Whirlwind - can I press pause?

[TinyLady]

So, having been misdiagnosed (possibly for as long as four years) I am finding myself overwhelmed the last week or two.

My diagnosis is still a "working diagnosis", although I have been told nothing else is a possibility now. My consultant just needs to confirm it in clinic when I attend in 10 days I believe.

However my GP has been informed it is MND (ALS), my referral to palliative care done, a DS1500 signed off and then the council came to assess me for a stair lift and wet room and told me it is not appropriate and I need a lift now.

I am really struggling due to my loss of function in left leg, left arm and speech, but now my right leg has started to go. With 6 near miss falls this week.... I'm bombarded with several appointments a day (and phone calls/ telephone appointments which are pointless as I can't use the phone any more).

This week alone so far I've had a bed rail fitted, power chair assessment, assessment for wet room and stairlift (now through floor lift), dietician appointment (20% body weight lost) an oximeter overnight and physio booked in and referral to palliative care neurogist. Plus how to pay for all this equipment...

I'm so grateful for all this support, but totally overwhelmed and a bit upset - with limited voice I feel so out of control of it all and I can't process everything. Does this intense period ease off?

My diagnosis isn't even confirmed yet (officially) and I just feel like hiding. Is this normal? Will it settle down? Is it because they need to catch up? I've also lost significant function the last two weeks which has shocked me and I'm trying to adjust and support my devastated family too.

Sorry for long post, I needed to share - feel free to ignore me 😆

[Lynne K]

Hi Tiny’ I hope that your official diagnosis comes quickly. It’s good about all of your appointments. It’s quite normal to be overwhelmed but we find taking each day as it comes helps, Lynne x

[matthew55]

What this forum is perfect for is ranting so rant away. We are here for you. 🤗👍👀😎xx

[Ellie]

TinyLady Yes, you can press pause on the appointments and assessments, not just now, but in the future.

To try and put some context on this flurry of activity:

Yes, I think they are playing catch-up.
We all get baseline testing to some degree, but it's not always done at such a frenetic pace.
If you want to priortise, respiratory function and weight loss are the two biggest indicators of survival in ALS, however, they may not be your biggest issues, so priortise which symptom is causing you most grief, and work down the list.

You do not have to pay for a powerchair and the OT will hopefully guide you through paying for your wetroom. Means tested council grants are available but forum members all complain this process takes way too long. The MNDA also have a grant scheme towards adaptations.

I'm sorry you're being overwhelmed by appts but yes, it certainly does settle down. xx

[TinyLady]

Thank you Ellie, matthew55 and Lynne K - I appreciate you listening and responding. My OT has gone sick for a month after an initial visit, so feel a bit like a fish out of water. But getting it all out as a rant felt good 😆

Not sure my worst issue. I can't really walk and struggle to get upstairs and out of a chair, can't get food, communicate clearly verbally etc and there are concerns about my breathing, I think my right arm is OK though 🙂. Hopefully after the clinic I will know more.

My biggest priority maybe is my care needs assessment - I am really struggling, but that seems to be the slowest thing!

I also feel like a fraud too, or there is some mistake. But from reading on here that seems normal too. So lucky to have got all of you 🙂

[LindaB]

TinyLady Its ok to slow things down....space out appointments, have days when you can just relax.

Take care xx

[Heather R]

TinyLady what a whirlwind of activity there has been for you, and I really identify with you about the difficulty with phone calls only makes it worse. I'm glad help is coming quickly for you, but I'm sure you haven't had the time to really process it all, can't be rushed! Hope you can find time and nurture for this. I found that in my initial panic I was over imagining symptoms and problems. All the best with it all xx

[Nettie]

It can all be a bit overwhelming at first, information overload, it will lessen with time and some even forget you exist I can’t remember last time I heard off speech and language therapist 🤦🏼♀️ X

[TinyLady]

I'm so glad you all understand - people who are fit and well don't seem to understand how tiring and overwhelming it is. They just seem delighted that I am finally getting help after struggling so long.

But they don't see the manic activity, calls and forms and the fact that I am still processing things. Also, very little of any help has actually happened yet, so in fact at this stage it is just more of a stress. I need to deal with work too at some point as I won't be able to return. That makes me very sad.

Had a quieter day today and a friend spent a couple of hours working from home at my house, which gives me company and reminds me of work 🤣

[Suefromwakey]

I found it totally frenetic to start with and even now somewhat down the road a bit the rounds of "Reviews" can be exhausting for me and I don't have MND,

not so long back I counted at least 20 people had come into the house for one thing and another during ONE WEEK, nobody ever seems to come solo always at least 2 of them, doesn't help with the social distancing, this last week a mere 5 have crossed the threshold,

One bloke came in last week and said "We meet again" interestingly I'd swear I'd never met him before..................the faces merge

[matthew55]

It does slow down. You end up missing it. 🤔😁😘😍xx

[DeeH]

Hey TinyLady

It is a bit frantic at the beginning. You have the right to say sorry I am a bit tired with everything. Can we reschedule next week (be careful of this and make sure not a so big a gap).

Apparently the through floor lift is the preferred lift now, as it is mostly future proof.

We had to move as in private rent, stair lift would have got an ok but not a through floor lift.
If we could have got a through floor lift we could have stayed.
We had to move to a much smaller ground floor housing association flat with wet room
(lucky to get it, I keep trying to remind myself when I miss my much bigger kitchen and garden)

That's what our OT said. See if you can get a riser recliner chair through the OT, this helped my husband getting up. Make sure you are measured for it as well.

We bought ours and it was not measured just from a mobility shop. Had problems with it as length ok but too wide.
Waiting for measured chair and have "Loaner" in the mean time. MND Association was great with some grants.

Good luck sorry you have joined the club.


Carer for husband, MND diagnoses in July 2020.

[Lynne K]

My RR chair cost me over £3000 with a contribution from the MNDA funds. Everything for disabled people is expensive xx

[matthew55]

True but we can't take it with us though. 😉😁😘😍xx

[DeeH]

My RR chair cost me over £3000 with a contribution from the MNDA funds. Everything for disabled people is expensive xx

But hopefully everyone will get told if their area OT funds the equipment. For example in our area Cheshire where Thomas was diagnosed, they did not fund riser chairs or chair of any kind.

We bought our one thousand pound (cost chair) as urgently needed.

It didn't survive 2 house moves in one year and couldn't be donated. Now on a skip somewhere.

Thomas in loaner chair, while the OT chases up the company. Now in Cumbria and they fund the chair but like the hospital bed and the Neater Eater.
I assume it will get returned when we no longer require it.

The loaner chair is much narrower, as we didn't know anything about chairs when we got it. So Thomas' arms are better supported.