Greetings - newly diagnosed 1-25-23

[Ynara]

Hello everyone.

I was diagnosed in January of 2023 as the title states. I suppose I am not truly newly diagnosed but I AM new to these forums, having been directed here by one of the people I see at our ALS clinic. I am glad they directed me here as there seems to be many members with a vast amount of knowledge regarding this insidious disease.

My road to diagnosis was a somewhat lengthy one, starting in late 2020 with me noticing difficulty pronouncing certain words and swallowing abnormalities and culminating with finally getting a referral to a Neurologist, at my insistence, after making a bullet list of all of my symptoms that had previously been mostly ignored. I have since learned to speak up for myself and be an advocate for myself. I acquired foot drop on my left foot somewhere around the end of 2021, early 2022 which caused a fall where I face planted and knocked 3 of my front teeth out. If a detailed road to diagnosis is beneficial I can post one but I have a tendency to be somewhat wordy.

As of today, I have moved to be close to my daughter (who is struggling to cope with this as am I) and am now in an electric wheelchair (thank you for loaner, ALS closet, until mine is delivered in a couple weeks) full time due to being a fall risk. I am still able to propel myself out of bed and into the wheelchair (as my right leg is still relatively strong, but getting weaker), from the wheelchair to the toilet (with a riser) and from toilet to wheelchair.

My upper body is effected but I am so far spared debilitating weakness for the most part and am still able to do the things I love (kindness rock painting, resin work, computer gaming, I'm a geek) and while I am in assisted living (which I truly have had a very difficult adjustment period going from totally independent to having my personal life invaded multiple times a day) I am still able to care for (and have) my cat, Ivy, who gives great purr therapy and snuggles me close every night as I go to sleep and every morning as I wake up. I am still trying to figure out a way to keep her from pinning my legs down.

I am also fighting to hold on to the ability to get myself out of bed and to the toilet as when I lose these abilities, I will also lose my Ivy as I will be forced into the nursing home area. My daughter and I need to actually meet with the nursing director to make sure what options might be available to me at that time, but all information so far points to me having to go into the skilled nursing home section. I won't say I'm not a bit disappointed (and angry) that I cannot live in my daughter's home, but I've been told in no uncertain terms that this just is not doable. So I am trying to get okay with it.

While I am sad that any of us are here, I am grateful to have guidance and to know that there is support for those of us who are new to this life. While each journey is different, how we navigate our daily challenges can look very similar.

By the way, I did genetic testing and was negative for all known gene mutations (to this point, as my Neurologist says) but my father did have a very aggressive form of MS (diagnosed in his mid thirties, just prior to my birth) and lived 15 years bedridden and cared for by my mother and myself (when I got old enough) in our home. While it was not ALS, it was just as devastating. I know what mother went through to keep him in our home, bed-sore free, for the 15 years he was with us after his diagnosis (70 years ago). Her dedication to his care was constant. She did whatever it took.

Thanks for reading.
Debbie (user name is my gaming moniker)

 

[lgelb]

Welcome, Debbie, while sorry you are here.

As a cat person myself, I hate to think of your losing access to Ivy. And you do not want to transfer past the time you should, and have a potentially catastrophic fall.

Could the resources earmarked for your SNF care perhaps be applied to private help in your assisted living place or in an apartment of your own?

Ask us anything...

--Laurie

 

[Nikki J]

Hi Debbie

Agree with Laurie. Also a cat person. Hoping that I can manage long enough not to have to rehome mine. If you have not already look at alternate litter systems. I just changed to breeze and so much easier ( a small issue among the many big one in als of course )

Do talk to the assisted living people and also consider living independently with homecare especially if your daughter will support you/ keep an eye on you. We have had a number of single members manage this.

 

[KimT]

Hi Debbie,

I'm both a cat and dog person. My Cornish Rex cat went to a very close friend after I tripped over her and fell twice. I can visit her and she can visit me. I'm hoping to outlive my 10 year old Toy Fox Terrier, Ace. He was trained as a directional hearing dog when I was misdiagnosed with Meniere's disease. He's been with me since he was 10 weeks old.
When I was diagnosed, I lived alone. A friend offered to buy a big condo with me on the beach. We've been here nearly seven years. He's definitely not a caregiver but he takes care of Ace and is very attached to him. If I go, Ace will be fine.
I'm hoping to stay here. I have no children so it will be up to private carers to help out when the time comes.
Take all the help you can. If friends, relatives, work associates ask to help, let them.

My friend/cousin sends me pictures and videos of my cat every week. She has another Cornie to play with and two standard poodles to annoy.

I'm so sorry you were dx but happy you found this forum.

 

[Ynara]

Thank you for the welcome and for the information. I am not sure what SNF is? I have never had to really deal with any type of caregiving services. My daughter is very lost as well. We do go to ALS clinic. We foot the bill for this facility ourselves (house sale money and my retirement at the moment). My daughter has never had to deal with anything remotely resembling what we are facing and while I did try to prepare her for what was to come, I think she prefers to remain in the dark until a new situation rears its ugly head. I understand it is a bleak picture, but I believe in being as prepared as I can be to face whatever is coming next.

Most of our issues center around not knowing what to ask or who to ask. We do speak to the care coordinator at clinic and she has been very helpful. The next step for me medically is most likely to get a feeding tube, but again, that will kick me into the nursing home and I will lose Ivy. Thankfully I am still able to eat fairly well as long as I eat slowly and chew, chew, chew! I have been switched to a BiPap and have a Pulmonologist. My FVC was 57% when I had my initial visit, which somewhat surprised me as my breathing was tested prior to leaving Mobile and it was within normal limits. I feel that I breath fairly well but I do have moments after a coughing spell where I am very short of breath.

I know that a fall could be catastrophic and I assess my abilities daily to be sure I am able to do what I need to do safely. While the room I am in is in assisted living, amazingly it is not truly handicapped friendly. Toilet too low, sinks too high, etc. I do have my own electric wheelchair coming on the 9th of October after a very lengthy battle with insurance. It will have the lift on it thanks to Team Gleason. I also have a TobiDynavox system on order as my speech, while understandable still, has deteriorated. My voice is banked, thanks to a wonderful speech therapist in Mobile, Alabama, where I lived and received my diagnosis, and thanks again to Team Gleason. They are amazing. NWF

I did request that my daughter check into other options for my living situation when I was moved here. It apparently did not pan out. Her place is out of the question as it is her boyfriends place so no renovations could be done to accommodate me and my wheelchair etc.

I am a cat and dog person as well! Prior to my having to move I had Ivy and Penny, my doggo. Ivy loves dogs. She is not a fan of other cats. Penny went to a home where she is pampered and spoiled and I am very content in knowing that she has a great family. Prior to Ivy and Penny, I had a Chow, Keesha, then two rescue pups, Zeus and Roxanne (Roxy) (golden male and springer spaniel/lab mix female, both from same litter). When I to say goodbye to Roxy (old age) I opted to get a kitten (Ivy). She adopted me really. From the moment I walked into the kitten room at ARF she stood at my feet or in the chair beside me, or in my arms. We are really cat/human soul mates. She gets me, she knows when I need comfort and she is amazing. She also likes riding in the wheelchair.. which really surprised me.

I have rambled on too long as I am prone to do. Thank you for the welcome. I still have hope of finding a different living situation but for now I have learned to adjust (as ALS makes us do on a nearly daily basis) and will keep on doing what I love, and I am VERY grateful to have the ability to continue to paint, create, and do a bit of gaming with a good friend. I am grateful for the friends I have who still keep in touch as they are a treasure.

Debbie and Ivy

 

[lgelb]

"SNF" means skilled nursing facility, aka nursing home. Perhaps if your daughter is overwhelmed, you could speak with the care coordinator, your local ALSA/MDA chapter, and/or the city's senior services department about other options. I understand that her/her BF's place is not on the table, but as Nikki noted, it's not uncommon for a single person to manage with help.

If we can help with the "whom to ask" part in any respect, please let us know.

 

[KimT]

Debbie,
Regarding feeding tubes, I have two PALS friends who are doing their own feedings. Of course, that will change when they lose hand/arm function. Both had RIG procedures with no complications.
Here is a picture of Ace and another of Emily. When Em went to live with Leona, I photoshopped Ace's picture into her picture.
I've had three other cats and many dogs in my life. Schnauzer, Italian Greyhounds, and mixed breeds.
Kim

 

[Ynara]

They are so cute Kim! I love all animals. I used to consider myself a "dog" person more than a cat person, but Ivy has changed that in me. I'm an equal dog and cat person I would say.

Thanks for the info on SNF. I felt a little silly once you told me that. Not used to the shortcuts yet. I am also having to wait between postings at this time.

I have noticed a big decrease in strength in my left hand/arm in the past few days. I just want to keep maintaining but I am going to speak with my daughter tomorrow when we go to my heart doctor appointment to let her know that the appointment with the nursing home section needs to happen sooner rather than later. I am always stronger in the mornings but the evenings are getting pretty difficult. I have noticed lately that my left hand has tremors which is new as well.

I have been working on using up my blank rocks and stones. I am going to miss doing this once that ability is gone. I really enjoy giving stones away.

These are my furry kids: All taken prior to my move. They really loved playing together! Penny was such a perfect fit for our home.

I am trying to work through the anger I feel about having to give up Ivy. I am sure some would disagree with this, but honestly she is what has given me the will to keep fighting as hard as I have. The joy she brings to me each and every day is what gets me out of bed in the mornings. What I see in front of my daughter is a lot of heartache, hard work and at the end more heartache. All I can do is keep fighting. She knows what my wish would be if I could have it, and understands.

Thanks again to all.
Debbie and Ivy

 

[monique92760]

Your foot drop presentation is exactly how mine started in May of this year. I assumed there was some kind of cyst pushing on the paroneal nerve where it attaches to my tibia/fibula area up by my knee. I also pondered If I had some type of disc impingement in the lumbar region of my back around the sciatic nerve bundle but MRIs proved otherwise.

I should have known better; I've had no injuries in my back or leg and I've not had any pain! My general practitioner totally dropped the ball with trying to find a diagnosis so I switched to an orthopedic doc instead. He ordered a nerve conduction study.

The Neurologist said he was suspicious of ALS. I was shocked. "I'm too healthy", I thought. I was not on any meds. I have no medical conditions. I've done marathons. I've worked as a CT technologist for 38 years. All through Covid. (Tested for it last October because I had sniffles for a few days. I was positive but barely even felt sick) I've bragged for YEARS about my perfect work record because I never got sick! And here I am.

Though no two ALS cases are the same, yours and mine are almost identical in terms of the muscle loss and time frame. I had my other leg until this week and I'm starting to feel one of my arms weakening. I also enjoy art projects so I hate that will be taken from me soon. I have researched admitting myself into a snf unit so my family won't have to be burdened but until I have lost use of both my arms, I am taking all the help I can get here in my home.