New to posting on site


#1

Hi everyone ! Have been reading some of the topics so thought I’d join in. I was originally diagnosed with Corticobasal degeneration (CBD) in June 2017. However another consultant ,and following various scans etc, has now come up with Parkinsonism .whatever it is, it’s completely changed my life. I have lost confidence to participate in anything, having spent the best part of a year in denial. How do you come to terms with knowing you are physically unable to do the things you used to. I used to line dance,go for five mile walks and play guitar. Not anymore as my muscles have virtually gone and have no strength to even push a vacuum round the house. Going out on my own is a no-no as I tend to look downwards quite a lot so am not as aware of things around me-feel so vulnerable.

My consultant has just started me on Madopar and although it seems to have lifted my mood it’s early days.
I am 60 ,married with no children and on my own most days as hubby still working fulll time. Had to give up my job at Xmas as couldn’t keep up on the computer- left hand rigidity. I do have the company of two cockatoos!


#2

Hi Madlizzie,

Welcome to the forum!

I’m sure a few of the others will be a long to say hello shortly, but I just wanted to remind you that if you ever need advice or someone to talk to then the Parkinson’s UK helpline is free to call 0808 800 0303. We’re open from 9am-7pm Monday-Friday and 10am-2pm on Saturdays.

Best wishes,

Tom


#3

Hi Madlizzie

Pushing a vacuum round the house is the last thing I would want to have the energy to do, b ut you do need to try to build up your strength. Any sort of movement would help and you will feel better afterwards. You may be able to find some easy exercises on youtube. I was never one to exercise but I do find it helps to keep moving, and I feel better for it. I don’t know where you are, but there is probably some sort of support available in your area via this site.
Do have a look, and i hope you feel more cheerful soon.

Aith best wishes

Knine

Audrey


#4

Hi Audrey, thanks for advice. I do try to keep active but when the internal shakes start it’s really hard to do anything apart from get off my legs as they are so wobbly! Today as it is so lovely hubby and I went for a full English and afterwards I made myself go out for about an hour on my rollator, only about a mile in total but found a bit of strength in my legs. Must have been the sausage!
I live in Norfolk and know there is some form of support . It’s just that my confidence is so low so just need to bite the bullet to make contact.

Jayne


#5

Hello there, I am brand new and usually mess up things like this so please bear with me! I just read your posting and am struck by how much you are trying to come to terms with and being very very brave. I was diagnosed with Parky in 2009 and have never really accepted it, it makes me furious quite often and I let my temper fly as I think it does you good to let it out…but not in front of the grandkids or the dog, I keep it to myself. This week I was diagnosed with CLL which it turns out is leukemia. I will get more info this week or next, am waiting for an appointment to Mount Vernon, so wish me luck. Odd world isn’t it? Why on earth do these things happen? Anyway, the cockatoos sound like a laugh - do they talk? I have a little dog, he’s saved my life really. All the best to you and I hope you find a way to increase your stamina, I am thinking of buying some of those stretchy bands, they are supposed to firm you up. Take care of yourself.


#6

Hi Barbara,not really brave but what’s the other choice? It makes me angry too. To think of all the things I used to do is now becoming self destructive. I try to treat this as the ‘new’ normal as hubby is fed up with ‘I used to’. Hard on him as we’ve had to give up so much. I get this horrid internal shaking when my legs just feel like collapsing so can only sit down till it goes off a bit.
Sorry you have had further bad news,hope they can find something to give you some relief. My thoughts are with you. Your little dog sounds a great comfort.

My cockatoos say a few things but in the main are just cuddly! I often sit and let it all out with them, some relief as there is no one else. Don’t have children and quite isolated most days. I am trying to make myself get out on my rollator most days if it’s dry.can sit down if legs get the colly wobbles! Find it very hard to socialise as everyone seems so competent.
My physio gave me some stretchy bands but keep forgetting(lazy?) to use them as she has given me so many exercises to deal with and I get so exhausted. I try to do some things round the house to keep active but exercise classes are out as co ordination is off and can’t get to them or the gym as don’t drive.
Are you in the UK? I’m in Norfolk.


#7

Hi I have recently been diagnosed with pd I am struggling to come terms with it I have also bad depression which I am finding hard to get on top of . I have been a self employed builder all my life so therefore I always put work before hobbies this isn’t what I planned for retirement. Just wonder if anyone else in the same boat


#8

Hi Willy, yes in the same boat. Had planned a retirement in 5 years but have had to give up work early. So much for spending months in Corfu and just enjoying life!

We don’t have any children, so can’t take interest in that avenue. How about you? My house and garden were my (quite solitary)hobbies, along with line dancing and playing the guitar. All has been taken away. I find the worst physical symptom at the moment is the stiff facial muscles and the internal tremors that no one can see- so exhausting! And the depression just creeps up but trying not to medicate at the moment as trying Madopar to see if it helps with anything. Mine is Parkinsonism, diagnosed June 2017 and still don’t feel it’s real.
Best wishes to you, you are not alone!


#9

Hi Lizzie
Than you so much for replying - it’s so nice to get emails from human beings again rather than the dozen or so retailers who seem to write every day!

It’s strange you use the phrase ‘I used to’ to describe your life now, as I actually wrote a sort of poem along the same lines. If I get brave enough I’ll send it, it’s been read and liked so far by family and the few friends I seem to have left these days (Parkinsons is a big bore to most people who are lucky enough to be able bodied at my age)! Anyway it describes very well the land of ‘I used to be’…I find I can’t dwell on it as it would lead to terrible depression - my life is now minus partner, job, friends (most), holidays, social life, but for some reason I haven’t given up yet, despite this new blow, CLL. I do have grandchildren and the dog so maybe that’s the crux of it. I’m hanging on in there for them and hope for the best. You know Lizzie, almost every day there is some kind of medical breakthrough for something or other. I actually still believe that we will be rescued from this frustrating nonsense before too long.

What exactly is a rollator? It sounds interesting. I haven’t yet bought the rubber bands, I’m the sort who’s good at getting ideas but then leaving it there. I love the idea of parrots, used to have a neighbour who kept one and he had a vicious tongue (beak) and mimicked people like you wouldn’t believe. He could do the cat, a door closing, my ex partner laughing, the doorbell, the fire alarm, next door’s dog barking, the list is endless. But you had to get him in the right mood. He could be sullen and not say a word in an hour. OR he would launch into his repertoire the instant you got through the front door and you could not stop laughing. Hilarious. Maybe everybody should have one! Just keep away from the pointy end…

Bye for now, hope that’s made you smile.


#10

Hi Barbara, I know what you mean about getting ideas then doing nothing at least where exercise is concerned!
My rollator is a four wheeled seat with a basket and I use it to ferry things across the patio and to help me balance when I go for a walk. If my legs feel as if they are going to fail me then I just stop and have a sit down till I’m ready to go again!
My birds,male and female,have us in stitches if they start laughing as they sound like 2 machine guns going off! The male has had his fair share of human flesh over the early years but has now settled down. He is nearly 20 and the female nearly 30 and they do not like each other at all! Chin up!!


#11

Hi again

Forgot to say that I am indeed in the UK, near Cambridge and I know Norfolk/Suffolk pretty well…

Bye for now, Barbara


#12

I Hi it’s so good to hear from like minded people who know exactly how it feels to have Parkinsons . The majority of the public think Parkinson Disease means a person shaking .OH NO !!!that is the least of my problem .I too mourne all that I have lost . People say to me (you are doing well) great if you planned on using a mobility scooter a year after retiriring 13 years ago . I miss having holidays I miss my independence , and now my driving licence has gone. Right that’s my rant over.On the good side my gorgeous cavalier dog keeps my sane.He is 11now but we go out everyday and when he is tired or it starts raining he rides on my scooter. He is also very clever at walking backwards when he sees me wobbling towards him ,he’s no fool. Sorry if I’ve gone on a bit but there is only you lovely people who really know !!


#13

So sad to hear all this. I care for Mum 24/7 who’s had PD for over 30 years. She’s not an independent lady like you and relies totally on all that is provided … but through me she is able to enjoy so much. We go out, walk the dog, go shopping, even lunch in the local pub sometimes. Do you have anyone who can help you still enjoy some stuff too? I push Mum in her wheelchair and take her literally everywhere … providing she is not having one of her ‘bad days’.