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Mottom

Member
Joined
Jan 24, 2009
Messages
12
Reason
PALS
Diagnosis
12/2008
Country
AU
State
Tasmania
City
Loira
Hi, and welcome to my really crappy life as a person with MND. I am a 61 year old male who in a previous life served in the Australian Army for around 20 years: including a stint in Vietnam with SAS. I was then succesfully self-employed until retirement at 55years of age. My main hobbies were car racing,fishing and skydiving. Back to now. October 2008 I fell over a couple of times while I was using a chainsaw and almost caused myself a major injury or two. November 2008 I fell over a couple more times and noticed that when I was walking I tended not to be lifting my feet properly(as I was used to). December 2008. Early in this month I started getting cramps in my legs and my knees were starting to ache at night. Mid month I went to a Neurologist /MRI scans/Muscle Biopsy. Christmas eve I was told I had MND and New years eve this was confirmed by another Physician. 23rd Jan my Doctor told me he hopes that some of the symptoms being experienced would slow down but offered no insight as to why my problems were rapidly increasing. By today; 25th Jan I can only walk for about 20 metres at a time with the aid of sticks/walking frame. My legs, arms and upper body have severe twitching for a large amount of the day. I am awake a lot at night with severe pain in my legs. Especially the knees. I am tired most of the time and not looking forward to a great deal of fun in the coming months. I have accepted the fact I am dying but it has been hard on my wife and three grown children as all this has happened in only 4 months.
 

joelc

Moderator emeritus
Joined
Jul 15, 2006
Messages
2,786
Reason
PALS
Diagnosis
09/2005
Country
CA
State
BC
City
Abbotsford
Don't accept that you are dying - you don't have to! I am sorry for your diagnosed and sorry you have to be here, but welcome!
Many of us are in the same position but have a wonderful life despite ALS. If you are open to embracing technology you can live a long time if you can also maintain a positive outlook. We are here for you!
Take care and don't be afraid to ask anything.
 

jpsugar123

Member
Joined
Jan 27, 2008
Messages
23
Reason
Other
Country
US
State
Missouri
City
St Louis
Don't Give Up!

Don't accept that you are dying - you don't have to! I am sorry for your diagnosed and sorry you have to be here, but welcome!
Many of us are in the same position but have a wonderful life despite ALS. If you are open to embracing technology you can live a long time if you can also maintain a positive outlook. We are here for you!
Take care and don't be afraid to ask anything.
Ya know, the very same thing happened to my mother September 2007. She had ovary surgery a few days before Labor Day weekend. She then immediately started getting weak. Mom was using a cane and could barely get around and lift her legs up enough to walk by October 2007(ONE month later!) and a month later she could no longer walk and her arms were incredibly weak. She became a "quad" when the docs took her off IV Prednisolone (steroids) in March of 2008. We got a confirmed diagnosed of ALS May of 2008 and it broke our hearts. Mom opted for the trach/vent in June 2008 as she already couldn't breathe. Her decline was extremely rapid just like yours. Just one piece of advice: get something before you need it. Mom was struggling with BiPAP but her pulmonologist opted to do the trach BEFORE she needed it so this way she had a say in what was being done to her. She got the feeding tube at the same time "just in case". the trach/vent thing is intimidating at first but we are so thankful she got it and so is she. She didn't want to miss her granddaughter growing up. Whose to say if her ALS will stop at the neck or she'll become locked in one day. I am just thankful for each day with her and if she would ever pass from this, at least I know we did every thing we could to make her life easier and we'd have no regrets.
 

jpsugar123

Member
Joined
Jan 27, 2008
Messages
23
Reason
Other
Country
US
State
Missouri
City
St Louis
P.s.

Don't be afraid of antidepressants either. I'd highly reccommend them for family if they are having a difficult time coping. I am on them so that way I can be strong for my mom.
 

Mottom

Member
Joined
Jan 24, 2009
Messages
12
Reason
PALS
Diagnosis
12/2008
Country
AU
State
Tasmania
City
Loira
Reply

Hi again, and thanks for the response. I suppose I am a bit lucky as I am not depressed with my lot and can sympathise with those who do suffer. I have already made the decision that I am not going the way of assisted breathing or eating. I have been very active up to now and do not relish the thought of being "helpless". My family have accepted this fact and I have placed DNR orders with the necessary authorities down this way. I originally posted my thoughts on this site so people could get someone else's perspective. Many will say I am wrong but hopefully some will agree with the course of action I have chosen to follow.
 

Connie

Active member
Joined
Apr 1, 2008
Messages
60
Diagnosis
03/2008
Country
US
State
Ca
City
Granite Bay
Hello Mottom,

I respect your courage and conviction and the help that you gave your family in documenting your wishes so they are not ever put in the difficult place of having to make those decisions for you.

We all have the right to our own preferences about how we want to live and what is the right choice for each of us and our wishes should be respected.

Best regards,

Connie
 

Zaphoon

Extremely helpful member
Joined
Aug 2, 2008
Messages
2,855
Reason
DX UMND/PLS
Diagnosis
08/2011
Country
US
State
Missouri
City
Springfield
Welcome Mottom,

I, too, am sorry for the diagnosis you were given and all it brings with it. I also understand your thoughts on not wanting to go with the assisted living options for food and air intake.

Here is hoping that the progression slows down for you.


Zaphoon
 

rose

Extremely helpful member
Joined
Mar 29, 2008
Messages
2,879
Reason
DX MND
Diagnosis
7/2008
Country
US
State
Maryland
City
Anytown
Welcome Mottom,

As others have stated, ones wishes should definitely be respected. I'm wondering, as this has come on you so suddenly, if perhaps after you have more of a chance to get used to the idea you may have more of a will to live longer.

The number one concern would be to do things in the manner that you most wish. Those that find themselves with MND come from such a wide array of circumstances.

I know that I'm still hoping to hold grand babies that have yet to be conceived, and spend as much time as I can with the ones I love. If that means having a feeding tube, the prospect of which is on the horizon anyway, then so be it. I wouldn't want to be on a respirator, hospitalized for any length of time, but think I would be very receptive to having a vent/trach so I can have as normal of a life at home as can be made.

Thankfully, I'm not anywhere near needing to make the choice about the trach, and the feeding decision has already been made by me, and is expected of me by my grown children and significant other. It would be very hard for them to understand, or accept, if I were to refuse this.

Best wishes for you, and I'm hoping that you will find ways to better cope with having an illness such as this. I also hope that you are able to find answers and support through this forum.

take care, :)
 

shrimpbox73

Member
Joined
Sep 28, 2008
Messages
20
Reason
CALS
Diagnosis
09/2008
Country
US
State
NJ
City
Manasquan
Hi, and welcome to my really crappy life as a person with MND. I am a 61 year old male who in a previous life served in the Australian Army for around 20 years: including a stint in Vietnam with SAS. I was then succesfully self-employed until retirement at 55years of age. My main hobbies were car racing,fishing and skydiving. Back to now. October 2008 I fell over a couple of times while I was using a chainsaw and almost caused myself a major injury or two. November 2008 I fell over a couple more times and noticed that when I was walking I tended not to be lifting my feet properly(as I was used to). December 2008. Early in this month I started getting cramps in my legs and my knees were starting to ache at night. Mid month I went to a Neurologist /MRI scans/Muscle Biopsy. Christmas eve I was told I had MND and New years eve this was confirmed by another Physician. 23rd Jan my Doctor told me he hopes that some of the symptoms being experienced would slow down but offered no insight as to why my problems were rapidly increasing. By today; 25th Jan I can only walk for about 20 metres at a time with the aid of sticks/walking frame. My legs, arms and upper body have severe twitching for a large amount of the day. I am awake a lot at night with severe pain in my legs. Especially the knees. I am tired most of the time and not looking forward to a great deal of fun in the coming months. I have accepted the fact I am dying but it has been hard on my wife and three grown children as all this has happened in only 4 months.
My Husband feels the same way.Such an active man.His progression has been swift as well.I feel for both you and your family.We have all been blindsided by this terrible disease.He also has everything in order ,wanting no tubes or vents.It is a very personal choice. He is 53 and can not walk and is losing more mobility in his hands as well.We have a nurse come in and she feels he will be bed bound soon.This will now bring on a new set of issues.The thought of not being able to turn,scratch or having to wear diapers is not something he wants to prolong his life to do.I hope your disease slows down in time for you to enjoy life..Hang in there ,and God bless you.
 

rose

Extremely helpful member
Joined
Mar 29, 2008
Messages
2,879
Reason
DX MND
Diagnosis
7/2008
Country
US
State
Maryland
City
Anytown
Mottom ....P.S. ....

I wanted to commend you for being willing to make a statement about how you feel. I think there may be many that do wish to hear more specifically how others want to handle their life after diagnosis.

I wanted to say, and should have said it better the first time, that absolutely you need to do what is right for you, but the diagnosis is so new to you, that with time you may want to change your mind, or you may not, but you should feel free to do either without being pressured. I don't know how I feel about a vent/trach for me, I haven't ruled it out that's for sure, I think its going to depend on how the rest of me is doing at that point, but eating is such a drag right now, I just think that I will be making it immensely easier on everyone to go for the tube when my doctors say its time. Its no fun choking, aspiration pneumonia is awful, I've had two mild cases, and they left me feeling not in control of my life, because I couldn't help it I didn't even feel it the one time when I aspirated. But, again, my onset is different than someone that loses mobility first, so my perspective is different.

I hope you hang around and participate here, it sounds like you've led an active and exciting life that many would enjoy hearing about.

good luck to you, :)
 

Doris Little

Active member
Joined
Oct 21, 2008
Messages
48
Reason
PALS
Diagnosis
08/2008
Country
AU
State
Victoria
City
Melbourne
Hello Mottom,
I am a fellow Australian with MND and I am enjoying Australia Day today! I too am a very active person and I am also finding hard to come to terms with my future. My husband is a Vietnam Vetran (3Cav) so with his stress disorder from his time in Vietnam this has been a real trying time for him. I was diagnosed August 2008 but had some symptoms back in February. I cannot believe all the incredible support I have had from friends and family. This really makes me appreciate every day more. And I live my life to the fullest. That is all we can do. You never know your symptons may slow down a bit as I think mine have. I used a wheel chair to go to the tennis at Rod Laver Arena the other day. The advantage of this was we ended up with much better seats than we purchased. It is good to know there are some perks to be had. Is your Neurologist Dr. Bower?
 

brendapals

Senior member
Joined
Jul 6, 2008
Messages
953
Reason
PALS
Diagnosis
06/2008
Country
US
State
any
City
any
doris and mottom
Welcome to you both, sorry you had to find us, but I hope you find much support and friendship here. It's a great bunch of folks!

take good care,
-b
 

Mottom

Member
Joined
Jan 24, 2009
Messages
12
Reason
PALS
Diagnosis
12/2008
Country
AU
State
Tasmania
City
Loira
1 Feb update. I am now having some trouble swallowing some foods and voice is now croaky. I cant believe how fast this disease is progressing. My wife went for a Ritulek prescription fill yesterday only to be told. "There appears to be none available in Tasmania so we will get some for you from the mainland>(Ausralia)". This is really starting to P*** me off.
 

Doris Little

Active member
Joined
Oct 21, 2008
Messages
48
Reason
PALS
Diagnosis
08/2008
Country
AU
State
Victoria
City
Melbourne
Mottom my chemist orders it in for me as it is rare and costs over $600.00 AUS. Of course I only pay $31.00. Who is your Neurologist. I know mine Dr, Bower sees some MND patients in Tasmania
If I can be of any help getting the drug for you please let me know. I am sure though your pharmancy must be able to order it.
 

Mottom

Member
Joined
Jan 24, 2009
Messages
12
Reason
PALS
Diagnosis
12/2008
Country
AU
State
Tasmania
City
Loira
I am being treated by Drs here in Tassie as I am unable to fly to the mainland. I think the chemist has got the message and will order them prior to date being required in future.Dont know how long they will be needed the speed this thing is progressing. I am pretty lucky as, although I am not a member of any Ex services organizations I have a large group of Army mates who look after me.
 
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