We both have Parkinson’s

Hi I’m Julie (65) had PD 8+yrs. my husband who is 68 and has heart problems was also diagnosed with PD 2yrs ago. So we have no Carers as such we work as a team as best we can drawing on our strengths. We have both definitely deteriorated during lockdown and I am worried about the future. One of my main debilitating problems, besides the extreme fatigue, is postural instability and backwards falling. His is fatigue with joint pain and co-ordination plus memory issues. Was a keen walker and played Lawn Bowls in summer and Table Tennis in winter. He was struggling with these before lockdown. Following my last fall our PD nurse told me I needed to start thinking about about the future and how we were going to manage things to remain in our own home. I found this quite upsetting. Are there other couples out there in the same situation and how are you managing.

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I found my PD nurse quite harsh and I got quite upset. She kept referring to my carer. Told me to consider organising power of attorney and an advocate. Kept telling me to hold the table to stand up. I had to bite my tongue hard not to be rude to her. I had driven myself to the appointment, I work full time, run my own department and don’t have an issue raising from a chair. I think at times they just generalise and don’t think about the individual. Keep fighting to keep your independence, stay positive.

Hi @JulieH and welcome to our friendly forum. You certainly have a lot on your hands and mind, but you’ve come to the right place for support. I see that @JSB has already shared some of her experience with you, and I know that others will be along soon to tell you more.

I’d also encourage you to read our pages at https://www.parkinsons.org.uk/information-and-support, and to contact our helpline and local advisers to find out what other support there might be out there for you as you contemplate the future. Call us on 0808 800 0303.

Best wishes,
Forum Moderation Team

We don’t both have Parkinsons but my husband has Parkinsons and I have Myasthenia generalised, not a well know condition only about 2000 in 63 million people in the UK have it. A lot of symptoms can be similar to the parkinsons symptoms. We don’t have a carer as such. Our two sons help when they can with shopping and the like and we have a cleaner for two hours a week when not on lockdown. We have handrails around the house and I have a chair beside the washer so I can sit to load or unload it and a stool in the kitchen that I sit on while I’m cooking, I also bought a folding trolley for transporting things around the ground floor so I don’t have to carry them. Little things like that help. Good luck

Hi Julie my husband has Parkinson’s with Lewy body dementia I have cardiomyopathy our pd nurse was very unhelpful when my husband started hallucinating back last year she just shrugged it off, but he then got taken into hospital where with in a week he was diagnosed with Lewy body dementia,he is now under the young onset dementia team who are very helpful and always there to help. Parkinson clinic do their usual cancelled appointments and not keeping a check on him . We have carers in the mornings to get him washed and dressed. And have adapted the house to help not just him but me as well.

Hi Julie,
I’m 65 and was diagnosed 10 years ago. I’m doing well on Levodopa. My husband, who is 77 was diagnosed with PD a few months ago. He is having more problems than I am and his most troubling symptoms are non-motor and not typically controlled with medication. We are waiting on further testing but I fairly certain that he has cognitive impairment (possibly LBD). Although we both have PD, many couples have disabling conditions though rarely is it the same disease. We manage to take care of each other with no outside help yet but when we can’t we will start using home health. We have downsized to a small ranch house. I’m trying to convince my husband that we need to make some modification now (mainly a larger shower that will accommodate a wheel chair). He doesn’t want to think about such things so I will probably just have to arrange for these changes myself. Driving is also becoming a problem but we do have elder transportation services available. We are okay in our small town but can’t manage freeways or busy traffic. I have always done all of the meal planning and preparation but we now order in quite a lot or just have a simple salad. It sounds like you and your husband work well together so hopefully you will be able to manage for a while longer without help. Best of luck to you both.

Hi JulieH my heart goes out to you it’s hard, I myself have PD and had just been dianosed with charppel tunnel in both hands. Plus other women trubles. My husband too has an heart and REM. This lockdown has done all who have PD no good at all. HY HO we keep going. You do not say if you have any family to help but I myself have a walking shower which i would never go back to a bath, there is such a lot of choice out there. Cleaning i would give my bathroom a good clean in 1/2 hours now it take me nealy all day so I am going to get help. My neighboure has an illness and a young man and his wife take her shopping, do the cleaning she ask to be done, so I am going to ask them to call. LETS MAKE LIFE EASYER if we can. Bowling now the season has just started i am trying but my bowls only go half way, as for finding the line, well don’t know how long i will keep trying, but this is lawn green bowling so again make it easy lets go in doors (not as good) but its exacise. keep posting there are lots of us who will help you are not alone. one more thing when i was dianosed with PD we sold our house and went to live in a bungalow with the housing assocation Anchor, Best thing we did the windows get cleaned the gardens are done bot its still inderpent living and we have lots of nice friends aroud us, Well worth thinking about.