are other symptoms that are causing us concern. Today, after an afternoon nap, Mam suffered spasms all over her boby; affecting her neck, face, back, arms, hips, legs and ankles. She has said it was horrifically painful and after suffering acute arthritis for 40 years she knows pain well. After a few minutes the spasm stopped but we were both a little shocked by events.

Are these spasms a normal part of the MND progression.

I am looking for a full list of what might and what might happen. Any pointers greatfully recieved.

Many Thanks in advance.

Mike
 

Winnie15

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thanks for the warm welcome..

I went in today and spent 3 hrs with the patient...quite mind boggling at first with tubes and pegs and that bi thingee breathing machine, I'm sure I will get to know the medical terms for these machines in a few days time.
The patient is 38 .... it's such a cruel disease ... terrible terrible.
I understand she was first diagnosed two and half years ago and progressed quite quickly from walking frames/wheelchairs to bed ridden.

We have trouble getting her head to stay straight .... any ideas for that?

:?:

Winnie
 

Winnie15

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Oh thanks for that link....I"m useless at sewing but will give anything a try for my precious patient

Winnie :-D
 

CindyM

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Yep- they should come to you later today. I cannot do it from the computer I am using right now. And when I get home my daughter is coming over with the littlest grandbaby so my arms might be kinda full for awhile tonight! :-D
 

califsand

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Mactravel

My father has muscle spasms and is now taking a variety of medications, including ativan (a form of valium) to help ease that. The spasms are painful and can be prevented with medication.... the meds may have a sedating effect but she may prefer that to the spasms!

A great source of info about ALS and also a place that can help you get resources is at ALSA.org. There are advocates there that can do anything from helping a patient with ALS get fast-tracked for disability payments to finding local loan closets to help get equipment. Registration is easy and well worth the few moments that it takes. There are lots of places with resources for ALS patients because ALSA, such as the MDA... our local office has funds that are purely for ALS patients and since most people don't know that they were very eager to help me when I contacted them. Another resource is the Dream Foundation. They flew my sister and her children out here for a visit and paid for them to do special things with my father....

If you live in California (other states too I'm sure but I don't know exactly what the system is like in other states) there are government benefits for caregivers of ALS patients. I was paid by the state 86 hours per week to provide care for my father at $10 an hour and it was a union job. I think that the program here was called C.A.R.E and Hospice referred me to them. It is a full time job and you are part of a union which also means that you can have medical insurance through the employer... this was essential to me when my father moved in with me because I had to take time off work to care for him and eventually lost my job. It didn't fully replace my income but it made it possible for me to do it.

Hang in there and keep us posted!

Sandy
 

Winnie15

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CALS
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PI
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Cindy thanks for the pictures, I had a good look but realized that we can't use them because of the trachea in the throat, but it was a good try anyhow :-D

They want to train me to suction Janine, and I am apprehensive about this as I have no nursing experience (I'm a hairdresser by trade) , they said that they will train me and I'll be fine....I guess i will feel more comfortable as time goes on.

Communication is a slight hassle as she can't talk, and uses her eyes for communication and a board with letters on that we point to and end up with a 'crossword' type of communication....I think with time I'll get better at that too, I just feel really useless about a lot of things right now .

Any ideas or ANYTHING I welcome!

thanks
Winnie:mrgreen:
 

CindyM

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It is a learning curve, Winnie. Hang in there. You have learned other difficult things in your life (cutting hair so that the client does not look like someone took at her with hedge clippers comes to mind,:-D) so I am sure this will come in time! Cindy
 
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