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vmd

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581
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idaho
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N/A
First, let me thank all of you in advance for the support and advice you have offered me in the past. Considering the 24/7 fasciculations I am experiencing as described by Al and other PALS as characteristic of ALS, and the weakness, atrophy, bulbar symptoms etc, I don’t see any other disorder, except MND, as most descriptive of the symptoms I have. My intent is to prepare myself for the possibility of being diagnosed with ALS. If it’s not too personal, I would like to know how each of you managed to come to terms with having ALS. Are there tips you can offer that can help those who will be diagnosed with the illness? If this question has been asked before, please direct me to the proper thread. I would be more than happy if you prefer to PM me instead.
 

Frizzel

Distinguished member
Joined
Mar 15, 2007
Messages
177
Reason
DX UMND/PLS
Diagnosis
03/2007
Country
US
State
WA
City
Vancouver
Diagnosis

Live each day with as much gusto as you have and pour love and joy with the intent of no regrets. How do you prepare for ALS? Get your knowledge base and go on with your life until you're diagnosed. In between your doctor visits, dance life.

If you don't have disability insurance GET it NOW!

It took 8 years to receive my PLS diagnosis. I just kept living, doing what I loved, stopped focusing on what was happening and gave more energy into who I loved and what I loved doing. Was it frustrating? YES! If I would have given into the frustration I would not be here today. The stress wondering all the 'what ifs' aint worth it!

Find some delight in life. I think of both Al, Captain Al, Mike, Liz, and a host of other people who HAVE been diagnosed who are movin on. CIndy M who hasn't been diagnosed, may not even have an MND but she's struggling with SOMETHING. SHe's giving of her time to support us. Is it easy? My goodness no!

Where water and rock meet, water keeps going. Flow....

My husband has helped me reel in big fish, caught me before tripping over a 20 ft. cliff, pulled me up from falling when we were out exploring. Jumped in the water after me.

The lights are going out in my body not my mind. I am who I've always been. How do I prepare? By laying my knowledge base of the disease I have now been diagnosed with, ask for help to make the adjustments as they come and focus on going on with my life.

May I be so bold to share to make time to till, plant, water, weed, harvest and share the goods of your life with others.

Frizzel:)
 

patricia1

Very helpful member
Joined
Sep 18, 2006
Messages
1,149
Reason
PALS
Diagnosis
7/1999
Country
US
State
newjersey
City
lopatcong NJ
I am sorry to hear you may have ALS If you do, the main thing is DONT GIVE UP OR IN TO THIS DISEASE!Everyday I make count I push myself.I say Pat take a shower (with the help of my husband)which was hard at first,now its just the way we shower,by the way you can make it fun if you know what I meanLOL.I make sure I have a plan to meet friend for lunch go to movies go to a pool to dinner visit my grandchildren Alway have a plan It gives me a purpose. Also Massage is important get my nails done hair done .I also find much peace with prayers I pray alot. I believe I am going to fight this disease I wont give in,I think positive that I will not die from this and a cure is coming and thats how I get thru everyday Dont be afraid to say I need help and please dont be afraid to cry I learn that soon enough, I was getting frustrated all the time. I know everyone deals with things differently. This is how I do. I wish you luck God Bless Pat
 

Icanmanz

Senior member
Joined
Jul 14, 2007
Messages
947
Reason
PALS
Country
Uni
State
Texas
City
Tomball
Frizzel said:
Live each day with as much gusto as you have and pour love and joy with the intent of no regrets. How do you prepare for ALS? Get your knowledge base and go on with your life until you're diagnosed. In between your doctor visits, dance life.

If you don't have disability insurance GET it NOW!

It took 8 years to receive my PLS diagnosis. I just kept living, doing what I loved, stopped focusing on what was happening and gave more energy into who I loved and what I loved doing. Was it frustrating? YES! If I would have given into the frustration I would not be here today. The stress wondering all the 'what ifs' aint worth it!

Find some delight in life. I think of both Al, Captain Al, Mike, Liz, and a host of other people who HAVE been diagnosed who are movin on. CIndy M who hasn't been diagnosed, may not even have an MND but she's struggling with SOMETHING. SHe's giving of her time to support us. Is it easy? My goodness no!

Where water and rock meet, water keeps going. Flow....

My husband has helped me reel in big fish, caught me before tripping over a 20 ft. cliff, pulled me up from falling when we were out exploring. Jumped in the water after me.

The lights are going out in my body not my mind. I am who I've always been. How do I prepare? By laying my knowledge base of the disease I have now been diagnosed with, ask for help to make the adjustments as they come and focus on going on with my life.

May I be so bold to share to make time to till, plant, water, weed, harvest and share the goods of your life with others.

Frizzel:)

Hi Frizzell, hats off to you, and may God bless you! You have such a positive attitude. That was a good reply.

Irma
 

vmd

Senior member
Joined
Apr 27, 2007
Messages
581
Reason
Other
Country
US
State
idaho
City
N/A
Thank you all. The positive attitude is what I admire about the PALS and CALS on these boards. I guess it's not something that comes in a pill, but must be worked at everyday. I pray to God that I have that same character.
 
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