So worried, I have had PAF for over 3 years now Neurologist says I probably have Parkinson’s but not diagnosing me yet

[gemsmum]

Last night I went into AF, not having had it for about 8 months, I have just gone back to normal again without Bisoprolol but pulse rate around 106 but regular. I use Bisoprolol as a PIP should I take one now to try and bring it back to my normal around 42. Think the reason was stress as my heading says Neurologist thinks I may have Parkinson’s but not diagnosing me yet, only symptom being chin tremor. Going to have a scan.

My daughter also wants us to move beside her as we have no family near us, but what is concerning me is we have lived in a a bungalow for 30 years but as her area is expensive and short of bungalows we would have to move to a two story house. This is all very stressing which I think was the cause of the AF.

Does any member of the forum have Parkinson’s, I am so worried and crying all the time. Is family more important than staying in a bungalow and area which we like? My daughter is also saying she will be able to help out as well as the grandchildren, I am 71 years old and probably if I don’t move now never will!! Thanks for any help, kind regards.

[jennydog]

I too am faced with downsizing. I am opting for " supported living." You must follow your instinct. I gather that it costs £10,000 to sell up & buy another house. I currently rent a stairlift which costs £40/month so a 2 storey house might be possible.

Re Parkinson's : I read yesterday that one of the first symptoms is loss of sense of smell. Is that your experience?

[cassie46]

Hi there - I am sorry to hear of your problems and cann't hep with your medical problems but do understand your housing problem.

I am 72 and hubby 76 and we live in a chalet style house, lots of room downstairs. I would love to move to my home town of Exeter but the house prices are to high, so that has been ruled out. We also considered moving to Norfolk, where my daughter lives but she lives in the more expensive part of Norfolk and we cannot find a 2 bedroom bungalow in our price range (we decided that if we moved it would only be to a bungalow because my husbands mobility is not good and will only worsen). There are plenty of 2/3 bedroom houses but we have ruled out this option because of the stairs and often very small downstairs space. So we have decided to stay (still wonder if it's the right thing) and give the house a makeover. Our 3rd bedroom is downstairs ( used as a study but easily a double bedroom) so if one of us cann't make the stairs then that is is sorted. We have a downstairs shower room so no problems there. We are at the moment having the garden re-done to be as maintenance free as possible. Other reasons are that we are close to all amenities doctor's surgery, hospital is close by, only 10 min drive. It is certainly not my choice of area (only moved here in 2001 when I remarried and this is where hubby worked). My daughter is an 1 /1/2 drive away so see her fairly frequently but certainly is not on hand as it were.

I think you will find it very difficult leaving a bungalow for a house, leaving somewhere you have lived for many years and have friends. I am sure that this is probably causing a lot of stress at the moment, which is not helping your AF. I hope you can sort this out soon, as I said above at times we are still not 100% sure that we are doing the right thing, I guess one of the reasons we have decided to stay is that a move would have been very stressful, I am not good at coping with that nowadays and not knowing if I would be happy in a new place. I really feel for you at the moment and wish you and your family well.

Cassie

ps: We did consider a flat, but with leasehold and charges decided not to go that way and because we have a dog and garden space was a problem or often no dogs.

[rosyG]

Hi

It sounds as if you have only mild symptoms of possible Parkinsons and there are many new treatments being researched so I would be quite relaxed about that. Regarding moving, I think it’s important to be near your doctors surgery. I find I can hardly ever get through so often just turn up ! Make sure your diet has enough potassium. I’ve found that reduced my AF to yearly episodes. Relax if yours has stopped now. Not sure about your meds as we can’t give advice there. Let us know how you get on

[meadfoot]

I am so sorry to hear your distress and little wonder your af has kicked in, I would be surprised if it hadn't with the stress you are going through.

I hope you soon get your scan and they give you a definitive diagnosis as currently it's all speculation and that is very hard to handle. Once you know what's what you will be able to make some sound decisions and you may find the house situation becomes an easier decision to make somehow at that point. Also please don't be pushed into making a decision, even though your family are doing it with the best intent, it has to be what you want and if your gut tells you something then it's most likely telling you the best answer.

With regard to moving closer to family, well I would have thought that a good idea in the past. However the closer I get to an age of making such decisions the less I think it a good idea in my case at any rate.

For me living close to a GP surgery where I feel safe is important as are my neighbours, friends and support systems around me. What if I move to a new area and then my family need to move for work for example, where would that leave me, isolated somewhere strange I guess unless I felt like moving to wherever they next move. Also do I want to commit to help out with grandchildren when I am not well myself. All these things need adding to the mix.

However I would await the diagnosis when things may well become more clear in your case. We are all very different. Best wishes. X

[gemsmum]

Thank you all for your replies they have been very helpful and maybe I need to wait a bit longer before making a decision. My heartbeat is still steady although faster than normal but decided not to take Bisoprolol as I have a low heartbeat anyway. Kind regards.

[Maisie1953]

Sorry to hear your dilemma. I was in your position last year and know exactly how you are feeling. I was diagnosed with Permanent AF almost 3 years ago. I had a fall and AF was diagnosed. Until then I was an active 63 year old working full time and enjoying life.

My husband and myself had lived in a village for 27 years. We had renovated it to our taste and had lovely neighbours but the village had no facilities. To get to our local shop, chemist, doctors etc was a car journey away. I became totally reliant on my husband.

We decided that we needed to move to a bungalow but they were few and far between and out of our price range unless we were prepared to do a lot of renovations. We had holidayed in West Wales (90 miles away) on many occasions and decided that we would consider a move.

That was 18 months ago. We are now settled into a beautiful bungalow in a village that has a Doctors,Pharmacy, supermarket, hairdresser and on local bus route. The neighbours are amazing and like us, most have moved into the area. We do not have children, and a small family eg brother and sister who have their own families.

You must go with you heart..... What is meant to be will be.

My best wishes for your health.

[Hidden]

So very sorry that you are facing this, try not to worry, it isn’t Parkinson’s until you have a definitive diagnosis, and could be something simpler.

Meadfoot’s words are very wise re moving house - you would need to be really sure that your family are settled and unlikely to move away. I would be very reluctant to move from my bungalow.

I find it very amusing that my hubby & I have so many friends, most of them older than us, who say ‘I’m not ready for a bungalow yet,’ as if it would be the end of the world for them. We saw it as future proofing our world when my knees got bad ( I have 2 lovely new ones now & stairs are not a problem). I have also lost count of people who have left the decision to move to a bungalow or flat or put in a stairlift too late, and have fallen downstairs, or stuck upstairs for weeks with an illness or bad back etc.

Perhaps I should have changed my user name to ‘lovemybungalow’ 🤣 😂

Pat x

[Storyjo1]

I have Essential Tremors which can be a precursor of Parkinson’s , and my husband has Parkinson’s. I have Afib and he does also. I am praying that I will not have Parkinson’s in my future, but who can say?

I am 76 and take too many pills already!!!