newly diagnosed

[Sjm16]

Thank you each, again as I have read your kind and warm welcomes. You each sound like survivors and although I always saw myself as a survivor in life, through the death of my first husband to multiple myleoma to a still birth when over- due to one of my son's serious injuries in Afghanistan, with Hod's help, we've climb through, but this will be the greatest " test" if indeed survivor is even a suitable or appropriate word to use.
It is true that we are blessed with a good size family but 3 of my 4 kids live in other provinces across Canada and my one child still in Nova Scotia is in the navy, with the submarines and works almost bi- coastal- back and forth between NS to BC. My husband ( as I remarried yrs ago) is a pretty serious diabetic and has a history of heart problems, trying to mentally take in this diagnosis himself, so often we find ourselves in a quandary. He is a good guy and thus far does not have to do much physical for me, although some things are not getting done.

I find in these 3 wks and a day, such fluctuations in my outlook, mood, motivation, levels of acceptance and lately feel like I am wasting time- a waste of space, another adult with unknown reason or antidote for this hard hit. If I watch atav or useless shows, just to get through a tough afternoon, I feel very guilty as if wasting previous time. Also fearful, when these numbing out spells occur that I am blindly creating a long lasting bad habit but some days my mind is almost begging me to veg- out!?

Once so busy in life with work, family cares or connections, friends etc,now my life feels very narrow and as if there is so little I can do to " make a difference" or live more fully, let alone have the energy to "do" all these things some can or will do that they always wanted to do but never could do, now that they have been given an incurable diagnosis! Where do folks get the money if ALS has prohibited them from working and, like me currently without my former health benefits plan( beginning thankfully to access my husband's retired military plan but it is pay upfront and eventually get 80% back via mail, maybe,if approved-), or the stamina is low to drive and travel or eat out even, if one could do that physically well in public ? Thankfully my legs still work and daily I walk. I'd like to run away, but where- to the past ? Seems I want to. My appetite which was poor the last 4 months along with swallowing problems, now is increasing greatly and I am always seeking more and more things I can eat and swallow- but how unhealthy is that ! Must be sheer emotional eating despite the dysarthria and dysphasia- not sure.
Whine, whine whine, I know. I have been a Christian long enough to know that God, if one believes in God, and my apologies to those who might get impatient with spiritual talk- I respect that for sure- but God's mind is not blown away by my feelings , questions or honest struggles. Over time , I hope to keep and speak ( type) more assuredly, but for now, I do feel rudderless and a peek into my future with limited communication abilities or having to accept personal care, does worry me and the tendency to want to go into hiding might be strong. It will not be smart or wise to just isolate myself, and certainly now, I am not doing that, but it is more comfortable and safe being alone, yet it helps make my future look pretty bleak.

Thankful to be able to utilize 3 limbs, I do get out for healthy walks, some errands and the needed appts thus far. Totally exhausted if I must do 2 things or appts in one day. Do any of you know, in general, how soon does one lose their mobility, with Bulbar onset ALS? I understand it varies for all, but just any idea. I can't do much in the way of styling my hair. I can still shampoo my hair and shower of course but the bathtub is out, and I miss that, but detailed work with my hands is tricky, although gross motor skills seem ok as compared to fine motor skills ref my hands.
Should I keep active with my legs and arms or exercise moderately or strongly, or will that reduce their mobility quicker? Any hints or ideas?
Thanks so much for the cough syrup idea! That I will try very soon! How often should that be taken for speech etc? A couple times a day ok?
Thanks for the lovely spiritual advice as well from my fellow Canadian! Yes" sufficient unto the day is the evil thereof" or as you better put it, one day at a time! And yes- being thankful for what we do have is a key.( I am reading a good book " Seeing Through The fog" by an Ed Dobson, a minister who has ALS and it is "real" and transparent. I found it thus far a practical and sincere read, for me, anyway. )
I just feel scattered and almost avoidant. I hate that! Hopefully this is normal in early stage of diagnosis. Outside of that- very tired physically with sleep almost a mirage, some nights.

Thank you for bearing with me. I hope to be a sunnier he,p or support to others at some pint- soon

Just wishing you each the very best!

Sincerely,
Susan JM

 

[fionae]

Dear Susan,

I have written to you before. As I had said previously, so much of what you say resonates so very strongly with me. I felt that again enormously as I just read your new message. You put into writing, all throughout your letter, all of these different thoughts and feelings that I have been having, but I have never found the words to describe them the way you have.

As I had mentioned in my previous writing to you, I was diagnosed with this terrifying disease just a few days before you were. I, too, have mostly bulbar symptoms.

I want you to know that reading what you have written has been very important to me. It is making a big difference in my life as I read what you express. I am just so sorry for the torment you are going through. And that I am going through. I am so sorry that the reason we are meeting is that we both are here on this forum, due to the unexpected, devastating turn of events taking place in our lives.

Thank you for the help you have given me through your writing.

Sincerely,
Laura
"fionae"

 

[Sjm16]

hey, Fionae,

Thank you for your response. I wrestle with how upfront or plain- speaking I should be on this site, and yet well aware that we, you and I and a few others on the newly diagnosed thread, are very new to this, but desperate to say something real.

Maybe we can walk through some of this together and that, in itself might be a comfort or a light.

My thoughts are with you today, too. I hate being or sounding like I am self absorbed in these post, or rants, but maybe some of the impact of this type of diagnosis is understandably some of that initially, because we have to face it, go inward more than ever and it's not the time for pretending as if it is a cataract operation or a broken leg that will heal. Seems it calls on every part of our life and surface or deeper thought, to take heed.

If you ever want to communicate one on one, please feel free. I have no big answers- just struggling to pray when I am not in too much of a low, or feeling hopeless, but maybe we might we a comfort or a listening ear along the way, for each other.

Take good care, too

Susan

 

[Nuts]

Susan, please know that one of the beauties of this group is that you can vent as much as you like. People here understand the need. If at some point someone suggests a different approach to dealing, it will be out of love and a desire to help you.

As a CALS, I cannot know the agony that you face. I do, however, feel many of those same emotions in response to my husband's diagnosis. This sentence changes how we look at everything. It shuts some people down. Others are freed to open themselves up to the joys around them, to express themselves more openly, to squeeze every drop of joy possible out of their days. This is NOT often done without help. CALS and PALS alike often take antidepressents. Endless days and nights of mourning what the future holds or doesn't hold can create chemical...or is it hormonal? changes that require intervention. Other's find other ways to cope--you're not expected to do this alone.

ALS will physically drain you to the point where you will not be able to avoid vegging. Doing so is not a waste--it preserves what you have. I can imagine the fear of mental vegging--of wanting to escape this reality. Some look outside of themselves and focus on how to help the families they are leaving behind. I know that drives my husband. Sometimes I want to stop him from preparing me for my future, but then I realize that this is what gets him out of bed. You will need to find your own focus, and it won't happen overnight. Be kind to yourself.

Eating...oh, keep doing it! PALS who maintain weight do better and llive longer than those who are underweight or who lose a lot. Going into this overweight is a GOOD thing. Perhaps your body knows this and its already guiding you!

If you have a moment of peace or comfort, it is not wasted. If you find a way to engage your mind as your body betrays you, your thoughts are not wasted. I wish that I had more for you. Mostly I just wanted to assure you that you will make friends here who will make the journey with you. Some will be ahead of you on the road, and eventually there will be those behind you. All will understand and appreciate your honesty.

Becky

 

[notBrad]

For the cough syrup dosage it depends but I wouldn't do anything more than the label warns (although in all honesty anything OTC can usually be taken at more than the recommended dose). I would get the long lasting type and take a recommended dose every 12 hours when I took it.

Hope it helps you,
Brad

 

[zoohouse]

Susan, you can say anything you want. Yes you are early in this disease, and it is extremely difficult. It takes a while for the initial shock to wear off to the point that it starts to feel like another chapter in your book. My husband was diagnosed just over 3 years ago and we have kept very busy. When we are shopping or doing things out in public I forget that we are different than most and can be surprised when I notice that we are drawing stares. It becomes the new normal. I hope that this happens with you as well.

Paulette

 

[fionae]

Dear Susan, I would very much like to be in touch. I haven't bn doing too well, so can't do anything rt. now, but I do understand that there's a way we can commuNicate one on one. Thank you for you kind offer. My best to you. sincerely,Laura.

 

[MindyR]

Hi Susan,
Sorry to have to welcome you. I am also newly diagnosed with ALS in June. The people on this forum have been wonderful. You will find lots of information and understanding. The first month is the hardest, but it does get better.
Mindy

 

[Sjm16]

Thank you each for your responses and openness.

I will take every point into consideration. It was very helpful and helped to " normalize " some of this into a new normal. The last few days, just at the 3 week Mark have been suddenly more daunting, sad, angry but hopeful. Very emotional to understate.

There are a couple of important focal points for me to assist, as you say, Becky, ref my family when I am gone, andnow, tons of paperwork for everything,plus appt. , so those things will assist, I am sure, but I pray whatever is meant for me to accomplish, or grow further in, to be able to give, still, while living, will at it's right time become apparent. My life without " my work" and any extra curricular within that sphere, is gone now, so if there is something beneficial to do beyond the limitations, i hope to good ai can and will.

Thank you each again and I wish you each the best ( and I appreciate the info about the cough syrup, too

Susan

 

[Sam63]

Welcome Susan, but sorry it had to be like this. I was diagnosed in June 2015 with bulbar onset I know exactly where you're coming from. You will find lots of helpful and knowledgeable people here!

 

[chally]

ok susan welcome your in the right place there's so much support here and we need each other so post often much love chally

 

[Sjm16]

I am doing terribly from my own estimation. After Aug 25th, there was some serenity or something that seem to carry me through the initial hit of finally, the diagnosis. There feels like a terrible battle going on and despite this last week in particular, and just hopelessness, lack of motivation and terrific resistance mentally, spiritually and emotionally. There is the physical side of heavier symptoms- bulbar onset and my lungs and rib cage doing poorly. Of course the swallowing if not great, speech awful, just exhaustion. I cannot conjure up the me with some hope or perservance over difficulties, and this is not by any means my first major crisis or loss. As many of you already know or some in videos have said, and I agree, it is not, for me, the dying but how this will take me there.faith in God has helped me and my family through deep waters, but the shock of it, is that I can't seem to get anywhere close to that place as I seem to have locked myself down.Feeling very " punished" , very awful.

Although my speech won't allow me to express myself, properly, I likely am in need of therapy or in depth counselling with the right person.

Motivation is gone and I can't visualize staying anywhere close to this state much longer, but I can't see myself going down this road either.

Thank you for taking such time, Becky to respond in the manner you have. Much appreciated,

Susan

 

[Nikki J]

I am sorry you are having such a hard time. I think we all go through ups and downs. Sometimes the diagnosis is a weird kind of relief as it is an explanation but the shock wears off and the days and nights get hard. If you feel counseling would be good I am sure there is a way. If you are not taking one at least consider an antidepressant. They are not right for all of us but can make a huge difference for others as many have shared here
We are here to listen, to support and to help problem solve too. In time you can find ways to do things that give you joy.
Hugs...

 

[affected]

Susan truly that first month is the worst, and often the second isn't a lot better but please remember you are in the worst time of it emotionally. Yes progression is hard, but the shock of the reality of the diagnosis is still the worst time.

Nikki gives some good advice - get all the help you can and all the support you can.

I took antidepressants from only a short time after Chris was diagnosed. He refused for many months and only accepted them because he was told they may help him sleep. He actually told me they did nothing for him but I could see that he no longer burst into rages so they did help.

Don't expect too much of yourself either. If this were happening to your best friend, would you expect that person to just be fine and rolling along with it all? No I'm sure you wouldn't. So use this place to rant, and let yourself adjust however you need to. Honestly most PALS do find a way through and out of that initial shock and to finding enjoyment in the different world they find themselves in.

Of course none of us want this, and it is totally crap. But we learn to find the place of IIWII (it is what it is) and some kind of acceptance. But each in our own way, so give yourself the space to find your own way to deal with it.

 

[Sjm16]

Thank you and hope you are doing as OK as possible.