Hello All

I am brand new to this Group, so wanted to introduce myself. My name is Robbie and my husband, Terry, has recently been diagnosed with KD(DNA test). We moved to Vancouver Island,BC,from Manitoba within the last year. We were extremely fortunate to have found medical professionals here who referred us to a neurologist in Victoria, knowledgeable about Kennedys Disease. Neither of us had heard of it before and the diagnosis came as quite a shock at first. Since then,I have done a lot of research online, much of it at www.kennedysdisease.org How lost we would have been without this site and the internet! We have much to learn, but it is comforting to know that there is a community of others who share the same questions, fears and hope for the Future. I look forward to learning more here and getting to know others who share our condition.

Robbie

Good to meet you. Congratulations on a quick and correct diagnosis; many have been traumatized by an initial diagnosis of ALS - which is much, much worse. How old is your husband, and what symptoms is he experiencing?

Hi Cam,

Thanks for the welcome My husband will be 57 this month. His symptoms have been coming on slowly for years, we now realise. His main problem has been difficulty climbing stairs (which we thought was due to an old hip injury)and progressive weakness in his legs and arms. He is the first one in his family to be diagnosed with KD, but most of the males in his family have died at an earlier age, of other ailments. Thinking back, he now recalls his Grandmother's(on his Mother's side)brother, who walked with a shuffle like the one he has now, and we think that he might have been affected, but we'll never know for sure. My husband's sisters are both going for testing now, as they each have two sons.

Robbie

Has the move to warmer climates helped your husband's symptoms at all? The cold in Manitoba makes winter no fun at all.

I think your husband’s situation is normal. Our previous generation didn't have an SBMA diagnoses since it has only recently been developed (generational-ly speaking). I think many of the previous generation received an initial diagnoses of ALS. After symptoms didn't progress the diagnoses switched to a more generic NMD (neuromuscular disorder), specifics unknown.

The key for suspected SBMA is seeing NMD disorders only in the males on the mother’s side.

I had been initially diagnosed with ALS but the doc took a wait and see approach (I only had minor symptoms typical of SBMA - not really much to do about early stage ALS any way) and things didn't progress as expected for ALS. Luckily we didn't do the whole battery of ALS tests, which can be invasive and expensive. Years later I sprained my arm and in clinical eval looked into neurological issues because of other symptoms. Again I was luck in that the first neurologist I saw did some quick nerve conduction tests and referred me to UCSF. There I saw a doc that was the head of the ALS program and he recognized SBMA in the first exam. I had uncles on my mother’s side with NMD so that was a big clue. The DNA test confirmed SBMA.

The climate in B.C. is much milder than what we were accustomed to in Manitoba and not having to battle ice and snow (very often), should certainly help with mobility and balance.

Bob,

I can't imagine how frightening it must have been to get an initial diagnosis of ALS. We consider ourselves very lucky to have found a neurologist here who suspected KD and tested for it on the first consultation. Now we know what we're dealing with (sort of) and can learn to live with whatever comes our way. The expenses for testing and consultation have been covered under the Canadian health care system here. We are very fortunate in that regard.

Robbie, thanks for sharing your story with us. We (the men) are extremely fortunate to have such loving, caring spouses. I can't imagine life without my wife. KD is often a lonely disease (most have us have gone through the "why me" phase). Having a significant other to share that with is important. We lived in Seattle for several years and enjoyed our treks to Victoria dn Vancouver, BC. We especially enjoyed the Gardens and watching the killer whale pods.

Thanks again for sharing.

Bruce, it's just so good to know there is a place here, where others are experiencing the same kinds of feelings and fears. I think the 'why me' stage is inevitable when one is diagnosed with any kind of chronic disease. Support is so important, to ensure that we don't get stuck there too long. Thanks for the support : ) Living here has really improved our outlook too...it's so beautiful, and we love being closer to Nature. The milder climate also helps my husband's mobility and balance.

Welcome Robbie. My husband had symptoms we kind if blew off too until he began falling and getting weaker. He went to quite a few Drs, one telling him he was in perfect health! Life with this is a much better outlook than ALS which we thought it was in the beginning. When told it was Kennedy's, we were thrilled because that meant we would be together for many more years.

I think the cold does affect my husband, luckily it is warm here 10 months a year! (Windows are open today, it is GORGEOUS!)

hi everyone
I think A few people living with KD do take medicines endorsed by their restorative specialist to help assuage different side effects. Others have reported that extending activities assistance with issues and torment.
Together, through your help and raising money occasions, the Kennedy's Disease Association can help discover a cure or medicine.

This message has been edited. Last edited by: Bruce,