Mana’s thread

Mana

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I am glad to see this discussion about therapists. My husband was diagnosed January 24 (EMG with second opinion confirmation) at Duke and had his first appointment at Duke ALS center April 26. He has only right foot drop issues now, has had a limp for a year, and the indications are slow progression at present. We feel very fortunate to have early diagnosis and excellent care. We've spent this time educating ourselves and reaching out for support. We are moving to a more accessible house this month, have seen all our children and grandchildren, reconnected with old friends and family, traveled to California and Hawaii. He has contacted voice banking support, ALS NC. We have a lot to be grateful for; he has a positive attitude and is in excellent health otherwise, just can't walk like he used to. I am kind of a wreck and trying to find a therapist who takes our insurance. My PCP has offered me medication, but I take so many antihypertensive meds I'm reluctant to add any more. I am desperate to stay as healthy as I can so that I'll be able to care for him, but I am anxious, with panic attacks and insomnia. I have been reading much of the ongoing discussions on this site and even though I haven't really participated, have found comfort and felt a part of this group. I don't know how to start a separate thread so hope it's ok that I'm sort of introducing myself here. I do feel calmer right now, just writing to "my people"
Thank you
 

rmt

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CALS
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07/2019
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Sorry to welcome you here, but I'm glad you found this forum. It has helped me so much to have people to talk to who understand what I'm going through. I've gotten great practical advice and incredible emotional support. I hope you will find the same here!
 

Mana

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Thanks, Robin and thanks to whoever started this thread for me.
 

wishmobbing

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Welcome and thank you for introducing yourself and your husband! I hope you can find a therapist to get support through all the mental turmoil and too stay as healthy and stable as possible. I understand your reluctance to add another medication with possible side effects to the mix as no one can really know how they interact once you take a bunch. A good doctor and therapist can hopefully sort out priorities. Addressing anxiety and panic attacks will certainly be on the top of the list. As you are looking at slow progression in your PALS you are also looking at living with ALS long term. So pacing yourself and finding a new normal that has room for your PALS and your needs both is very important. You could make something that is joyful for you and good for your mental health a routine. And then make that routine "not optional", stick to it, find ways early for someone to visit with your PALS while you are way doing something. For me it was swimming and I could do it up to a couple weeks before my boyfriend passed. We established this as a wednesday routine, I went swimming often meeting a buddy or two, my PALS had some friends over and they watched one series after another together. That worked well even when he couldn't speak and his friends by then knew how to work the equipment because they where along for a ride on a weekly basis.
It sounds like you have much more travelling and outdoorsy stuff ahead of you and are well connected. You'll do great!
 

affected

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It is truly therapy for CALS to be able to talk together. No judgments, just talk with others who understand. I'm so glad you have a thread here now mana. I do hope you can find a professional to work with. I found that having to turn up to an appointment actually made me stop and think of myself, when I would have just kept going because his needs would have been the priority.

I felt like I was constantly screaming in the back of my head and the medications took that edge off for me and kept my nose above the water line. If you are on lots of meds, you do want to really work out with your doctor what would be the best way forwards if you choose to take something. There are no rights or wrong so far as deciding if you do want to try this path.

Swimming for wishmobbing, but it was gardening for me. Some CALS have found crafts, or walking were their thing. Any thing that can reduce the stress and anxiety helps.

I also did lots of silly things to reduce my feelings of anxiety, such as when walking down the hallway and could not be seen I would pull faces, dance and wave my arms in the air over my head. It's amazing how much tension that can release, and I think CALS become very tense as we are on such high alert.

Use this thread now to talk things out, we get it.
 

Mana

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thank you both, Queen of Hearts and Tillie for your support and advice. You reminded me that love to swim and I did this morning. My head is a bit clearer and I was able to make some necessary phone calls. I will keep trying for therapy. Meanwhile, so grateful for everyone here and look forward to mastering the technical parts of posting... My general anxiety is getting in my way with learning new skills. I've had a hard time posting this reply, but want you to know you all mean so much to me already.

mana
 
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JGettingStarted

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Hi, Mana! Sorry to hear of your husband's diagnosis but glad to hear progression is slow and he is receiving excellent care. Also glad that you have courageously posted, reached out and are being welcomed by the fantastic CALS and wise souls on this forum. The positive attitude and all that you've done so far is admirable and inspiring!

My husband is pending an "official, official" diagnosis that docs have advised is almost certain to come at our next appointment in a few weeks' time, and I have a hard time posting on the forum too. When we first started our diagnostic journey and knew ALS was on the table I spiralled into panic attacks, anxiety, deep sadness, insomnia and more to the point that it was interfering with my ability to function and care for my family daily, and I also had a hard time securing a therapist via health insurance. I had to call what seemed like a TON of centers and therapists ...most of whom did not call back, did not take my insurance, or could not see me until much later on (one who said they could see me in 2023!). It took quite a bit of perseverance but I finally was able to connect with someone who is helping me, and I'm very grateful for it. I've also been in discussion with my PCP re: medications.

Wishing you good days, support from this group and continued seeking of the things that will help you and help you to feel OK during this time, whatever that may be. Hope to hear from you more, when you wish! Sending love.
 

affected

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Mana, don't sweat the technology - you have mastered how to get to the site and reply here on your thread. That's all you need to 'learn' just now.
Fantastic that you got out for a swim and it helped. I hope this gives you a little bit of hope that you can improve your own well being and mental health to more than just survive this whole thing.

It is perfectly normal to feel that you won't make it. A great CALS mantra is - take things a day at a time, and when a day is too much to handle, just take an hour at a time ...

@JGettingStarted I am impressed you persisted through such odds to get someone to help you. We need stories like that, as unfortunately as CALS we often have to be a very squeaky wheel to get what is needed for us and for our PALS.
 

Mana

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Thank you all again. I am already feeling the magic of CALS supporting each other. @JGettingStarted, I'm encouraged by your example for getting a therapist and hope you and your husband are, or soon will be connected to an ALS Clinic. We return tomorrow for a one month check-in with the entire team and, even though they were patient and thorough the first time, we have a long list of questions to ask in addition to finding out how he is doing now that we have a baseline. I also have a cardiology appointment this week and will ask her about adding an antidepressant to my meds. We are in the process of moving to a house that will be very near to accessible for a power wheel chair (with some minor renovations) and closer to our son, in Chapel Hill. I look forward to being able to actually live in the present moment and appreciate what we have now, after all this planning for the unknown timing and course of this disease. Meanwhile, taking it one hour at a time, as suggested!

Love to you all,
Mana
 

Mary2

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CALS
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04/2021
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Hi Mana, I am so glad you found this forum. The people here have been a true help to me. My PALS ALS also started with foot drop and changes in walking. He was diagnosed with Peripheral Neuropathy for several years but this was changed to ALS. How great that you have visited with family and found an accessible home. And you are hooked up to the well recognized Duke ALS clinic. To me, it sounds as if you and your PALS are doing everything to be pro-active! My PALS and I enjoyed companionship time together when his walking was first impacted. Each day we would do something that we shared together. We still try and do this. I hope you are able to find emotional support by posting on this forum.
 

Mana

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After one month, my husband's clinic evaluation is: no change, still slow progression. Good news, but no promises. He has signed up for a clinical trial, voice banking equipment, and new leg brace. We had one last grandchild visit from New York last week and this week we move to an almost already power wheelchair accessible home, closer to our N.C. son. Writing this makes me realize we are just 5 months out from his diagnosis and getting a lot done. I still feel like everything is an emergency, but hope that once we are resettled we can return to cherishing one day at a time as it comes. I saw my cardiologist, did start an antidepressant, and working on finding a therapist. I am so grateful for the support and wisdom of this forum. I come here to read posts often, just to calm down. Realized this morning that I hadn't updated my report. I want to thank you all again. I'm probably older than most of you, but I think of you as wise guides for the journey we are just beginning.
 

wishmobbing

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Messages
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You really got a lot done! Thank you for the update (but you should never feel like writing here is a task), I'm impressed. Especially that you found time to care for your health, too. I know the emergency feeling so well. It can light a fire under a CALS behind but it can burn you out as well.
So good you'll move to that new more accessible home. It will save you a lot of extra organisation and work and hopefully will mean you'll get to see a bit more of your son.
 

Mary2

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Messages
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CALS
Diagnosis
04/2021
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Mana, my PALS is 77. He seems younger to me even with the ALS. He is interested in current events and policy and some science fiction books. If it weren't for the darn ALS he'd be doing pretty well during this time of his life.
 

Dot Nichols

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Joined
Jan 30, 2022
Messages
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Reason
CALS
Diagnosis
08/2021
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US
State
WA
City
Bellingham and Scottsdale
Mana, my PALS and I had just turned 81 when ALS was finally diagnosed last August. And like others, his poor walking was thought to be the result of neuropathy and spinal issues. Though he can barely stay on his feet, he can ride a recumbent trike, so we immediately moved to a condo on a great trail and he rides twice a day. There are new challenges each day and I appreciate that I can learn from others and vent on this forum. This is a wicked disease. Hang in there.
 

Mana

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CALS
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01/2022
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Thank you so much for telling me this. We are both so tired and cranky with getting moved in, it feels overwhelming. My PALS did try out his new leg brace and trek pole yesterday for a brief walk and we had a zoom visit with old friends. Now, reading your message I feel less isolated.
 
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