does it matter

[Shilly]

This is for pals and not caregivers. A bipap has been recommended plus my medical team urges me to eat healthy to keep up my strength. It seems that these do nothing but delay the inevitable. Why would anyone want to fight until the end when the end will probably be complete helplessness before death? How do you feel about letting the disease just run its course? Please don't suggest anti depressants. I'm not depressed. Been there/done that. I have excellent home care, a loving husband and attendant children. And as long as I can use my laptop, I have things to do besides watch the boob tube. My caregivers all say I have a wonderful attitude. Its just that I can't see why anyone would want to prolong the inevitable. Any thoughts from anyone else on the als journey?

 

[HelenL]

Dear Shilly, what is life itself, besides waiting for the inevitable? Death awaits us all, we just know what is probably going to kill us before others do. Take it one day at a time, and do what you need to do to make yourself comfortable.

I think a bipap isn't going to ultimately save your life, but it will make it much more comfortable to be able to breath easier (and not get headaches) than to not be able to breath well. I don't know how far you've progressed, you've been diagnosed a long time! But I do enjoy living my life still.... at this point I choose to live with ALS, not be dying from it. I probably am in a different stage from you, I honestly don't know how I'll feel several more years from now. But bipap is not an invasive procedure, and I have every intention of being around to torture my kids for as long as possible... at least to watch them finish growing up.

Sending you a hug, please stay on the forum here, you'll find lots of info and friends.

 

[jb63]

When I was healthy I used to say I would never let myself be helpless like in ALS. Now that I am here, I have had a complete turn around. I want everything including a trach. A trach will make breathing easier. If I have my mind, I want to live. My husband and son take care of me now and I have a congregation of friends who will help out as I progress. altho' I have just been diagnosis'ed I have had symptoms for a long long time. I have lost the muscle in my right leg, my left is severly weak but I can still move it a bit. I cannot stand and am chairbound. Loss of my lower back makes me flop without support. My shoulder are affected and my reach is almost gone, hands mouth and diaphragm is work. I have started to tell my family how to look after me when I am completely helpless. To read to me, show me my scrapbooks and stories of our life, movies and music, talking bible an books, postions of comfort, watching out for the wedgies.

With the extra support I could have more time, maybe significant time if sepsis and pneumonia do not hit me. I want to be near them.

 

[rcharlton]

Well I have a 4 year old daughter - so I kind of want to hang around as long as I can.

When it comes to invasive stuff like pegs and traches - that is a very tough personal decision. But when it comes to non-invasive stuff like bipap IMHO this is a no brainer. In addition to extending your life it will greatly improve your quality of life. Bipap isn't a big deal - people who suffer from sleep apnea use similar machines.

And don't stress about a healthy diet. Obviously making healthy diet choices is important but only if it is not limiting the amount of food you eat. The most important thing to do is EAT! High fat diets are best for PALS. More butter and gravy please. More ice cream with my waffles please. Can I have that gristle?

There is a lot of very promising research underway...and you just never know what tomorrow will bring. Aren't you curious?

 

[susanf]

I'm living with this, not dying from it. Like Helen and Richard, I have a 12 year old daughter. I'll do ANYTHING to see her grow up.
We live life as normal as possible.

 

[tomby]

Think about it all the time. Not wanting to be an unbearable burden to those I love, but wanting to be a part of their lives as long as possible. Trying to face this with courage, for them. Trying to find strength in my faith. Most personal of decisions.
But, you've been fighting this far longer than I have, and I hesitate to presume to give you any advice. But, a bipap is not heroic measures and would just make you more comfortable. And if you just need one now after 4 and a half years, for better or worse, you have a ways to go. Seems like you have a lot to offer and to live for and I wish you the best.

 

[trfogey]

This is for pals and not caregivers. A bipap has been recommended plus my medical team urges me to eat healthy to keep up my strength. It seems that these do nothing but delay the inevitable. Why would anyone want to fight until the end when the end will probably be complete helplessness before death? How do you feel about letting the disease just run its course? Please don't suggest anti depressants. I'm not depressed. Been there/done that. I have excellent home care, a loving husband and attendant children. And as long as I can use my laptop, I have things to do besides watch the boob tube. My caregivers all say I have a wonderful attitude. Its just that I can't see why anyone would want to prolong the inevitable. Any thoughts from anyone else on the als journey?

One reason for using a BiPAP is to prevent your husband or one of your children from coming in first thing in the morning and finding you dead from CO2 buildup. Not a very pleasant way to start the day (for them, anyway), is it? It would be a real shame if Mom were to kick over on Christmas Eve or the night before somebody's birthday, because she didn't know that she was retaining CO2.

Not to mention that real air hunger absolutely sucks and that's where you'll probably be in a year or less. Doesn't take many 10 or 15 percent of normal per month drops in pulmonary function to get to the crisis point.

Your choice, though. I was diagnosed about three months before you were and my breathing was affected early on, so I've been BiPAP at night only for a year and and half and BiPAP 24/7/365 for two and a half years -- total of four years.

One thing I got to see by using a BiPAP was to see my collegiate alma mater win an NCAA basketball championship. Without the BiPAP (or a trache), I'd have missed that. Might sound silly to you, but watching college basketball is one of the few things that I can enjoy like I did when I was healthy. Maybe there's something that you can find that will make you want to stay alive a couple of more years.

Better to have it and use it as it suits you, than to need it and not have it.

My two cents worth.

 

[michelleRN]

When I was first diagnosed I remember saying I'll take it all, whatever will give me more time. After watching some friends die since then from ALS has changed my mind, but only a little.

I have a 2yo daughter and she lights up my life. That is enough to say I will do anything and everything for one more minute in her life, to be here for her, to see her grow. In the same breath I am heinously independent, to a fault almost. I don't want to be helped with anything. At all. I have thus far insisted on maintaining that as much as I can. It turns into a very black and white issue - I either do something on my own or I don't do it at all, but I certainly would rather not, and often don't, ask for help. There's probably an underlying meaning to it all. The moment I ask for help with a task means I will NEVER be able to do it again on my own. ALS won out again. There's surely a part of me that says I'm going to make ALS work to get me, I am not going easy.

So this becomes 2-fold. I fear being in a helpless state. I fear being in a position where I have to depend on someone else for everything, where there is no choice but to ask for help. But at some point I also feel like the more I do and longer I can hang on, the more I am preventing this stupid disease from winning away my life.

I was told, rather callously, by an OB/Gyn after I was diagnosed that I should consult God and think long and hard before deciding to bring a child into this world, knowing the outcome of my disease. Thankfully my neurologist knew better and said if I wanted to be a mother that there was no better time than the present. All of us pALS have seen the end result of our disease, whether we BiPAP or PEG or trach, etc, so whatever action we take is truly a personal one based at least in part on how fulfilled we are in life and how much more we think can experience in it with those interventions in place. I don't know what my decision will be when the time comes, and I prefer to not think of it often. I live as much in the now as is possible and try to keep my mind from concentrating on what the future may or may not hold.

 

[Poet Chistopher Robin]

No idea what to say to that one, yes its probably something we all think of, and they reckon it’s the end of the world this December the 21st too. My worry would be that they have this wrong as they did with the millennium bug, as that what if they suddenly found a miraculous cure to this damn disease after 130 odd years. I think and likely feel the same as you my friend, but until I’m nearly a cabbage I’ll keep praying and hoping for a miracle,

The entire world every man woman and child need to read statements like yours, maybe that way they might get educated enough about death, to rapidly ensure there was enough cash for a cure

 

[Shilly]

Thank you everyone for your feedback. Of course I am getting a bipap and anything else that will ease the symptoms. And I look on the limited bright side of als. There is no unremitting pain. This may be a shitty disease but I don't suppose stomach cancer is a walk in the park. And the progression is gradual so I can make plans ahead of time rather than suddenly finding that I have to adjust to being blind or paralyzed. Its the other side of the coin that makes me wonder. I have been bedridden going on a year now. We tried a hoyer lift and geri chair. It was uncomfortable and tiring and the only benefit was that I could sit in anther part of the house..and do nothing. That really limits your world. What really fries me, though, is that I have lost all sense of privacy. I have gotten used to having someone wipe my ass, but I resent having my daily bowl movements discussed among my caregivers..sometimes right in front of me like I`was a potted plant even though I have asked them not to. I can no longer feed myself so mealtime is no longer a communal event. Someone just stands and puts the things I can still swallow in my mouth here at my bed. I dare not try to carry on a conversation while trying to swallow. I can't scratch an itch; I can't pull the covers up when I'm cold; I can't move to reposition myself if I am uncomfortable. So far I can still make myself understood but am rapidly losing that ability. I am living and enjoying what I can but I can foresee a time when the effort to live and enjoy is just too damn difficult.

 

[Ms. Pie]

We're right there with you Shilly Dear. It's just life. Hang in there. Try to find joy in life somehow. We're always here if you want to vent or share your experiences. We're in this together.
Hugs to you!

 

[momap53]

Shilly, tell those girls to get a large calendar and record your business so you don't have to hear about it! Isn't someone supervising them? Really!
I'm headed your way too. It really does suck! I just try to be thankful each day for the little things that I can still do because I know that at some point they'll be gone too. Some days are harder than others. Hang in there!

 

[Poet Chistopher Robin]

I'm quite sure, that every one with this disease thinks much the same as you right now, but maybe they just don’t want to think on it too much until that time arrives. I certainly add many similar thoughts into many of my poems (in my blog) to try and educate the world about MND ALS meanwhile I'm hanging in there.. as said..

 

[guguy]

Thank you everyone for your feedback. Of course I am getting a bipap and anything else that will ease the symptoms. And I look on the limited bright side of als. There is no unremitting pain. This may be a shitty disease but I don't suppose stomach cancer is a walk in the park. And the progression is gradual so I can make plans ahead of time rather than suddenly finding that I have to adjust to being blind or paralyzed. Its the other side of the coin that makes me wonder. I have been bedridden going on a year now. We tried a hoyer lift and geri chair. It was uncomfortable and tiring and the only benefit was that I could sit in anther part of the house..and do nothing. That really limits your world. What really fries me, though, is that I have lost all sense of privacy. I have gotten used to having someone wipe my ass, but I resent having my daily bowl movements discussed among my caregivers..sometimes right in front of me like I`was a potted plant even though I have asked them not to. I can no longer feed myself so mealtime is no longer a cNommunal event. Someone just stands and puts the things I can still swallow in my mouth here at my bed. I dare not try to carry on a conversation while trying to swallow. I can't scratch an itch; I can't pull the covers up when I'm cold; I can't move to reposition myself if I am uncomfortable. So far I can still make myself understood but am rapidly losing that ability. I am living and enjoying what I can but I can foresee a time when the effort to live and enjoy is just too damn difficult.[/QUOTE

I understand what you are feeling and I have similar thoughts. If you have a porch or patio you can enjoy some fresh air, or the warmth of the sun on your face, a pastel sunset, and a beautiful sunrise. I enjoy the unconditional love of a pet (actually 2 maltese which in my opinion are the most loving breed). You can enjoy a dvd movie that makes you happy, the smell of fresh flowers, the sound of birds singing, the laughter of children playing and so much more. I miss riding a motorcycle but I still have the memories of some great rides and that is more than most people have. There are lots of exciting things many PALS do as well including sky diving. When I was young and healthy I was to busy to enjoy the simpler pleasures of life. Maybe ALS is gods way of saying slow down and smell the flowers?

 

[jb63]

They sell bird feeders with transmitters on top that send the sounds of the birds to a receiver in the house. Many many years ago when I was undergoing chemo and could not get out, my husband bought one for me. It was delightful.