Wife needing some advice

Hi … my Husband, now 71, was diagnosed with Parkinson’s about 3 years ago just after we moved house! Though symptoms are mild, they do affect our and his every day life… the thing is his grandad, dad and uncle all had PD so it was half expected but a shock when the news was given after a series of memory tests… taken because my husband seemed to be having frequent short term memory problems. The main problem is lack of confidence to carry out fairly simple tasks such as texting or making phone calls, especially if kept on hold,… using the computer, just doesn’t… basic DIY… he retired at 65 and was elected for local councillor which he held for 4 years, was part of a local school’s governing body both of which involved performing some of the pre mentioned tasks… he was due to see his neurologist next week, 25/7 but because of Covid this is now to be a telephone call…he is currently taking 3 Sinemet a day, frequently has uncontrollable drooling, sleepiness, his walking pace is slower and finds difficulty motivating himself at times, to have a shower, get dressed etc… I started my own business last year as a bespoke daytime carer & homehelp, which he fully supported… but sometimes I feel guilty going out to work as he seems that he needs me much more at home and often starts a conversation or asks a question just as I’m leaving… I’m sorry for the lengthy message but the last few days have been quite testing and just need to speak or meet up, if allowed, social distance of course, with people in a similar situation. Thank you.

Hi @Dandy2020

Welcome to the forum. I am sorry to hear about the difficult time you and your husband are currently having, but I hope that you are able to find the support you need through the forum and I am sure the Parkinson’s community will soon respond with offers of help and advice.

However in the meantime, you can contact the Parkinson’s UK helpline on 0808 800 0303 or email [email protected] for more information and support. Our helpline is a free confidential service providing support to anyone affected by Parkinson’s and they can put you in touch with a Parkinson’s nurse or local adviser if required to help you both.

Kind regards,

Emily - moderation team

Hi Dandy, I am sorry you are struggling. I know only too well what it is like. My husband has had Parkinson’s for 13 years and dementia for 4 years, he is now 73. Motivation and coping with simple tasks has been an issue for many years. I wanted to let you know that he was prescribed Scopoderm patches for drooling recently, they reduced the drooling, but made him extremely unsteady, so much so, that he had 2 falls and either the patches or the falls have made his confusion much worse. I wish we had never tried them! He also needs me to be around much more now, lockdown has made this much worse. Can you get someone to be with him while you go out, for work or whatever? I would say you need to keep doing whatever you can for your own sanity. Take care,
Kas

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Hi Dandy - I feel for you. My husband is 74 and has many of the problems you are experiencing. Scopoderm patches have definitely helped him with the excess saliva though, and I don’t think they have made him more unsteady, so definitely worth a try.

The technical issues just get worse and worse though and I am constantly helping him to do minor tasks with the computer or ipad that were never a problem in the past. It’s very frustrating for both of us.

We’ve both had a mild (thank goodness!) case of Covid in the last couple of weeks and he is now spending a lot of the day asleep. I don’t know whether that will change or whether that’s the new pattern of life.

Hang in there. It’s not easy.

Helen

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Thank you, just good to know I’m not on my own x

Seems to me that your huband is not being given enough medication as my husband, without such bad symptoms is on a lot more even though his medication is being reduced because they now think he has the syndrome rather than PD. You are right to keep your business going and to get out of the house because you need something apart from looking after your husband, even as a carer for others if you enjoy it. It gives you a break from home and undoubtedly makes you a better, happier person which has got to be good for both of you. Your husband should be entitled to an attendance allowance which you could use to pay someone to help him when you are out. We use my husbands attendance allowance to pay for someone to clean and do the ironing as I too have a neurological problem which stops my muscles working properly. Chase up the neurologist for an appointment and make sure you go to your husbands appointments to give your take on his problems because if he is like my husband he will not be giving the neurologist all the information about his condition that the neurologist needs.