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The long waiting game.

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  • matthew55
    replied
    One of the really great things is that they have to dismiss everything before finally getting to MND/ASL. I was very lucky that my ENT endoscopy showed my voice box was half dead. No brainer! 😉😁🤗😍xx

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  • shelly21
    replied
    Hi. Whilst waiting 5months for the MND neuro I was fast tracked for emg & mri. That helps the neuro when you do eventually see them.fast trackk should be two weeks. I do really understand as I waited 5months. You are at least planning for your physical changes which is what I also did. I also had been blood tests done for other mimics such as hsp. Maybe explain that if these tests are done prior to your neuro appointment it would prevent a delay in a diagnosis.

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  • matthew55
    replied
    Life is a pile of then we die.

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  • DeeH
    replied
    Petey

    Husband can transfer with my help. Lost safe walking in January but we think he got a chill from the house move a week before Christmas
    Which knocked his health.

    We believe he has had this since early 2019 at least, only diagnosed in July 2020

    The consultant doesn't class it as mobile because he can't get up on his own.

    It is a balance thing and as his arms don't work at all. So we conserve energy and prevent falls by using the wheelchair.

    When we asked last year about help to keep him on his feet longer ie physio

    we were told not to bother and no assistance was given

    Basically told to get used to the wheelchair, husband was not pleased

    he can manovre the wheelchair with his feet and propel the riser chair across the room if he is not careful.


    There are wooden humps between the rooms, OT has applied to get them removed as have to physically lift hubs and wheelchair over.

    Enjoy your bungalow



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  • DeeH
    replied
    HI

    Lynne K and Petey

    Thanks

    It has been a very long 14 months

    The council lady was out today to fill form for the wheelchair accessible door. It will take some time but process started.

    Council will pay as on the Universal Credit.

    They are UC, charging us 60 quid for the glorified cupboard which is the second bedroom.

    I will gird my loins for that fight next week as OT said we had to have it to future proof.

    I will not get in a rant about the bedroom tax in England were there are little to no one bed accessible places (FUME)


    All the rooms are rectangular so not the best.

    We can't get the beds together as I thought

    But thank goodness for housing assocciations but we had to wait to go through nearly all savings etc

    Plus move to a less populated area of the country.

    The shower is brilliant but the water does get worringly close to the door.

    The heating is great but waiting for first bill plus actually cooking with literal gas.

    All in all positive but I realise that I put all my effort in the last 14 months to get us a wheelchair friendly place.

    Now we have it and all my get up and go, has got up and went.

    Sitting surrounded by boxes and we will be up a creek if someone actually needs to sleep in the second bedroom, as full of boxes of our accumulative 100 years on planet earth.

    But celebrating 14 months diagnosed, will see what the consultant says in October, he is not exactly a ray of sunshine.

    We know it is incurable, gets worse but looking at the bright side is not denial.

    Have a great weekend

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  • Ellie
    replied
    Originally posted by matthew55 View Post
    Just think what it would be like without a council to help.
    America...

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  • matthew55
    replied
    Just think what it would be like without a council to help. Scary!🤔😁🤗😍xx

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  • Lynne K
    replied
    Dee, our Council was the same. An adapted ground floor flat turned out to be an unusable wet-room because the shower water ran into our hall. The front door opening wasn’t wide enough for my wheelchairs and the ramp which ran along the wall of our flat wasn’t wide enough to be able to turn and get indoors (even if the doorway was wide enough) More issues but most done. Just waiting on a wash and dry loo, a wider door for my bedroom and a remote front door. Council wheels turn very slowly. Lovely Lynne x
    Last edited by Lynne K; 24 September 2021, 09:10.

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  • Petey
    replied
    Thanks Dee. I'm sorry that your hubby is going through this. It sounds like your new flat is much better with a few adjustments. It must have been a really stressful year. Is your hubby still mobile? The bungalow we are buying has a wet room, which is one of the reasons we bought it but the doors are small and will need removing if I need a wheelchair in the future. I'm struggling to sleep now as when i lie down i get really strong tremor sensations through my legs. It's all very scary as I've been healthy until now and generally avoided going to the Drs. Finally getting my second COVID jab this week. I literally got the first one the day I got off the plane. So we've been back 8 weeks now. Sad summer is over.. it's getting chilly!

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  • DeeH
    replied
    Petey

    As an ex nurse I regret that I dismissed a lot of my partners early symptoms. But they were vague and put down to age and over training.
    Plus other things like maybe MS. He also refused to go to the doctor for months, which didn't help.

    The professionals put it down to arthritis. For a long time
    Until my partners fingers were completely curling, they said it was "Vikings Disease"
    And he was on a list for a hand op. This didn't happen as the look on the Rheumatologist face after the difference from March 2020 to July 2020
    Had an appointmant with a neuroligist within the week, lots of cancelations at the time due to COVID.

    His fingers were affected, the memorable occassion was he couldn't grip his bank card as it popped out of the machine
    and it was swallowed. This was strange at the time and we were puzzled.

    We are in rented property, stairs up to thebedroom and down to the bathroom. A total nightmare. He stumbled a lot.
    First move stuck us sleeping in the living room as the stairs became unsafe due to balance, quickly over a few weeks but I think it was his slow reaction time if he fell.
    He lost a lot of muscle around arms and shoulders give him a big bend in his neck and shoulders. This occured over time.
    His yoga kept getting worse. All through 2019.
    Yoga now that would be wonderful now.


    Have moved twice in the last 14 months since diagnosed, in July 2021. Now in a Housing Assocciation wheelchair accessable flat (sort of)
    Need the door changed so the wheelchair can get out. Wheelchair accessible just means wet room!!!!
    But feel very fortunate, the waiting list for bungalows was long. Buying would be more ideal and good luck, with what you decide.

    I can't advice but partner had signs we basically ignored back in 2019 and possiblely earlier.

    Uncertainty is horrible and I can't imagine waiting 2 months to see a neurologist. I second the advice to keep asking for a cancelation.

    Now we are in a better home, we can concentrate on quality of life. 5 months without a shower was not fun for Thomas my partner.

    Sorry for the ramble but I thought reading another experience would help.

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  • Petey
    replied
    Unfortunately, Still no luck. I tried ringing back and asking them to contact me if any cancellations but they did say it's highly unlikely due to the initially assessment appointments requiring 45minutes. I still have 5 weeks to wait now and that there will be more waiting after this appointment for an EMG/NCT. My calves are starting to feel "crampy" when i'm climbing stairs and my index fingers both are becoming stiff and painful when i try and open the fridge door or button a shirt. This was made worse when i tried to do the basic neurological tests that GPs do with my partner.I can still do it but it hurts at the base of my fingers. We're at a loss as my partner is pretty certain it cant be MND unless you have loss of function and i've read that there usually isnt associated pain with said loss of function. I've only read of one other person who had the feeling of "numbness" as an onset symptom that went onto be diagnosed with MND (although tingling seems a bit more common). I know statistically its unlikely especially at my age (my gp said i was too young to get it, which clearly isn't true), but it just feels like my body is falling apart from the inside but still OK from the outside appearances. On top of this, we are having to make tough decisions and choices based on the possibility that its MND. We moved back from abroad in the summer and are in the process of buying a bungalow (just in case).Currently living with the in-laws in a cottage where each room is on a different level, which is going to be less than ideal if my legs start giving up.

    Sorry for the rant. I think it's the uncertainty and having to give up on plans and make decisions based on what may be unfolding. I know everyone here is fighting a herculean battle on the daily, which gives me a little bit of perspective.
    Last edited by Petey; 20 September 2021, 06:17.

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  • Mary C
    replied
    PeterPan Thats exactly what I meant...Let’s hope Petey gets early appointment.
    ​​​​​​​Mary

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  • PeterPan
    replied
    I found that if you can develop a good relationship with a Consultant’s secretary, it can be really advantageous. Meant I could get an ‘overbooked’ appointment with my NHS consultant to discuss test results within three days (about this time last year).

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  • Mary C
    replied
    Petey ..That’s the style..start 9 am Monday with making a phone call.Get name of who you are talking to.Good luck
    Mary

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  • Lynne K
    replied
    Good luck for a cancellation Petey. Lynne x

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