Our story so far

My husband diagnosed June 2018 age 49. I am currently 47. This wasn’t really the way either of us saw life panning out. At the mo he is on co-caraldopa (Sinemet type meds probably spelt wrong). He takes this 5 x per day. Due to struggling with restless leg syndrome he has also started taking another tablet to make others more effective- agonist type thing. We first went to doctors after noticing slurred and quiet speech for about 6 months. He was also shouting and punching in his sleep. Making nights in bed together interesting for all the wrong reasons. Initially his bloods showed a b12 deficiency and he was given booster jabs for 2 weeks and now has them every 3 months. Nights now more settled apart from the two weeks just before he is due for the next jab. He is currently ok slurred speech only when tired. He finds lack of dexterity with fine motor movements massively frustrating - eating his dinner with knife and fork takes ages. However he is a builder and still working. At the moment he is more agile and mobile due to meds’ than when first diagnosed. He suffers from a stiff neck, shoulder and back pain. He has intermittent pain down his leg. However we aren’t sure what is PD an what is normal wear and tear from a tough manual job. To be fair at the mo life is good. We have a 14 year old and making the most of every day. Not sure how long this luxury of a normal life will last but we treasuring every minute. Sorry for the enormous reply but this is our journey so far. No idea what our future holds. Such enormous news to take in. I’m guessing like us Everyone wants clarity about what their diagnosis means and implications. All we have been told is that PD is a boutique illness and different for everyone.

3 Likes

Hi Gerrty
I’m 38 my husband is 44. Diagnosed late last year. Similar symptoms. Shouting in sleep, mumbling, shuffling. Nowhere near how I pictured life once the kids were grown up and independent. On Co-careldopa 3 times a day but nowhere near as improved as the consultant made out. First review next week. Good days and bad days. For both of us. Trying to stay strong for everyone but I’m a bit heart broken to be honest. Sending you cyber hugs xx

Hi @Gertty, Anyone on here will confirm that we all have different strains of the disease and we all have different coping strategies. On the positive side at least he is still working and so able to still be active. I was a lorry driver on brick delivery for London, then Hanson and it is now under the Forterra flag but because I was operating heavy machinery(44 tonnes) I had to stop doing my job. The thing you will learn is that it is not instantly life changing in many cases and so I advise people to adopt a positive attitude and to carry on with their existing life as much as possible. Tell your husband to be and do the best he can everyday, there will come a time when he may have to tweak what he is doing but until that time comes ignore the fact that he has the disease. I also tell people, especially with tremors to make fun of their disability so that people shouldn’t be walking on eggs around them. I have a Deep Brain Stimulator which helps with Dopamine production, at the time I had it fitted we had told the Consultant that I had got two tremors but they poo pooed it and said it can only be Parky but they were proved wrong. In addition to the Parky I also have a Dystonic Tremor which i’ve had since my teens, so despite the DBS I still have a wobble on. You spoke about your husband shouting and punching in his sleep well, recently I was having a dream and it I punched a guy and when it happened I realised that I had struck out. Over breakfast my wife confirmed that I had punched her in the ribs which is not a good thing. I have been known to kick out but i’ve not been aware of doing this and have no recollection.

Hi @Momyali, Before you go for the review it is advisable to write a list of things to ask your Consultant and tell them that you’re not happy with the performance of the drug your husband is on. The same advise I gave Gerrty is the same I give to you, stay positive and don’t take any rubbish from your Consultant. Hold your ground, I know you want the best for your husband and this is the way to do it. Let us know how you get on next week. Take good care of yourself and your husband.

Les

1 Like

Thank you @cruisecontroller, that’s good advice. I will note down what’s been happening. Very easy to forget and feel overwhelmed once you’re in the consultation room. Hubby was in tears last night frustrated at how little the medication is helping. He’s gait is terrible. Either walks on his toes, limps or walks speedily with a very straight back like a robot. When the medication works it’s like he’s back to his old self but the ‘off’ moments are very difficult for him. Will update you next week and thank you once again.

Hi @Momyali, No problem, i’m usually floating about and pop on here once or twice a week. I look forward to seeing your husbands results, the most important thing at the moment is to get the right medication or dosage. As I said write down EVERYTHING no matter how insignificant. Take care and have yourselves a great weekend.

Les

1 Like

Hello Gertty,
I am 60 and was diagnosed two and a half years ago with Parkinsons, I am also on Sinemet plus four times a day plus a slow release tablet at night time as I was shouting and moving about a lot in bed, it has calmed me down at night.I feel I am only mildly affected at the moment as my walking is the only outwardly sign that there is anything wrong with me - I have a limp. I am still working ( cant afford to give up yet as would not qualify for PIP ) I am a painter and decorator but I am struggling, I tire very quickly and when on my hands and knees I am jiggling about like a fool. I try to have a few days off between jobs to give myself recovery time but at this time of year it is very quiet anyway so not so much of a problem. Like your husband it is the small motor movements that are difficult, I struggle with washing up and buttoning up shirts etc. I feel I have lost my stamina so started boxing exercise classes as I had heard they were good for co-ordination and building core strength but although I enjoy it it has’nt really helped with my work. Everyone says I look well when they see me but that only annoys me as I then feel it must be me making too much fuss about my problems. It is difficult to remain positive.
Decor8

1 Like

Hi @Gertty,
My husband was diagnosed 12 years ago and had/has similar symptons. The shouting and thrashing in his sleep increased in the last few years and eventually he was given Circadin to help control the vivid dreams and lashing out. We sleep in seperate beds now as my sleep was so disturbed and I was worried about getting hurt again, as one night he attacked me in his sleep thinking I was hurting his brother. It was very frightening and he woke up but had no recollection in the morning even though we’d talked about it during the night. It must be very difficult having a young family and I really feel for you. There is no turning the clock back or choosing to alter your life style as it is a degenerative illness. I can only suggest that you keep doing things for yourself and build up support and ways you will be able to have small breaks (or longer ones!!) having support of family and friends being able to let off steam is important. Look after yourself and keep doing as normal things together as possible.

1 Like

Went to my husband’s review appointment on Wednesday. Levodopa increased from 125mg 3 times a day to 4. The consultant was chirpy and thought my husband looked great - but then he hasn’t witnessed his wearing off periods! Relief from meds lasts 2 hours at most. I can’t see him returning to work if I’m honest. He’s been off 5 months so far. He’s just not stable enough.
The next step is a PD nurse will contact us and they’re going to do gene testing.
I’m going to contact SS to see what help there is and I’ve sent off his PIP form.
A bit disappointed the meds are not working the way I imagined. He struggles a trip to the supermarket so holidays out of the question in the near future - maybe for the best given current affairs!
Taking each day as it comes.