Bulbar symptoms worsening, and persistent fasciculations

[SarahWP]

Hi there

I was diagnosed in August this year and have experienced a steady decline until the last 2-3 weeks when I’ve deteriorated quite rapidly. I now can’t walk at all unaided (& not far with a frame/rollator), my arms are weak, especially my left arm which has very little strength (also think my left hand is starting to get weak despite both hands/fingers being so far unaffected), I’m losing my (normally very healthy!) appetite as I get so tired chewing and swallowing- and my speech has pretty much completely gone now. I’m worried that I have Bulbar deterioration and that this means my remaining time might be very limited. Would these symptoms suggest that?

Secondly, I have - & always have had - persistent fasciculations all around my body - there’s rarely a time when at least 2 or 3 parts of my body aren’t twitching. I also get frequent cramps in my legs, mostly in the night & morning when I move after sleeping. Again, this is something I’ve had for a few months now though it’s becoming more frequent. It’s not overly painful so ive never sought medical advice for this , nor for the fasciculations. Do you think I should?

Thanks
Sarah

[Gillette]

Hi Sarah

I’m sorry that your symptoms are worsening, that’s miserable. If the symptoms are affecting your quality of life then it makes sense to seek help to ease them.

[Ellie]

Hi Sarah,

(MND Connect are off until Monday, so I'll give you my thoughts)

I'm sorry you're feeling despondent, I don't blame you, you're at a very difficult stage of the disease

I also used to get tired (fed up) chewing food and took an age to eat a meal - my tongue detiorated early on, so it was hard to move food around my mouth. I changed to only eating foods that required minimal chewing and could be cut up small (puréed foods make me gag) I have a feeding tube which takes so much pressure off me as I get most of my nutrition & fluids through it, but I still eat lunch orally. I don't eat meat, but know most meat can be very hard to chew so, if you do eat meat, make sure it's soft and can be finely chopped.
And, in this weather, stews and casseroles are great.

I know you're due to get a tube very soon, so maybe you can mix & match as I do and find textures that suit you, if safe to do so of course! Your SLT can help and you'll probably be assessed when you're in hospital.

You don't have to put up with cramps either - quinine & magnesium are good for them, as are CBD oil, heat and massage, especially with magnesium oil - ask your GP.

We kind of get used to the twitching! But some people say CBD oil reduces them, others say Riluzole does. They do lessen over time.

Big hug to you Sarah.

Love Ellie.

[SarahWP]

Thanks both.

I’m getting my peg fitted next week (hopefully I’ll be 3rd time lucky!) and my dietician has already brought me some supplement drinks as well. As for the cramps and fasciculations, I’m not really bothered by them, I just wondered if I should be as I’ve seen in a couple of places that fasciculations in particular are rare, but that hasn’t been my experience. The cramps are getting more frequent though so I think I will ask my GP for something for those.

Another concern is that walking around the house is getting harder and harder. I’m having a motorised wheelchair delivered soon, which I plan to use downstairs. As of yesterday I now have a stairlift too - hurray!! But upstairs, even though our house is by no means large, I’m struggling to walk any distance safely. I just have no balance and virtually no strength. Only this morning I fell for no good reason - not a bad fall and I wasn’t at all hurt as I was on carpet but we did have to get the Telecare guy out to lift me up (my wife hurriedly made me decent while we awaited his arrival!! 😳&#128556. But, knowing how this damn thing progresses I’m starting to wonder how much longer I’ll be able to walk upstairs at all. I’m also struggling a lot with getting into, out of & comfy in bed due to my lack of strength in my limbs. I’m getting a profiling bed soon tho so that will help.

So it all seems to be happening at the moment and I’m pretty low - which I hate because I’m generally a really positive person and I really don’t want to waste precious time being miserable. I’m having a day in bed today, to try to conserve some energy - the mere act of dressing myself exhausts me for a good while! I’ve even taken the executive decision not to wear a bra when I’m not going out as putting one on uses up a disproportionate amount of my energy reserves!!!

Sorry to whinge, it’s just all a bit overwhelming at the moment. I’m getting fantastic practical support from the MND team, but think maybe I need more emotional/palliative care support so we’re going to see what we can do about that. But any advice, experience etc anyone had would be much appreciated.

Sarah xxx

[miranda]

I’ve now adjusted my meals so I only eat soft food. If you like cream, it can be added to most things to make a slide down more easily. Like Ellie, I struggle to move food around my mouth so can’t chew anything. Hope you soon perk up and once your tube is fitted it will be one thing less to worry about.

[miranda]

Sorry I typed this before reading your last post. Just wanted to also suggest asking for another rollator for upstairs.

[Ellie]

Sarah, absolutely nothing wrong with having an occasional duvet day 😀

I am a great believer in using any aid which conserves my energy - although I fully understand why many people struggle to embrace them…

At the top of the stairs, I had a rollator upstairs too then, as I progressed, I used to transfer directly into a shower chair/commode from the stairlift and be wheeled into the bedroom.

I also have a hoist for getting into and out of bed. It isn’t always easy to accept these aids but, for me, they make my life easier, less tiring, less stressful and leave me with more energy to live my life.

Would you go to your local Day Hospice for some emotional wellbeing? Most offer programmes which include complementary therapies (massage, mindfulness, art therapy etc) as well as nursing, OT, physiotherapy & social workers.

Really hope it’s 3^rd time lucky for the PEG procedure!

Love Ellie.

[Sheila]

Hi Sarah,
I am the same as you with the chewing problems. It takes me ages to eat my tea etc. I live mostly on soft foods. Like mashed potato with butter. Things that are easy to go down. I know what you mean about walking around and feeling weak, my head has dropped as Well, so I got a soft neck brace from Amazon. The hospital cancelled my last 2 appointments for it. You are right it is so overwhelming, this time last year I was walking around normally. No speech now, just shows nothing is guaranteed.
Sending you best wishes and hugs
Sheila x

[Lynne K]

Sarah, I'm sorry that you've arrived at such a difficult place in your mnd journey too quickly. I wouldn't be surprised if it knocks your confidence. Very good advice already suggested.

I hope that you're enjoying your duvet day. That'd be the last thing that I'd want to do as lying in bed = severe pain so I'm dreading the day.

Good luck getting another walker or wheeled shower chair for upstairs as Ellie suggested, whatever will make things easier for you.

About the tiredness caused by getting dressed, on other days would asking your wife to help you get dressed be less tiring and it could be fun if you both can keep smiling whatever is thrown at you.

Good luck for next weeks PEG procedure, Lynne x

[Deb]

Hi Sarah

So sorry you have had such alot to cope with in such a short space of time. It's not surprising you feel very low and vulnerable. Its really hard sometimes to find the positives.

You have had really good advice already on here. I really struggled to use and accept I needed mobility aids initially and I didn't want to move house to something more suitable( ironically we were going to move before I was diagnosed so maybe I was just being awkward! ) Its hard to accept and you've had to do it quickly with no time to adjust to each change.

I cant weight bear anymore but I can transfer sideways from bed to shower chair/ toilet and then powerchair or riser recliner. I feel much safer and have more independence then when I was trying to walk although my husband stands in front of me when I transfer. My physio always says save your energy for what you want to do not what you have to do. I have a hoist ordered for when I need it, which would once have filled me with dread but now I can accept it. However it is easier for me as I have had some time to get used to it but it is still so new and raw for you.

Hope you enjoy your duvet day and are getting spoilt. Also hope all goes well with your PEG next week.

Big hugs
Love Debbie x

[SarahWP]

Thanks so much, these are great ideas. I don’t mind using aids that will help, it’s more a matter of not knowing what might work so these suggestions are great. Thank you. I’m with you - anything they leaves me more energy for fun stuff is fine by me! My MND care team have done a lot for me lately, it’s just that things are suddenly progressing so quickly that I can’t keep up. And I know I shouldn’t but I feel bad making a nuisance of myself.

I like the idea of a hoist and transfer seat at the top of the stairs, thank you. Also the soft neck support. I have a firm one but can’t open my mouth with it on and sound even more deranged when I try to speak! I’ll get onto amazon now - it’s my favourite pastime at the moment so that’s no hardship! (Though if you hear soon that I’m being divorced, you’ll know why!! 😬😂.)

Today i had a lightweight wheelchair delivered from Argos which I’ll use downstairs until my motorised one is hopefully delivered soon. From then on it will be for outdoor trips, such as going to hospital next week. And it means I can use my small Zimmer upstairs now. So hopefully things will start getting easier. I’ve been so determined to not give in and do as much as possible unaided but think I need to accept that I only have finite energy now, and choose how I spend it. You’re also right re getting Sue to help me get dressed. She has offered time and time again but I’ve been too stubborn. She’ll enjoy that as she thinks my dress sense is dubious at times!! 😂

We have requested emotional support but my MND coordinator has been off quite a bit lately so a planned meeting was cancelled and I’m not sure she’s done anything about it as she hasn’t been picking up emails either. Can’t be helped, but I think we’ve fallen through the cracks a bit unfortunately. We’re hoping to see her this week though. And she has arranged reiki for me and my wife so that will be nice.

Well, time to get up - there’s Strictly to be watched and wine to be drunk! 🍷

[Sheila]

It is surprising what you can get on Amazon, mine is a soft neck collar, quite good. I can't wait another month for the appointment. I also got my manual wheelchair from Amazon. Very handy for appointments etc. My husband helps me with my clothes, getting them off and on, we do have a laugh about it. I am thinking about reflexology sounds relaxing.
I hope you and sue enjoy this evening, and the wine.
Sheila x