A stressful time t home


#1
Hi!
I'm new to the forum. I just wanted the opportunity to share my experiences as its something I don't really talk about with my friends....

My Dad was diagnosed with PD nearly 7 years ago. For the first couple of years you could barely tell he had the disease then he had a knee replacement op which obviously limited his mobility for a while. Over the last year or so his movement has slowed down, things like putting on shoes and getting in and out of cars take a little longer than normal and he sometimes needs a hand up from the chair too? I went home this weekend though and things seemed a lot worse... His legs keep freezing on him and my mum also says that he has hallucinations nearly everyday now. I just felt sad after leaving this weekend as day to day things seemed more of a struggle and my mum seems down as well as she is worried. They are meeting with a Parkinson's nurse in 2 weeks swhich I hope will help but I'm just wandering if anyone else feels the same if their parents suffer from PD. I just feel so helpless and I know my dad is scared as he can see his disease progressing?!

Thanks for reading my first post :)

#2
Hi PinkLady1,

I'm fairly new to the forum also, but I do feel at home here and I'm sure you will too,
With lots of help and support available, from some very nice people.

I was diagnosed about 3 years ago but I've had PD for about 7 years and yes, it is progressive and yes it can be scary, but tell your Dad that he's not alone in this - we're all scared in varying degrees.

I've also slowed down a lot over the last year , and ditto on the shoes etc., and freezing is my main problem , and this can be very frightening for your Dad and of course your Mum.

Just tell him to wait until he can move - there's no rush , is there ? - and it gets easier by waiting.

No hallucinations, thank goodness, but this is usually related to medication, so a discussion with the PD nurse ASAP if I were you, don't wait for the appointment if everyone is worried.

I have started exercise classes and these do help with posture and movement, so it's worth checking if there's something available locally, as well as hydrotherapy .

It is clearly worrying for your Mum and she needs support also, so I would suggest looking up the local PD group, I'm sure that they will be able to ofer help and advice.

Good luck,

Mike age 66.

#3
Hi, I know exactly how you feel. I am struggling looking after my mum at the moment. I feel helpless at times and can see she is so frustrated with herself. She never complains, just takes it all in her stride. We do still try to laugh though, like the day I bought the wheelchair, I said if she didn't behave I would take her to the end of Southend Pier and leave her there!! She did giggle at that. I told her that it was pay back time to the time when I was first born and she left me outside a shop and came home - forgot she had me!! LOL. I lost my dad when I was 13 and my mum has never remarried. Try to take your mum out for mum/daughter time if you can leave your Dad at all. I miss not being able to do that now. We have a fantastic PD nurse and I don't know how I would cope without her. Mum also has a lung disease and has just been given oxygen therapy. She was quite upset having to be tubed up all the time and didn't want anyone to see her, but when my 4 year old grandson walked in and didn't bat an eyelid, just went over to her kissed her hello and went and got his toybox out the cupboard, that made it all good for her. That's what keeps me going, the little things that my sons and grandchildren and husband do that keeps it all 'normal' for my mum. I wish I had a magic wand to make it all better for the PD patients I really do, but unfortunately I dont. Make a list of questions to ask your PD nurse. Read the posts in this forum, I am new to the forum and have found reading the posts has helped me. I feel quite fortunate that my mum is 73 years of age with PD, so many young sufferers out there, I didn't realise. And laugh with your friends as often as possible. I know its hard, but keep strong. We are definately not alone. Faye x

#4
Hi thats good advice you got there to tell your Dad and Mum re freezing. Hallucinations may get stopped by the doc however if not can you get you're Dad to laugh about them? My h has freezing and hallucinations and what helps him is being open about it, helping him lots and not being too serious about it all. Sometimes its more difficult for the carer because they are observing it all, they need to relax love Sunray x

#5
Thank you to everyone who has posted a reply. Its good just to know that our situation isnt unique or rare.

We do laugh about the hallucinations afterwards as some of them you just couldnt make up... I've read that its quite often a side affect of the drugs so we're hoping the Parkinson's nurse can review this.

My Dad is quite laid back and makes light of his situation alot of the time so i know he has the personality to handle things but like you say everyone gets scared....

I've vowed the phone home more on a regular basis (i normall opt for text messages) so that my Mum can tell me everything thats going on... My Dad can be left to fend for himself for the day so I will take my Mum out, although i think we both worry about leaving him on his own. Also though, its nice to go out as a family so I guess its about finding the balance...

Thank you again for sharing your stories, its really helpful and so far I'm enjoying the forum

#6
Hi Pinklady, your story really touched a cord with with me as I can relate to your situation. My mum has had PD for about the same time as your Dad and in the last year it has progressed and it came as a bit of a shock to me, she had me quite late in life so I am only 30 but she is 73 and I know it sounds selfish but I wasn't really expecting to have to deal with this yet

Has your Dad seen the nurse yet? you might notice a difference if they change his medication as in January this year my mum seemed to get a lot worse but they changed her meds and she improved a lot. It sounds like your Dad has a good attitude towards it though and you just have to do what you can to encourage it. I know it can be really worrying especially when you see the other parent but you just need to encourage your mum too. My Dad has just retired to look after my mum and I know when he was younger he always wanted to travel in his retirement so I have made it clear to him that he doesn't have to miss out on this just because of my mum as my boyfriend and I will step in for a weekend if he wants a weekend away.

You and your parents don't have to go through this on your own. If they are not members already it might be worth looking up a local Parkinson's UK group for them to attend, I go along with my parents once a month and it really helps us as a family.

If you ever need a chat or just someone to share with, we are here.xxx